The Uninsured Population and Health Coverage

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Introduction

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Health coverage in the United States is marked by a blend of private and public insurance options that leaves about 8% of the population uninsured. This coverage system has evolved over the years, most recently with the implementation of the Affordable Care Act (ACA), which aimed to reduce the uninsured rate by expanding Medicaid, creating health insurance Marketplaces for individuals, and providing subsidies to make the coverage more affordable. Many factors, including economic conditions, federal and state policy changes, and significant health crises, such as the COVID-19 pandemic, influence the uninsured rate. The ACA and recent policy changes designed to protect coverage during the pandemic have led to increased health coverage overall; however, longstanding racial and ethnic disparities in coverage persist.

What is the Landscape of Health Care Coverage in the United States?

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Health coverage in the U.S. is a complex patchwork of private and public insurance coverage options. In 2022, most residents had private insurance coverage, with nearly half covered by an employer-based plan . About 1 in 5 U.S. residents received coverage through the Medicaid program, the federal and state-financed comprehensive health coverage program for low-income people. Another roughly 15% of the population had health coverage from the federal Medicare program, which covers seniors and people under age 65 with long-term disabilities. About 6% of the population had private non-group insurance either purchased through the ACA Marketplace or off-market, and just over 1% of the population was covered through the military’s Tricare program. The uninsured rate for the total population was 8.0% for the year (Figure 1). (In some cases, people have multiple forms of coverage. For example, about 13 million people are enrolled in both Medicare and Medicaid and are classified in these figures as covered by Medicaid.)

Health Insurance Coverage of the Total Population, 2022

Trends in the Uninsured Rate

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In 2022, there were 25.6 million nonelderly uninsured residents and the uninsured rate among the nonelderly population was 9.6%, the lowest rate in U.S. history (Figure 2). The analysis of the uninsured population focuses on coverage among nonelderly people since Medicare offers near-universal coverage for seniors, with just 457,000, or less than 1%, of people over age 65 uninsured.

Nonelderly Uninsured Rate, 2010-2022

Prior to the implementation of the ACA, gaps in the public insurance system and lack of access to affordable private coverage left over 40 million people without health insurance. The ACA expanded health insurance coverage by extending Medicaid coverage to nearly all adults with incomes up to 138% of the federal poverty level (FPL) (the poverty level in the continental U.S. is $14,580 for a single individual in 2024) and creating new health insurance Marketplaces through which individuals can purchase coverage with financial help to afford premiums and cost-sharing. Following the passage of the ACA in 2010 and the rollout of the coverage provisions, the number of nonelderly uninsured people dropped to 27 million in 2016. The ACA envisioned that all states would adopt the Medicaid expansion; however, a Supreme Court ruling in 2012 made expansion optional for states. As of early 2024, 40 states and Washington, D.C. had adopted the ACA’s Medicaid expansion (Figure 3).

Status of State Action on the Medicaid Expansion Decision

The declines in uninsured rates following implementation of the ACA coverage expansions were largest among poor and near-poor nonelderly individuals, particularly adults. People of color, who had higher uninsured rates than White people prior to 2014, had larger coverage gains from 2013 to 2016 than White people, although the coverage disparities were not eliminated.

Before implementation of the ACA, expansions of Medicaid coverage and the enactment of the Children’s Health Insurance Program (CHIP) helped to lower the uninsured rate for children. Changes in the 1980s and early 1990s expanded Medicaid eligibility levels for children and pregnant people, and the establishment of CHIP in 1997 provided coverage for children with incomes above Medicaid thresholds. When states implemented CHIP, extensive outreach efforts along with the adoption of streamlined processes facilitated enrollment of children in Medicaid and CHIP and reduced the number of uninsured children.

After declining through 2016, the number of uninsured people and the uninsured rate began increasing in 2017 and continued to grow through 2019. Generally favorable economic conditions as well as policy changes during the Trump Administration, such as reduced funding for outreach and enrollment assistance, encouraging periodic Medicaid eligibility checks, changes to immigration policy related to public charge rules, and approval of some demonstration waivers to restrict enrollment led to a decline in Medicaid enrollment, which likely contributed to the increase in uninsured people.  

With the arrival of the COVID-19 pandemic, policies adopted to protect coverage drove a decline in the uninsured population from 2019 to 2022. The Families First Coronavirus Response Act required states to keep people continuously enrolled in Medicaid in exchange for enhanced federal funding. (Medicaid continuous enrollment ended in March 2023.) In addition, the American Rescue Plan Act (ARPA) provided temporary enhanced ACA Marketplace subsidies to make Marketplace coverage more affordable, and these subsidies were renewed for another three years in the Inflation Reduction Act of 2022.

Who is Uninsured in the United States?

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Most people who are uninsured are nonelderly adults, in working low-income families, are people of color, and, reflecting geographic variation in income, immigration status, and the availability of public coverage, live in the South or West. In 2022, over 7 in 10 people who were uninsured were nonelderly adults and just over a quarter were children.

Nearly three-quarters (73.3%) of the nonelderly uninsured population had at least one full-time worker in their family and an additional 10.9% had a part-time worker in their family (Figure 4). More than 8 in 10 (80.8%) people who were uninsured were in families with incomes below 400% FPL in 2022 and nearly half (46.6%) had incomes below 200% FPL. People of color comprised over 62% of the nonelderly uninsured population in 2022 despite making up about 46% of nonelderly residents. Most uninsured individuals (75.6%) were U.S. citizens, while 24.4% were noncitizens in 2022. Nearly three-quarters lived in the South and West.

Family Work Status of the Nonelderly Uninsured, 2022

Nonelderly adults are more likely to be uninsured than children. The uninsured rate among children (5.1%) was less than half the rate among nonelderly adults (11.3%) in 2022, largely due to the broader availability of Medicaid and CHIP coverage for children than for adults. Among nonelderly adults, men had higher uninsured rates than women in 2022 (12.8% vs. 9.8%).

Reflecting persistent disparities in coverage, people of color are generally more likely to be uninsured than White people. In 2022, nonelderly American Indian and Alaskan Native (AIAN) and Hispanic people had the highest uninsured rates at 19.1% and 18.0%, respectively, which were nearly three times higher than the uninsured rate for White people (6.6%). Uninsured rates for nonelderly Native Hawaiian or Pacific Islander (NHPI) (12.7%) and Black people (10.0%) were also higher than the rate for their White counterparts (Figure 5). These differences in uninsured rates are driven by lower rates of private coverage among these groups. Medicaid coverage helps to narrow these differences but does not fully offset them.

Uninsured Rates among the Nonelderly Population by Selected Characteristics, 2022

Noncitizens are more likely than citizens to be uninsured. The uninsured rate for recent immigrants, those who have been in the U.S. for less than five years, was 30.3% in 2022, while the uninsured rate for immigrants who have lived in the US for more than five years was 33.1%. By comparison, the uninsured rate for U.S.-born citizens was 7.7% and 9.5% for naturalized citizens in 2022. One in 4 children has an immigrant parent, including over 1 in 10 (12%) who are citizen children with at least one noncitizen parent.

Uninsured rates vary by state and by region and were generally higher in states that had not taken up the ACA Medicaid expansion in 2022 (Figure 6). Economic conditions, availability of employer-sponsored coverage, and demographics are other factors contributing to variation in uninsured rates across states.

Uninsured Rates Among the Nonelderly by State, 2022

Why are People Uninsured?

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The fragmented U.S. health coverage system leads to gaps in coverage. While employer-based insurance is the prevalent source of coverage for the nonelderly population, not all workers are offered coverage by their employer or, if offered, can afford their share of the premiums. Medicaid covers many low-income individuals, especially children, but eligibility for adults remains limited in most states that have not adopted the ACA Medicaid expansion. While subsidies for Marketplace coverage are available for many low and moderate-income people, few people can afford to purchase private coverage without financial assistance.

The cost of health coverage and care poses a challenge for the country broadly and is a significant barrier to coverage for people who are uninsured. In 2022, 64.2% of uninsured nonelderly adults said they were uninsured because coverage is not affordable, making it the most common reason cited for being uninsured (Figure 7). Other reasons included not being eligible for coverage (28.4%), not needing or wanting coverage (26.1%), and signing up being too difficult (22.2%).

Reasons for Being Uninsured Among Uninsured Nonelderly Adults, 2022

Not all workers have access to coverage through their jobs. In 2022, 60.7% of nonelderly uninsured workers worked for an employer that did not offer them health benefits. Among uninsured workers who are offered coverage by their employers, cost is often a barrier to taking up the offer. Low-income families with employer-based coverage spend a significantly higher share of their income toward premiums and out-of-pocket medical expenses compared to those with income above 200% FPL.

A decade after the implementation of the ACA coverage options, 10 states have not adopted the Medicaid expansion, leaving 1.5 million uninsured people without an affordable coverage option. A coverage gap exists in states that have not adopted the expansion for poor adults who earn too much to qualify for Medicaid coverage but not enough to be eligible for subsidies in the Marketplace.

Lawfully present immigrants generally must meet a five-year waiting period after receiving qualified immigration status before they can qualify for Medicaid. States have the option to cover eligible children and pregnant people without a waiting period, and as of January 2023, 35 states have elected the option for children and 26 states have taken up the option for lawfully present pregnant individuals. Lawfully present immigrants are eligible for Marketplace tax credits, including those who are not eligible for Medicaid because they have not met the five-year waiting period. However, the fear of the federal rules about “public charge,” which can deny an individual entry to the U.S. or adjustment to lawful permanent status (a green card) if it is determined the individual has a likelihood of becoming primarily dependent on the government for subsistence, can deter immigrants from seeking coverage. Undocumented immigrants are ineligible for federally-funded coverage, including Medicaid and Marketplace coverage.

Though financial assistance is available to many of the remaining uninsured under the ACA, not everyone who is uninsured is eligible for free or subsidized coverage. Six in 10 (15.3 million) uninsured individuals in 2022 were eligible for financial assistance through Medicaid or subsidized Marketplace coverage (Figure 8). However, 4 in 10 uninsured (10.3 million) were outside the reach of the ACA because their state did not expand Medicaid, their immigration status made them ineligible, or they were deemed to have access to an affordable Marketplace plan or offer of employer coverage (Figure 8).

Eligibility for Coverage Among the Nonelderly Uninsured Population, 2022

What are the Consequences of Being Uninsured?

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Lacking health insurance in the United States can impact a person’s access to health care, their financial situation, and their health status. It can also broadly impact a community’s public health (illustrated by the COVID-19 pandemic) and the economy through lower productivity.

Adults who are uninsured are four times more likely than adults with insurance to report not having a usual source of care, which is often a key entry point for accessing health care whether for preventive services or for treating existing conditions. Consequently, in 2022, nearly half (47.4%) of nonelderly uninsured adults reported not seeing a doctor or health care professional in the past 12 months compared to 16.6% with private insurance and 14.0% with public coverage. Uninsured individuals are also more likely to face cost barriers to accessing needed care. In 2022, 29% of uninsured adults reported delaying or not getting care due to cost compared to 6% of insured adults (Figure 9).

Percent of Adults Reporting Delaying or Going Without Medical Care Due to Cost, by Selected Characteristics, 2000–2022

The lack of access to health care and a delay in seeking care due to costs means uninsured people are more likely to be hospitalized for avoidable health problems and to experience declines in their overall health. Research also shows that when they are hospitalized, uninsured people receive fewer diagnostic and therapeutic services and have higher mortality rates than those with insurance.

Uninsured individuals often face unaffordable medical bills when they do seek care, which can lead to medical debt and other forms of financial instability. More than 6 in 10 (62%) uninsured adults report having health care debt compared to over 4 in 10 (44%) insured adults (Figure 10). Uninsured adults are more likely to face negative consequences due to health care debt, such as using up savings, having difficulty paying other living expenses, or borrowing money.

Difficulty Affording Health Costs and Health Care Debt Among Nonelderly Adults by Insurance Status, 2022

What are the Current Efforts to Increase Coverage?

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Proposals to expand health coverage have not been a focus of the current Congress. However, some states are considering legislation to expand coverage for specific populations. There has been renewed interest in the ACA Medicaid expansion among some of the 10 states that have yet to take up the option. In addition, several states have recently expanded fully state-funded coverage to certain groups of low-income people regardless of immigration status. As of early 2024, 12 states and Washington, D.C. cover income-eligible children regardless of immigration status and 5 states and Washington, D.C. cover some income-eligible adults regardless of immigration status . As part of the ARPA and then the Consolidated Appropriations Act of 2023 states were granted an option to extend Medicaid postpartum coverage to 12 months and 48 states and Washington, D.C. have taken up this option. Several states have received approval of Medicaid waivers to provide continuous eligibility for children from birth up to age six, and other states are pursuing similar waivers. A number of states are also seeking to provide 12 or 24 months of continuous eligibility for all or some adults. These waivers allow individuals to remain enrolled in Medicaid for the specified time period regardless of changes in income.

Future Outlook

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The number of people without insurance and the uninsured rate dropped to record lows in 2022 because of pandemic-era coverage policies that provided continuous enrollment in Medicaid and enhanced premium subsidies in the ACA Marketplaces. However, the end of the Medicaid continuous enrollment provision in March 2023 has likely contributed to an increase in the number of people who are uninsured as millions are disenrolled from the program. The magnitude of any increase will depend on whether individuals who are no longer eligible and are disenrolled from Medicaid transition to other coverage, including employer plans and the Marketplace and whether those who are disenrolled despite remaining eligible are able to re-enroll in Medicaid. While Marketplace signups have reached 21.4 million people, exceeding the record high in 2023 by 5 million people, a relatively small share of people disenrolled from Medicaid appear to be transitioning to Marketplace or Basic Health Plan coverage so far. The enhanced premium subsidies in the ACA Marketplace will expire at the end of 2025 if not extended by Congress, that will lead to large out-of-pocket premium increases for enrollees.

Enactment of the ACA helped close some gaps in our fragmented health coverage system. Still, economic conditions play a big role when most people receive coverage through an employer. The stability of the ACA will be a factor in the continued access to affordable coverage in the short term. While its favorable ratings among the public have improved in the past decade, some policymakers and political candidates continue to express a desire to repeal the law.

Resources

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Citation

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Tolbert, J., Drake, P., & Singh, R., The Uninsured Population and Health Coverage. In Altman, Drew (Editor), Health Policy 101, (KFF, May 28, 2024) https://www.kff.org/health-policy-101-the-uninsured-population-and-health-coverage/ (date accessed).

Health Care Costs and Affordability

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Introduction

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Health care costs in the United States have generally grown faster than inflation. The U.S. far exceeds other large and wealthy nations in per capita health spending, and health care represents a much larger share of the economy in the U.S. than in peer nations. Elevated health care expenditure in the U.S., however, does not consistently translate into superior health outcomes. Rising health care costs contribute to many people facing difficulties affording medical care and drugs, even among those with insurance. Despite substantial spending, the U.S. health system grapples with disparities and gaps in coverage.

How Has U.S. Health Care Spending Changed Over Time?

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Many people are familiar with the high and rising cost of health care in the United States from seeing how much they spend on their own health insurance premiums and out-of-pocket costs. In addition to these obvious health costs, there are also tax dollars that go to fund public programs and the amounts employers spend toward their employees’ health insurance premiums. Total national health expenditures include spending by both public programs and private health plans, as well as out-of-pocket health spending. Total health expenditures represent the amount spent on health care (such as doctor visits, hospital stays, and prescription drugs) and related activities (such as insurer overhead and profits, health research and infrastructure, and public health).

Total Health Spending Reached $4.5 Trillion in 2022

Total national health expenditures, US$, 1970-2022

Health spending in the U.S. has risen sharply over the last several decades. The official data on national health expenditures from the Centers for Medicare and Medicaid Services (CMS) show health spending totaled $74.1 billion in 1970. By 2000, health expenditures had reached about $1.4 trillion; in 2022, the amount spent on health tripled to $4.5 trillion. In the first year of the COVID-19 pandemic, health spending accelerated by 10.6% in 2020, even as the use of health care dropped, driven largely by public health spending and financial relief provided to health care providers. Health spending grew modestly from 2021 to 2022, by 4.1%, slightly faster than the 3.2% increase from 2020 to 2021.

In Figure 1, spending is shown in terms of both nominal dollar values (not inflation-adjusted) and constant 2022 dollars (inflation-adjusted based on the personal consumption expenditures, or PCE, index). Inflation in the rest of the economy increased faster than in the health sector in 2022.

Currently, health care represents about 17% of the U.S. economy (measured as a share of gross domestic product, or GDP). In other words, almost 1 out of every 5 dollars spent in the U.S. goes toward health care. Back in 1960, health spending represented just 5% of GDP, meaning 1 in every 20 dollars in the U.S. economy was spent on health care.

Per capita out-of-pocket expenditures, 1970-2022

Out-of-pocket costs have also risen over time. Out-of-pocket costs represent the amount of money spent by individuals on health care that is not paid for by a health insurance plan or public program like Medicare or Medicaid. This can include cost-sharing (i.e. copays, deductibles, coinsurance), as well as health spending by uninsured people or spending by insured people for care that is not covered at all by health insurance. Out-of-pocket spending does not include the amount spent on a person’s monthly health insurance premium.

Out-of-pocket spending per person was $115 in 1970 (or, adjusted for inflation, $677). By 2022, out-of-pocket spending had reached $1,425 per person. Despite this rise in out-of-pocket spending, health insurance now covers a larger share of total health spending (72%) than it did in 1970 (42%), in part because more people have gained coverage, especially public coverage, but also because health insurance spending per enrollee has grown.

What Factors Contribute to U.S. Health Care Spending?

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Over the last several decades, health spending has been driven higher by a number of factors, including but not limited to an aging population, rising rates of chronic conditions, advancements in medicine and new technologies, higher prices, and expansions of health insurance coverage. While there are always differences across countries, many of these factors driving health costs upward in the U.S. are also driving health costs growth in peer nations. For example, while the U.S. population is indeed aging and that is driving health costs up, many large and wealthy nations have even more rapidly aging populations.

Other factors may explain the United States’ relatively high health spending compared to its peers. The U.S. health system is fragmented, with many private and public payers, and the regulation of these payers is split between states and the federal government. However, these features are not unique to the U.S., either. Indeed, some other countries with much lower health spending have multiple private payers or differences in public programs across states or provinces. The U.S. is also not alone in having a mainly fee-for-service payment system.

The U.S. health insurance system is largely voluntary, whereas peer countries’ health systems are almost entirely compulsory. Additionally, the U.S. federal and state governments have generally done less to directly regulate or negotiate prices paid for medical services or prescription drugs than have governments of similarly large and wealthy nations. The U.S. often pays higher prices for the same brand-name prescription drugs, hospital procedures, and physician care than similarly large and wealthy countries.

There are other factors, largely outside the control of the health system, that also are likely at play, such as socioeconomic conditions (like income inequality and other social determinants of health), and differences in so-called lifestyle factors (like diet, drug use, or physical activity) that could contribute both to higher spending and worse outcomes.

Breaking total national health spending into its components can reveal the major drivers of health costs and where cost containment efforts could be most effective. The charts below show various ways of examining the key contributors of health spending. For example, the National Health Expenditure Accounts show trends in how health spending varies by type of service (e.g. hospital care vs. retail prescription drugs) or by source of funds (e.g. private health plans vs. public programs). An alternative and relatively new approach to understanding health spending is to break out total health spending into the share that goes to treat certain diseases (e.g. heart disease, cancer). Finally, health spending can also be better understood by looking at price trends (e.g. the dollar amount for a hospital stay) and utilization (e.g. the number of hospital stays).  

Hospital and Physician Services Represent Half of Total Health Spending

Relative contributions to total national health expenditures, by service type, 2022

Most health spending in the U.S. and peer countries is on hospital and physician care, followed by prescription drugs. In the U.S., hospital spending represented nearly a third (30.4%) of overall health spending in 2022, and physicians/clinics represented 19.8% of total spending. In comparison to other large and wealthy countries, the U.S.’s higher spending on inpatient and outpatient care explains the vast majority of higher spending on health care overall.

Spending Has Grown for Hospitals, Physicians, and Drugs

Average annual expenditures growth rate for select service types, 1970-2022

During the 1970s, growth in hospital expenditures outpaced other services, while prescriptions and physicians/clinics saw faster spending growth during the 1980s and 1990s. From 2020 to 2022, retail prescription drugs experienced the fastest growth in spending at 7.6%, following 3.3% average annual growth from 2010 to 2020. Average spending growth for hospitals and physicians/clinics between 2020 and 2022 was 3.4% and 4.0%, respectively.

On a Per-Enrollee Basis, Private Insurance Spending Has Typically Grown Much Faster Than Medicare and Medicaid Spending

Cumulative growth in per enrolled person spending by private insurance, Medicare, and Medicaid, 2008-2022

Per-enrollee spending by private insurance grew by 61.6% from 2008 to 2022 – much faster than both Medicare and Medicaid spending growth per enrollee (40.8% and 21.7%, respectively). Generally speaking, private insurance pays higher prices for health care than Medicare and Medicaid.

Per-enrollee spending for Medicaid rose by 2.2% in 2022 from the previous year and also continued to increase in private insurance and Medicare (4.3% and 3.8% respectively). Medicare and private insurance per enrollee spending continued to grow faster in 2021 and 2022 after slower growth in 2020. Medicaid per-enrollee spending previously declined in 2021 as total enrollment grew, particularly among children and non-elderly adults, who generally have lower per-enrollee spending.

A Substantial Share of Health Spending Goes Toward the Treatment of Circulatory and Musculoskeletal Conditions

Distribution of total medical services expenditures, by medical condition, 2021

An alternative way to examine the components of health spending is to use the Bureau of Economic Analysis (BEA)’s Health Care Satellite Account, which estimates spending and price growth by disease category (e.g. cancer, infectious disease). This approach differs from the official categorization of health spending by service type (e.g. provider services). Essentially, the new satellite account redefines the “commodity” in health care as the treatment for specific diseases rather than a hospital stay or a physician visit. BEA researchers found that the largest categories of medical services spending include the treatment of circulatory diseases (10.4% of health spending in 2021), musculoskeletal conditions (9.4%) and infectious diseases (9.0%). Another large share of health spending (15.1%) is for “ill-defined conditions,” which can include routine check-ups and follow-up care that is not easily designated for a particular illness.

Health Spending is a Function of Prices and Use

Annual percent change in price and quantity personal consumption expenditure indexes of health services, 1980-2021

Health services spending is generally a function of prices (e.g. the dollar amount charged for a hospital stay) and utilization (e.g. the number of hospital stays).

People and health plans in the U.S. often pay higher prices for the same prescription drugs or hospital procedures than those in other large and wealthy nations. Meanwhile, there is not much evidence that people in the U.S. use more health care. In fact, Americans generally have shorter average hospital stays and fewer physician visits per capita. Therefore, a large part of the difference in health spending between the U.S. and its peers can be explained by higher prices, more so than higher utilization.

Nonetheless, over time within the U.S., prices and utilization have driven health cost growth to varying degrees. In the 1980s and early 1990s, growth in health care prices far exceeded growth in use. Faster growth in health prices in the U.S. during this time drove the divergence in per capita health spending between the U.S. and other large, wealthy OECD countries. While U.S. health care prices have grown more moderately in recent decades, health services prices continue to exceed what other countries pay.

More recently, the COVID-19 pandemic has led to fluctuations in health care use. Early in the pandemic, many health services, such as elective surgeries, were postponed or canceled and many people elected not to get care to avoid infections at health care sites. In 2021, health services use increased by 8.6%. This increase in health care use in 2021 followed a sharp decrease in health utilization in 2020. Health care prices increased moderately in 2021 by 2.9%. A rebound in utilization and labor pressures are expected to put upward pressure on prices in recent years.

How Does Health Care Spending Vary Across the Population?

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A small portion of the population accounts for a large share of health spending in a given year. Although we tend to focus on averages, few people spend around the average since individual health needs vary over the life course. Some portions of the population (older adults and those with serious or chronic illnesses) require more and higher-cost health services than those who are younger, healthier, or otherwise in need of fewer or less costly services.

Older People and People with Significant Health Needs Account for Most Health Expenditures

Share of total population and total health spending, by age group and health status, 2021

While there are people with high spending at all ages, in 2021, people 55 and over accounted for 56% of total health spending despite making up only 31% of the population. In contrast, people under age 35 comprised 44% of the population but were responsible for only 21% of spending.

People with significant health needs account for a large portion of total health spending. People reporting fair or poor health status account for 10% of the population and 29% of the total health spending.

A Small Share of the Population Incurs Most of Health Spending

Share of total and out-of-pocket health spending, by percentile, 2021

In 2021, the 5% of people with the highest health spending accounted for just over half of total health spending and had an average of around $71,100 in health expenditures annually; people with health spending in the top 1% had average spending of over $160,000 per year. At the other end of the spectrum, the 50% of the population with total health spending below or equal to the 50th percentile accounted for only 3% of all health spending; the average spending for this group was $385. Roughly 14% of the population had $0 in health expenditures in 2021.

Out-of-pocket spending on health services is concentrated similarly to overall health spending. In Figure 9, out-of-pocket spending includes direct payments to providers and cost-sharing but does not include monthly premium payments or contributions towards health coverage. Out-of-pocket health spending is similarly concentrated among high-health-need individuals. This small portion of the population accounts for a substantial share of total out-of-pocket health spending in a year.

In 2021, people in the top 1% of out-of-pocket spending paid an average of about $24,490 out-of-pocket for health services per year, and people in the top 10% spent an average of around $6,190 out-of-pocket per year. People who are in the bottom 50% of out-of-pocket spending spent an average of $24 out-of-pocket.

How Do High Health Costs Affect Affordability of Care?

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In addition to being expensive for the nation as a whole, health care is often expensive for individuals. High health costs pose a particular hardship for people who are in worse health, and people with lower incomes. However, challenges with affording health care are not limited to certain groups — these challenges are pervasive across the U.S. Even people with private health insurance through their employers are often exposed to high deductibles and can therefore face affordability challenges. A substantial share of the population does not have enough savings or other liquid assets to afford the deductible or annual out-of-pocket maximum common in private health plans.

When health care is unaffordable, it can lead to cost-related access barriers for individuals, like forgoing or delaying needed medical care. For those who do receive care, this care can lead to medical debt and other forms of financial instability. Some people experience both affordability challenges, missing some needed care and incurring medical debt for other care.

Half of Adults Say it is Difficult to Afford Health Care Costs

Half of Adults Say it Is Difficult to Afford Health Care Costs, Including Large Shares of The Uninsured, Black and Hispanic Adults, and Those With Lower Incomes

About half of U.S. adults say it is difficult to afford health care costs (Figure 10), and one in four say they or a family member in their household had problems paying for health care in the past 12 months (Figure 11). People with lower incomes, people in fair or poor health, and the uninsured are particularly likely to report problems affording health care in the past year.

Among those under age 65, uninsured adults are more likely to say affording health care costs is difficult (85%) compared to those with health insurance coverage (47%).

Those who have health insurance coverage are not immune to the burden of health care costs. About 4 in 10 insured adults worry about affording their monthly health insurance premium, and 48% worry about affording their deductible before health insurance kicks in. Large shares of adults with employer-sponsored insurance (ESI), and those with Marketplace coverage, rate their insurance as “fair” or “poor” when it comes to their monthly premium and out-of-pocket costs to see a doctor.

1 in 4 Adults Report Putting Off Health Care Because of Cost

Six in Ten Uninsured Adults Say They Have Skipped or Postponed Getting Health Care They Needed in the Past 12 Months Due to Cost

Cost-related barriers to accessing health care are more common for some demographic groups than others. For example, people who are Hispanic, lower-income, in worse health, or uninsured tend to have higher rates of self-reported cost-related access barriers.

One-quarter of adults say that in the past 12 months, they have skipped or postponed getting health care they needed because of the cost, according to KFF polling. Women are more likely than men to say they have skipped or postponed getting care (28% vs. 21%). People aged 65 and older, most of whom are eligible for health care coverage through Medicare, are much less likely than younger age groups to say they have not gotten health care they needed because of cost. Six in 10 uninsured adults (61%) say they have skipped or postponed care for cost reasons. Additionally, insured people are not immune from cost-related barriers to accessing care, as 1 in 5 adults with insurance (21%) still report not getting health care they needed due to cost.

What Impact Do Health Care Costs Have on Financial Vulnerability?

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Despite the vast majority of the United States population having health insurance, medical debt is common. Different ways of measuring medical debt result in different estimates of prevalence, but regardless of the method, there is consensus that medical debt is a persistent and pervasive problem in the United States, including for people with insurance.

One way to examine medical debt is through credit reporting, but medical debt is often disguised as other forms of debt when people pay for medical bills on their credit cards or choose to pay off their medical bills while falling behind on other payments.

Another way to measure medical debt is with surveys, which can allow respondents to describe their debt in more detail, with nuance. Questions about medical debt and other financial matters can be difficult to compare across surveys. For example, it is not always clear whether respondents are answering about their personal experiences or about their broader family or household. Surveys may also differ in the way they define medical debt or describe what forms of debt to include. 

The KFF Health Care Debt Survey asked respondents to think about money that they currently owe for their own health or dental care or someone else’s, such as a family member or dependent. The KFF Health Care Debt Survey finds that 41% of adults currently have some form of debt caused by their own or a family member’s medical or dental bills.

Four In Ten Adults Currently Have Debt Due to Medical or Dental Bills

The U.S. Survey of Income and Program Participation (SIPP) asks whether money was owed for a medical bill and not paid in full during the past year for each person in the sample household. SIPP results, therefore, can be looked at on the individual level or for an overall household. This survey shows that about 1 in 12 adults have medical debt they owe for their own medical care in the past year.

Regardless of the survey used to examine medical debt, some common themes emerge when looking at differences across demographic groups. People who are Black, uninsured, lower-income, and in worse health are more likely to have medical debt. In particular, people with disabilities are much more likely to have significant medical debt, which, in addition to the burden of medical costs, could also reflect inadequate supplemental income for people who are unable to work due to disability or illness.

Nationally, Medical Debt Totals at Least $220 Billion

Share of aggregate total medical debt in the U.S., by the amount of debt individuals owe, 2021

The Consumer Financial Protection Bureau (CFPB) estimates that $88 billion in medical debt is reflected on Americans’ credit reports. However, credit reports may not capture all forms of medical debt. For example, medical debt disguised as credit card debt or money owed to family or friends may not be captured. Surveys may capture medical debt that is not visible on credit reports or is otherwise disguised as another form of debt. The 2021 Survey of Income and Program Participation suggests that total medical debt owed was at least $220 billion at the end of 2021.

Medical Debt is Associated with Financial Vulnerability Across a Range of Indicators

Medical Debt is Associated with Other Forms of Financial Vulnerability

The National Financial Capabilities Survey (NFCS) is a triennial survey sponsored by the FINRA Foundation that provides information on the financial security, experiences, and vulnerabilities of people and households.

People with medical debt are much more likely to have other forms of financial distress than those without medical debt. Indicators of financial vulnerability—such as spending more money than one’s income, having no “rainy day” fund, or agreeing with the statement “I am just getting by financially”—are more common among adults with medical debt than those without. Additionally, people with medical debt are more likely to overdraw their checking account, have a credit card balance that exposes them to interest payments, take a cash advance on their credit card, or report being contacted by debt collectors. People with medical debt are also much more likely to use payday loans or other costly loans than those without medical debt.

How Much is Health Care Spending Expected to Grow?

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Each year, actuaries from the Centers for Medicare and Medicaid Services (CMS) project future spending on health. With utilization continuing to return to pre-pandemic levels and price inflation in the health sector, per-person health spending is projected to rebound to an annual rate of 4.8% per capita on average from 2022 to 2031, which is slightly above pre-pandemic growth rates (average of 3.9% from 2014 to 2019).

Health spending as a percent of Gross Domestic Product (GDP), actual (2015 - 2022) and projected (2023 - 2031)

An aging population, labor pressure driving higher prices, and new high-cost prescription drugs coming to market are expected to contribute to a growth in health spending. Health spending was 17.4% of the U.S. economy in 2022 and is expected to reach 19.6% by the end of the decade.

The pandemic has had direct and indirect effects on the health system that can make projections difficult. COVID-19 has led to new costs for vaccination, testing, and treatment and has also caused other shifts in health utilization and spending. Some people avoided medical settings out of concern of contracting COVID and thus missed or delayed routine care or cancer screenings earlier in the pandemic. This could lead to pent-up demand, worsening health conditions, or more complex disease management going forward. Increased use of telemedicine could also shift spending patterns in the future. Additionally, the recent broad-based inflation trends in the economy and health sector employment trends also add to the uncertainty of these projections.

Federal Government Infusion of Public Health Funding Has Subsided Since Early in the COVID-19 Pandemic

Federal and state/local expenditures on public health, US $Billions, 1970-2022

Total national health spending includes spending on direct patient care, as well as spending on public health or prevention. After a sharp increase in 2020 driven by the federal response to the COVID-19 pandemic, spending on public health has fallen. Federal public health spending decreased by 27% from $139.3 billion in 2020 to $101.1 billion in 2021. In 2022, federal public health spending also decreased slightly (dropping $9 billion or 9%). Meanwhile, state and local public health spending grew by 6.3%, in line with previous years. Total public health spending is expected to continue to decline over the next couple of years.

Future Outlook

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Key policy issues will shape future health spending and affordability:

  • Evolution of State Cost Controls: States implementing measures to control health cost growth, including those potentially supported by the Biden Administration’s new AHEAD model, may prompt further experimentation. However, states can only regulate a subset of private health insurance plans.
  • Price Transparency Requirements: Federal price transparency requirements aim to illuminate prices paid to hospitals and providers. However, there are challenges with the quality of the data and the Congressional Budget Office expects minimal impact on health care prices.
  • Prescription Drug Pricing: The Inflation Reduction Act of 2022, targeting Medicare drug spending through government negotiation of drug prices, is expected to reduce Medicare costs, but potential effects on the private market remain uncertain. While CBO expects minimal effects on the availability of new treatments, there is considerable uncertainty surrounding those estimates.
  • Expansion of Virtual Care: The COVID-19-induced rise in telehealth, with expanded reimbursement and access, has uncertain impacts on care coordination, quality, health outcomes, and costs.
  • Market Dynamics and Anticompetitive Practices: Consolidation among providers, insurers, and drug manufacturers has elevated health care prices, leading to regulatory actions against anticompetitive practices, aiming to protect consumers from rising costs.
  • Provider Payment Reforms: Bipartisan efforts in site-neutral payment reform, addressing concerns about higher payments in outpatient settings, have led to Medicare implementing site-neutral payments in some settings and additional legislative proposals. However, challenges in provider charging practices and facility fees persist.
  • Value-Based Payment Models: The proliferation of value-based payments aims to transfer some of the cost risks from payers to providers, but concerns remain about the effectiveness of these approaches, limited quality improvement, administrative burdens, and reduced physician participation incentives. 
  • Changes in Coverage: Despite reduced uninsured rates through continuous Medicaid enrollment and expanded Affordable Care Act Marketplace subsidies during the pandemic, affordability challenges persist among the insured. Renewed disenrollments from Medicaid and the expiration of Marketplace subsidies after 2025 may increase uninsured rates and affordability issues.
  • Addressing Medical Debt: Ongoing efforts to address medical debt involve planned credit reporting agency requirements and regulatory actions. However, the root causes of high health costs and underinsurance remain untouched by most efforts to mitigate the negative effects of medical debt.

Resources

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Citation

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Amin, K., Cox, C., Ortaliza, J. & Wager, E., Health Care Costs and Affordability. In Altman, Drew (Editor), Health Policy 101, (KFF, May 28, 2024) https://www.kff.org/health-policy-101-health-care-costs-and-affordability/ (date accessed).

The Regulation of Private Health Insurance

Table of Contents

Introduction

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Private health coverage is subject to significant requirements at the state and federal levels. While the Affordable Care Act (ACA) of 2010 ushered in many new requirements for the federal regulation of private health coverage, another federal law, the Employer Retirement Income Security Act (ERISA), has for over 50 years regulated the most predominant form of health coverage for people under age 65, employer-sponsored coverage. 

States have traditionally been the primary regulators of health insurance and state health insurance protections continue to play a major role alongside a growing list of federal protections meant to address a variety of consumer concerns, from access to coverage to affordability and adequacy. This chapter describes the landscape of laws and regulations that address health care coverage and the complicated interactions between state and federal requirements that can make these protections challenging to navigate for consumers. In this chapter, it is not possible to cover every single state and federal requirement for private plans, so the focus is on the primary laws and regulations that apply to private insurance coverage.

Timeline of Major Federal Regulations for Private Health Insurance

What Is Private Health Insurance?

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Private health coverage is a mechanism for people to finance the health care services and medications they need, protecting them from the potentially extreme financial costs of this care.

At its core, health coverage is a financial contract between a private organization insuring the risk of loss and a policyholder. Where those insuring the risk or paying health claims are private entities such as insurance companies or private employers, this coverage is considered “private.” Coverage available in Health Insurance Marketplaces created by the ACA is considered private coverage, even though the Marketplaces are administered by state or federal government agencies. Public coverage, by contrast, involves financing arrangements for programs such as Medicare and Medicaid which are paid primarily from public sources. This includes private plans participating in Medicare Advantage and Medicaid managed care arrangements. (See the chapters on Medicare and Medicaid for more information.)

A fundamental concept for the private provision of health coverage is pooling the health care “risk” of a group of people to make the costs of coverage more predictable and manageable. The goal typically is to maintain a risk pool of people whose health, on average, is the same as that of the general population. Private health coverage regulation has historically included steps to prevent insurers and plan sponsors from avoiding people in poor health, while also ensuring that risk pools include people in good health to guard against “adverse selection.”

A risk pool with adverse selection that attracts a disproportionate share of people in poor health, who are more likely to seek health coverage than people who are healthy, will result in increased costs to cover those in the pool, leaving those in better health to seek out a pool with lower costs.

Sources of private coverage. An individual with private coverage generally obtains it through one of two sources, either through their employer (“group” coverage) or by directly purchasing it from an insurer (“nongroup” coverage). There are other related sources of coverage that don’t exactly fit into one of these two categories, such as coverage provided by professional associations.

1. Employer coverage: In 2023, about 165 million people under age 65 had coverage through an employer. Employer-sponsored coverage is offered to eligible employees and usually also to employees’ dependents, such as spouses and children. This coverage is referred to as “group” coverage, which is further broken down into small-group or large-group depending on the number of employees. (See diagram above.)

Private employers who “sponsor” group health plan coverage could include a range of entities, from a single nationwide retail employer with thousands of employees in many states to a small “mom and pop” operation with a handful of employees in one location. A single union can also be a group health plan sponsor of private coverage as an “employee organization,” as well as entities called “multiemployer” plans that are collectively bargained entities run by a joint board of trustees from labor and management that oversee collectively bargained benefits provided to employees of more than one employer, often in the same industry (for example, hotel workers or skilled workers in the building trades).

Public employers—federal, state or local government—also sponsor group health coverage.

Employers, private and public, have at least two approaches to make coverage available to employees:

  • Fully-insured. An employer can purchase coverage from an insurer to cover their employees for a set premium. In this “fully-insured” arrangement, the insurer bears the financial risk if that group of employees ends up costing more than expected; these plans are regulated by the state in which they are sold. Each state has a group market for the sale of health insurance that is divided by size of the group for oversight and regulation, large group and small group:
    • Large Group Insurance Market typically involves insurance products sold to employers with 51 or more individuals (employees).
    • Small Group Insurance Market is generally an employer group of 50 or fewer individual employees. Small employers can purchase small group coverage from an insurer or through the state’s health insurance exchange or Small Business Health Options Program (SHOP). In a handful of states, the SHOP is the only place where a small employer can purchase state-regulated small group insurance coverage.
  • Self-insured. Employers can also use a “self-insured” (also often referred to as “self-funded”) arrangement where the employer assumes the financial risk by directly paying all covered claims. The employer typically contracts with a third-party administrator (TPA) to administer the benefits by paying claims, designing the benefits, the provider network, and other aspects of coverage. TPAs are some of the same private organizations that provide health insurance as another line of business, as well as organizations called Pharmacy Benefit Managers (PBMs) that administer prescription drug benefits. As a result, coverage may not appear different to the covered worker than if they had fully-insured coverage. As explained in an upcoming section, unlike fully insured health coverage, self-insured coverage provided by private employers is largely not subject to state law but is governed primarily by federal law—mainly ERISA. Self-insuring health benefits are more common among larger employers because they can spread risk over a larger number of enrollees.

2. Individually-purchased insurance coverage: An individual can purchase private health coverage for themselves and their family without the involvement of their employer, referred to as “nongroup” coverage. Every state has an “individual insurance market” that consists of the following:

  • Marketplace. The ACA required the creation of Health Insurance Marketplaces in each state where individuals can purchase ACA-compliant insurance, with federal financial assistance for premiums and cost sharing if eligible. The coverage purchased from a Marketplace must meet certain minimum standards, including coverage of essential health benefits, no preexisting condition exclusions, and limits on varying premiums based on health status. (See the ACA chapter  for more information.)
  • Off Marketplace. People can also purchase individual insurance outside the Marketplace where federal financial assistance is unavailable. This could include ACA-compliant plans similar to those offered on the Health Insurance Marketplaces, and other types of coverage or financial products with lower premiums, but less comprehensive coverage than ACA-compliant plans, such as short-term limited duration coverage, fixed and hospital indemnity arrangements, health care sharing ministries, and others.

3. Other Sources of Private Health Coverage: Other sources of health coverage subject to unique regulatory standards include health coverage provided through entities called “multiple employer welfare arrangements” (MEWAs), “church plans,” and coverage provided by colleges and universities for their students.

  • A MEWA is generally any arrangement that provides benefits – in this case, health benefits – to employees of more than one unrelated employer. Historically, MEWAs have been vehicles for organizations to market less expensive health benefits to groups of employers, especially small employers. To address a history of MEWA insolvencies attributed to a lack of proper government oversight, changes to ERISA in 1983 created a complicated regulatory regime just for MEWAs, subjecting them to a mix of federal and state laws.One type of MEWA, also governed by ERISA, allows groups of more than one employer to sponsor health coverage for their employees, known as an “Association Health Plan. Traditionally, these types of plans have been available to groups of small employers in a similar industry, such as those who sell real estate or work in another similar profession. In recent years, federal efforts to expand the criteria for what types of employers may form an AHP have been the subject of litigation and new regulations.
  • Church plans are offered to employees by a church or association of churches, including entities controlled by or associated with a religion, such as religiously-affiliated hospitals and schools.Unlike other employer-sponsored plans, church plans are exempt from most ERISA requirements and some of the ACA’s health reforms. These regulatory gaps in church plans, including coverage of contraception, have been the subject of numerous legal proceedings.
  • A student health plan is any health coverage sponsored by a college or university for students. While it is not group coverage, it can be sponsored by a university in the same way employers sponsor health coverage. The ACA has special rules for this coverage. While an insured arrangement is considered individual market coverage, exceptions allow it to be provided without the insurer having to meet certain ACA market rules. A university can also sponsor a self-insured health plan for students. These arrangements do not have to meet the ACA’s market rules, although states may regulate them.

What Are the Different Types of Private Health Plans?

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Most private plans utilize a “network” of health care providers and hospitals, with some plans requiring a referral from a primary care provider (PCP) for enrollees to see a specialist. These types of arrangements, referred to as “managed care plans,” attempt to control costs and utilization through financial incentives, development of treatment protocols, prior authorization rules, and dissemination of information on the quality of provider practices.

Most private health coverage, whether employer-sponsored or individually purchased, falls into one of the following types:

Types of Private Insurance Plans

All of these plan types are available in the individual market, both on and off the Marketplace. Most employers that offer health benefits offer just one type of health plan, though larger firms may offer more. PPOs are the most common type of health plan offered by employers.

Other employer-sponsored health coverage arrangements: Employers also often offer a Health Reimbursement Arrangement (HRA), which is an employer-funded group health plan, sometimes paired with an HDHP, that reimburses an employee up to a certain amount for qualified medical expenses and, in some instances, health insurance premiums. Reimbursements are tax-free to the employee and amounts in the account can carry over to the following year, but employees lose any amounts when they leave the employer. Other variations of HRAs include an Individual Coverage HRA (ICHRA) where an employee can use funds in the HRA to purchase individual insurance either on or off the Marketplace. Qualified Small Employer Health Reimbursement Arrangements (QSHRAs) are HRAs that certain small employers can make available for tax-free reimbursement of certain expenses.

Some private health plans utilize “value-based” coverage and alternative payment models. These designs, primarily used in federal Medicare and Medicaid demonstration projects, aim to make providers more accountable for patient outcomes through various financial and other incentives. The objective of value-based care design is to shift the fee-for-service reimbursement model of paying for care based on “volume” to a system that pays based on the “value” of a service. Demonstration results to date have not shown major savings, but these designs are still discussed as a potential cost-containment tool for private health coverage. Payers and providers have also looked to value-based payment models to improve health disparities and to provide more patient-centered care.

How Do Federal and State Regulation of Health Insurance Interact?

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The regulatory framework for private health coverage has evolved into a complicated system of overlapping state and federal standards. This federalism framework creates a sometimes precarious “marriage” between state and federal authority in order to implement health policy goals.

At a high level, key aspects of the regulatory framework include the following five features:
  1. States lead on insurance regulation, but with a federal fallback for most protections. 
  2. ERISA limits the application of state law for those with private-employer sponsored coverage.
  3. Federal regulation of private health coverage can differ based on the market/source of coverage.
  4. Special exceptions in regulations allow certain types of private coverage to avoid having to meet many insurance protections.
  5. Tax regulation matters for cost and access to health care and private insurance coverage.

The regulation of insurance has traditionally been a state responsibility. States license entities that offer private health insurance and have a range of insurance standards, including financial requirements unique to state law. However, the federal government has played an increasingly significant regulatory role over the past 50 years.

The federal pension law, ERISA, passed in 1974, applies to insured and self-insured private employer-sponsored health coverage with similar legal and enforcement mechanisms to protect individuals covered by private group health plans as those created for pension plans.

Separately, the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) created new federal requirements and the basic framework for how state and federal law now interact. Under this “federal fallback” structure, states may require that insurers in the group and individual market (as well as state and local government self-insured plans) implement federal requirements on health coverage. If a state fails to “substantially enforce” the federal requirements, the federal government will enforce those protections. The federal fallback framework was intended to allow states to continue to regulate private coverage while ensuring that all consumers nationwide have a floor of federal protections when a state fails to implement them.

1. States lead on insurance regulation, but with a federal fallback for most protections

The federal fallback framework does not apply to self-insured employer-sponsored coverage. The U.S. Department of Labor (DOL) almost exclusively regulates private self-insured employer-sponsored plans. The Center for Medicare and Medicaid Services (CMS) directly enforces federal protections against state and local government self-insured employer plans (although states can do so too). 

2. ERISA limits the application of state law for those with private employer-sponsored coverage

ERISA specifically “preempts” or prevents state law from applying to most self-insured group health plans, limiting the scope and application of state protections for many Americans covered by employer-sponsored plans.

Aspects of this preemption have been the topic of almost 50 years of litigation, resulting in three overall conclusions:

  • Most state insurance laws, including state benefit mandates, don’t apply to self-insured ERISA plans, resulting in fewer regulatory requirements on these plans than on fully-insured plans.
  • State insurance laws generally do apply to fully-insured ERISA plans.
  • ERISA provides exclusive, yet limited, civil remedies for enrollees in ERISA plans who are harmed due to a violation of the law.

Today, some argue that ERISA preemption sustains the employer-based health coverage system because meeting an ever-growing list of state laws would be costly for employers, particularly those with employees in multiple states. Having national uniform standards, they argue, provides employers with an incentive to offer coverage. Others argue that preemption handcuffs states’ ability to protect consumers and control health care costs and is no longer needed given the ACA’s employer coverage mandate for larger employers and the increased regulation that applies a variety of rules to both fully-insured and self-insured plans. Prospects for change are limited, but some have explored the possibility of alternative approaches.

3. Federal regulation of private health coverage can differ based on the market/source of coverage

Private health insurance regulations vary based on the insurance market and the source of coverage. This is in part due to ERISA preemption and the ACA, which applies many reforms only to the individual and small-group markets.

Further complicating this are plans that existed before the ACA was passed, called “grandfathered” plans, that do not have to meet many of the ACA standards so long as no significant changes in cost sharing and benefits are made to the plan.

The ACA did, however, alter federal law to create a large number of consumer protections that apply many of the same regulatory requirements across almost all sources of private health coverage.

Finally, some federal standards only apply to employer-sponsored plans (insured and self-insured) that are governed by ERISA, such as the requirement on employers with 20 or more employees to provide temporary continuation of coverage in certain situations, known as COBRA, which also applies to certain state and local government employers. There are also obligations on plan “fiduciaries” that are unique to ERISA plans.

This all means consumers can have different legal protections with their private coverage based on their coverage type and the state where they live.

4. Special exceptions in regulations allow certain types of private coverage to avoid having to meet many insurance protections

Some private plans are specifically exempt from most federal private health coverage protections, including the ACA. These forms of coverage are often called “non-ACA compliant” coverage. While “non-ACA compliant” does not automatically mean it is illegal or inappropriate, some forms of this coverage have come under increasing scrutiny by federal and state authorities due to their gaps in consumer protections.

These types of coverage fall into these general categories:

  • Coverage that is an “excepted benefit” is specifically carved out of most of the ACA and other federal requirements. Some are considered health coverage, such as certain dental and vision benefits, and other forms of coverage are not, such as fixed and hospital indemnity, cancer-only coverage, accidental death and dismemberment, and long-term care coverage. (This Health Affairs article provides a more detailed description of excepted benefits.)
  • Short-term limited-duration coverage and other forms of coverage are not regulated as health insurance under federal rules (as mentioned in the previous section).
  • Employer-sponsored plans with less than two participants who are current employees. This exception was included in the 1996 HIPAA law and has been interpreted as excluding employer-sponsored plans that cover only retirees from many federal insurance requirements.

Some of these forms of coverage are the focus of business promoters looking to market cheaper, largely unregulated forms of coverage. In some instances, this coverage might be promoted by unscrupulous actors who falsely market the coverage as meeting ACA requirements or as providing comprehensive coverage. In other cases, coverage is sold as supplemental “health” coverage along with ACA-compliant health insurance, sometimes with very high deductibles. These exceptions to the ACA’s broad coverage requirements can operate as loopholes in the implementation of consumer health coverage protections and may create ambiguities for consumers as well as employers.

5. Tax regulation matters for cost and access to health care and coverage

Central to evaluating how private coverage works are the tax subsidies that reduce the cost of coverage and benefits, which can incentivize employers to sponsor and individuals to purchase private health coverage. Tax regulations also define what health expenses get a tax preference.

The largest health care tax subsidy is applied to employer-sponsored coverage. Tax-exempt employer contributions for medical insurance premiums and medical care resulted in more than $224 billion in lost revenue for the federal government in 2022. Employer-sponsored health coverage is excluded from federal income tax, as well as federal employment taxes (and equivalent state taxes). The exclusion also applies to amounts reimbursed to employees by an employer under arrangements called “health flexible spending arrangements” (health FSAs), where an employee elects to have amounts withheld from their wages to pay for medical expenses. The exclusion provides considerable tax savings for employers and employees making contributions toward health coverage. The value of this exclusion increases as income increases, making income tax savings greater for higher-income individuals than for lower-income individuals. For various policy reasons, including to rein in health care costs, there have been efforts to change or cap this exclusion over the years, but to date, none have been successful. The most recent, the “Cadillac tax” provision of the ACA, was removed from the law before it was implemented (see Employer-Sponsored Insurance chapter).

Additionally, the ACA created refundable tax credits based on household income to help individuals purchase coverage on a health insurance Marketplace (see the Affordable Care Act chapter). In contrast to the employer exclusion, tax subsidies for Marketplace participants are higher for those with lower incomes. Temporary increases in these credit amounts, passed as part of the American Rescue Plan and the Inflation Reduction Act, have led to record Marketplace enrollment. The temporary increases expire at the end of 2025 and will end unless extended. Unlike employer-sponsored insurance, Marketplace enrollees who pay a premium for their coverage do so with after-tax dollars.

What Federal Requirements Apply to Health Insurance?

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The scope and extent of federal regulation that affects private health coverage has vastly increased, especially with the passage of the Affordable Care Act (ACA) in 2010. As stated earlier, the ACA largely retained the framework for the regulation of private coverage, adding a long list of new provisions to different regulated pieces of our fragmented health care system. This means specific and overlapping requirements on insurers, employer-sponsored plans, and, more recently, in the No Surprises Act, also on providers.

The ACA also unleashed a firestorm of activity resulting from longstanding political and philosophical differences on the role of federal government regulation of health care. Efforts to repeal and replace the ACA, several U.S. Supreme Court cases challenging ACA provisions, and hundreds of other cases in the lower courts on the ACA and other federal requirements mean the law in this area has and will continue to be in flux.

Regulatory priorities can and have shifted depending on what party controls the White House and Congress, resulting in ever-changing federal standards. This section reviews the current landscape of federal requirements. A discussion of every single relevant federal regulation is beyond the scope of this chapter, but the major requirements have been divided into six categories:

  • Access to health coverage
  • Affordability of health coverage
  • Benefit design and adequacy
  • Reporting and disclosure of information concerning coverage
  • Review and appeal of health claims
  • Other federal standards
1. Access to Coverage

Federal health care reform has prioritized expanding health coverage to those without it for quite some time, especially for those not eligible for a public program such as Medicaid or Medicare, or who do not have coverage through their current employer. Prior to the passage of the Affordable Care Act in 2010, state laws and regulations were designed to address the potential for adverse selection in health insurance by allowing insurers to engage in certain practices such as “underwriting,” which allowed insurers in the individual and group markets to decline to cover or renew coverage due to a person’s health status or a group’s claims history, and helped plans maintain predictable and stable risk pools. Further, an insurer could cover the applicant, but charge a higher premium based on age, health status, gender, occupation, or geographic location. In addition, insurers could exclude benefits for certain health conditions if the person was diagnosed or treated for that condition prior to becoming insured (a “preexisting condition exclusion”).

States made some reforms, particularly in the small group market, to address these barriers to coverage. Some of these changes became part of the federal Health Insurance Portability and Accountability Act (HIPAA) of 1996. However, it was not until the ACA that the regulation of private insurance, at least the individual and small group markets, was fundamentally changed.

Core Private Insurance Coverage Protections. The ACA established core market rules designed to expand coverage to most people in the U.S. New ACA legal requirements include:

Core Protections for Private Insurance Coverage

Requirements for premium stabilization & other efforts to protect the risk pool. The ACA’s private insurance market regulations also ushered in concerns that its protections, including guaranteed issue and the elimination of health underwriting for some coverage, would result in adverse selection (discussed in the first section). Regulatory efforts to prevent adverse selection have also focused on certain plans and products that do not have to meet most of the ACA rules, such as short-term limited-duration plans. Non-ACA-compliant coverage may be attractive to consumers looking for lower monthly costs, but these plans can leave consumers underinsured and may compromise the risk pool by drawing out healthier individuals.

Federal guidance and regulation aimed at protecting the risk pool as part of the ACA include:

ACA Requirements Aimed at Protecting the Risk Pool

Standards to prevent coverage gaps. Access to coverage is also enhanced by federal requirements to provide for the continuity of coverage or care to prevent gaps for those who do or could lose coverage, including: 

Standards to Prevent Coverage Gaps
2. Financial Protection and Affordability

High costs, in the form of both premiums and cost sharing, have been a defining feature of employer-sponsored and individually-purchased (for unsubsidized enrollees) health coverage. Federal reforms have sought to address the stability and affordability of health insurance. Key provisions include:

Federal Insurance Financial and Affordability Protections
3. Benefit Design and Adequacy

Federal requirements also include a growing list of minimum standards for how a plan is designed or operated in an effort to ensure that enrollees have coverage that is comprehensive enough to cover medically necessary care, with processes that do not unnecessarily limit access to covered benefits. Such requirements include laws that prohibit plans from imposing annual dollar limits on coverage, requiring waiting periods longer than 90 days before employer-sponsored coverage kicks in. States may have additional benefit mandates for state-regulated plans, such as comprehensive coverage requirements for state-regulated plans, such as comprehensive coverage requirements for mental health or substance use disorders or fertility services.

Required coverage

The ACA requires all private, non-grandfathered health plans to cover preventive services with no cost sharing for enrollees. These requirements change over time as preventive service recommendations are updated and new services are added. In general, these include:

Preventive Services Requirements for Private Health Plans

The preventive care coverage requirement has been the subject of extensive litigation since the ACA was passed. A KFF brief provides more detail on this litigation and the case currently before the U.S. Supreme Court. The contraceptive coverage requirement has been the topic of two U.S. Supreme Court cases and several regulations, now allowing employers to not cover contraception if they have a religious objection.

Other required design standards across most health plans

Large group, small group, individual, and self-insured health plans are required to abide by other benefit design standards that aim to contain out-of-pocket costs and improve access to and quality of care. These design standards include:

Design Standards That Apply to Most Health Plans

Design standards limited to individual and small group plans. Federal requirements on health plan design standards for certain segments of the individual and small-group markets have evolved since the ACA was passed. Plans must meet these rules as part of annual certification requirements for qualified health plans. Examples of these standards include:

Design Standards for Individual and/or Small Group Health Plans
4. Disclosure, Reporting and Transparency

In the 2023 KFF Survey of Consumer Experiences with Health Insurance of insured adults, most Marketplace and employer-sponsored insurance (ESI) enrollees reported difficulty understanding some aspect of their health insurance compared to consumers enrolled in Medicaid and Medicare:

Marketplace and ESI Enrollees Have Trouble Understanding at Least Some Aspect of Their Health Insurance

Lack of information or understanding about key features of an individual’s health coverage can put patients at financial risk and result in negative health outcomes. Employers and other health purchasers have also struggled to get the information they need to make prudent decisions about cost-effective coverage options and hold their service providers accountable for their plan designs, contracting, and administration activities. Regulations have increased over time to make more information available to enrollees or prospective enrollees, as well as to federal agencies to conduct their oversight responsibilities. What to disclose and how much information is useful is a continuing policy challenge.

Most federal disclosure, reporting, and transparency requirements fall into two categories: Disclosure of information to enrollees and/or the public (Table 9) and reporting to the federal government (Table 10). Note that the requirements provided in these tables are not exhaustive, but include examples of some of the main reporting, disclosure, and transparency requirements that plans, providers, and facilities are subject to.

Disclosure of Information to Enrollees and/or the Public

Ongoing reporting by private plans to federal agencies is a tool for agency oversight to assess compliance with regulations and evaluate trends. In some instances, agencies are required to use this information to report aggregate information to the public and Congress.

Requirements for Reporting to the Federal Government
5. Claims and Appeals Processes

Access to a fair system of review for consumer grievances about plan actions and claims denials has been a key element of federal consumer protection.

A 1997 Clinton Administration initiative, the Patient Bill of Rights, resulted in several federal agencies taking regulatory actions to enhance consumer protections for patients and workers. As part of this initiative, the DOL updated claims and appeals rules that applied to private-sector employer plans regulated by ERISA to make the claims review process:

  • Faster (shortened timeframe for plans to make a decision on claims and appeals)
  • Fairer (ensure plan decision makers were free of conflicts of interest)
  • Fuller (more transparent through the disclosure of more information to consumers–including language access standards–about the reason for a claim denial).

The DOL issued regulations in 2000 governing the “internal” claims review process, conducted internally by a plan or plan-sponsor employer. For the first time, these updated rules accounted for managed care features such as prior authorization, whereby health plans determine medical necessity before the plan covers an item or service, requiring, for example, shorter time frames for claim decisions and appeals for these “pre-service” claims.

Timelines for Private Health Plans' Internal Appeal Decisions

These rules were the basis for reforms applied across all private health coverage in the ACA. These reforms provided a federal floor of protections for the internal claims and appeal process and added an option for consumers to appeal a denied claim and an appeal process for review by an entity independent of the plan in a process called “external review.” Only certain types of claims, such as those that involve clinical judgment, are eligible for external review.

Policymakers have renewed scrutiny of the prior authorization process as well as claims review and appeals generally. Claims and appeals standards that apply to Medicare Advantage plans, Medicaid, and some Marketplace plans were updated in 2024 to reduce delays in decision making and to provide more transparency about the outcomes of claims and appeals decisions.

6. Other Federal Standards

Several other federal laws and regulations provide consumer protections in private health insurance, often indirectly, that sometimes have stronger enforcement mechanisms and penalties than federal insurance laws. These include:

Civil Rights Law. The Civil Rights Act of 1964 (and later amendments to it, including the Pregnancy Nondiscrimination Act) and the Americans with Disabilities Act of 1990 created protections against discrimination based on race, color, national origin, sex, age, and disability. At a minimum, these standards apply to employers with 15 or more employees, and, in effect, regulate those employers’ group health plan coverage.

Section 1557 of the ACA included a nondiscrimination provision that potentially applies many existing civil rights laws directly to health care entities, including insurers that receive federal funds. The extent of its reach has been the subject of several sets of regulations, with the latest iteration under the Biden administration finalized in 2024. The rule reinstates protections against discrimination for LGBTQ+ people seeking health care and coverage, including for gender-affirming care.

Antitrust Laws. Antitrust laws in health care prohibit anticompetitive practices and mergers by health care providers, hospitals, and insurers, which can reduce competition and increase prices. As provider consolidation increases, federal agencies such as the DOJ and the Federal Trade Commission (FTC) have ramped up enforcement initiatives in recent years, as outlined in a KFF brief. Health insurers have also faced antitrust scrutiny as the market shares of the largest health insurers continue to dominate in most locations. Oversight of pharmacy benefit managers, now mostly owned or affiliated with the leading health insurers, is one area of focus.

Privacy Laws. As digital technology has advanced, so have concerns about protecting consumer health information, as the fast development of new technology (e.g., health-related apps) has made it difficult for regulation to keep up. The leading federal privacy requirements for health plans’ use of certain patient information, set out in HIPAA regulations, are now almost 25 years old. Efforts to update this regulation are underway, including specific standards for information regarding abortion after the Supreme Court invalided the constitutional right to abortion in 2022. In addition, the Federal Trade Commission has sought to regulate areas not covered directly by HIPAA, such as software applications increasingly marketed as part of health coverage.

Special privacy protections for substance use disorder information are regulated under a law known as “Part 2.” This law aims to protect the confidentiality of this information while still allowing providers to share patients’ mental health and substance use disorder information with plans and others to coordinate care and administer benefits. 

Gag Clauses. Plans and issuers are prohibited from entering into an agreement with a provider, third-party administrator, or other service provider (including pharmacy benefit managers) that restricts the plan and issuer from accessing claim, cost, or quality information on providers, enrollees, plan sponsors, and other entities, known as a “gag clause.” Plans and issuers must annually submit an attestation of compliance with these requirements to the federal government.

Who Regulates Health Insurance at the Federal Level?

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Three federal agencies have overlapping jurisdiction for most federal regulation of private health plans: the U.S. Department of Health and Human Services (HHS), the U.S. Department of Labor (DOL), and the U.S. Treasury Department. Through a structure created by HIPAA in 1996, these three agencies jointly issue regulations and other guidance on laws passed by Congress that place the same or similar standards across all private plans.

The same or similar federal requirements for private health plans are typically contained in three separate statutes that each agency oversees:

As an example, if Congress passes a federal law that requires all insurers of individual and group coverage and all employer-sponsored plans to meet a certain standard, any regulations issued to implement that standard are usually issued jointly by HHS, DOL, and Treasury with separate but identical language added to the Public Health Service Act (PHSA), ERISA, and the Internal Revenue Code (IRC). However, each agency has its own requirements for how these laws are enforced. In addition to these overlapping authorities, each of these three agencies has exclusive federal authority over certain aspects of private health insurance regulation (though the federal authority might be shared with states in some instances):

Federal Agency Enforcement of Private Health Plan Requirements

Other agencies with important oversight roles of private health coverage include:

  • HHS’s Office of Civil Rights: Implements HIPAA’s administrative simplification standards; ACA section 1557 nondiscrimination rules
  • HHS’s Office of the National Coordinator: Coordinates efforts to implement and use health information technology and health information exchange
  • HHS’s Food and Drug Administration: Regulates clinical investigations and supervises the safety of pharmaceutical drugs, biological products, and medical devices
  • Department of Justice: Antitrust Enforcement
  • Federal Trade Commission: Antitrust Enforcement
  • Equal Employment Opportunity Commission (EEOC): Nondiscrimination in health coverage and wellness program standards

How Are Federal Health Insurance Requirements Implemented and Enforced?

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As the executive branch of the U.S. government, the federal government has the authority to execute laws passed by Congress and signed by the President, including by issuing regulations to operationalize and implement a statute. In addition, specific agencies have authority to investigate violations of the law and enforce the law through policy form review, market conduct exams, and by the assessment of penalties and/or bringing a court action to stop an insurer from violating the law (injunction). 

Regulations and Other Guidance

Process: The federal regulatory process is governed primarily by the Administrative Procedure Act (APA). This law, along with specific executive orders, governs the process known as “notice and comment rulemaking,” where regulations are proposed (through a notice of proposed rulemaking or “NPRM”) and are subject to public comment for a certain period of time and then finalized. The process is administered by the Office of Management and Budget (OMB), an agency within the Executive Office of the President. The OMB’s Office of Information and Regulatory Affairs (OIRA) coordinates the review and release of regulations from the agencies. Regulations are published in the Federal Register, a daily publication of regulations and notices. Information about regulations under OIRA review are available by agency at Reginfo.gov, and the public can view all regulations and comment letters at Regulations.gov. Twice a year, OMB issues a regulatory agenda of regulations agencies expect to publish in the coming months.

Authority: Once a regulation has gone through the notice and comment process and a final rule is issued, it is generally considered to have the force of law, meaning private actors must comply with it, and individuals can rely on having the protections set out in the law and the regulation. However, regulations are subject to legal challenge under the APA if they are inconsistent with the statute.

Review of regulations by courts: Traditionally, if a regulation interprets a part of the statute that was not clear as drafted by Congress, when a federal court reviews a challenge to the regulation, the court would uphold the interpretation in a regulation unless it is unreasonable or arbitrary. Essentially, courts deferred to the expertise of government regulators and the regulatory review process to uphold a regulatory requirement if they deemed the interpretation reasonable. This practice is calledChevron deference,” named after a Supreme Court case from 1984, Chevron v. Natural Resources Defense Council, that set out the framework for court review of ambiguous language in a statute. This standard of review can result in agencies having discretion to implement policy changes through interpretation of regulation. That discretion was challenged in recent years as too broad, giving regulators too much authority, and in June 2024, the U.S. Supreme Court overruled its previous decision, meaning federal courts are no longer required to defer to regulations of administrative agencies in circumstances where they traditionally would have. Eliminating Chevron deference could weaken the impact of regulation on public policy and shift more policy decisions to courts.

Sub-regulatory guidance: Other types of information and guidance commonly issued by a federal agency that do not go through the formal regulatory notice and comment process are referred to as “sub-regulatory.” Information and interpretation in sub-regulatory guidance usually do not have the force of law as regulations do, and typically do not create legally binding obligations on private parties. They are, however, useful in quickly communicating information to regulated entities and the public to signal how and when the agency plans to implement a new law, and the timing of that implementation. However, reliance on these types of guidance by consumers has its limits since regulated entities might still assert that this type of guidance is not binding on them. Examples of sub-regulatory guidance include:

  • Frequently asked questions, manuals, memos, and letters used by CMS, DOL, and the IRS: Certain provisions of the ACA have been the subject of numerous sub-regulatory guidance, including over 60 pieces of guidance in the form of frequently asked questions issued jointly by CMS, DOL, and the IRS. Sub-regulatory guidance also includes implementation manuals, advisory opinions, policy letters, and enforcement memos.
  • Advisory opinion or information letters: The DOL and IRS have used advisory or information letters and chief counsel memos to address fact-specific questions at the request of regulated entities. DOL and IRS responses to these inquiries only apply to the specific parties and scenarios addressed, so they can’t be relied on by the public and can create ambiguities about what the law requires, which can remain unresolved for years until formal regulations are finalized. Note that the IRS also has several other types of guidance with varying levels of authority.

Enforcement

Given the federal fallback framework described in previous sections, the enforcement mechanism for most federal requirements on private coverage depends on the type of health plan and the federal agency enforcing the requirement, as summarized in Table 13 below.

Government enforcement. Under the existing federal fallback framework, CMS has developed a process for determining whether a state is substantially enforcing each specific federal insurance protection. This means that whether a state or CMS is responsible for enforcement can differ for each health coverage standard, resulting in a patchwork of federal and state enforcement responsibilities.

Private Right of Action and Remedies. Some laws also allow individual consumers or their representatives to bring a lawsuit independent of the government to address a violation. These laws may detail what types of “remedies” are available if the challenge is successful—for example, an injunction to stop a violation, a civil penalty, compensatory or punitive damages. Without this “private right of action,” aggrieved consumers must rely solely on the government to act to address a problem.

Federal and State Enforcement of Private Health Plan Requirements

The federal fallback framework also applies to most of the requirements on health care providers and facilities that are now part of federal law. In 2020, Congress passed the Consolidated Appropriations Act (CAA), which includes new protections on balanced billing (the No Surprises Act) and various provider rules regarding disclosure and transparency. States are expected to enforce these standards against providers, with CMS as the federal fallback. State health departments or state agencies that oversee provider and facility licensing and practice standards oversee these rules. CMS has surveyed states and entered into collaborative enforcement agreements with each state, including which CAA rules the state is prepared to enforce and which ones CMS will need to implement. CMS can assess a penalty of up to $10,000 per violation against a provider or facility for non-compliance.

Enforcement of other standards. Outside of the above federal fallback framework, each agency has its own separate enforcement mechanisms for the laws they implement alone. For instance, HHS has authority to assess fines under HIPAA privacy rules for violations, but individuals harmed by a HIPAA violation do not have a private right of action under that law. Enforcement processes and remedies available under federal nondiscrimination requirements under the Civil Rights Act or the Americans with Disabilities Act vary, but some include monetary damages in the form of compensatory damages.

Who Regulates Private Health Insurance at the State Level, and What Are the Primary Enforcement Tools Used?

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The McCarran-Ferguson Act, enacted in 1945, clarified federal intent that states have the primary role in regulating the business of insurance. Although changes have since been made to that law, states have several mechanisms in place to regulate insurance. States license entities that offer private health coverage in a process that reviews the insurer’s finances, management, and business practices to ensure it can provide the coverage promised to enrollees. States also license the insurance agents and brokers in the state (more details in a later section).

State insurance laws and regulations vary by state though commonly include:

State Responsibilities for Regulating Private Health Insurance

Most states require health plans to provide specific data that is included in the state’s all-payer claims databases (APCDs), which are state databases that include medical, pharmacy, and often dental claims, and eligibility and provider files collected from and aggregated across all private and public payers in a state. APCDs can provide states with a perspective on cost, service utilization, and quality of health care services across the full spectrum of payers in a state, which can be a tool in state efforts to control health care costs and promote value-based care.

Some states are also developing additional state-level regulations related to health plan network adequacy, health plan price transparency, public option plans, reinsurance programs, and more. These state-level regulations and protections do not apply to enrollees in self-insured plans offered by private employers (see section ‘What is Private Health Insurance’ for more information). However, these enrollees may have some of these protections through similar federal laws and regulations.

State legislatures enact state insurance laws and typically grant regulatory authority to the state’s insurance regulator/commissioner. State enforcement mechanisms vary widely by state, regulation, state resources, and staffing capacity; shifting political priorities at the state level can also influence enforcement priorities and actions. For example, state insurance agencies may ensure compliance with certain benefit mandates by primarily relying on complaints from consumers, consumer advocates, or health care providers to trigger a compliance review of the plan in question, while other state insurance agencies conduct periodic systematic reviews of all plans subject to the law or regulation.

What Is the Role of Health Insurance Brokers and Other Assisters?

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Navigating an increasingly complicated health coverage landscape has increased the focus on the availability and expertise of entities that assist purchasers of health coverage (consumers and employers). Assisters can include agents and brokers who are paid commissions from insurers, as well as consumer assistance programs (CAPs) created by the ACA, which are often publicly funded and nonprofit, who may provide similar assistance as agents and brokers, but also specialize in individuals transitioning in and out of public programs such as Medicaid or assisting those without insurance to find coverage.

Agents and brokers have long played a significant role in connecting people and employers to private health coverage by helping them understand health insurance options and costs. An “agent” typically represents a single insurer and provides information about that insurer’s coverage options. A “broker” is not aligned with any one insurer but could, in theory, place coverage from any insurer selling products in a state.

Agents and brokers assist individuals in choosing a qualified health plan on a health insurance Marketplace. In the 2020 plan year, almost half (48%) of ACA coverage was sold through health insurance agents or brokers, up from 40% in plan year 2017. Web brokers, who facilitate plan selection online through Marketplace capabilities, have also played a large role in Marketplace enrollment.

Even before the creation of the Marketplaces, agents and brokers played a large role in selling coverage in the individual and group insurance market, especially to small employers needing expertise in finding health insurance for their employees. Large employers also use agents and brokers, who often work for employee benefit consultants or brokerage firms and receive commissions for finding vendors to support their self-insured group health plan or for placing other forms of insurance that they provide or make available to employees as “voluntary” benefits.

Broker Compensation Reporting. Employer plans governed by ERISA must meet ERISA fiduciary standards. These standards prohibit plans from contracting with a “party-in-interest,” which is essentially an entity that may have a conflict of interest because it is receiving compensation from a third party for activity it is doing for the employer plan. For instance, a benefits consultant may be helping an employer find a third-party administrator (TPA) for its group health plan, and the consultant is paid by the employer for their work, but also gets a commission from the TPA if the employer decides to its services. Employers are prohibited from entering into this type of transaction with the consultant unless they can show it was done in a “reasonable manner.” 

Under rules added to ERISA by the CAA, one way an employer plan can show its contract with a broker/consultant is reasonable is to show that it received information from the broker/consultant about the compensation the broker/consultant received from the TPA. Under these rules, an employer plan fiduciary violates ERISA if it does not receive from a broker or consultant information about the direct and indirect compensation the broker receives. Insurers offering individual insurance (on and off Marketplace), as well as those offering short-term limited duration coverage, must disclose to enrollees and report to CMS any direct or indirect compensation they pay to agents and brokers for enrolling individuals in this coverage.

Other Types of Assisters. Other types of assisters for private health coverage were created by the ACA requirements for Marketplaces to establish Navigator programs to raise public awareness and to assist individuals to enroll in qualified health plans. Related assisters include “certified application counselors.” Most of these entities rely on federal or state funding to operate. Additionally, CAPs offered federal funding for states to create programs to assist consumers with insurance problems and identify their best options for health coverage. Unlike the Navigator program that was specifically created to assist Marketplace, Medicaid, and CHIP consumers, the CAP program was also created for those states that chose to apply to assist consumers with employer coverage as well as those with other types of coverage. Federal grant funding in 2010 allowed 35 states and Washington, D.C., to create CAPs. No grant funding has been made since then, eliminating the only federally funded program that could assist those with employer coverage. Many states have continued their CAP programs through their own funding, but others have discontinued their operations. 

What is the Future Outlook for the Regulation of Health Insurance?

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The ACA and related reforms have significantly reduced the number of people in the U.S. without any health coverage, but the growing cost of care and the resulting increase in out-of-pocket consumer costs for those with coverage—a problem that existed before the ACA—will continue. Amidst increasing patient and consumer protections at the federal level, states still play a significant role in regulating private health insurance, creating a complex relationship between federal and state regulations that can result in a patchwork of different standards by market segment and state. The future regulatory outlook for health coverage hinges on key areas:

The limits of regulation. Challenges to federal agency power, and other long-standing approaches to how courts review agency regulation, have added legal hurdles to the implementation of existing law through regulation. The U.S. Supreme Court issued major decisions in 2024 to further limit agency discretion, handing more power to federal courts in the policymaking process. The implications of these decisions are far-reaching and will have profound effects on health policy for years to come.

State regulation of insurance. States will continue to play a significant role in shaping coverage and consumer protections in private insurance. Some recent examples of state activity include requiring state-regulated plans to cover certain reproductive health services such as coverage of fertility and abortion services, and regulations related to prior authorization, transparency, and prescription drug coverage and costs that go beyond what federal law requires. The scope of some of these efforts will be limited due to ERISA preemption for most self-funded employer plans.

A focus on oversight. As public insurance programs have increased the coverage provided through private health plans (Medicare Advantage and Medicaid managed care plans), new inquiries from the federal government and state governments on their managed care practices, such as prior authorization and provider network design, have resulted in renewed focus on how these practices have been working in private health insurance as well. Expect more questions about how internal insurance processes such as claims review are working and enforced, and whether the tradeoffs between cost and coverage inherent in these processes are leaving patients without coverage for medically necessary care.

Getting ahead of technology changes. Expect wide-ranging recommendations from major stakeholders on which aspects of AI and telehealth should be nurtured, and which should be regulated. Since the regulatory process is slow, much of the future outlook will depend on the voluntary actions of industry and how transparent those activities are. Updates to longstanding privacy rules will also try to catch up to improved technology capabilities. Additionally, new, expensive gene therapies and blockbuster medications will also challenge policymakers to rethink existing reimbursement structures and government intervention in pricing.

Assessing whether consumers are getting what they pay for with their health coverage. In the coming years, there will be a better ability to assess whether regulatory initiatives that focus on transparency made any difference for the patient in their day-to-day decision making and access to information about their coverage. Medical debt and ways to prevent it are also growing concerns, especially for those with health coverage and chronic illnesses. Additionally, data that measure consumer outcomes in understanding and usability of coverage, and health equity in coverage and care will be important going forward.

Resources

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Citation

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Pestaina, K., Wallace, R., & Long, M., The Regulation of Private Health Insurance. In Altman, Drew (Editor), Health Policy 101, (KFF, July 2024) https://www.kff.org/health-policy-101-the-regulation-of-private-health-insurance/ (date accessed).

Health Policy Issues in Women’s Health

Table of Contents

Introduction

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Health care is a central element of women’s lives, shaping their ability to care for themselves and their families, to be productive members of their communities, to contribute to the workforce, and to build a base of economic security. Women’s reproductive health care needs, their central roles managing family health as parents and as family caregivers, and their longer lifespans, albeit with greater rates of chronic health problems and functional limitations than men, all shape their relationships with the health care system. While women are major consumers of health care services and play a central role as health navigators and caregivers for their families, structural factors can challenge their ability to get the health care they need. Factors, including national and state policies that shape the health care delivery system to research priorities and discriminatory economic and societal forces, can deprioritize women’s health concerns. Access challenges are greater for women who are in low-income households, who face structural and societal racism and discrimination, who struggle with complex or understudied medical conditions, or who live in states or communities that have enacted or invested in policies and programs that do not support their health needs.

In the United States, the women’s health movement gained significant traction in the 1960s and 1970s as part of a larger grassroots women’s rights movement that challenged long-standing inequities and discrimination that limited women’s economic and social opportunities. The book, “Our Bodies, Ourselves,” brought a wide range of women’s health concerns, ranging from abortion and sexuality to menopause and cancer, into the mainstream. Over time, federal action also began to address many of the long-standing discriminatory sex and gender-based policies that were baked into our employment, health, and research policies. The 1973 U.S. Supreme Court ruling in Roe v. Wade decriminalized and protected the right to abortion care for nearly 50 years; the Pregnancy Discrimination Act of 1978 offered workplace and insurance protections to pregnant workers; the National Institutes of Health (NIH) Revitalization Act of 1993 mandated the inclusion of women in clinical research and formally established the NIH Office of Women’s Health; and in 2010, the Affordable Care Act (ACA) banned many of the discriminatory practices that had shaped women’s coverage of and access to care.

This primer focuses on some of the key areas disproportionately affecting women today that are shaped by national and state health policies. This includes health coverage and costs, reproductive health services, maternal health, mental health, and intimate partner violence. In addition, it highlights some of the structural factors and inequities that still impact women’s health, particularly women of color and gender-expansive individuals such as those who are transgender or non-binary or otherwise gender fluid or non-conforming who are at risk of being marginalized or discriminated against by their health coverage or providers. We note that while we refer to “women” and “women’s health” throughout this chapter, some persons assigned female sex at birth do not identify as women, such as transgender men, non-binary individuals, and otherwise gender-expansive individuals. Still, many of the issues discussed in this chapter also apply to them.

What Is the Demographic Profile of Women?

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More than 128 million adult women over the age of 19 live in the U.S. today, with great diversity in many demographic characteristics. A third of adult women are between the ages of 35-54 (33%) and the majority are White (60%) (Figure 1). Nearly 1 in 5 (17%) women are Hispanic, 12% are Black and 6% are Asian.

Almost two-thirds (65%) of women live in a household with at least one full-time worker, while 1 in 10 (9%) live in a household with only part-time workers, and 25% of women live in households with no workers (data not shown). Given the important role of employment in shaping health coverage, workforce participation is a significant determinant of the type of health insurance that working women or women who live in households with full-time workers can obtain.

While most women in the U.S. report having good health, nearly 1 in 5 (18%) women 18 and older rate their health as “fair” or “poor” and 14% report having a disability such as difficulty with vision, hearing, or walking. As women age, they are more likely to experience chronic health problems and declines in health status. These factors are highly predictive of their need for and use of health care services.

Income also plays a major role in health coverage and access to care. Income affects the resources that women have to pay for out-of-pocket health care costs and contribute to premium costs. Income also determines women’s eligibility for programs such as Medicaid or subsidies to secure coverage through the ACA Marketplace. Three in 10 (29%) adult women are part of households with low incomes (family income below 200% of the FPL was $47,112 for a family of three in 2022). Almost 4 in 10 (35%) women have completed a bachelor’s degree or higher, almost a third (27%) have a child under the age of 19 living at home, and 93% are U.S. citizens. Nearly 4 in 10 women live in the South (39%), almost a quarter (24%) live in the West, a fifth (20%) live in the Midwest, and 18% live in the Northeast (Figure 2).

What Are the Sources of Health Insurance Coverage for Women?

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While most adult women have some form of either private or public health insurance, the coverage profile for those who are under and over age 65 differs considerably. For those who are under age 65, employer-sponsored coverage, individually purchased policies, and Medicaid—the state-federal program for people with low incomes—comprise the majority of coverage options. However, nearly 1 in 10 women in that age group are currently uninsured. Among women 65 years and older, the Medicare program plays a critical role covering nearly all seniors in the U.S., though often with considerable coverage gaps (such as hearing, vision and long-term services and supports) and cost-sharing burdens.

Employer-Sponsored Insurance

Approximately 58.3 million women aged 19-64 (60%) received their health coverage from employer-sponsored insurance in 2022 (Figure 3). Women in families with at least one full-time worker are more likely to have job-based coverage (70%) than women in families with only part-time workers (33%) or without any workers (17%).

Employer-sponsored insurance can come with substantial out-of-pocket costs based on premiums, deductibles, co-insurance, and co-payment levels. In 2022, annual insurance premiums for employer-sponsored insurance averaged $7,911 for individuals and $22,463 for families. On average, workers paid 17% of premiums for individual coverage and 28% for family coverage with the employers picking up the balance.

Women's Health Insurance Coverage, 2022

Non-Group Insurance

In 2022, about 9% of women ages 19 to 64 (approximately 8.3 million women) and 8% of their male counterparts purchased insurance in the non-group market. This includes individuals who purchased private policies from state-based Marketplaces established under the ACA, as well as those who purchased coverage from private insurers that operate outside of the ACA Marketplaces.

Most individuals who seek insurance policies in their state’s Marketplace qualify for assistance with the coverage costs. Individuals with incomes below $58,320 (400% of the Federal Poverty Level in 2023) can receive federal tax credits which lower premium costs.

The ACA set new standards for all individually purchased plans and eliminated many historically discriminatory practices that affected disadvantaged women in particular. Today, plans are prohibited from charging women higher premiums than men for the same level of coverage (gender rating) or from disqualifying women from coverage because they had certain pre-existing medical conditions, including pregnancy. All direct purchase plans must also cover certain “essential health benefits” (EHBs) that fall under 10 different categories, including maternity and newborn care, mental health, and a wide range of preventive health care services. Prior to the ACA, many individual plans excluded maternity care benefits or required policyholders to purchase costly riders to obtain maternity coverage.

Medicaid

Medicaid, the state-federal program for individuals with low incomes, covered 19% of adult women ages 19 to 64  in 2022, compared to 14% of men. Historically, to qualify for Medicaid, women had to have very low incomes and be in one of Medicaid’s eligibility categories: pregnant, mothers of children 18 and younger, a person with a disability, or over 65. Women who didn’t fall into these categories typically were not eligible regardless of how low their incomes were. The ACA allowed states to broaden Medicaid eligibility to most individuals with incomes less than 138% of the FPL regardless of their family or disability status, effective January 2014. As of December 2023, 40 states and Washington, D.C. have expanded their Medicaid programs under the ACA, but 10 states have not and still base eligibility on historical categorical and income standards. For example, in Mississippi, the Medicaid income eligibility for parents is 28% of the FPL, which was approximately $6,900 for a family of three in 2023. Therefore, parents in families of three in Mississippi with incomes above this amount do not qualify for Medicaid because their income exceeds the state’s eligibility level.

Medicaid covers the poorest segment of women in the U.S. Forty-three percent of women with incomes below 200% of the FPL and 52% of women with incomes below 100% of the FPL have Medicaid coverage. By federal law, all states must provide Medicaid coverage to pregnant women with incomes up to 133% of the FPL through 60 days postpartum. However, in recent years, there has been a growing interest in expanding the length of the postpartum coverage period and, as of March 2024, nearly all states have taken steps to extend postpartum Medicaid coverage to one year.

Medicaid covers many health services that are essential for women. Medicaid financed 41% of births in the U.S. in 2021 and accounts for 75% of all publicly-funded family planning services. State Medicaid programs are prohibited from charging any cost-sharing for pregnancy-related care or family planning services. Over half of states have established programs that use Medicaid funds to cover the costs of family planning services for women with low incomes who remain uninsured, and most states have limited scope Medicaid programs to pay for breast and cervical cancer treatment for certain uninsured women with low incomes. Conversely, coverage for abortion is very limited under Medicaid as a result of the Hyde Amendment, a rider to federal appropriations that bans any federal funds from being used to pay for abortions unless the pregnancy is determined to be a result of rape or incest or poses a threat to the pregnant person’s life (more on abortion in the following section).

Uninsured Women

In 2022, approximately 10% of non-elderly women (9.5 million) were uninsured. This rate is slightly lower than that of men (13%) because, on average, women have lower incomes and have been more likely to qualify for Medicaid than men under one of Medicaid’s eligibility categories: pregnant, parent of children under 18, disability, or over 65. The ACA opened the door for states to eliminate the categorical requirements, but the gender gap in the insured rates between men and women persists.

The disadvantage uninsured individuals experience in accessing care and health outcomes is well established. Compared to women with insurance, those who are uninsured have lower use of important preventive services such as mammograms, Pap tests, and timely blood pressure checks. They are also less likely to report having a regular doctor, which is associated with better access to care and higher rates of use of recommended preventive services.

Women with lower incomes, women of color, and non-citizen women are at greater risk of being uninsured (Figure 4). One in 5 Hispanic (20%) and American Indian and Alaska Native (20%) women and 18% of women with incomes under 200% of the FPL are uninsured. A higher share of single mothers are uninsured (10%) than women in two-parent households (8%) (data not shown). Most uninsured women live in a household where someone is working; 69% are in families with at least one adult working full-time; and 82% are in families with at least one part-time or full-time worker (data not shown).

Health Insurance Coverage Among Non-Elderly Women by Selected Characteristics, 2022

Many women who are uninsured are eligible for financial assistance with the costs of coverage. A fifth of uninsured women (20%) are eligible for Medicaid coverage but are not enrolled in the program (Figure 5). One in 4 uninsured women (39%), about 3.7 million women, qualify for subsidies to cover the premium costs and some of the out-of-pocket costs of Marketplace plans but may not be aware of coverage options or may face barriers to enrollment. However, 7% of uninsured women live in states that have not adopted the ACA Medicaid expansion and fall into a “coverage gap” because their incomes are above the thresholds to qualify for Medicaid but below the levels to qualify for Marketplace tax credits (below 100% of the FPL). Approximately 1 in 3 (34%) uninsured women are not eligible for any assistance with health coverage due to their immigration status, their income, or because they have an offer of coverage from their employer.

Eligibility for Assistance under the ACA Among Uninsured Women Ages 19-64, 2022

There is considerable state-level variation in uninsured rates across the nation, ranging from 21% of women in Texas to 3% of women in Washington D.C., Massachusetts, and Vermont (Figure 6). Of the 15 states with uninsured rates above the national average (10%), nine have not adopted the ACA Medicaid expansion.

Uninsured Rates Among Nonelderly Women, by State, 2022

Medicare

Medicare is the federal program that provides health coverage to virtually all people ages 65 and older as well as younger people with long-term disabilities. In 2020, Medicare covered 35 million women, including nearly 31 million ages 65 and older, and over 4 million under age 65 with long-term disabilities.

More than half (55%) of all Medicare beneficiaries are women and 45% are men. The population of women covered by Medicare is diverse, with varying social, economic, and health circumstances. Women live longer than men on average (79 years vs. 73 years life expectancy at birth in 2021), and many live with certain chronic illnesses, cognitive and mental impairments, and functional problems at higher rates than men. A higher share of older women than men also experience urinary incontinence, depression, osteoporosis, pulmonary disease, and Alzheimer’s/dementia. Medicare plays a key role in supporting the health and well-being of women, covering a broad range of essential services, including preventive, primary and specialty care, and prescription drugs. However, reflecting Medicare’s original role as a program to serve the medical needs of older adults, coverage of services for enrollees of reproductive age may be more limited. For example, there is no federal requirement for Medicare to cover all contraceptive services and supplies for the purpose of preventing pregnancy for younger Medicare enrollees with permanent disabilities.

Another gap in the Medicare program is the absence of coverage for long-term care services and supports (LTSS), such as nursing home stays and home care services, which many older adults need and seek but are expensive and unaffordable for some. Compared with men, women are more likely to require these services because they have more chronic conditions, have higher rates of physical and cognitive impairments, and are more likely to live alone. Medicare only covers time-limited LTSS after a hospitalization and does not cover ongoing LTSS for those with chronic conditions or functional impairments. Some older women can qualify for Medicaid for LTSS, but only if they have low incomes and, in some cases, must spend down most of their assets. Just a small share of seniors have private long-term care insurance to help cover some of the costs of LTSS. As a result, unless they have incomes low enough to qualify for Medicaid, many older people do not have any coverage for LTSS and rely on unpaid caregiving provided by family, friends, or neighbors. The majority of informal caregivers are women, who are most commonly caring for aging parents and spouses.

Women with Medicare also tend to have more modest incomes than men—a consequence of smaller lifetime savings, lower retirement income, and divorce and widowhood that result in only one income. While Medicare covers many necessary health care services, gaps in benefits, cost-sharing requirements, and spending on premiums for Medicare and supplemental coverage can translate into high out-of-pocket expenses for some people in the program. In 2020, 13% of women and 11% of men with Medicare reported that they had faced cost-related challenges in the past 12 months, such as trouble getting care due to cost or problems paying medical bills. These challenges are more common among female Medicare enrollees who are Black (22%) and Hispanic (18%), do not have a bachelor’s degree (15%), and those with annual incomes below $20,000 (20%).

How Do Health Care Costs and Scope of Benefits Affect Women’s Access to Care?

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The ACA set national standards for the scope of benefits offered in private plans. As mentioned earlier, many insurance plans had adopted practices that discriminated against women that were addressed in the ACA. In addition to the broad categories of essential health benefits (EHBs) offered by Marketplace plans, all privately purchased plans must cover maternity care, which had been historically excluded from most individually purchased plans requiring the purchase of an expensive rider for that benefit to be covered. In addition, most private plans must cover preventive services without co-payments or other cost sharing. This includes screenings for breast and cervical cancers, well-woman visits (including prenatal visits), prescribed contraceptives, breastfeeding supplies and supports such as breast pumps, and several services for sexually transmitted infections (STI). Higher shares of women with private and Medicaid coverage report having had recommended preventive services such as mammograms, Pap screenings or colonoscopies compared to those who were uninsured (Figure 7).

Share of women who have had a mammogram, cervical cancer screening, or colon cancer screening in the past two years

Affordability of coverage continues to be a significant concern for many women, both for those who are uninsured as well as those with coverage. The leading reason why uninsured adults report that they have not obtained coverage is that it is too expensive. Under employer-sponsored insurance, the major source of coverage for women, 61% of all covered workers with a general annual deductible have deductibles of at least $1,000 for single coverage. Despite having coverage, many insured women (31%) report that their plans did not always cover all of their needed care or paid less than they expected (Figure 8).

Share of Insured Women 18-64 Who Experienced Problems Using their Health Insurance in the Past 12 Months

What Are the Issues Affecting Women’s Care and Access?

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Reproductive Health

Maternity Care

In 2022, there were approximately 3.6 million births in the U.S. Childbirth is the leading reason for hospitalization, and most private insurance plans and the Medicaid program are required to cover care associated with childbirth. Medicaid covers about 4 in 10 births nationally and, in some states, more than half. The Medicaid program prohibits plans from charging out-of-pocket charges for pregnancy-related care, and coverage lasts through one year postpartum in most, but not all, states. For people with private insurance, which finances just over half of  births (51%), the federal Pregnancy Discrimination Act requires employer plans to cover maternity care benefits. However, even for those with private insurance, a pregnancy often comes with significant out-of-pocket health expenses that can reach thousands of dollars. A KFF analysis estimated that women enrolled in large group plans pay around $3,000 out-of-pocket for costs associated with pregnancy, childbirth, and post-partum care. On average, Caesarean section births, which account for approximately one-third of births in the U.S., are significantly more expensive than vaginal deliveries. The ACA also requires individual plans to cover maternity care and bans plans from implementing restrictions on coverage of pre-existing health conditions, including pregnancy.

In recent years, there has been growing attention to pregnancy-related quality of care and maternal health. Maternal and infant mortality rates in the U.S. are far higher than those in similarly large and developed countries, and people of color are at a considerably higher risk for poor maternal and infant health outcomes compared to their White peers. Despite continued advancements in medical care, rates of maternal mortality and morbidity and preterm birth have been rising in the U.S., characterized by stark racial disparities. Notably, rates of pregnancy-related death (deaths within one year of pregnancy) among Native Hawaiian or Pacific Islander (NHPI), Black, and American Indian and Alaska Native (AIAN) women are over four to two times higher, respectively, compared to the rate for White women (14.1 and 62.8 vs. 39.9 vs. 32 per 100,000 births) (Figure 9). The Centers for Disease Control and Prevention (CDC) has determined that many of these pregnancy-related deaths were preventable, caused by cardiac-related conditions, infection, hemorrhage, and mental health conditions, including substance use. Maternal death rates increased during the COVID-19 pandemic and racial disparities widened for Black women. Black, AIAN, and Native Hawaiian or Pacific Islander (NHPI) women also have higher shares of preterm births, low birthweight births, or births for which they received late or no prenatal care compared to White women. Infants born to Black, AIAN, and NHOPI people have markedly higher mortality rates than those born to White women.

Pregnancy-Related Mortality (per 100,000 births) by Race/Ethnicity, 2017-2019

The disparities in maternal and infant health are symptoms of broader underlying social and economic inequities that are rooted in racism and discrimination. Differences in health insurance coverage and access to care play a role, but notably, disparities in maternal and infant health persist even when controlling for certain underlying social and economic factors, such as education and income, pointing to the roles racism and discrimination play in driving disparities. Moreover, with the overturning of Roe v. Wade and the numerous states that have enacted abortion bans across the nation, increased barriers to abortion for people of color may widen the already existing large disparities in maternal and infant health.

There have been efforts at the policy level and in clinical circles to improve maternal health and address disparities. The Biden Administration issued the White House Blueprint for Addressing the Maternal Health Crisis, outlining policy priorities and strategies. These include funding to expand and diversify the perinatal workforce, enhancing training for clinicians to better listen to patient concerns, investing in maternal mental health care, and strengthening perinatal care in rural communities. At the state and local levels, multidisciplinary maternal mortality review committees and perinatal quality collaboratives have focused on data collection and reviewing the causes behind pregnancy-related deaths in their communities to try to prevent deaths in the future.

Fertility Assistance

Many people require fertility assistance to have children. These services include diagnostic services, treatment services, and fertility preservation. People seek fertility assistance for several reasons, such as if they or their partner has infertility, or because they are in a same-sex relationship or are single and desire children. Both female and male factors contribute to infertility, including problems with ovulation (when the ovary releases an egg), structural problems with the uterus or fallopian tubes, problems with sperm quality or motility, and hormonal factors. About 25% of the time, infertility is caused by more than one factor, and in about 10% of cases, infertility is unexplained. Infertility estimates, however, do not account for LGBTQ+ or single individuals who may also need fertility assistance for family building. Thus, there are varied reasons that may prompt individuals to seek fertility care.

Despite a need for fertility services, fertility care in the U.S. is inaccessible to many due to the cost. Fertility treatments are expensive and often are not covered by insurance. While some private insurance plans cover diagnostic services, there is very little coverage for costly treatment services such as intrauterine insemination, in vitro fertilization, and cryopreservation.

Most people who use fertility services must pay out of pocket, with costs often reaching thousands of dollars depending on the services received. This means that in the absence of insurance coverage, fertility care is out of reach for many people. Few states require private insurance plans to cover fertility assistance services, but these only apply to a subset of insurance plans and beneficiaries. Additionally, even fewer states have any fertility coverage requirement under Medicaid, the health coverage program for people with low incomes.

Abortion

Nearly 1 in 4 women in the U.S. have an abortion in their lifetime. Starting with the 1973 landmark Supreme Court ruling in Roe v. Wade, women in the U.S. had the right to abortion up until the point of viability, regardless of where they lived. On June 24, 2022, the Supreme Court issued a ruling in Dobbs v. Jackson Women’s Health Organization that overturned the constitutional right to abortion as well as the federal standards of abortion access, established by prior decisions in the cases Roe v. Wade and Planned Parenthood v. Casey. The Dobbs decision allows states to set policies regarding the legality of abortions and establish gestational limits. Access to and availability of abortions vary widely between states, with large swaths of the country banning or restricting almost all abortions, with few exceptions, and some states enshrining and protecting abortion rights (Figure 10).

Status of Abortion Bans in the United States as of February 21, 2024

Decades of research have shown that abortion is a very safe medical service. Still, despite its strong safety profile, abortion is the most highly regulated medical service in the country and is now banned or restricted to early gestational stages in many states. In addition to bans on abortion altogether, many states impose other limitations on abortion that are not medically indicated, including waiting periods, ultrasound requirements, and parental notification and consent requirements. These restrictions typically delay receipt of services and can increase costs associated with abortion care.

Paradoxically, the total number of abortions in the U.S. appears to have increased slightly following the Dobbs decision. This rise could be due to increased interstate travel for abortion access, expanded in-person and virtual/telehealth capacity to see patients, increased measures to protect and cover abortion care for residents and out-of-state patients, and the broader availability of low-cost abortion medication. However, these aggregated trends mask the sharp decline in abortions provided in states with total bans or severe restrictions as well as the hardships that many pregnant people experience in accessing abortion care.

Obtaining an abortion can be costly, with median costs exceeding $500 in out-of-pocket expenses for patients who self-pay. On average, the costs are higher for abortions in the second trimester than in the first trimester. People may have to travel if abortions are prohibited or not available in their area, adding costs related to travel and lodging. Given abortion bans and Hyde Amendment restrictions on payment for abortions under Medicaid and state restrictions on insurance coverage of abortion services, many people pay for abortion services out of pocket. Some people are able to receive assistance from local abortion funds if they need financial support to obtain abortion services, particularly if they have to travel out of state or have low incomes and cannot afford the costs of the abortion. For some, however, the costs of abortion services and travel will put the service out of reach and force them to have a birth that is not desired or is a risk to their health or life.

Insurance coverage for abortion services is heavily restricted in some state-regulated private insurance plans and public programs, like Medicaid and Medicare. Private insurance covers most women of reproductive age, and states can choose whether abortion coverage is included or excluded in private plans that are not self-insured. Prior to the Dobbs ruling, about half of the states had enacted private plan restrictions and banned abortion coverage from ACA Marketplace plans. Since the Dobbs ruling, some of these states have also banned the provision of abortion services altogether. However, 10 states have enacted laws that require private plans to cover abortion, typically without cost-sharing.

The Hyde Amendment has banned the use of federal funds for abortion unless the pregnancy is a result of rape, incest, or it endangers the woman’s life. States may use non-federal state-only funds to pay for abortions under other circumstances for women covered by Medicaid, which 17 states currently do. However, more than half (56%) of women covered by Medicaid live in states where they have no coverage for abortion, unless they qualify for an exception.

The impact of the Dobbs decision goes far beyond abortion care. It has also affected the provision of related health care services, including management of miscarriages and pregnancy-related emergencies, treatments for cancer and other chronic illnesses, contraceptive options, and much more. Women with low incomes, women of color, sexual/gender minorities, and other pregnant people have been disproportionately affected by the sweeping impacts of this ruling, as they are less likely to have the resources to travel potentially long distances to seek care.

Since the Dobbs ruling, there has been a constant stream of legal challenges, with a plethora of cases that seek to challenge abortion bans as well as block access to abortion medication or services. While most of the litigation is in state courts, in 2024 the Supreme Court considered a case involving the FDA’s approved conditions for using mifepristone, one of the drugs used for medication abortion, as well as a case about potential conflict between state-level abortion bans and Emergency Medical Treatment and Labor Act (EMTALA), the federal law that requires hospitals to provide care to stabilize patients experiencing medical emergencies. However, in June 2024 the Supreme Court did not rule on the merits of either of these cases, maintaining the status quo for now and allowing for litigation in the future. 

Contraception

Contraceptive care is an important component of overall health care for many women and people capable of becoming pregnant. Federal and state policies shape access to and the availability of contraceptive care, but factors such as provider characteristics, as well as individual preferences and experiences also impact contraceptive choices and use. For most people, private insurance coverage and Medicaid greatly reduce or eliminate financial barriers to contraceptive care. However, access is still limited in many parts of the U.S. with more than 19 million women living in contraceptive deserts where they may not have access to a health center offering the full range of contraceptive methods. There have been more efforts to broaden contraceptive availability outside of traditional clinical settings, including through commercial apps that use telehealth platforms, state efforts to allow pharmacists to prescribe birth control, and, most recently, over-the-counter (OTC) access to contraceptives without a traditional prescription.

The importance and impact of contraceptives in women’s lives are unquestionable. The 2022 KFF Women’s Health Survey highlighted that the majority of females 18 to 64 (90%) have used contraception at some point in their reproductive years, with most reporting they have used oral contraceptives and male condoms at some point in their lives (Figure 11). Many women have used more than one contraceptive method throughout their lifetime (76%), a reflection of changing needs and preferences across the lifespan.

Women's Use of Different Contraceptive Methods

The ACA requires that most private plans cover contraceptive services for females without cost-sharing – this includes patient education and counseling and FDA-approved methods of contraception with a prescription. This provision has dramatically reduced cost-sharing for contraception among females with private insurance plans, though some privately insured females who are eligible for no-cost coverage are still paying some of the cost of their contraceptives (Figure 12). Reasons include someone using a brand-name contraceptive that is not in the plan’s formulary or consumers unaware of or not offered a generic alternative.

Decline in Out of Pocket Spending on Contraception Following Passage of ACA's Contraceptive Coverage Requirement

Despite its far-reaching impact, the ACA’s requirement for contraceptive coverage has been challenged in the courts on multiple occasions, with three cases reaching the Supreme Court. The earlier cases, Burwell v. Hobby Lobby (2014) and Zubik v. Burwell (2016), challenged the Obama Administration’s regulations implementing the contraceptive coverage requirement, contending that the requirement violated some employers’ religious rights. The most recent cases, Little Sisters of the Poor v. Pennsylvania (2020) and Trump v. Pennsylvania (2020), involved regulations issued by the Trump Administration, which currently exempt employers with religious objections from providing contraceptive coverage to their employees.

For people with lower incomes, the Medicaid program is the primary funding source for contraceptives. The federal Medicaid statute establishes minimum standards, and, for decades, has classified family planning as a mandatory benefit category that all state programs must cover. States may not charge any out-of-pocket costs for family planning services and must allow beneficiaries to see any Medicaid provider within their state for family planning care. Many states also have programs that provide Medicaid coverage just for family planning services to people who have lower incomes but do not qualify for full Medicaid benefits.

Additionally, the federal Title X family planning program, administered by the HHS Office of Population Affairs (OPA), is the only federal program specifically dedicated to supporting the delivery of family planning care for individuals who are uninsured and have lower incomes. The program provides funding to more than 4,000 health clinics, public health departments, and nonprofit agencies across the country to deliver contraceptives and other family planning services to individuals with low incomes. Title X-funded providers must follow the program’s requirements, which include offering a broad range of family planning methods for low or no cost and ensuring confidentiality for adolescents. Federal rules also require that participating clinics offer their patients non-directive pregnancy option counseling that includes abortion, adoption, and prenatal referral for those who seek those services.

While there have been numerous over-the-counter contraceptive methods available (e.g. condoms, spermicides), in July 2023, the Food and Drug Administration (FDA) approved the first over-the-counter daily oral contraceptive pill, known as Opill. FDA’s approval of Opill makes it the most effective form of contraception available OTC intended for regular use. Private insurers and Medicaid generally require a prescription to cover OTC products, so even though Opill and other OTC products are available without needing a prescription from a clinician, coverage without a prescription will be limited without federal or state action.

Mental Health

Mental health has emerged as a rapidly growing concern in recent years, with 90% of Americans saying there is a mental health crisis in a recent KFF-CNN poll. Women experience several mental health conditions such as anxiety, depression, and eating disorders more frequently than men, and some also experience mental health disorders that are unique to women, such as perinatal depression (including prenatal and postpartum depression) and premenstrual dysphoric disorders that may occur when hormone levels change.

A KFF survey found that in 2022, a significantly higher share of women (50%) than men (35%) thought they needed mental health services in the past two years. The rates were particularly higher among younger women (64% of women ages 18-25). However, barriers to accessing timely and affordable mental health services persist for many. Almost half of women who said they needed mental health services and tried to get care were able to get an appointment within a month, but more than one-third of women had to wait longer. Among those who could not get an appointment, women cite limited provider availability and cost as the main reasons they were unable to access mental health care. Significantly larger shares of women who are uninsured (60%) say they could not get an appointment due to affordability reasons, compared to those who have health insurance either through private plans (33%) or Medicaid (30%) (Figure 13).

Cost Barriers to Mental Health Services Among Women

Prior KFF research has documented the challenges some consumers with health insurance face when finding in-network mental health care. In fact, 2 in 10 privately insured women with a mental health care appointment in the past two years say their provider did not accept their insurance. The option is effectively not available to women who have low incomes or are on Medicaid and lack the financial resources to pay for out-of-network care.

Among the COVID-19 pandemic and the rise of racist attacks, the ongoing opioid epidemic is a commonly cited stressor that has exacerbated long-standing mental health issues and prompted growing demand for mental health services in the past several years. Women face unique gender and sex-related differences when it comes to substance use, including greater physical, psychological, and social harms associated with drug use. Use of certain substances in women has been linked to increased rates of depression and anxiety disorders. Studies have also shown that women who use substances are at risk for issues related to pregnancy, fertility, breastfeeding, menstrual cycle, and more. All of these factors also shape the availability of treatment and services accessible to women.

Intimate Partner Violence Against Women

Intimate partner violence (IPV), defined as sexual violence, stalking, physical violence, and psychological aggression perpetrated by a current or former intimate partner, affects nearly a third of all Americans at some point in their lives. Although IPV affects men and women of all ages, women experience IPV at higher rates. Rates are higher among some groups of women, particularly those who are young, Black, American Indian or Alaska Native, and LGBTQ. It is difficult to quantify the number of people who experience IPV, as many cases are not reported. Some studies have estimated 9 million women in the U.S. experience sexual violence, physical violence, or stalking by an intimate partner in a single year. People who experience IPV are more likely to experience a range of health problems such as chronic pain, cardiovascular problems, and neurological problems. Both the CDC and U.S. Preventive Services Task Force (USPSTF) have identified IPV as a significant public health issue in the US.

Several federal programs and laws fund health care services and supports to survivors of IPV. The Violence Against Women Act (VAWA) has a broad scope, covering domestic violence, sexual harassment, stalking, and sexual assault. VAWA provides grants to states, local governments, and other organizations to establish their own violence-related programs and protocols. While some of the focus of VAWA and other public policies is prosecution of those who commit violence, provisions in VAWA also address health care coverage and costs for people who have experienced IPV.

It is well recognized that the health care system can serve as a site of IPV screening and support, and some professional medical organizations recommend that clinicians screen women for IPV. Under the ACA, IPV screening is considered a preventive service as screening is recommended by the USPSTF  and Health Resources and Services Administration (HRSA) preventive services for women. When health care providers routinely screen patients for IPV, it helps identify cases and connect survivors to resources and supports. However, this can be challenging as a KFF survey of OBGYNs found that many clinicians say they do not have sufficient resources within their practices to provide follow-up services when cases of IPV are identified. Connections to community-based services are particularly important for clinicians to be able to care for patients who disclose IPV.

Future Outlook

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Women’s health has become one of the most politicized issues in society and health care. The overturning of Roe v. Wade in 2022 marked a seismic change in an important aspect of women’s health care that has implications for all pregnancy-related care and women’s economic future and well-being. The high and rising rates of maternal mortality and morbidity in the U.S. and the persistent gaps in mortality rates experienced by women of color highlight the need to address the roles that poverty, racism, and discrimination play in women’s health. Some of the key challenges that remain to be addressed in women’s health include:

  • How to address and eliminate the persistent inequities in health coverage and outcomes experienced by women of color
  • How to build a delivery system and develop coverage policies that is responsive to the reproductive and sexual health needs of women and other gender minorities to promote optimal health outcomes
  • How to shape policies that protect women with low incomes from experiencing financial barriers to care
  • Identifying and implementing policies that improve maternal health outcomes and also eliminate the structural and systemic barriers to care
  • Providing access to comprehensive care to pregnant people who live in areas where abortion is unavailable due to state-level bans and restrictions
  • How to provide care to women dealing with issues that are heavily stigmatized and marginalized, such as intimate partner violence and mental health challenges.

Resources

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Citation

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Ranji, U., Diep, K., Gomez, I., Sobel, L., & Salganicoff, A., Health Policy Issues in Women’s Health. In Altman, Drew (Editor), Health Policy 101, (KFF, July 2024) https://www.kff.org/health-policy-101-health-policy-issues-in-womens-health/ (date accessed).

Race, Inequality, and Health

Table of Contents

Introduction

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Despite being documented for decades, racial and ethnic disparities in health and health care persist with some widening in recent years. The COVID-19 pandemic and the nationwide racial justice movement in 2020 increased attention and calls to address racial and ethnic disparities in health and recognition of their root causes, including the ongoing impacts of racism and discrimination. Addressing health disparities is not only important from an equity standpoint but also for improving the nation’s overall health and economic prosperity. This chapter provides an overview of racial and ethnic disparities in health and health care and the factors that drive them, examines the actions to address them, and outlines future considerations.

What are Health and Health Care Disparities?

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Health and health care disparities refer to differences in health and health care between groups that stem from broader social and economic inequities. There are multiple definitions of health disparities. Healthy People 2030 defines a health disparity as “a particular type of health difference that is linked with social, economic, and/or environmental disadvantage” and that adversely affects groups of people who have systematically experienced greater obstacles to health. The Centers for Disease Control and Prevention (CDC) defines health disparities as “preventable differences in the burden, disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups and communities.” A health care disparity typically refers to differences between groups in health insurance coverage, affordability, access to and use of care, and quality of care. The terms “health inequality” and “inequity” are also sometimes used to describe unjust differences. Racism, which the CDC defines as the structures, policies, practices, and norms that assign value and determine opportunities based on the way people look or the color of their skin, results in conditions that unfairly advantage some and disadvantage others, resulting in negative mental and physical health outcomes for marginalized groups.

Reflecting the intersectional nature of people’s identities, some individuals experience disparities across multiple dimensions such as race and ethnicity, gender, or sexual orientation.  Beyond race and ethnicity, disparities occur across other factors, including socioeconomic status, age, geography, language, gender, disability status, citizenship status, and sexual identity and orientation. Federal efforts to reduce disparities focus on designated priority populations, including “members of underserved communities: Black, Latino, and Indigenous and Native American persons, Asian Americans and Pacific Islanders and other persons of color; members of religious minorities; lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons; persons with disabilities; persons who live in rural areas; and persons otherwise adversely affected by persistent poverty or inequality.” These groups are not mutually exclusive and often intersect in meaningful ways. Disparities also occur within subgroups of broader racial and ethnic groups, such as ethnic identity, immigration status, and English proficiency.

Health equity generally refers to individuals achieving their highest level of health through the elimination of disparities in health and health care. Healthy People 2030 defines health equity as the attainment of the highest level of health for all people and notes that it requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and health and health care disparities. The CDC describes health equity as when everyone has the opportunity to be as healthy as possible.

What Factors Drive Racial and Ethnic Health Disparities?

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The U.S. has a long history of policies and events that have resulted in stark differences in access to resources, opportunities, and power that contribute to racial and ethnic disparities in health today. Dating back to slavery and colonization of the Americas, people of color have been subject to abuse and mistreatment, including medical exploitation and experimentation, family separation, and efforts to eliminate cultural practices and languages. Historic discriminatory policies, such as redlining, have lasting effects today, leading to residential segregation of Black and Hispanic people into urban neighborhoods with more limited resources and increased health risks, including climate-related risks. Anti-immigrant policies have excluded and discriminated against certain groups, contributing to “othering” and “perpetual foreigner” stereotypes, particularly among Asian immigrants, with a resurgence in anti-Asian rhetoric amid the COVID-19 pandemic. Within medicine, disproven beliefs about biological differences by race have led to race permeating clinical decision making and treatment in multiple ways, including through providers’ attitudes and implicit biases, disease stereotyping and clinical nomenclature, and its use in clinical algorithms, tools, and treatment guidelines.

Underlying inequities in social and economic factors that reflect historic and contemporary policies drive racial and ethnic disparities in health (Figure 1). Though health care is essential to health, studies suggest that social and economic factors, often referred to as social determinants of health, are the primary drivers of health outcomes. These include factors such as access to housing and food and economic and educational opportunities. Hispanic, Black, American Indian or Alaska Native (AIAN), and Native Hawaiian or Pacific Islander (NHPI) people fare worse compared to White people across many social and economic factors. Experiences for Asian people are mixed, although some subgroups of Asian people fare worse compared to White people, and Asian immigrants face certain additional challenges.

Experiences with unfair treatment and discrimination negatively impact health and well-being. Despite growing calls to address racism, many adults continue to experience unfair treatment and discrimination in their daily lives and in health care settings. A 2023 KFF survey shows that at least half of AIAN (58%), Black (54%), Hispanic adults (50%), and about 4 in 10 Asian adults (42%) say they experienced at least one type of discrimination in daily life in the past year. These experiences include receiving poorer service than others at restaurants or stores; people acting as if they are afraid of them or as if they aren’t smart; being threatened or harassed; or being criticized for speaking a language other than English. Consistent with other research, which shows that racism has negative effects on mental health and results in certain negative physical health outcomes, the KFF survey finds that adults who report experiences with discrimination in daily life are more likely than others to report adverse effects from worry or stress as well as regular feelings of loneliness, anxiety, and depression. Among those with discrimination experiences, 4 in 10 (40%) say they “always” or “often” felt anxious in the past year, compared to 14% of adults who rarely or never experience such discrimination (Figure 2). Similarly, those with discrimination experiences in their daily life are more than three times as likely as others to say they always or often felt lonely (26% vs. 7%) or depressed (25% vs. 7%) in the past year.

Adults Who Experience Discrimination Are More Likely Than Those Who Do Not To Report Feeling Anxious, Lonely, Or Depressed

Racism and discrimination also negatively affect people’s health care experiences. Black, Hispanic, AIAN, and Asian adults report higher levels of unfair treatment when seeking health care than their White counterparts and are more likely to report having certain negative experiences with a health care provider because of their race and ethnicity (Figure 3). Reflecting these experiences, half or more of Hispanic, Black, and AIAN adults say they prepare for possible insults from providers or staff and/or feel they must be very careful about their appearance to be treated fairly during health care visits at least some of the time. About a quarter of adults who experienced unfair treatment, a negative experience with a provider, or a language access challenge say it led to worse health, being less likely to seek care, and/or switching providers.

About One In Five Black Adults And One In Ten Hispanic, Asian, And AIAN Adults Report Unfair Treatment By A Health Care Provider Due To Race Or Ethnicity

Why Is It Important to Address Disparities?

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Addressing disparities in health and health care is important not only from an equity standpoint but also for improving the nation’s overall health and economic prosperity. Racial and ethnic health and health care disparities result in higher rates of illness and death across a wide range of health conditions, limiting the overall health of the nation. Research further finds that health disparities are costly, resulting in excess medical care costs and lost productivity, as well as additional economic losses due to premature deaths each year.

It is increasingly important to address health disparities as the population becomes more diverse and stark income inequalities persist. The U.S. Census Bureau projects that people of color will account for over half (52%) of the population in 2050, with the largest growth occurring among people who identify as Asian or Hispanic (Figure 4). Over time, the population has become increasingly racially diverse, reflecting shifting immigration patterns, a growing multiracial population, as well as adjustments to how the Census Bureau measures race and ethnicity. Over time, income inequality within the U.S. has also widened. As of 2022, the top 10% of households in the U.S. had incomes above $216,000 compared with incomes at or below $17,100 among the lowest 10% of households.

People Of Color Are Projected To Make Up Over Half Of The U.S. Population As Of 2050

What Is the Status of Racial and Ethnic Disparities in Health Today?

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Major recognition of health disparities began nearly four decades ago. In 1985, the Report of the Secretary’s Task Force on Black and Minority Health (commonly known as the Heckler Report) documented persistent health disparities that accounted for 60,000 excess deaths each year and synthesized ways to advance health equity. The Heckler Report led to the creation of the U.S. Department of Health and Human Services Office of Minority Health and influenced federal recognition of and investment in many aspects of health equity. Federal recognition of disparities continued in 2003 with the Institute of Medicine’s Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care report, which identified systemic racism as a major cause of health disparities in the United States.

Despite the recognition and documentation of disparities for decades and overall improvements in population health over time, many disparities persist, and in some cases, have widened over time. Analysis across a broad range of measures of health finds that Black and AIAN people fare worse than their White counterparts across half or more of these measures. Data for Hispanic people are more mixed relative to White people, with them faring better on some measures but worse on others. In the aggregate, Asian people fare the same or better than White people on many measures of health, although this finding masks disparities among subgroups of the population. Data gaps limit the ability to examine disparities among NHPI people; where data are available, they point to disparities, particularly for certain subgroups of this population. Some examples of disparities in health outcomes include:

  • Black infants were more than two times as likely to die as White infants, and AIAN and NHPI infants were roughly twice as likely to die as White infants as of 2022 (Figure 5). Black and AIAN women also had the highest rates of pregnancy-related mortality across groups between 2017 and 2019.
  • In 2022, the age-adjusted mortality rates for diabetes for AIAN, NHPI, and Black people were about twice as high as the rate for White people; Hispanic people also had a higher diabetes death rate compared to White people.
  • Although Black people did not have higher cancer incidence rates than White people overall and across most types of cancer, they were more likely to die from cancer in 2020.
  • In 2021, the HIV diagnosis rate for Black people was roughly eight times higher than the rate for White people, and the rate for Hispanic people was about four times higher than the rate for White people. AIAN and NHPI people also had higher HIV diagnosis rates compared to White people.
Black, AIAN, and NHPI People Have Higher Infant Mortality Rates Compared To Other Groups  

There also are ongoing racial and ethnic disparities in health coverage and access to care. Overall, Black, Hispanic, and AIAN people fare worse compared to White people across many measures of health coverage and access to and use of care. Despite large gains in coverage across groups since the Affordable Care Act (ACA), as of 2022, nonelderly AIAN, Hispanic, Black, and NHPI people were more likely to be uninsured compared to their White counterparts (Figure 6), with even higher uninsured rates among noncitizen Hispanic adults. In addition, Hispanic, Black, Asian, AIAN, and NHPI adults are more likely than White adults to report not having a personal health care provider, and Hispanic, Black, AIAN, and NHPI adults are more likely than White adults to report not seeing a doctor in the past 12 months because of cost.

Despite Large Gains In Coverage, Racial And Ethnic Disparities Remain

The COVID-19 pandemic widened some racial and ethnic health disparities, including in life expectancy and mortality. During the height of the COVID-19 pandemic, AIAN, Hispanic, and Black people experienced higher rates of death. Beyond these direct health impacts, the pandemic disproportionately negatively impacted the well-being and social and economic factors that drive health for these and other underserved groups. Largely reflecting the impacts of the pandemic, between 2019 and 2021, there was a sharp drop-off in life expectancy, with particularly large declines among some racial and ethnic groups. AIAN people experienced the largest decline in life expectancy of 6.2 years, followed by Hispanic and Black people (4.1 and 3.6 years, respectively) (Figure 7). Following these declines, provisional data for 2022 show a recent uptick in life expectancy, however, disparities persist across racial and ethnic groups. In 2022, life expectancy was lowest for AIAN people at 67.9 years, followed by Black people, whose expectancy was 72.8 years, both lower compared with the life expectancy of 77.5 years for White people.

At Birth, American Indian or Alaska Native and Black People Have a Shorter Life Expectancy Than White People

What Are Recent Actions to Address Disparities?

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Early in his presidency, President Biden issued a series of executive orders focused on advancing health equity. These included orders that outlined equity as a priority for the federal government broadly and as part of the pandemic response and recovery efforts. Federal agencies were directed to develop Equity Action Plans. In its Equity Action Plan, the Department of Health and Human Services (HHS) outlined a series of strategies, including addressing increased pregnancy and postpartum morbidity and mortality among Black and AIAN women; addressing barriers that individuals with limited English proficiency face in obtaining information, services, and benefits from HHS programs; leveraging grants to incorporate equity consideration into funding opportunities; implementing equity assessments; investing in resources to advance civil rights; and expanding contracting opportunities for small, disadvantaged businesses. The plan builds on earlier efforts that included increasing stakeholder engagement, establishing the Office of Climate Change and Health Equity, and establishing the National Institutes of Health UNITE Initiative to address structural racism and racial inequities in biomedical research. Since the release of its Equity Action Plan, HHS has taken actions to extend postpartum coverage through Medicaid and the Children’s Health Insurance Program (CHIP); issued rules to strengthen patient protections, including nondiscrimination protections; and issued guidance to ensure that telehealth services are accessible to people with disabilities and those with limited English proficiency.

The Centers for Medicare and Medicaid Services (CMS) released an updated framework to advance health equity for people covered by Medicare, Medicaid, CHIP, and the Health Insurance Marketplaces. The framework outlines five priorities, including expanding the collection, reporting, and analysis of standardized data on demographics and social determinants of health; assessing the causes of disparities within CMS programs and addressing inequities in policies and operations; building capacity of health care organizations and the workforce to reduce disparities; advancing language access, health literacy, and the provision of culturally tailored services; and increasing all forms of accessibility to health services and coverage. State Medicaid programs also are focused on addressing racial disparities in health outcomes. States have increasingly requested and/or received approval for waivers that aim to advance equity. Further, a growing number of states have approved or pending waivers with provisions related to addressing health-related social needs, such as food and housing, often focused on specific populations with high needs or risks.

The Administration and Congress took a range of actions to stabilize and increase access to health coverage amid the pandemic, with some extending beyond the Public Health Emergency but others ending. Early in the pandemic, Congress passed the Families First Coronavirus Response Act (FFCRA), which included a temporary requirement that Medicaid programs keep people continuously enrolled during the COVID-19 Public Health Emergency in exchange for enhanced federal funds. Primarily due to this provision, Medicaid enrollment grew substantially and the uninsured rate dropped, with AIAN and Hispanic people experiencing the largest decline. The American Rescue Plan Act (ARPA) of 2021 included an option, made permanent in the Consolidated Appropriations Act 2023, to allow states to extend Medicaid postpartum coverage from 60 days to 12 months, and the majority of states have taken steps to extend postpartum coverage. The Consolidated Appropriations Act also included a requirement for all states to implement 12 months of continuous coverage for children in Medicaid, supporting their coverage stability. However, the broader Medicaid continuous enrollment provision adopted during the Public Health Emergency ended on March 31, 2023, and millions of Medicaid enrollees have been disenrolled since then.

There has been a growing focus on addressing disparities in maternal health. The Biden Administration launched several initiatives focused on addressing inequities in maternal health, including releasing a Blueprint for Addressing the Maternal Health Crisis. Federal agencies also have announced plans and actions to support the Blueprint, including CMS, which released a maternity care action plan; the Health Resources and Services Administration, which committed $90 million to various efforts aimed at improving maternal health, and the Office of the Assistant Secretary for Health, which invested $8.5 million in initiatives designed to reduce pregnancy-related deaths and complications that disproportionately impact people of color and those living in rural areas. Other recent actions have focused on enhancing data on maternal and infant health outcomes and disparities, increasing health care workforce diversity, and expanding access to doulas and other services. States, providers, and health systems; foundations; and communities also are engaged in a broad range of efforts to advance maternal and child health and reduce disparities. Moreover, organizations are advocating for more interventions and support to address maternal mental health and substance use issues, major causes of pregnancy-related mortality and morbidity.

There are efforts underway to increase data available to identify and address disparities. The exclusion of disaggregated data for smaller population groups, including AIAN and NHPI people from many datasets and analyses, limits the visibility and understanding of the health and health care disparities they face and inhibits efforts to address them. There are efforts underway to expand and improve the availability of disaggregated data, including a charge from the Biden Administration to address the systemic lack of disaggregated data. In March 2024, the Office of Management and Budget (OMB) announced revisions to update the minimum standards for collecting and presenting data on race and ethnicity for all federal reporting by adding a new racial category for people who identify as Middle Eastern and North African, moving to collect race and ethnicity through a combined single question instead of asking about Hispanic or Latino ethnicity in a separate question from race, and requiring the collection of detailed racial and ethnic categories. Efforts to disaggregate data may help identify health disparities among smaller racial and ethnic groups and subgroups of larger racial and ethnic groups. They also may inform more culturally attuned and community-informed responses to addressing disparities.

What Are Emerging Issues Related to Racial and Ethnic Health Disparities?

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Growing mental health and substance use concerns may contribute to racial and ethnic health disparities. Drug overdose and suicide deaths have increased since the onset of the COVID-19 pandemic, with some groups particularly affected. These trends may lead to new and widening racial and ethnic disparities. For example, AIAN, Black, and Hispanic people experienced larger increases in drug overdose death rates than White people between 2019 and 2021, resulting in the death rate for Black people newly surpassing that of White people by 2020. As of 2022, AIAN people had the highest suicide death rate, about one and a half times higher than the rate for White people (Figure 8). Despite growing mental health concerns, people of color continue to face disproportionate barriers to accessing mental health care, including lack of health insurance coverage and financial and logistical barriers to accessing care, lack of a diverse mental health care workforce, the absence of culturally informed treatment options, and stereotypes and discrimination associated with poor mental health. As such, it will be important for efforts to expand access to behavioral health to ensure that services address the cultural and linguistic needs of diverse populations.

AIAN People Are More Likely To Die By Suicide Compared To Other Groups

The Dobbs decision may exacerbate the already large racial disparities in maternal health. The decision to overturn the longstanding Constitutional right to abortion and elimination of federal standards on abortion access has resulted in growing variation across states in laws protecting or restricting abortion. These changes may disproportionately impact women of color, as they are more likely to obtain abortions, have more limited access to health care, and face underlying inequities that would make it more difficult to travel out of state for an abortion compared to their White counterparts. Restricted access to abortions may widen the already stark racial disparities in maternal health. It may also have economic consequences associated with the direct costs of raising children and impacts on educational and employment opportunities. Further, women from underserved communities may be at increased risk for criminalization, as prior to the ruling, there were already cases of women being criminalized for their miscarriages, stillbirths, or infant death, many of whom were low-income or women of color.

Coverage losses following the end of the Medicaid continuous enrollment provision may lead to widening disparities in coverage. The Medicaid continuous enrollment provision, which had halted Medicaid disenrollments since March 2020 as a mechanism to stabilize coverage during the COVID-19 pandemic, ended on March 31, 2023. Following the end of the Medicaid continuous enrollment provision, states resumed Medicaid redeterminations and KFF tracking shows that millions of enrollees have been disenrolled from Medicaid. Although some may transition to other sources of coverage including Marketplace coverage or eventually reenroll in Medicaid, others may become uninsured. While the limited data available on disenrollments by race and ethnicity do not show large differences in disenrollment rates by race or ethnicity, people of color are more likely to be affected since they are disproportionately likely to be covered by Medicaid. Moreover, some groups, such as individuals with limited English proficiency and people with disabilities may face increased challenges in completing the Medicaid renewal process, increasing their risk of coverage loss even if they remain eligible for coverage.

Evolving immigration policies may impact the health and well-being of immigrant families. KFF survey data show that although most immigrants say their finances and employment are better as a result of moving to the U.S., many report facing serious challenges, which extend into health care. Although most immigrants are healthy and employed, they have high uninsured rates, face challenges affording care, and encounter linguistic and cultural barriers to care (Figure 9). Many immigrants lack sufficient information to understand how U.S. immigration laws affect them and their families, and immigration-related fears lead some to avoid certain activities, including participating in assistance programs for food, housing, or health care for which they or their children may be eligible. These fears persist despite the Biden Administration reversing Trump Administration public charge regulations with the aim of reducing fears about participating in programs, including Medicaid and CHIP. Some immigrants also face uncertainty about their immigration status, including people with Temporary Protected Status and Deferred Action for Childhood Arrivals (DACA) recipients. DACA implementation is currently limited subject to court orders, and if the DACA program is found to be unlawful, individuals would lose their DACA status and, subsequently, their work authorizations. Immigration-related fears may increase amid a growing focus on immigration enforcement following the lifting of the Title 42 restrictions that had suspended the entry of individuals at the U.S. border to protect public health during the COVID-19 pandemic and increasing anti-immigrant rhetoric leading into the next presidential election.

More Than One in Seven Immigrant Adults Say They Skipped or Postponed Care Due to Cost or Lack of Coverage

Expansions in access to health coverage for immigrants could mitigate some of the challenges they face in accessing health care. States vary in the coverage they provide for their low-income population overall and immigrants specifically. Those that have adopted the ACA Medicaid expansion have broader eligibility for low-income adults, but noncitizen immigrants still face eligibility restrictions for this coverage. Some states have expanded coverage for immigrants by taking up options available in Medicaid and CHIP to cover recent lawfully present immigrant children and pregnant women, and some states have extended coverage to some groups regardless of immigration status through fully state-funded programs. Immigrants in states that have taken up more of these coverage options are less likely to be uninsured. It remains to be seen if additional states will take action to adopt these options or provide state-funded coverage. In May 2024, the Biden Administration published new regulations that will extend eligibility for Marketplace coverage to DACA recipients. Under the regulations, DACA recipients will be newly included in the definition of lawfully present immigrants for the purposes of eligibility to purchase coverage through the ACA Marketplaces and to receive tax credits to help pay for premiums or to enroll in Basic Health Program coverage in states with those programs.

As climate-related events become more common, the impacts on health and health care will increase in both frequency and intensity, with disproportionate impacts on historically marginalized and under-resourced groups. Climate and weather can negatively impact individual and population-level health through multiple pathways, and climate-related health risks are expected to increase going forward. While climate change poses health threats for everyone, people of color, low-income people, and other marginalized or high-need groups face disproportionate risks due to underlying inequities and structural racism and discrimination. For example, historical policies such as redlining have led to residential segregation of Black people into urban neighborhoods that increase their exposure to extreme heat and poor air quality. 

Disparities in access to novel drug therapies and technologies may contribute to and potentially widen racial and ethnic health disparities. People of color have higher rates of chronic diseases, including Alzheimer’s, diabetes, obesity, and other diseases which may benefit from new medical advancements. However, at the same time, they may face increased barriers to accessing new or novel drugs or therapies, which may exacerbate disparities in health going forward.These include affordability challenges due to the high out-of-pocket costs for many new drugs and therapies, which often are not covered by insurance; lack of racial diversity in clinical trials used to test the effectiveness and safety of new drugs and therapies, and underlying biases in clinical decision-making processes, which may increasingly rely on artificial intelligence or algorithms.

Future Outlook

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Looking to the future, racial and ethnic disparities in health and health care remain a persistent problem despite their longstanding recognition and growing calls to address them. These disparities reflect the ongoing impacts of racism that lead to structural inequities in resources and opportunities as well as bias and discrimination in health care and daily life. Some key challenges ahead for eliminating racial and ethnic health and health care disparities include:

  • How to address underlying social and economic inequities that drive disparities in health.
  • How to close racial and ethnic gaps in health coverage and prevent further widening of disparities in health coverage.
  • How to increase diversity of the health care workforce and expand access to culturally and linguistically competent care.
  • How to ensure all communities are visible in data to identify and address disparities.
  • How to protect communities from the uneven impacts of climate change and mitigate widening disparities due to climate-related health risks.
  • How to mitigate the perpetuation of disparities amid the growing use of AI and clinical algorithms to guide clinical decision-making.

Addressing racial and ethnic health and health care disparities is of increasing significance as the diversity of the country grows. It is important not only from an equity standpoint but also for improving the overall health and economic prosperity of our nation.

Resources

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Citation

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Ndugga, N., Hill, L., Pillai, D., & Artiga, S., Race, Inequality, and Health. In Altman, Drew (Editor), Health Policy 101, (KFF, July 2024) https://staging-modern.kff.org/health-policy-101-race-inequality-and-health/ (date accessed).

International Comparison of Health Systems

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Table of Contents

Introduction

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Every health system aims to provide accessible, high-quality care that improves health outcomes at an affordable cost. One way to assess the performance of the United States’ health system is to benchmark it against health systems in similar countries.

Comparing health system performance internationally is complicated, though, as each country has unique political, economic, and social conditions. Because health spending and health outcomes are often correlated with a country’s wealth, this chapter focuses on comparisons of the U.S. to other large and wealthy OECD nations: Australia, Austria, Belgium, Canada, France, Germany, Japan, the Netherlands, Sweden, Switzerland, and the United Kingdom.

Despite spending far more money than any peer nation, Americans live shorter lives and often face more barriers to care. Some of this disparity can be attributed to aspects of the U.S. health system, but socioeconomic and other factors also play a role.

How Do Health Insurance Systems and Coverage in the U.S. Compare to Other Countries?

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From the late nineteenth to mid-twentieth centuries, many nations created health insurance systems that aimed to make health care accessible and affordable to all residents. Some countries, like the United Kingdom, have health systems that are largely publicly funded and operated, while other countries, like Switzerland, have a compulsory private insurance system. Many countries’ health systems include a mix of private and public insurance. Regardless of the financing mechanism, the health systems in all countries that are similarly large and wealthy as the U.S. are largely compulsory, resulting in universal or near-universal health coverage.

During this same period, the United States took a different approach, relying on a largely voluntary private insurance system that resulted in a substantial share of the population being uninsured. Despite decades of calls for a national public health insurance program, it was not until 1965 that two major public insurance programs were created – Medicare for adults age 65 or older and for low-income people – and it was not until the Affordable Care Act passed in 2010 that the U.S. health system was overhauled to create near-universal eligibility for health insurance coverage for lawfully present residents. Even so, the U.S. health system is still largely voluntary and millions of people continue to go without insurance, often citing cost as a barrier.

Population by health insurance coverage status and coverage type, 2021

How Does Health Spending in the U.S. Compare to Other Countries?

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Wealthy countries, including the U.S., tend to spend more per person on health care and related expenses than lower-income countries. However, even among higher-income countries, the U.S. spends far more per person on health.

GDP per capita and health consumption spending per capita, 2021 (U.S. dollars, PPP adjusted)

Spending Growth

Over the past five decades, the health spending gap between the U.S. and peer nations has widened. In 1970, the U.S. spent about 7% of its GDP on health, similar to spending in several comparable countries (the average of comparably wealthy countries was about 5% of GDP in 1970). The U.S. was relatively on pace with other countries until the 1980s, when health spending in the U.S. grew at a significantly faster rate relative to its GDP. 

Total health spending per capita, U.S. and peer nations, 2000-2022

The COVID-19 pandemic led to both an increase in health spending and an economic downturn resulting in higher health spending as a share of the GDP in the U.S. and every comparable country between 2019 and 2020. In 2020, the U.S. spent 19.7% of its GDP on health consumption (up from 17.6% in 2019). In 2021, health spending as a share of GDP declined to 18.3% in the U.S.—but remains substantially higher than in peer countries.

Drivers of Health Spending

The largest category of health spending in both the U.S. and comparable countries is spending on inpatient and outpatient care, including payments to hospitals, clinics, and physicians for services and fees such as primary care or specialist visits, surgical care, provider-administered medications, and facility fees. Americans spent $7,500 per person on inpatient and outpatient care, compared to $3,851 in peer countries, on average. The U.S.’s higher spending on providers is driven more by higher prices than higher utilization of care. Patients in the U.S. have shorter average hospital stays and fewer physician visits per capita, while many hospital procedures have been shown to have higher prices in the U.S.­ Higher spending on inpatient and outpatient care drives most of the difference in health spending between the U.S. and its peers. In fact, the U.S. spends more on inpatient and outpatient care than most peer nations spend on their entire health systems (including long-term care, prescription drugs, administration, prevention, and other services).

Health spending per capita, U.S. dollars, 2021 

Prescription drugs are another factor partially explaining the U.S.’s higher health spending. Many prescription drugs cost more in the U.S. than the same drugs do in other comparable nations. In 2021, the U.S. spent $1,635 per capita on prescription drugs and other medical goods (including over-the-counter and clinically delivered pharmaceuticals as­ well as durable and non-durable medical equipment). However, because prescription drugs represent a relatively small share of total health spending, even if per capita prescription drug spending in the U.S. was lowered to be closer to that of comparable countries, that would make only a small dent in the overall difference in health spending.

Spending on health administration is similarly much higher in the U.S. than in comparable countries: $925 per capita. Administrative costs include spending on running governmental health programs and overhead from insurers, but exclude administrative expenditures from health care providers. This includes administrative spending for private health insurance, governmental health programs (such as Medicaid and Medicare) as well as other third-party payers and programs.

The U.S. also spends more on preventive care than peer nations. Activities captured in this spending category vary amongst countries, but in the U.S., it generally consists of public health activities, including preventive health programs and education for immunizations, disease detection, emergency preparedness, and more. The growth in preventive care spending between 2019 and 2021 is notable, considering the 2020 emergence of the COVID-19 pandemic. In the U.S., preventive care spending more than doubled between 2019 and 2020, from $343 to $741 per capita, but subsequently declined to $589 in 2021.

How Do Health Outcomes in the U.S. Compare to Other Countries?

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Life Expectancy

Life expectancy is one of the most common measures of health outcomes. In 1980, the average American could expect to live 73.7 years—a similar life expectancy to residents of most wealthy countries. However, in subsequent years, life expectancy continued growing in most other nations at a pace far beyond that of the U.S.

In 1996, Japan became the first nation to report an average life expectancy of 80 years among its population. By 2012, all peer countries had also achieved this milestone. This same year, life expectancy in the U.S. was 78.5 years and began a decade-long plateau. By 2019, the life of the average U.S. resident would be almost four years shorter than the life of the average resident of these comparable wealthy nations (78.8 vs. 82.7 years).

This plateau and four-year gap was already highly concerning, but the health crisis brought on by the COVID-19 pandemic made the situation in the U.S. much worse. Life expectancy dropped, by nearly two years from 78.8 in 2019 to 77.0 in 2020, for the first time ever recorded. The pandemic was not unique to the United States, but this stunning life expectancy drop was – the average comparable nation saw a decline of less than half a year (82.7 to 82.3). In 2021, the situation became even more extreme. Life expectancy in comparable nations saw a small rebound to 82.5 years, but the U.S. saw another drastic decrease to 76.1 years. In 2022, life expectancy rebounded to 77.5 years, still 1.3 years below pre-pandemic levels and almost five years below the average among peer nations.

Total life expectancy at birth, U.S. and peer nations, 2000-2022

The life expectancy data presented here are period life expectancy estimates based on excess mortality observed in each year. Period life expectancy at birth represents the mortality experience of a hypothetical cohort if current conditions persist into the future and not the mortality experience of a birth cohort.

Years of Life Lost

The causes of this decrease in life expectancy are multifaceted. When people die before a certain age, the difference between their age at death and the specified age is recorded as life years lost. For example, when looking at years of life lost before age 75, a person who dies at age 60 would be considered to have lost 15 years of life. Examining the causes of these years of life lost can point to the specific factors driving life expectancy down.

The United States has the highest rate of years of life lost by a large margin per 100,000 population aged 75 years old in 2020. However, examining the cause of these years of life lost makes it possible to notice  where the U.S. underperforms compared to these other countries. For example, the U.S. has a significantly higher rate of years of life lost due to heart disease, transport accidents, and accidental poisoning (a category that includes drug overdose) than these other nations.

Years of life lost per 100,000 population age 75 years old, 2020

While cancer is a common cause of premature years of life lost in the United States, most other countries have a similar rate of years of life lost due to cancer in the same population. This indicates that cancer is not a main cause of the discrepancy between the U.S. and peer nations.

Overall, the United States’ higher rates of premature death and disease burden do not necessarily reflect entirely on the quality of care that patients receive in doctor’s offices or hospitals. Life expectancy, mortality rates, and disease burden can also be influenced by factors that are largely outside of the control of the health system, like socioeconomic conditions (e.g. income inequality, structural racism) and differences in health-related behaviors (e.g. diet, exercise, drug use). Children and teens in the U.S. are less likely to make it to adulthood than in peer countries, with the U.S. having higher rates of motor vehicle accidents, firearm deaths, and suicide deaths among children and teens.

How Does Quality of Care in the U.S. Compare to Other Countries?

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Another, more direct way to measure the performance of the health system is to examine the quality of care provided in a hospital or clinical setting. However, inconsistent and imperfect quality metrics make it difficult to compare quality of care in the U.S. and its peers.

In comparison to peer nations, across the limited measures available internationally, the U.S. performs better on some and worse on other indicators of quality of care. For example, the U.S. performs worse on certain measures of treatment outcomes (such as maternal mortality) and some patient safety measures (such as obstetric trauma with instrument and medication or treatment errors). The U.S. performs similarly to or better than peer nations in other measures of treatment outcomes (such as mortality rates within 30 days of acute hospital treatment) and patient safety (such as rates of post–operative sepsis).

Hospital Mortality Rates

Age-standardized 30-day mortality rate per 100 patients after admission to the hospital for acute myocardial infarction, ischemic stroke, and hemorrhagic stroke, ages 45 and older, 2020

Mortality within 30 days of being admitted to a hospital is not entirely preventable, but high quality of care can reduce the mortality rate for certain diagnoses. The 30-day mortality rates after hospital admissions for heart attacks (acute myocardial infarction) and hemorrhagic stroke (caused by bleeding) are similar in the U.S. and comparable countries average. The 30-day mortality rate for ischemic strokes (caused by blood clots) was 4.3 deaths per 100 patients in the U.S. in 2020, compared to an average of 6.2 deaths per 100 patients in similar countries. While the U.S. has lower mortality rates due to these conditions than the average across peer nations, it is important to note that several peer nations have lower rates than the U.S.

Maternal Health

Maternal mortality rate per 100,000 live births, 2020

While wealth and economic prosperity are highly correlated with lower maternal mortality rates, the U.S. is an outlier with the highest rate of pregnancy-related deaths (23.8 deaths per 100,000 live births in 2020) when compared to similar countries (3.6 deaths per 100,000 live births).

Within the U.S., there are significant racial disparities in maternal mortality rates. The maternal mortality rate for Black mothers is about three times the rate for White mothers — a disparity that persists across age and socioeconomic groups. Every race and ethnicity, socioeconomic, and age group in the United States sees higher maternal mortality rates than the average in comparable countries. Maternal mortality in the U.S. has risen in recent years, sparking concern from the medical community and policymakers. 

Crude rate per 100 vaginal deliveries for obstetric trauma during vaginal delivery, with and without an instrument, ages 15 and older, 2020

Obstetric trauma is more likely to occur in deliveries where instruments are utilized (i.e., forceps). The rate of obstetric trauma during deliveries with an instrument in the U.S. was 11.7 per 100 vaginal deliveries in 2020, higher than most comparable countries with available data. The rate of obstetric trauma during deliveries without an instrument in the U.S. was 1.7 per 100 vaginal deliveries in 2020, on the lower end among comparable countries with available data.

Hospital Admissions

Age-standardized hospital admission rate per 100,000 population, ages 15 and over, 2020

Hospital admissions for certain chronic diseases, such as cardiac conditions, chronic obstructive pulmonary diseases (COPD), asthma, and diabetes, can arise for a variety of reasons, but preventive services — or lack thereof — play a large role. Hospital admission rates in the U.S. are higher than in comparable countries for congestive heart failure and complications due to diabetes, and some admissions for these chronic conditions could be minimized with adequate primary care. Admission rates in 2020 are likely impacted by the COVID-19 pandemic—patients were less likely to seek hospital treatment, and hospitals were at times overwhelmed and unable to admit patients who would have been admitted in a different year.  

Post-Operative Complications

Crude rate per 100,000 hospital discharges for post-operative pulmonary embolism and deep vein thrombosis after hip or knee surgery, ages 15 and older, 2018

Rates of post-operative complications are an important measure of hospital safety. Pulmonary embolisms and deep vein thrombosis are common complications after major surgeries, such as hip or knee replacement. The prevalence of post-operative clots for these procedures is higher in the U.S. than in the U.K., Sweden, Belgium, and the Netherlands, but lower than in Australia.

Crude rate per 100,000 hospital discharges for post-operative sepsis after abdominal surgery, ages 15 and older, 2020

Sepsis is a serious complication for patients with infections, and effects can range from organ failure and shock to death in severe cases. Rates of post-operative infections and sepsis are an important marker of care quality for patients undergoing surgery, because this is a major source of morbidity and mortality that can sometimes be prevented. Prevention is multifactorial and can involve proper operative techniques and training, hygiene and safety protocols, and antibiotic utilization, amongst other things. The rate of post-operative sepsis following abdominal surgery is just under 2% in the U.S., lower than in most peer countries that report data.

How Does Access to Care in the U.S. Compare to Other Countries?

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Out-of-Pocket Costs

Universal coverage means all residents have health insurance, but it does not mean health care is free. Even in countries with universal coverage, residents often have at least nominal out-of-pocket costs. In fact, people in Switzerland pay more out-of-pocket on health care ($1,688), on average, than Americans do ($1,305) per capita.

Total health spending and household out-of-pocket spending, per capita, U.S. dollars, 2021

Costs are a common barrier to accessing health care in the U.S. More than 1 in 4 Americans report skipping consultations, tests, treatment, or follow-up, and 23% report skipping medication. Only 9.2% of the United States population is uninsured, so these numbers include individuals who have health insurance, but still find medical care unaffordable. While cost-related access barriers are particularly prevalent in the U.S., residents of other countries with universal coverage also report skipping care due to costs.

Patients who report skipping care due to costs, crude rate per 100 patients age 16+, 2020

Appointment Availability

Among people who needed same or next-day medical care, about half (51%) of Americans were able to make a timely appointment, which is somewhat below the average of peer nations (57%).

Percent of adults who made a same-day or next day appointment when needed care, 2016 

Physicians

Cost is not the only reason why a person may miss or delay needed medical care. Physician availability can also impact access to care. The U.S. has just 2.7 practicing physicians per 1,000 residents, compared to an average of 3.9 among peer nations.

Also of concern in the U.S. is the ratio of primary to specialty care providers. Most other nations have somewhere between one-quarter and one-half of physicians employed in primary care. Primary care is an integral part of the health system in many nations—a patient sees a primary care physician for most illnesses or injuries and only goes to a specialist or hospital if their primary care doctor decides it is necessary. In the United States, however, only 12% of doctors are primary care physicians (PCPs). Specialist care is more expensive than primary care, driving costs up for patients and health systems.

The U.S. faces this physician shortage and high rates of specialization partly due to how medical education is structured. The U.S. has kept a tight lid on the number of medical schools, as well as the number of training spots available to new doctors. Furthermore, the higher education system in the U.S. places the burden of financing an education on the student, and university tuition is more expensive than in many peer countries. As a result, students borrow money, and most graduate from medical school in significant debt. Because primary care generally comes with a lower salary, some new physicians pursue a higher-paid specialty, even if they would rather work in primary care.

Additionally, the U.S. has only 0.14 psychiatrists per 1,000 residents, the second lowest of all peer nations. Although the U.S. has a high number of specialist providers, only 6% are psychiatrists, compared to an average of 10% of specialists in other countries examined. Despite clear and increasing demand for mental health treatment, psychiatry remains one of the lowest-paid physician specialties in the United States.

Physicians per 1,000 residents, by specialty, 2021

Future Outlook

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The future outlook of health systems will be shaped by various factors, including political and policy changes, technological advancements, economic and demographic shifts, social factors, and unforeseen events – as the COVID-19 pandemic demonstrated. Here are some issues to watch:

Health Outcomes: The United States was already performing worse than its peers across a wide range of health outcomes, but the COVID pandemic widened the gap further and it is not yet clear whether life expectancy and other measures of long-term health outcomes will recover as quickly in the U.S. as in peer nations. The pandemic has underscored the importance of robust health care system capacity, though countries will likely continue to differ in their responses to COVID and preparations for future pandemics. In addition to the pandemic recovery, both the U.S. and peer countries face the challenge of aging populations, leading to increased demand for health care services and long-term care.

Access to Care: Unlike the U.S., similarly large and wealthy nations have long had universal or near-universal health coverage and more robust access to health care. Although the U.S. has recently reached an all-time high rate of insurance coverage, it still lags behind its peers and the ongoing disenrollments from Medicaid may cause the uninsured rate to rise. Additionally, even people who are insured in the U.S. often face such high out-of-pocket costs for medical care that they go without needed care or incur medical debt. Future policymaking in the U.S. may continue to focus on improving insurance coverage rates and addressing cost-related and other barriers to care.

Quality of Care: The adoption of new technologies will shape care delivery in both the United States and its peers. Electronic health records, telemedicine, artificial intelligence, and other digital health tools are becoming more prevalent globally. However, many digital health tools are new, untested, and have unknown implications for quality of care.

Health Spending: Most peer nations place a strong emphasis on cost containment and efficiency and achieve this through regulation of and negotiation with health providers to lower costs. In the U.S., by contrast, the federal and state governments are much more hands-off. However, with the recent passage of the Inflation Reduction Act, the U.S. will start to negotiate certain drug prices. Medicare recently announced the first 10 drugs selected for negotiation under its new drug price negotiation program, which is projected to lower Medicare spending on those drugs. There will likely be ongoing debate over extending drug price negotiation by the federal government outside of Medicare, as well as taking other steps to restrain the price of health care generally.

Resources

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Health Costs:

Health Outcomes:

Access and Quality of Care:

Citation

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Wager, E. & Cox, C., International Comparison of Health Systems. In Altman, Drew (Editor), Health Policy 101, (KFF, October 2024) https://www.kff.org/health-policy-101-international-comparison-of-health-systems/ (date accessed). 

The U.S. Government and Global Health

Table of Contents

Introduction

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U.S. government (U.S.) global health efforts aim to help improve the health of people in low- and middle-income countries while also contributing to broader U.S. global development goals, foreign policy priorities, and national security concerns, including helping safeguard the health of Americans. While there is currently no standard, agreed-upon definition of global health, the National Academy of Medicine (formerly Institute of Medicine) defines global health as having “the goal of improving health for all people in all nations by promoting wellness and eliminating avoidable diseases, disabilities, and deaths.” A key dimension of global health is an emphasis on addressing inequities in health status between rich and poor countries and also for those who are most marginalized within countries, as well as a recognition that the health of people around the world is highly interconnected, with domestic and foreign health inextricably linked.

What Is the U.S. Role in Global Health?

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The U.S. role in global health is multifaceted and includes a broad range of activities. Its primary roles are as a supporter of bilateral (i.e., country-to-country) efforts, directly funding implementation of global health efforts in partner countries, and as a donor to multilateral health institutions (i.e., international organizations that pool support from multiple countries for one or more areas of global health). The U.S. also engages in global health diplomacy through its relationships with other governments, multilateral institutions, non-governmental organizations, and the private sector. Specifically, the U.S. government:

  • acts as a donor by providing financial and other health-related development assistance (e.g. commodities, like contraceptives or bed nets for protection from disease-carrying mosquitoes) to low- and middle-income countries;
  • operates programs and delivers health services;
  • provides technical assistance and other capacity-building support;
  • participates in major international health organizations and coordinates health efforts with other stakeholders through global health diplomacy;
  • conducts research;
  • supports international responses to disasters and other emergencies; and
  • partners with governments, non-governmental groups, and the private sector (Figure 1).

U.S. global health activities target a variety of issues and use different intervention approaches such as:

  • Health services and systems: improving basic and essential health services, systems, and infrastructure;
  • Disease detection and response: supporting surveillance, prevention, and treatment of diseases, including both infectious (e.g. HIV, TB, malaria) and non-communicable diseases (e.g. cardiovascular disease, cancer);
  • Population and maternal/child health: promoting maternal health; reproductive health and family planning; child nutrition, immunization, and other child survival interventions;
  • Nutrition, water, and environmental health: providing non-emergency food aid and supporting dietary supplementation and food security; clean/safe water and sanitation; mitigation of environmental hazards; and
  • Research and development: investigating and developing new technologies, interventions, and strategies, including vaccines, medicines, and diagnostics.

What Are the Major Global Health Program Areas the U.S. Supports?

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The U.S. government (U.S.) supports global health through a wide array of bilateral and multilateral global health programs in countries around the world. Its major program areas include:

HIV/PEPFAR

While the U.S. first provided funding to address the emerging global HIV epidemic in 1986, U.S. funding and attention for these efforts has grown significantly in the last two decades, particularly following President George W. Bush’s 2003 announcement of the President’s Emergency Plan for AIDS Relief (PEPFAR), the coordinated U.S. government response to global HIV. Now the largest commitment by any nation devoted to a single disease, the launch of PEPFAR led to substantially increased U.S. support for HIV prevention, treatment, and care efforts, as well as U.S. contributions to multilateral entities, including the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), the Joint United Nations Programme on HIV/AIDS (UNAIDS), and the International AIDS Vaccine Initiative (IAVI). Today, PEPFAR’s efforts aim to ensure that populations with the highest HIV burden – particularly children, young women and adolescents, young men, and key populations— know their HIV status, receive prevention and treatment services, and become virally suppressed.

Tuberculosis (TB)

Since the 1998 launch of USAID’s global TB control program, the U.S. response to global TB has expanded, particularly after 2003 when PEPFAR highlighted the U.S. government’s commitment to addressing TB. Today, these efforts focus on diagnosis, treatment, and control of TB (including multi-drug-resistant and extensively drug-resistant TB, or MDR/XDR TB) as well as on research. The U.S. is also a donor to the Global Drug Facility of the Stop TB Partnership.

Malaria/PMI

Engaged in malaria work since the 1950s, today the U.S. supports expanded malaria efforts in low- and middle-income countries through the President’s Malaria Initiative (PMI), launched in 2005, as well as through research and other activities. PMI programs center on expanding coverage of six key high-impact interventions to control or eliminate malaria, which include: diagnosis of malaria and treatment with artemisinin-based combination therapies (ACTs), entomological monitoring, intermittent preventive treatment in pregnancy (IPTp), indoor residual spraying (IRS) with insecticides, insecticide-treated mosquito nets (ITNs), and seasonal malaria chemoprevention (SMC). The U.S. is also engaged in the RBM Partnership to End Malaria.

Maternal and Child Health (MCH)

Involved in efforts to improve MCH since the 1960s, today U.S. global MCH activities aim to bring to scale a range of high-impact interventions that mitigate maternal, newborn, and under-five deaths; prevent and address the indirect causes of such deaths (such as HIV, TB, and malaria); strengthen integration of maternal health services with family planning; improve equity of access to and use of services by vulnerable populations; and strengthen health systems. The U.S. is also a donor to global organizations and initiatives addressing MCH, such as Gavi, the Vaccine Alliance, the United Nations Children’s Fund (UNICEF), and the Global Polio Eradication Initiative (GPEI).

Nutrition

For more than 40 years, the U.S. has been involved in nutrition efforts in low- and middle-income countries that aim to prevent undernutrition through support for effective interventions, such as nutrition education, nutrition during pregnancy, exclusive breastfeeding, and micronutrient supplementation. U.S. global nutrition efforts are coordinated with the U.S. Feed the Future Initiative (FtF, launched in 2009), which aims to address global hunger and food security.

Family Planning and Reproductive Health (FP/RH)

Engaged since the 1960s in international research on family planning and population issues as well as other FP/RH efforts (including the purchase and distribution of contraceptives in developing countries),  U.S. global FP/RH activities are currently designed to decrease the risk of unintended pregnancies and maternal and child mortality through effective interventions, including contraception, counseling, and post-abortion care. The U.S. also provides funding to global organizations addressing FP/RH, such as the United Nations Population Fund (UNFPA).

Neglected Tropical Diseases (NTDs)

Having historically worked on addressing NTDs through research and surveillance, attention to and funding for U.S. global NTD efforts increased markedly in 2006 with the launch of the USAID NTD Program and the subsequent announcement of expanded efforts across the U.S. government in 2008. Today these efforts focus on seven NTDs (ascariasis or roundworm, hookworm, trichuriasis or whipworm, lymphatic filariasis or elephantiasis, onchocerciasis or river blindness, schistosomiasis or snail fever, and trachoma) that are responsible for the overwhelming majority of the NTD burden but can be controlled and even eliminated with low-cost and effective interventions, such as an integrated control approach targeting multiple NTDs simultaneously through mass drug administration (MDA).

Global Health Security (GHS)

While the U.S. has supported global health security work for more than two decades, its involvement has expanded over time, with attention to these efforts growing significantly due to the COVID-19 pandemic. U.S. global GHS efforts aim to reduce the threat of emerging and re-emerging diseases by supporting preparedness, detection, and response capabilities worldwide. The U.S. has also played a key role in the development and 2014 launch of the “Global Health Security Agenda (GHSA).” Through this international partnership that now involves more than 70 countries and international organizations, the U.S. works to help countries make measurable improvements in their GHS capabilities. The U.S. is also a donor to the new Pandemic Fund, which seeks to provide sustained financing to help countries build their capacity to prevent, prepare for, and respond to epidemics and pandemics.

How Much Funding Does the U.S. Provide for Global Health?

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In FY 2024, U.S. funding for global health totaled $12.3 billion. As Figure 2 shows, the U.S. investment in global health has grown significantly since the early 2000s, in large part due to funding for initiatives such as PEPFAR and PMI but with spikes in some years due to emergency or supplemental funding for disease outbreaks such as Ebola, Zika, and COVID-19. Funding reached its highest level to date in FY 2021, largely due to the U.S. global response to the COVID-19 pandemic.

Although a large majority of the American public overestimates the share of the federal budget that is spent on foreign aid (with nearly half believing that the share is greater than 20%), U.S. foreign aid actually accounts for 1% or less of the federal budget, with U.S. funding for global health—which is part of the foreign affairs budget—accounting for an even smaller share.

U.S. Global Health Funding (in billions), FY 2006 - FY 2024

U.S. Global Health Funding by Program Area

Looking across funding for the major global health program areas since FY 2006, most U.S. global health funding over time has been directed to HIV programs, accounting for approximately 50% of U.S. global health funding in most years (Figure 3). The Global Fund accounted for the next largest share over the period, followed by MCH and malaria. More recently, the U.S. has emphasized global health security more, with funding for these efforts increasing considerably during the COVID-19 pandemic and afterward. Consistent with this trend, most funding was provided to HIV efforts ($5.4 billion or 44%), followed by the Global Fund ($1.7 billion or 13%) and maternal and child health and global health security (both $1.3 billion or 10%) in FY 2024 (Figure 4).

Distribution of U.S. Global Health Funding, by Program Area, FY 2006 - FY 2024
U.S. Global Health Funding (in millions), by Program Area , FY 2024

Bilateral vs. Multilateral Aid

Most U.S. global health funding is provided bilaterally – that is, funding provided by the U.S. directly to or on behalf of a recipient country or region. In FY 2024, about 80% of the U.S. global health budget was provided through bilateral programs. The remainder (about 20%) is provided multilaterally through U.S. contributions to international institutions and organizations (see [“What Multilateral Health Organizations Are Supported by the U.S.?”]).

Which U.S. Agencies Are Involved in Carrying Out Efforts in These Program Areas?

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The U.S. government’s engagement in global health is carried out and overseen by multiple executive branch departments and agencies and the legislative branch, including several congressional committees (Figure 5).

Executive Branch

In general, U.S. global health engagement has developed within two main structures of the Executive Branch of government: the foreign assistance structure, which is predominantly global development-oriented and has close links to foreign policy; and the public health structure, which has its roots in disease prevention, control, and surveillance efforts.

Most funding for and oversight of U.S. global health resides within the foreign assistance structure, including:

  • Department of State (State): Established in 1789, the Department of State is the Cabinet-level foreign affairs agency of the United States. It advances U.S. objectives and interests worldwide through its primary role in developing and implementing the President’s foreign policy. It also provides policy direction to USAID, the lead federal agency for development assistance. The Department of State’s new Bureau for Global Health Security and Diplomacy (GHSD) coordinates the Department’s work on global health security, including HIV, and houses PEPFAR.
  • U.S. Agency for International Development (USAID): Established in 1961, USAID is an independent U.S. federal government agency that receives overall foreign policy guidance from the Secretary of State. Its role is to support long-term and broad-based economic growth in countries and advance U.S. foreign policy objectives by supporting activities through each of its programmatic functional bureaus (e.g. Bureau for Global Health) and regional bureaus. Most USAID global health programs are coordinated through the Bureau for Global Health, including HIV and other infectious diseases, MCH, nutrition, FP/RH, NTDs, and global health security.
  • Millennium Challenge Corporation (MCC): Established in 2004, MCC administers the Millennium Challenge Account (MCA), a U.S. government initiative providing development assistance to eligible countries to promote economic growth and reduce poverty in low- and middle-income countries. Although MCC supports several health-related programs, health is not the main focus or purpose of its work; its design is intended to link MCC contributions for development assistance (to reduce poverty through support for economic growth) to greater responsibility by low- and middle-income countries for successfully attaining certain governance and development benchmarks.

Agencies within the public health structure operate global health programs directly or in conjunction with foreign assistance agencies. They are represented most prominently by several agencies within the Department of Health and Human Services (HHS), including:

  • Office of Global Affairs (OGA): OGA’s primary function is global health diplomacy – particularly coordinating and maintaining engagement across HHS and the U.S. government with foreign governments and ministries of health, multilateral organizations, civil society groups, and the private sector – exchanging best practices and sharing technical knowledge to advance U.S. global health priorities and research.
  • Centers for Disease Control and Prevention (CDC): With a long history of working on international health issues, CDC focuses on disease control and prevention and health promotion through operations, development assistance, basic and field research, technical assistance, training/exchanges, and capacity building.
  • National Institutes of Health (NIH): One of the world’s leading research entities on global health, NIH conducts biomedical and behavioral science research on diseases and disorders to enhance diagnosis, prevention, and treatment and provides technical assistance and training. All 27 of the agency’s institutes and centers engage in global health activities.
  • Food & Drug Administration (FDA): The FDA screens pharmaceutical and biological products for safety and efficacy and helps oversee the safety of the U.S. food supply.
  • Health Resources and Services Administration (HRSA): HRSA builds human and organizational capacity and promotes health systems strengthening to deliver care in PEPFAR countries.

In addition to the foreign assistance and public health service agencies, other departments and agencies involved in global health include the Department of Defense (DoD), the Department of Agriculture (USDA), the Peace Corps, the Environmental Protection Agency (EPA), the Department of Homeland Security (DHS), the Department of Labor (DoL), the Department of Commerce (Commerce), the Office of the U.S. Trade Representative (USTR), and the National Security Council (NSC). The NSC, which sits within the White House, plays a significant role across the U.S. government, as it is responsible for coordinating and reviewing the U.S. strategy and activities related to global health security, including its international response. In addition, on matters of global health security, it works closely with the White House Office of Pandemic Preparedness and Response (OPPR), which is responsible for domestic policy coordination related to health security.

The daily operations of U.S. global health activities are administered chiefly through the Department of State’s Bureau of Global Health Security and Diplomacy (GHSD), which oversees U.S. global HIV efforts that fall under the PEPFAR program and also provides diplomatic support (through U.S. ambassadors and others) in implementing U.S. global health efforts; USAID; and HHS operating divisions, particularly the CDC. This is also reflected in the way U.S. global health funding is channeled, with most funding provided (appropriated by Congress) to the Department of State (52%), followed by USAID (33%), HHS via NIH (7%) and CDC (5%), and the Department of Defense (DoD) (2%); departments and agencies may then transfer some or all of this funding to other departments and agencies carrying out global health activities.

Legislative Branch

The U.S. Congress introduces, considers, and passes global health-related legislation; oversees global health efforts, specifying how funds for these programs are to be (and not to be) spent; authorizes and appropriates funding; and confirms presidential appointees to key U.S. global health positions. Major committees of the House of Representatives (House) and Senate with jurisdiction over global health efforts include: the House Committee on Foreign Affairs, Senate Committee on Foreign Relations, House Committee on Energy and Commerce, Senate Committee on Health, Education, Labor, and Pensions, and the Senate and House Appropriations Committees.

The U.S. global health response has been defined by numerous governing statutes, authorities, and policy decisions. For instance, the legislation that created PEPFAR in 2003 and its subsequent reauthorizations in 2008, 2013, and 2018 are key statutes of U.S. global health policy, as they govern its bilateral HIV response, bilateral assistance for TB and malaria, and participation in the Global Fund. Other statutory requirements that shape the implementation and scope of U.S. global health activities are those governing U.S. global FP/RH efforts, such as those directing how U.S. funds may not be spent. For instance, the Helms Amendment (1973) prohibits the use of foreign assistance to pay for the performance of abortion as a method of family planning or to motivate or coerce any person to practice abortion. The Kemp-Kasten Amendment (1985) prohibits funding any organization or program, as determined by the President, that supports or participates in the management of a program of coercive abortion or involuntary sterilization (it has been invoked at times to restrict funding to UNFPA).

Where Do U.S. Bilateral Global Health Programs Operate?

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The U.S. provides bilateral support for U.S. global health programs in more than 70 countries, with additional countries reached through U.S. regional global health programs and U.S. contributions to multilateral organizations. Multiple factors determine where the U.S. channels its global health support. While more U.S. support is generally directed to countries facing a higher burden of disease, it is also influenced by factors such as the presence of willing and able partner governments, a history of positive relations and goodwill with host countries, strategic and national security priorities, and funding and personnel availability. The majority of countries receiving U.S. bilateral support for global health (“partner countries”) are located in sub-Saharan Africa (35 countries), followed by the Western Hemisphere (16 countries), East Asia and Oceania (11 countries), South and Central Asia (9 countries), Europe and Eurasia (4 countries), and Middle East and North Africa (4 countries) (Figure 6). Most U.S. bilateral support for global health programs is provided in sub-Saharan Africa (84%) (Figure 7). Furthermore, the top 10 country recipients of U.S. global health funding, representing about 60% of U.S. bilateral support for global health, are all in this region (Figure 8).

Countries Where the U.S. Operates Global Health Programs, by Region, FY 2023
U.S. Global Health Funding, by Region, FY 2023
Top 10 Recipient Countries of U.S. Global Health Funding, FY 2023

The U.S. typically operates more than one health program (HIV, TB, malaria, etc.) in each partner country. While in most countries, the U.S. operates programs in four or fewer global health areas, this number is generally higher in countries in sub-Saharan Africa (five or more).

What Multilateral Health Organizations Are Supported by the U.S.?

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In addition to its bilateral programs, the U.S. has a long history of engagement with multilateral health organizations and international institutions, beginning with its role in the development of the first such organizations, including the Pan-American Health Organization (PAHO) in the early 1900s and the World Health Organization (WHO) a few decades later. This involvement continues with, for example, the Global Fund (which the U.S. helped to launch in 2001), Gavi (launched in 2000), the GHSA (which the U.S. played a key role in developing and launching in 2014), and the Pandemic Fund (launched in 2022). U.S. support for multilateral global health efforts takes various forms, including:

  • Funding. The U.S. is often the largest or one of the largest donors to multilateral health efforts, funding core (generally used to support essential functions and operations) and voluntary (used for specific projects or initiatives the U.S. seeks to support) contributions. About a fifth (19%) of U.S. global health funding supports U.S. contributions to multilateral health organizations (Figure 9).
  • Governance. The U.S. is active in the governance structures that oversee multilateral global health organizations and initiatives, including holding permanent or rotating seats on many of their boards.
  • Technical assistance. The U.S. offers technical assistance in support of grants to partner countries, providing additional staff capacity to international organizations (by detailing U.S. government employees to these organizations for periods of time).
  • Standard setting. The U.S. also engages in standard-setting, weighing in on global plans, treaties, and agreements to respond to a range of health issues as they are developed and considered for approval by the larger body.
U.S. Multilateral Global Health Funding (in millions), FY 2024

Today the U.S. engages with a number of multilateral global health organizations, including health-focused specialty agencies of the United Nations (U.N.) and international financing mechanisms for global health. Key among these are eight to which Congress specifically directs funding (though the U.S. also reaches other multilateral health institutions without direct Congressional appropriations but rather through general support), of which the U.S. is the top contributor to five (the Global Fund, PAHO, UNAIDS, UNICEF, and WHO):

U.N. Agencies

  • World Health Organization (WHO): WHO, created in 1948, is the directing and coordinating authority for health within the U.N. system. WHO provides international leadership on global health matters, shaping the health research agenda, setting norms and standards, providing technical support to countries, and monitoring and assessing health trends. The U.S. has been involved in WHO since its creation, providing financial and technical support as well as participating in its governance structure.
  • Pan American Health Organization (PAHO): PAHO is the oldest international health agency, founded originally as the International Sanitary Bureau in 1902. The U.S. joined PAHO as a member state in 1925. PAHO, the specialized international health agency for the Americas, “works with countries throughout the region to improve and protect people’s health” and serves as the WHO Regional Office for the Americas and as the health organization of the inter-American System.
  • Joint United Nations Programme on HIV/AIDS (UNAIDS): UNAIDS, created in 1996 as the successor organization to the WHO Global Programme on AIDS (GPA), is the leading global organization for addressing HIV/AIDS. Coordinating efforts across the U.N. system, it is made up of 11 U.N. co-sponsors and guided by a Programme Coordinating Board (PCB), which is a subset of its co-sponsors and government representatives. The U.S. currently serves on the PCB.
  • United Nations Children’s Fund (UNICEF): UNICEF, created in 1946, aims to improve the lives of children, particularly the most disadvantaged children and adolescents, and is one of the largest purchasers of vaccines worldwide. The U.S. was a founding member that same year.
  • United Nations Population Fund (UNFPA): UNFPA, created in 1969, is the largest purchaser and distributor of contraceptives worldwide. While the U.S. helped to found UNFPA and was a leading supporter for many years, its support has fluctuated significantly over the years, due to ongoing U.S. political debates about abortion.

Non-U.N. Financing Mechanisms

  • Gavi, the Vaccine Alliance (Gavi): Gavi, created in 2000, is a public-private partnership that aims to increase access to immunization in poor countries. The U.S. has been involved in Gavi since its creation through contributions, participation in Gavi’s governance, and technical assistance. The U.S. is the second largest donor to Gavi’s core programs and the top donor to Gavi’s COVAX Advance Market Commitment (COVAX AMC), a financial mechanism within COVAX that supports low- and middle-income countries through procurement and distribution of COVID-19 vaccines.
  • Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund): The Global Fund, created in 2001, is an independent multilateral financing entity that supports HIV, TB, and malaria programs in low- and middle-income countries. The U.S. was involved in creating the Global Fund and maintains a permanent seat on its Board. U.S. contributions and those of other donors are pooled and then provided by the Global Fund to country-driven projects based on technical merit and need.
  • TB Global Drug Facility: The Global Drug Facility, created in 2001, is a financing mechanism of the Stop TB Partnership; it provides grants to countries for TB drugs.

U.S. support for multilateral institutions overall has fluctuated over time, reflecting, in part, changing U.S. leadership views on the relative value of bilateralism versus multilateralism. As a result, U.S. engagement in and contributions to specific multilateral health organizations and institutions may change over time. For example, the U.S. under the Trump administration did not participate in the partnership to create  COVAX (an international partnership led by the Coalition for Epidemic Preparedness Innovations [CEPI], Gavi, and WHO) to facilitate greater global access to the COVID-19 vaccine, although Congress did provide $4 billion in emergency funding to Gavi in support of COVID-19 vaccine access. Under the Biden administration, the U.S. joined the COVAX partnership.

Multilateral initiatives complement U.S. bilateral global health efforts, helping make progress toward U.S. goals in various program areas. In some cases, U.S. multilateral global health support allows the U.S. to reach a larger number of countries; it also may help to leverage additional funding and provide opportunities for improved coordination and technical consultations. Additionally, U.S. policies related to funding can greatly influence other financial support for multilaterals. For instance, since U.S. law requires that the U.S. contribution to the Global Fund cannot exceed 33% of total contributions from all donors, the U.S. contribution leverages other donor contributions; in effect, this requirement encourages increased support from other donors and prevents the U.S. from becoming the predominant donor to the Global Fund.

How Does the U.S. Compare to Other Donors of International Health Assistance?

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The U.S. is the largest donor to global health, providing almost a third (32%) of all international health assistance among major donors and institutions (Figure 10). The Global Fund – whose top contributor is the U.S. – is the second largest donor to global health.

U.S. is the Largest Donor of International Health Assistance in 2022

In addition, the U.S. has historically devoted more of its foreign assistance to health than any other donor government, contributing nearly a quarter of its foreign assistance to global health in 2022 (Figure 11). The U.S. is also the largest government donor to several specific global health areas including HIV and family planning.

Top 10 Donor Governments to Health, by Health Assistance as a Percentage of Total Assistance in 2022

Future Outlook

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The U.S. has been engaged in international health activities for over a century, and today is the largest funder and implementer of global health programs worldwide. In many respects, the U.S. approach to global health will influence and impact how other countries and global entities engage in global health. Among the key issues to watch are:

  • The future direction of U.S. leadership in and commitment to global health as well as its ever-evolving strategy toward global health, particularly as U.S. domestic politics increasingly impact decisions about the future of major U.S. global health initiatives (such as the short-term reauthorization of PEPFAR, which was caught up in the larger national debate related to abortion).
  • Continued discussion of what U.S. global health funding levels may be going forward, particularly in a challenging U.S. political and budget environment, and whether, given likely funding constraints, U.S. global health efforts will be able to preserve or expand their reach and impact.
  • Ongoing efforts to address short- and long-term impacts of COVID-19 on U.S. global health programs in partner countries while better preparing them to meet the next unexpected health challenge through heightened emphasis on building global health security capabilities.
  • The appropriate balance between U.S. support for bilateral and multilateral efforts and continuing to coordinate with other donors and multilateral and international organizations, particularly in areas of renewed global concern such as updating the International Health Regulations (IHR), drafting and ratifying a Pandemic Treaty, and contributing to the Pandemic Fund.
  • Ways the U.S. aims to accelerate progress across U.S. global health programs sustainably in the context of weak health systems, varied barriers to access, and challenges such as equity and legal and policy hurdles for vulnerable populations and essential health services.
  • Attempts to further integrate and better coordinate across disease and program areas of U.S. global health efforts across the U.S. government.

Resources

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Citation

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Oum, S., Moss, K., & Kates, J., The U.S. Government and Global Health. In Altman, Drew (Editor), Health Policy 101, (KFF, July 2024) https://www.kff.org/health-policy-101-the-u-s-government-and-global-health/ (date accessed).

The Politics of Health Care and the 2024 Election

KFF Authors:

Table of Contents

Introduction

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Health policy and politics are inextricably linked. Policy is about what the government can do to shift the financing, delivery, and quality of health care, so who controls the government has the power to shape those policies. 

Elections, therefore, always have consequences for the direction of health policy – who is the president and in control of the executive branch, which party has the majority in the House and the Senate with the ability to steer legislation, and who has control in state houses. When political power in Washington is divided, legislating on health care often comes to a standstill, though the president still has significant discretion over health policy through administrative actions. And, stalemates at the federal level often spur greater action by states. 

Health care issues often, but not always, play a dominant role in political campaigns. Health care is a personal issue, so it often resonates with voters. The affordability of health care, in particular, is typically a top concern for voters, along with other pocketbook issues, And, at 17% of the economy, health care has many industry stakeholders who seek influence through lobbying and campaign contributions. At the same time, individual policy issues are rarely decisive in elections. 

Health Reform in Elections

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Health “reform” – a somewhat squishy term generally understood to mean proposals that significantly transform the financing, coverage, and delivery of health care – has a long history of playing a major role in elections. 

Harry Truman campaigned on universal health insurance in 1948, but his plan went nowhere in the face of opposition from the American Medical Association and other groups. While falling short of universal coverage, the creation of Medicare and Medicaid in 1965 under Lyndon Johnson dramatically reduced the number of uninsured people. President Johnson signed the Medicare and Medicaid legislation at the Truman Library in Missouri, with Truman himself looking on. 

Later, Bill Clinton campaigned on health reform in 1992, and proposed the sweeping Health Security Act in the first year of his presidency. That plan went down to defeat in Congress amidst opposition from nearly all segments of the health care industry, and the controversy over it has been cited by many as a factor in Democrats losing control of both the House and the Senate in the 1994 midterm elections. 

For many years after the defeat of the Clinton health plan, Democrats were hesitant to push major health reforms. Then, in the 2008 campaign, Barack Obama campaigned once again on health reform, and proposed a plan that eventually became the Affordable Care Act (ACA). The ACA ultimately passed Congress in 2010 with only Democratic votes, after many twists and turns in the legislative process. The major provisions of the ACA were not slated to take effect until 2014, and opposition quickly galvanized against the requirement to have insurance or pay a tax penalty (the “individual mandate”) and in response to criticism that the legislation contained so-called “death panels” (which it did not). Republicans took control of the House and gained a substantial number of seats in the Senate during the 2010 midterm elections, fueled partly by opposition to the ACA. 

The ACA took full effect in 2014, with millions gaining coverage, but more people viewed the law unfavorably than favorably, and repeal became a rallying cry for Republicans in the 2016 campaign. Following the election of Donald Trump, there was a high profile effort to repeal the law, which was ultimately defeated following a public backlash. The ACA repeal debate was a good example of the trade-offs inherent in all health policies. Republicans sought to reduce federal spending and regulation, but the result would have been fewer people covered and weakened protections for people with pre-existing conditions. KFF polling showed that the ACA repeal effort led to increased public support for the law, which persists today. 

KFF Health Tracking Poll: The Public's Views on the ACA

In the 2020 campaign, health reform was a major issue in the Democratic primaries, with a number of prominent candidates supporting a Medicare for All plan. Joe Biden’s platform was centered instead on building upon the ACA. 

Health Care and the 2024 Election

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The 2024 election presents the unusual occurrence of two candidates – current vice president Kamala Harris and former president Donald Trump – who have already served in the White House and have detailed records for comparison, as explained in this JAMA column.  With President Joe Biden dropping out of the campaign, Harris inherits the record of the current administration, but has also begun to lay out an agenda of her own.

The Affordable Care Act (Obamacare)

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While Trump failed as president to repeal the ACA, his administration did make significant changes to it, including repealing the individual mandate penalty, reducing federal funding for consumer assistance (navigators) by 84% and outreach by 90%, and expanding short-term insurance plans that can exclude coverage of preexisting conditions. 

In a strange policy twist, the Trump administration ended payments to ACA insurers to compensate them for a requirement to provide reduced cost sharing for low-income patients, with Trump saying it would cause Obamacare to be “dead” and “gone.” But, insurers responded by increasing premiums, which in turn increased federal premium subsidies and federal spending, likely strengthening the ACA. 

In the 2024 campaign, Trump has vowed several times to try again to repeal and replace the ACA, though not necessarily using those words, saying instead he would create a plan with “much better health care.” 

Although the Trump administration never issued a detailed plan to replace the ACA, Trump’s budget proposals as president included plans to convert the ACA into a block grant to states, cap federal funding for Medicaid, and allow states to relax the ACA’s rules protecting people with preexisting conditions. Those plans, if enacted, would have reduced federal funding for health care by about $1 trillion over a decade. 

In contrast, the Biden-Harris administration has reinvigorated the ACA by restoring funding for consumer assistance and outreach and by increasing premium subsidies to make coverage more affordable, resulting in record enrollment in ACA Marketplace plans and historically low uninsured rates. The increased premium subsidies are currently slated to expire at the end of 2025, so the next president will be instrumental in determining whether they get extended. Harris has vowed to extend the subsidies, while Trump has been silent on the issue.

Abortion and Reproductive Health

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The health care issue most likely to figure prominently in the general election is abortion rights, with sharp contrasts between the presidential candidates and the potential to affect voter turnout. In all the states where voters have been asked to weigh in directly on abortion so far (California, Kansas, Kentucky, Michigan, Montana, Ohio, and Vermont), abortion rights have been upheld

Trump paved the way for the US Supreme Court to overturn Roe v Wade by appointing judges and justices opposed to abortion rights. Trump recently said, “for 54 years they were trying to get Roe v Wade terminated, and I did it and I’m proud to have done it.” During the current campaign, Trump has said that abortion policy should now be left to the states. 

As president, Trump had also cut off family planning funding to Planned Parenthood and other clinics that provide or refer for abortion services, but this policy was reversed by the Biden-Harris administration. 

Harris supports codifying into federal the abortion access protections in Roe v Wade.

Addressing the High Price of Prescription Drugs and Health Care Services

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Trump has often spotlighted the high price of prescription drugs, criticizing both the pharmaceutical industry and pharmacy benefit managers. Although he kept the issue of drug prices on the political agenda as president, in the end, his administration accomplished little to contain them. 

The Trump administration created a demonstration program, capping monthly co-pays for insulin for some Medicare beneficiaries at $35. Late in his presidency, his administration issued a rule to tie Medicare reimbursement of certain physician-administered drugs to the prices paid in other countries, but it was blocked by the courts and never implemented. The Trump administration also issued regulations paving the way for states to import lower-priced drugs from Canada. The Biden-Harris administration has followed through on that idea and recently approved Florida’s plan to buy drugs from Canada, though barriers still remain to making it work in practice. 

With Harris casting the tie-breaking vote in the Senate, President Biden signed the Inflation Reduction Act, far-reaching legislation that requires the federal government to negotiate the prices of certain drugs in Medicare, which was previously banned. The law also guarantees a $35 co-pay cap for insulin for all Medicare beneficiaries, and caps out-of-pocket retail drug costs for the first time in Medicare. Harris supports accelerating drug price negotiation to apply to more drugs, as well as extending the $35 cap on insulin copays and the cap on out-of-pocket drug costs to everyone outside of Medicare.

How Trump would approach drug price negotiations if elected is unclear. Trump supported federal negotiation of drug prices during his 2016 campaign, but he did not pursue the idea as president and opposed a Democratic price negotiation plan. During the current campaign, Trump said he “will tell big pharma that we will only pay the best price they offer to foreign nations,” claiming that he was the “only president in modern times who ever took on big pharma.” 

Beyond drug prices, the Trump administration issued regulations requiring hospitals and health insurers to be transparent about prices, a policy that is still in place and attracts bipartisan support. 

Future Outlook

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Ultimately, irrespective of the issues that get debated during the campaign, the outcome of the 2024 election – who controls the White House and Congress – will have significant implications for the future direction of health care, as is almost always the case. 

However, even with changes in party control of the federal government, only incremental movement to the left or the right is the norm. Sweeping changes in health policy, such as the creation of Medicare and Medicaid or passage of the ACA, are rare in the U.S. political system. Similarly, Medicare for All, which would even more fundamentally transform the financing and coverage of health care, faces long odds, particularly in the current political environment. This is the case even though most of the public favors Medicare for All, though attitudes shift significantly after hearing messages about its potential impacts. 

Importantly, it’s politically difficult to take benefits away from people once they have them. That, and the fact that seniors are a strong voting bloc, has been why Social Security and Medicare have been considered political “third rails.” The ACA and Medicaid do not have quite the same sacrosanct status, but they may be close

Resources

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Citation

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Levitt, L., The Politics of Health Care and the 2024 Election. In Altman, Drew (Editor), Health Policy 101, (KFF, September 2024) https://www.kff.org/health-policy-101-the-politics-of-health-care-and-the-2024-election/ (date accessed).

Congress and the Executive Branch and Health Policy

KFF Authors:

Table of Contents

Introduction

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The federal government is not the only place health policy is made in the U.S., but it is by far the most influential. Of the $4.5 trillion the U.S. spent on health in 2022, the federal government was responsible for roughly a third of all health services. The payment and coverage policies set for the Medicare program, in particular, often serve as a model for the private sector. Many health programs at the state and local levels are also impacted by federal health policy, either through direct spending or rules and requirements. Federal health policy is primarily guided by Congress, but carried out by the executive branch, predominantly by the Department of Health and Human Services.  

The Federal Role in Health Policy 

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No one is “in charge” of the fragmented U.S. health system, but the federal government probably has the most influence, a role that has grown over the last 75 years. Today the federal government pays for care, provides it, regulates it, and sponsors biomedical research and medical training.   

The federal government pays for health coverage for well over 100 million Americans through Medicare, Medicaid, the Children’s Health Insurance Program (CHIP), the Veterans’ Health Administration, the Indian Health Service, and the Affordable Care Act (ACA).  It also pays to help provide insurance coverage for tens of millions who are active-duty and retired military and for civilian federal workers. 

Federal taxpayers also underwrite billions of dollars in health research, mainly through the National Institutes of Health (NIH) and the Agency for Healthcare Research and Quality (AHRQ).   

Federal public health policy is spearheaded by the Centers for Disease Control and Prevention. Its portfolio includes tracking not just infectious disease outbreaks in the U.S. and worldwide, but also conducting and sponsoring public health research and tracking national health statistics.  

The Health Resources and Services Administration (HRSA) funds critical health programs for underserved Americans (including Community Health Centers) and runs workforce education programs to bring more health services to places without enough health care providers.  

Meanwhile, in addition to overseeing the nation’s largest health programs, the Centers for Medicare and Medicaid Services (CMS) also operates the federal insurance Marketplaces created by the ACA and enforces rules made by the law for private insurance policies.  

While the federal government exercises significant authority over medical care and its practice and distribution, state and local governments still have key roles to play.   

States oversee the licensing of health care professionals, distribution of health care resources, and regulation of health insurance plans that are not underwritten by employers themselves. State and local governments share responsibility for most public health activities and often operate safety-net facilities in areas with shortages of medical resources.  

The Three Branches of Government and How They Impact Health Policy 

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All three branches of the federal government – Congress, the executive branch, and the judiciary – play important roles in health policy.  

Congress makes laws that create new programs or modify existing ones. It also conducts “oversight” of how the executive branch implements the laws Congress has passed. Congress also sets the budget for “discretionary” and “mandatory” health programs (see below) and provides those dollar amounts.  

The executive branch carries out the laws made by Congress and operates the federal health programs, often filling in details Congress has left out through rules and regulations. Federal workers in the health arena may provide direct patient care, regulate how others provide care, set payment rates and policies, conduct medical or health systems research, regulate products sold by the private sector, and manage the billions of dollars the federal government spends on the health-industrial complex.   

Historically, the judiciary has had the smallest role in health policy but has played a pivotal role in recent cases. It passes judgment on how or whether certain laws or policies can be carried out and settles disputes between the federal government, individuals, states, and private companies over how health care is regulated and delivered.  Recent significant decisions from the Supreme Court have affected the legality and availability of abortion and other reproductive health services and the constitutionality of major portions of the ACA. 

The Executive Branch – The White House 

Although most of the executive branch’s health policies are implemented by the Department of Health and Human Services (and to a smaller extent, the Departments of Labor and Justice), over the past several decades the White House itself has taken on a more prominent role in policy formation. The White House Office of Management and Budget not only coordinates the annual funding requests for the entire executive branch, but it also reviews and approves proposed regulations, Congressional testimony, and policy recommendations from the various departments. The White House also has its own policy support agencies – including the National Security Council, the National Economic Council, the Domestic Policy Council, and the Council of Economic Advisors, that augment what the President receives from other portions of the executive branch. 

How the Department of Health and Human Services is Structured

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Most federal health policy is made through the Department of Health and Human Services. Exceptions include the Veterans Health Administration, run by the Department of Veterans Affairs; TRICARE, the health insurance program for active-duty military members and dependents, run by the Defense Department; and the Federal Employees Health Benefits Program (FEHB), which provides health insurance for civilian federal workers and families and is run by the independent agency the Office of Personnel Management.   

The health-related agencies within HHS are roughly divided into the resource delivery, research, regulatory, and training agencies that comprise the U.S. Public Health Service and the health insurance programs run by the Centers for Medicare and Medicaid Services (CMS).  

Ten of the 13 operating divisions of HHS are part of the U.S. Public Health Service, which also plays a role in U.S. global health programs. They are:  

  • The Administration for Strategic Preparedness and Response (ASPR)
  • The Advanced Research Projects Agency for Health  (ARPA-H)
  • The Agency for Healthcare Research and Quality (AHRQ)  
  • The Agency for Toxic Substances and Disease Registry (ATSDR)  
  • The Centers for Disease Control and Prevention (CDC)  
  • The Food and Drug Administration (FDA)  
  • The Health Resources and Services Administration (HRSA)  
  • The Indian Health Service (IHS)  
  • The National Institutes of Health (NIH)  
  • The Substance Abuse and Mental Health Services Administration (SAMHSA)  

The Centers for Medicare and Medicaid Services (CMS) is by far the largest operating division of HHS. It oversees not just the Medicare and Medicaid programs, but also the federal Children’s Health Insurance Program (CHIP) and the health insurance portions of the Affordable Care Act. Together, the programs under the auspices of CMS account for nearly a quarter of all federal spending in fiscal 2023, cost an estimated $1.5 Trillion in fiscal 2023, and served more than 170 million Americans – more than half the population.  

Who Makes Health Policy in Congress?

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How Congress oversees the federal health care-industrial complex is almost as byzantine as the U.S. health system itself. Jurisdiction and responsibility for various health agencies and policies is divided among more than two dozen committees in the House and Senate (see Table 1 and Table 2 below).  

In each chamber, however, three major committees deal with most health issues.   

In the House, the Ways and Means Committee, which sets tax policy, oversees Part A of Medicare (because it is funded by the Social Security payroll tax) and shares jurisdiction over other parts of the Medicare program with the Energy and Commerce Committee. Ways and Means also oversees tax subsidies and credits for the Affordable Care Act and tax policy for most employer-provided insurance.   

The Energy and Commerce Committee has sole jurisdiction over the Medicaid program in the House and shares jurisdiction over Medicare Parts B, C, and D with Ways and Means. Energy and Commerce also oversees the U.S. Public Health Service, whose agencies include the Food and Drug Administration, the National Institutes of Health, and the Centers for Disease Control and Prevention.   

While Ways and Means and Energy and Commerce are in charge of the policymaking for most of the federal government’s health programs, the actual amounts allocated for many of those programs are determined by the House Appropriations Committee through the annual Labor-Health and Human Services-Education and Related Agencies spending bill.   

In the Senate, responsibility for health programs is divided somewhat differently. The Senate Finance Committee, which, like House Ways and Means, is in charge of tax policy, oversees all of Medicare and Medicaid and most of the ACA.   

The Senate counterpart to the House Energy and Commerce Committee is the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over the Public Health Service (but not Medicare or Medicaid).   

The Senate Appropriations Committee, like the one in the House, sets actual spending for discretionary programs as part of its annual Labor-HHS-Education spending bill.  

Senate Committees with Health Jurisdiction

House Committees with Health Jurisdiction

The Federal Budget Process

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Under Article 1 of the U.S. Constitution, Congress is granted the exclusive power to “lay and collect Taxes, Duties, Imposts and Excises, and to pay the Debts and provide for the common Defence and General Welfare of the United States.”   

In 1974, lawmakers passed the Congressional Budget and Impoundment Control Act in an effort to standardize the annual process for deciding tax and spending policy for each federal fiscal year and to prevent the executive branch from making spending policy reserved to Congress. Among other things, it created the House and Senate Budget Committees and set timetables for each step of the budget process.   

Perhaps most significantly, the 1974 Budget Act also created the Congressional Budget Office (CBO). This non-partisan agency has come to play a pivotal role in not just the budget process, but in the lawmaking process in general. The CBO issues economic forecasts, policy options, and other analytical reports, but it most significantly produces estimates of how much individual legislation would cost or save the federal government. Those estimates can and do often determine if legislation passes or fails.  

The annual budget process is supposed to begin the first Monday in February, when the President is to present his proposed budget for the fiscal year that begins the following Oct. 1. This is one of the few deadlines in the Budget Act that is usually met.  

After that, the action moves to Congress. The House and Senate Budget Committees each write their own “Budget Resolution,” a spending blueprint for the year that includes annual totals for mandatory and discretionary spending. Because mandatory spending (roughly two-thirds of the budget) is automatic unless changed by Congress, the budget resolution may also include “reconciliation instructions” to the committees that oversee those programs (also known as “authorizing” committees) to make changes to bring the cost of the mandatory programs in line with the terms of the budget resolution. The discretionary total will eventually be divided by the House and Senate Appropriations Committees between the 12 subcommittees, each responsible for a single annual spending (appropriations) bill. Most of those bills cover multiple agencies – the appropriations bill for the Department of Health and Human Services, for example, also includes funding for the Departments of Labor and Education.   

After the budget resolution is approved by each chamber’s Budget Committee, it goes to the House and Senate floor, respectively, for debate. Assuming the resolutions are approved, a “conference committee” comprised of members from each chamber is tasked with working out the differences between the respective versions. A final compromise budget resolution is supposed to be approved by both chambers by April 15 of each year. (This rarely happens.) Because the final product is a resolution rather than a bill, the budget does not go to the President to sign or veto.   

The annual appropriations process kicks off May 15, when the House may start considering the 12 annual spending bills for the fiscal year that begins Oct. 1. By tradition, spending bills originate in the House, although sometimes, if the House is delayed in acting, the Senate will take up its own version of an appropriation first. The House is supposed to complete action on all 12 spending bills by June 30, in order to provide enough time to let the Senate act, and for a conference committee to negotiate a final version that each chamber can approve by October 1.  

That October 1 deadline is the only one with consequences if it is not met. Unless an appropriations bill for each federal agency is passed by Congress and signed by the President by the start of the fiscal year, that agency must shut down all “non-essential” activities funded by discretionary spending until funding is approved. Because Congress rarely passes all 12 of the appropriations bills by the start of the fiscal year (the last time was in 1996, for fiscal year 1997), it can buy extra time by passing a “continuing resolution” (CR) that keeps money flowing, usually at the previous fiscal year’s level. CRs can last as little as a day and as much as the full fiscal year and may cover all of the federal government (if none of the regular appropriations are done) or just the departments for the unfinished bills. Congress may, and frequently does, pass multiple CRs while it works to complete the appropriations process.  

While each appropriations bill is supposed to be considered individually, to save time (and sometimes to win needed votes), a few, several, or all the bills may be packaged into a single “omnibus” measure. Bills that package only a handful of appropriations bills are cheekily known as “minibuses.”   

Meanwhile, if the budget resolution includes reconciliation instructions, that process proceeds on a separate track. The committees in charge of the programs requiring alterations each vote on and report their proposals to the respective budget committees, which assemble all of the changes into a single bill. At this point, the budget committees’ role is purely ministerial; it may not change any of the provisions approved by the authorizing committees.   

Reconciliation legislation is frequently the vehicle for significant health policy changes, partly because Medicare and Medicaid are mandatory programs. Reconciliation bills are subject to special rules, notably on the Senate floor, which include debate time limitations (no filibusters) and restrictions on amendments. Reconciliation bills also may not contain provisions that do not pertain directly to taxing or spending.  

Unlike the appropriations bills, nothing happens if Congress does not meet the Budget Act’s deadline to finish the reconciliation process, June 15. In fact, in more than a few cases, Congress has not completed work on reconciliation bills until the calendar year AFTER they were begun.    

A (Very Brief) Explanation of the Regulatory Process

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Congress writes the nation’s laws, but it cannot account for every detail in legislation. So, it often leaves key decisions about how to interpret and enforce those laws to the various executive departments. Those departments write (and often rewrite) rules and regulations according to a very stringent process laid out by the 1946 Administrative Procedure Act (APA). The APA is intended to keep the executive branch’s decision-making transparent and to allow public input into how laws are interpreted and enforced. 

Most federal regulations use the APA’s “informal rulemaking” process, also known as “notice and comment rulemaking,” which consists of four main parts:  

  • Publication of a “Notice of Proposed Rulemaking (NPRM)” in the Federal Register, a daily publication of executive branch activities.  
  • Solicitation to the public to submit written comments for a specific period of time (usually from 30 to 90 days).  
  • Agency consideration of public reaction to the proposed rule; and, finally  
  • Publication of a final rule, with an explanation including how the agency took the public comments into account and what changes, if any, were made from the proposed rule. Final rules also include an effective date, which can be no less than 30 days but may be more than a year in the future.  

In situations where time is of the essence, federal agencies may truncate that process by issuing “interim final rules,” which can take effect even before the public is given a chance to comment. Such rules may or may not be revised later.   

Not all federal interpretation of laws uses the APA’s specified regulatory process. Federal officials also distribute guidance, agency opinions, or “statements of policy.”  

Future Outlook

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Given how fragmented health policy is in both Congress and the executive branch, it should not be a surprise that major changes are difficult and rare.  

Add to that an electorate divided over whether the federal government should be more involved or less involved in the health sector, and huge lobbying clout from various interest groups whose members make a lot of money from the current operation of the system, and you have a prescription for inertia. 

One potential wildcard—in June of 2024, the Supreme Court overturned a 40-year-old precedent, known as “Chevron deference,” that gave the benefit of the doubt in interpreting ambiguous laws passed by Congress to federal agencies rather than judges. Overturning Chevron will likely make it easier for outsiders to challenge federal agency actions, but it will be some time before the full ramifications become clear.  

Another problem is that when a new health policy can dodge the minefield of obstacles to become law, it almost by definition represents a compromise that may help it win enough votes for passage, but is more likely to complicate an already byzantine system further. 

Unless the health system completely breaks down, it seems unlikely that federal policymakers will be able to move the needle very far in either a conservative or a liberal direction. 

Resources

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Citation

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Rovner, J., Congress, the Executive Branch, and Health Policy. In Altman, Drew (Editor), Health Policy 101, (KFF, January 2025) https://www.kff.org/health-policy-101-congress-and-the-executive-branch-and-health-policy/ (date accessed).

News Release

Black and Hispanic Adults with Fair or Poor Mental Health Are Less Likely Than White Adults to Say They Received Mental Health Services, Reflecting Cost Concerns and Other Barriers to Care

Published: May 23, 2024

A new KFF analysis of our 2023 Survey of Racism, Discrimination, and Health finds that Black (39%) and Hispanic (36%) adults who report fair or poor mental health are less likely than White (50%) adults to say they received mental health services in the past three years.

Such disparities reflect several barriers to mental health care identified by these adults. In addition to cost concerns and being too busy or not being able to get time off to seek care, Hispanic and Black adults also disproportionately report other challenges such as being afraid or embarrassed to seek care, not knowing how to find a provider, or thinking they would be unable to find a provider with a shared background.

The findings come against a backdrop of what other KFF polling and analysis indicates is a national mental health crisis in the wake of the COVID-19 pandemic. People of color have been disproportionately affected by the rises in drug overdose and suicide deaths across the U.S. in recent years. They also are more likely to report experiences of racism and discrimination, which are associated with worse mental health and well-being.

Other key takeaways from the survey include:

  • Among adults who received or tried to receive mental health care, Asian (55%), and Black (46%) adults are more likely to report difficulty finding a provider who could understand their background and experiences compared to their White counterparts (38%). Among those who thought they needed mental health care but did not try to find a provider, Hispanic adults are more likely than White adults to say the primary reason was they didn’t know how to find a provider (24% vs. 11%) or that they were afraid or embarrassed to seek care (30% vs. 18%).
  • Awareness of the 988 mental health hotline remains low, particularly among Black, Hispanic, and Asian adults. As of Summer 2023, nearly one in five (18%) adults say they have heard a lot or some about 988, with Black (16%), Hispanic (11%), and Asian (13%) adults less likely to say they have heard about 988 than White adults (21%).
  • Adults who report unfair treatment or negative experiences with a provider are twice as likely as those without these experiences to say they went without needed mental health care. Four in ten (41%) adults who report they were treated unfairly or with disrespect by a health care provider and about one-third (35%) of adults who say they’ve had at least one negative experience with a health care provider say they did not get mental health services they thought they needed compared to smaller shares of those who do not report these experiences (18% and 15%, respectively).

For more data and analyses based on KFF’s Racism, Discrimination and Health Survey, visit kff.org.