Authored by KFF’s Tricia Neuman, Juliette Cubanski and Larry Levitt, this post for Health Affairs Forefront examines how the results of the first-ever Medicare drug price negotiations will generate savings for the government and for Medicare beneficiaries, and how candidates’ views on the issue could play a role in the upcoming elections and in shaping the future of government negotiation of drug prices.

Note: For the latest information on states with approved pre-release waivers, view our  Section 1115 tracker “Key Themes Maps.”In April 2023, the Centers for Medicare and Medicaid Services (CMS) released guidance encouraging states to apply for a new Section 1115 demonstration opportunity to test transition-related strategies to support community reentry for people who are incarcerated. This demonstration allows states a partial waiver of the “inmate exclusion policy,” which prohibits Medicaid from paying for services provided during incarceration (except for inpatient services). Justice-involved people are disproportionately low-income and often have complex and/or chronic conditions, including behavioral health needs (mental health conditions and/or substance use disorder (SUD)). Reentry services aim to improve care transitions and increase continuity of health coverage, reduce disruptions in care, improve health outcomes, and reduce recidivism rates.

As of August 19, 2024, CMS has approved Section 1115 reentry waiver requests from 11 states, while 13 additional reentry waivers remain pending. In July 2024, CMS announced it had developed a standard demonstration application and special terms and conditions to expedite the review and approval of reentry waiver requests (approving 7 reentry waivers in July). States with governors across political parties have pursued these waivers. California will be the first state to implement its reentry demonstration in October 2024 (after gaining approval in January 2023); California’s experience may inform other states’ implementation efforts. This Waiver Watch reviews CMS guidance and summarizes key features of the eleven approved 1115 reentry waivers.

What are the demographics and health needs of people who are incarcerated?

About 1.2 million people were incarcerated in federal and state prisons as of the end of 2022 and 660,000 people were held in local jails as of mid-year 2022. However, millions more interact with the correctional system each year (Appendix Table 1). The vast majority of people who are incarcerated in prisons and jails are male and over half of all people who are incarcerated are people of color (Appendix Figure 1). Hispanic and Black people are disproportionately represented among the carceral population (i.e., compared to their representation in the general population). Black people are incarcerated in prisons at nearly five times the rate of White people, and in jails more than three times the rate of White people. Racial disparities in incarceration further exacerbate health disparities.

Individuals who are incarcerated have higher rates of mental illness, substance use disorder, and chronic and physical health care needs than the general population and are particularly vulnerable upon release. These individuals have higher rates of chronic diseases such as hypertension, tuberculosis, hepatitis, and HIV/AIDS than the general population and also have significant behavioral health needs. An estimated 65% of people incarcerated in prisons (across the U.S.) have an active substance use disorder. Despite the high rates of physical and behavioral health needs among people who are incarcerated, access to health care services in prisons and jails is variable and may be limited. The U.S. Department of Justice issued guidance in 2022 indicating that preventing individuals who become incarcerated from continuing medication assisted treatment for opioid use disorder (prescribed before their detention) is a violation of the Americans with Disabilities Act (ADA). Upon release, people who were formerly incarcerated experience significant obstacles, including poverty, homelessness, stigma, legal barriers (e.g., to obtaining housing, employment etc.), and challenges accessing health care. When people leave incarceration, they are at greater risk of overdose death and suicide compared to the general population, as well as other adverse outcomes like increased risk for emergency department use, hospitalization, and recidivism.

What is the role of Medicaid for enrollees who are incarcerated?

The Affordable Care Act (ACA) Medicaid expansion provided new opportunities to connect enrollees leaving incarceration to coverage and services. The ACA expanded Medicaid eligibility to nearly all adults with incomes at or below 138% FPL ($20,783 for an individual in 2024) in the 41 states that have adopted the expansion. Previously, many adults who were incarcerated did not qualify for Medicaid due to restrictions that excluded low-income adults without dependent children from the program.

The “inmate exclusion” policy limits Medicaid coverage available to people who are incarcerated, but states have used various strategies to help maintain eligibility and coordinate care for people transitioning from incarceration. Current rules allow people to be enrolled in Medicaid while incarcerated, but the Medicaid “inmate exclusion” policy limits Medicaid reimbursement for incarcerated individuals to inpatient care provided at facilities that meet certain requirements. Most states facilitate access to Medicaid coverage by suspending rather than terminating coverage for enrollees who become incarcerated. Suspending eligibility expedites access to federal Medicaid funds if people receive inpatient care while incarcerated and allows coverage to be active immediately upon release, which facilitates access to health care services in the community. States have also adopted other strategies to coordinate care pre-release, including developing managed care requirements and fee-for-service initiatives.

What are 1115 waiver options to provide Medicaid coverage for individuals pre-release from carceral settings?

The 2018 SUPPORT Act directed CMS to issue guidance on how waivers can improve care transitions for people who are incarcerated but otherwise eligible for Medicaid. The SUPPORT Act required the Secretary of Health and Human Services (HHS) to convene a group of stakeholders to help inform the design of a demonstration opportunity to improve care transitions for people leaving incarceration. Findings from that convening were summarized in a report from the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and referenced in the waiver guidance issued by CMS. The report identifies promising practices to connect people to health care who are reentering the community after incarceration and summarizes the research evidence. Evidence suggests medication-assisted treatment (MAT) for opioid use disorder during incarceration and after release is associated with lower overdose and mortality rates and in-reach by peer navigators is associated with greater engagement in care following release. Other research suggests that Medicaid coverage can reduce recidivism.

In April 2023, CMS released guidance on the new Medicaid Reentry Section 1115 demonstration opportunity. The guidance summarizes CMS goals as well as demonstration features and minimum requirements, including:

• Carceral Settings. States participating in the demonstration may provide coverage for certain pre-release services to people incarcerated in state and/or local jails, prisons, and/or youth correctional facilities. States have discretion to identify the specific carceral settings eligible to participate and may set limitations on facility participation.
• Medicaid Eligibility and Enrollment. States are expected to suspend (rather than terminate) Medicaid eligibility when an adult Medicaid enrollee becomes incarcerated. States that do not currently suspend eligibility will be expected to fully implement suspension policies within two years. States are expected to work with corrections partners to assist people who are incarcerated but not already enrolled in Medicaid to apply for Medicaid upon or during incarceration, but no later than 45 days before expected release. States may consider using “presumptive eligibility” for individuals anticipated to have short incarceration stays.
• Eligibility for Pre-Release Services. States have the flexibility to define target populations (e.g., those with specific health conditions) and establish eligibility criteria. CMS encourages states to propose broadly defined populations of people soon-to-be released from incarceration who are otherwise Medicaid eligible.
• Minimum Benefits. CMS expects state proposals will include benefits “sufficiently robust” to be likely to improve care transitions, covering at least a minimum set of pre-release services:
  • Case management to assess physical, behavioral health, and health-related social needs (HRSN) and assist people who are incarcerated in obtaining both pre- and post- release services (including setting up post-release appointments);
  • MAT for all types of substance use disorders, with accompanying counseling; and
  • A 30-day supply of all prescription medications at the time of release.

States may request to cover other services including, for example, family planning services, behavioral health or preventive services (including peer support), and/or Hepatitis C treatment.

• Pre-Release Timeframe. States may offer coverage of pre-release services 30 to 90 days before the expected date of release.
• Provider Requirements. States may choose to offer in-person or telehealth services. CMS indicates a preference for “in reach” by community-based providers. If states rely on carceral health care providers, they must comply with Medicaid participation policies set by the state.
• Capacity Building Funds. CMS will consider state requests for time-limited federal matching funds for certain new expenditures (e.g., development of new business and operational practices and related IT, workforce development, and outreach and stakeholder convening) to support the implementation of reentry demonstration waivers.
• Reinvestment Requirements. States must agree to reinvest federal matching funds received for carceral health care services currently funded with state/local dollars into activities that increase access or improve the quality of health care services for people who are incarcerated or were recently released or for health-related social services that may help divert people released from incarceration from criminal justice involvement.

What is the current landscape of pre-release waivers?

As of August 2024, eleven states have approval to provide pre-release services to certain incarcerated, Medicaid eligible individuals (Figure 1). CMS has developed a standard demonstration application and special terms and conditions (STCs) to expedite the approval of pre-release waiver requests (approving 7 waivers in July 2024). Features of the approved demonstrations (i.e., eligible carceral settings, pre-release coverage period, eligibility criteria for pre-release services, and benefits) vary across states (Table 1). The number of people potentially affected by these initiatives will vary based on each state’s incarcerated population as well as other state specific factors/decisions (e.g., eligibility criteria for services, state/corrections efforts to identify and enroll Medicaid-eligible individuals). California, for example, estimated in its initial application that approximately 200,000 people each year will be eligible to receive pre-release services under the demonstration waiver, while Washington estimated 4,000 people will receive pre-release services each year (both states’ estimates assume about half of all individuals released from incarceration will be eligible for pre-release services). Section 1115 waivers must be “budget neutral” for the federal government (i.e., costs under a waiver must not exceed what federal costs would have been for a state without the waiver). In its approvals, CMS has established per member per month spending caps for reentry services and aggregate (annual) spending caps for reentry planning and implementation activities.

As of August 2024, thirteen additional states (including DC) have pre-release waivers pending review at CMS. These pending requests vary in scope by pre-release period, eligibility, and benefits. Many of these requests were submitted prior to the release of the April 2023 CMS guidance. States with pending requests may need to make changes to conform with the new guidance and requirements.

What to watch?

Reentry initiatives are often part of broader reforms included in state 1115 waivers. States may currently be pursuing other policies and initiatives aimed at supporting individuals following release from correctional settings. For example, a few states have or are seeking approval to implement 12-month continuous eligibility for certain adults, including individuals released from corrections facilities, to promote continuity of coverage. Additionally, CMS recently expanded tools available to states to address enrollee health-related social needs, including approving coverage (under 1115 authority) of rent/temporary housing and utilities for up to 6 months as well as other housing and nutrition supports. Target populations include individuals experiencing high-risk care transitions—including from corrections facilities and the child welfare system. The outcome of the 2024 presidential election may affect states’ ability to continue to pursue some of these initiatives, as Section 1115 waivers generally reflect administrative priorities.

Implementation of pre-release services will require forging new partnerships with and providing significant technical assistance to corrections agencies, health care providers, and community-based organizations. CMS recognizes the operational complexities involved with providing services to an incarcerated population. States must submit reentry implementation plans to CMS for approval. Approved reentry waivers include authority to spend federal Medicaid funds on activities that support implementation, including planning activities, staff recruitment and training, and IT infrastructure. State Medicaid agencies will need to work closely with corrections agencies including to ensure access to demonstration-covered services, to facilitate access into carceral facilities for community-based health care providers and case managers, and to ensure systems are in place to share data and information. In April 2024, the Health Resources and Services Administration (HRSA) announced new funding for community health centers to support transitions in care for people leaving incarceration along with draft policy guidance. Community health centers provide comprehensive primary and behavioral health care services to individuals in medically underserved communities and may play an important role in post-release care delivery.

Section 1115 demonstration waivers are subject to regular reporting, monitoring, and evaluation requirements. As a condition of approval, states must submit a monitoring protocol, quarterly and annual reports, a mid-point assessment report, an evaluation design, and interim/summative evaluation reports. Information and analyses from independent evaluations will help answer questions about the impact of these initiatives on continuity of coverage, management of serious behavioral health conditions, and health outcomes (e.g., post-release overdose deaths, suicide, and other adverse outcomes); however, these evaluations will not be available for a number of years. In the meantime, initial implementation plans and regular state monitoring reports may yield important operational details, implementation information (including challenges and mid-course corrections), as well as preliminary enrollment and pre-release service utilization data. California will be the first state to implement its reentry demonstration in October 2024 (after gaining approval in January 2023). California’s experience may inform other states’ implementation efforts.

Federal legislation may further impact Medicaid coverage and access for people who are incarcerated and state capacity to support community transition. The Consolidated Appropriations Act of 2024, signed into law in March 2024, requires states to suspend rather than terminate Medicaid coverage for all individuals who are incarcerated starting January 1, 2026 (this suspension requirement is already in place for youth). The legislation includes $113.5 million in appropriated funds to help states meet the new requirement. It also directs CMS to issue guidance (within 18 months) on strategies and best practices to address implementation and operational challenges to ensure access to and continuity of care for Medicaid and CHIP beneficiaries before, during, and after incarceration. These efforts could supplement ongoing state approaches and federal investments to expand access to substance use disorder treatment. Other legislation introduced at the federal level in 2023 (e.g., SUPPORT ACT reauthorization, the Reentry Act, and the Due Process Continuity of Care Act) would expand Medicaid coverage for people who are incarcerated if passed.

Appendix Tables

This fact sheet was updated on October 9, 2024 to reflect new data sources.

Key Facts

• The first cases of what would later become known as AIDS were reported in the United States (U.S.) in June of 1981. Today, there are more than 1.2 million people estimated to be living with HIV in the U.S. and there are an estimated 31,800 new infections (cases among people who are both diagnosed and undiagnosed) in 2022. While care and treatment can make HIV a manageable chronic condition, about 8,000 people die with HIV-related illness as a contributing cause of death each year.
• HIV continues to have a disproportionate impact on certain populations, particularly people of color, gay and bisexual men and other men who have sex with men, and transgender women.
• HIV testing is important for both treatment and prevention efforts. While knowledge of HIV status is growing, in 2022, an estimated 13% of those with HIV were unaware they were HIV-positive.
• Antiretroviral therapy (ART) has substantially reduced HIV-related morbidity and mortality, improved long-term outcomes for people with HIV, and plays a key role in HIV prevention. Treatment guidelines recommend initiating treatment as soon as one is diagnosed with HIV. When an individual with HIV is on antiretroviral therapy and the level of HIV in their body is undetectable, there is no risk of transmission through sex. Still, many people with HIV are not in care, on treatment, or virally suppressed.
• Pre-exposure prophylaxis (PrEP) offers important prevention opportunities, but uptake has but the majority of those who could benefit from the medication have not been prescribed it and racial/ethnic disparities persist.
• Numerous federal and local government departments and agencies are involved in the domestic HIV/AIDS response, which together provide disease surveillance, prevention, care, support services, and health insurance coverage. Additionally, the private sector and community-based organizations provide services for people with and at increased risk for HIV.

Overview

• More people are living with HIV in the U.S. than ever before, largely due to successful HIV treatment which extends the lifespan, but also because new HIV infections continue to occur.
• Current U.S. HIV treatment guidelines recommend initiating ART as soon as one is diagnosed with HIV, and new research has underscored the importance of starting treatment early. Engaging in treatment early and consistently affords individuals with HIV optimal care outcomes including improved health, quality of life, and life expectancy, as well as offering preventative benefits. When an individual with HIV is consistently engaged with antiretroviral therapy and the level of HIV in their body is undetectable, there is effectively no risk of sexual transmission.
• However, looking at estimates across the continuum from HIV diagnosis to viral suppression reveals missed opportunities for addressing the epidemic. According to the Centers for Disease Control and Prevention (CDC), while many people with HIV are diagnosed (87%), far fewer receive medical care (66%), and fewer still are virally suppressed (57%), though each of these estimates has increased over time. Viral suppression is greater among those who are in medical care but many face systemic social barriers that can make care engagement challenging.
• Yet, there have been some promising trends, as the number of new HIV infections (among those diagnosed and undiagnosed) declined by an estimated 76% between 1984 and 2022 and by 19% more recently (between 2010 and 2022). Still, an estimated 31,800 new infections occurred in the U.S. in 2022, and declines were not seen among all populations.
• Initially, HIV-related mortality rates (deaths with HIV noted as the underlying cause of death), rose steadily through the 1980s and peaked in 1995, but have dropped by 9-fold since then, and by over half since 2010. This is largely due to ART, but also to decreasing HIV incidence. Still, in 2022, nearly 5,000 people died with HIV as the underlying cause of death and about 8,000 died with HIV as a contributing cause of death.
• In 2022, most newly diagnosed cases of HIV occurred among gay and bisexual men and other men who have sex with men (67%). An additional 4% occurred among gay and bisexual men with a history of injection drug use. Diagnoses attributable to injection drug use alone have declined significantly over time and accounted for 7% of diagnoses in 2022. Transmission through heterosexual sex accounted for 22% of HIV diagnoses.
• HIV testing is important for both treatment and prevention efforts and rapid testing is now more widely available. While knowledge of HIV status is growing, in 2022, 13% of those with HIV were estimated to be unaware they are HIV-positive. Knowledge of HIV status is important because individuals with HIV can engage in care and treatment to achieve optimal health outcomes and can take steps to prevent transmission. Testing also offers an opportunity for those who are HIV negative to engage in prevention opportunities. Routine HIV testing is recommended for all people ages 13-64, and most forms of health insurance cover HIV testing, usually without cost-sharing.
• PrEP is a safe and highly effective preventive medication that reduces the risk of acquiring HIV through sex by 99% and injection drug use by 74% when taken as prescribed. While the number of persons prescribed and covered for PrEP by insurance has almost doubled between 2018 (221,026) and 2022 (437,425), the CDC estimates that approximately 64% of the more than 1.2 million Americans who could benefit from PrEP are not yet accessing it, and significant racial/ethnic disparities persist.
• Post-exposure prophylaxis (PEP), medication used after a high-risk event to prevent HIV seroconversion, also offers a prevention opportunity, including reducing risk by more than 80% if started within 72 hours of possible HIV exposure.

Impact Across the Country

• Annual HIV diagnoses have declined by 12% between 2010 and 2022. Factors such as updated treatment guidelines, increased knowledge of status, and the availability of PrEP have contributed to these decreases. However, this decline has not occurred evenly across all populations (described below).

• Although HIV has been reported in all 50 states, the District of Columbia, and U.S. territories, the impact of the epidemic is not uniformly distributed. The top ten states in terms of number of HIV diagnoses are home to 55% of the U.S. population and accounted for about two-thirds (67%) of diagnoses among adults and adolescents in 2022 (Table 1). Regionally, the South saw a disproportionate burden and accounted for over half of HIV diagnoses in 2022.
• Rates of HIV diagnoses among adults and adolescents per 100,000 provide a different measure of the epidemic’s impact, since they reflect the concentration of diagnoses after accounting for differences in population size across states/regions. Among states, the District of Columbia (D.C) has the highest ratein the nation (36.6), nearly 3 times the national rate (13.3), followed by Georgia which has a rate (27.4) twice that of the national rate. Eight of the top 10 states by rate are in the South.
• HIV diagnoses are concentrated primarily in large U.S. metropolitan areas (80% in 2022), with rates highest in Miami/Fort Lauderdale, Memphis, and Atlanta.

Impact on Communities of Color

• People of color have been disproportionately affected by HIV/AIDS since the beginning of the epidemic, and represent the majority of new HIV diagnoses, people living with HIV disease, and deaths among people with HIV.
• Black and Latino people account for a disproportionate share of new HIV diagnoses, relative to their size in the U.S. population. Black people account for more people living with HIV than any other racial or ethnic group – in 2022, an estimated 40% of people living with HIV in the U.S. are Black despite Black people accounting for just 12% of the U.S. population. About a quarter of people living with HIV are Hispanic/Latino (26%) but Hispanic/Latino people make up 19% of the U.S. population (see Figure 2).
• In 2022, Black adults and adolescents also had the highest rate of new HIV diagnoses (41.6 per 100,000), followed by Latino people (23.4). Whereas rates of HIV diagnoses were lower among White (5.3) and Asian (4.6) people.
• Looking at recent trends, from 2010 to 2022, only Hispanic/Latino and Asian people experienced an increase in HIV diagnoses (24% and 26% increases, respectively), while all other groups of people by race/ethnicity, sexes, and transmission categories saw decreases in HIV diagnoses. (See Figure 1.)
• In 2022, Black people accounted for more than four in ten (43%) deaths among people with diagnosed HIV. Survival after an AIDS diagnosis is lower for Black people than for other racial/ethnic groups, and Black people have had the highest age-adjusted death rate due to HIV disease throughout most of the epidemic. HIV ranks higher as a cause of death for Black and Latino people, compared with White people.

Impact on Women

• In 2022, 22% of all people living with HIV (268,800) were estimated to be women.
• From 2010 to 2022, HIV diagnoses among women decreased by 25%, while they decreased by 8% among men. In more recent years, the rate of decrease in HIV diagnoses has slowed for both groups. (See Figure 1.)
• Women of color are particularly affected by the HIV/AIDS epidemic. In 2022, Black women accounted for half (50%) of new HIV diagnoses among women while shares of diagnoses were lower in White (24%), Latina (20%), and Asian (1%) women.

Impact on Young People

• Teens and young adults continue to be at higher risk for HIV than other age groups, with those under 35 accounting for 56% of HIV diagnoses in 2022 (those ages 13-24 accounted for 19% and those ages 25-34 accounted for 37%). Most young people acquire HIV sexually.
• Among young people, gay and bisexual men and people of color have been particularly affected.
• Perinatal HIV transmission, from an HIV-positive parent to their baby, has declined significantly in the U.S., largely due to increased testing efforts among pregnant people and ART which can prevent mother-to-child transmission. However, the rate for perinatally acquired HIV is 5 times higher among births for Black people (5.5) than the national rate (1.1).

Impact on Gay and Bisexual Men

(Data in this section are based on individuals who acquired HIV through male-to-male sexual contact or male-to-male sexual contact and injection drug use.)

• Male-to-male sexual contact accounts for most HIV diagnoses (71% in 2022) and men who have sex with men account for most people living with HIV (63% in 2022). (See Figure 1.)
• Among gay and bisexual men, Hispanic/Latino men accounted for the largest number of diagnoses (9,507) in 2022, followed by Black men (9,092). Young Black gay and bisexual men (ages 13-24) accounted for 49% of diagnoses among all men ages 13-24.
• Overall, from 2010 to 2022, HIV diagnoses among gay and bisexual men decreased by 4%. However, more recently (between 2018 and 2022), HIV diagnoses increased by 21% among Latino gay and bisexual men.

The U.S. Government Response

• In FY 2022, U.S. federal funding to combat HIV in the U.S. was estimated to be $35.8 billion. Most funding was for care and treatment ($28.7 billion) through the Medicaid and Medicare programs. Cash and housing assistance totaled $3.3 billion, followed by research ($2.7 billion) and prevention ($1.1 billion).
• Numerous federal departments and agencies are involved in the domestic HIV/AIDS response and key government programs that provide health insurance coverage, care, and support to people with HIV in the U.S. include Medicaid, Medicare, the Ryan White HIV/AIDS Program, and the Housing Opportunities for Persons with HIV/AIDS Program (HOPWA). Social Security’s income programs for people with disabilities (SSI and SSDI) are important sources of support. The Centers for Disease Control and Prevention (CDC) leads U.S. surveillance and prevention activities, which are carried out in conjunction with state and local health departments. In addition to government efforts, a wide range of community and other organizations provide services for people with HIV and those at increased risk for HIV.
• The U.S. has had a National HIV/AIDS Strategy (NHAS) since 2010 when it was first adopted under President Obama. The NHAS sets out and tracks national goals related to the domestic epidemic and has evolved over time to account for changing policy environments and to align with the science.
• In 2019, the Trump Administration launched the “Ending the HIV Epidemic Initiative” (EHE), a federal effort to reduce new HIV infections in the United States. The initiative, which is part of NHAS, was built on efforts made by the Obama Administration and continues under the Biden Administration and targets the regions hardest hit by the HIV epidemic. It has also been accompanied by an infusion of federal funding, marking the first significant increases for HIV programs in many years. In FY24 EHE funding totaled $573.25 million.

Medicaid is the primary program providing comprehensive health and long-term care coverage to approximately one in five low-income Americans. States administer Medicaid programs within broad federal rules, but have flexibility in designing programs, which creates variation in spending and enrollment as well as spending per enrollee across eligibility groups and states. Understanding variation in Medicaid spending per enrollee can help inform the implications of various policy proposals – such as expanding coverage for Medicaid enrollees or closing the coverage gap, as favored by the Biden-Harris Administration, or restructuring Medicaid financing into a block grant or a per capita cap as well as limiting Medicaid eligibility and benefits, policies that have in the past been favored by former President Trump.

This data note provides an overview of total Medicaid (state and federal shares) spending per enrollee for full-benefit Medicaid enrollees by eligibility group and state in 2021. Data from 2021 is the most current final version of Medicaid data at the time of this analysis. Full-benefit Medicaid enrollees are those that qualify for a full range of Medicaid services such as doctor’s visits, hospitalizations, prescription drugs, and home health services. A small number of total enrollees (9% of all enrollees in 2021) qualify for only a limited set of Medicaid benefits such as family planning or treatment of an emergency medical condition and are not included in this analysis. References to Medicaid enrollees in this data note refer to full-benefit enrollees. See methods for more details. Detailed state-level data are also available on State Health Facts.

National Medicaid spending per enrollee was $7,593 in 2021, though that varied widely by eligibility group (Figure 1). Overall, children account for 37% of full-benefit enrollment, but 15% of the spending, while seniors and individuals with disabilities account for 21% of enrollment but 52% of the spending (data not shown.) The disproportionate spending on certain eligibility groups stems from variation in spending per enrollee across the eligibility groups. Spending per enrollee was highest for seniors, those ages 65 and older ($18,923), and individuals with disabilities ($18,437) (Figure 1). Those groups had per-enrollee spending approximately six times higher than child enrollees ($3,023), which had the lowest spending of any eligibility group (Figure 1). Differences in spending per enrollee reflect differences in health care needs and utilization. For example, seniors and those eligible on the basis of disability tend to have higher rates of chronic conditions, more complex health care needs and are more likely to utilize long-term services and supports (LTSS) than other enrollees. Most seniors and some individuals with disabilities enrolled in Medicaid are also dually eligible for Medicare. For dual-eligible individuals, Medicare is the primary payer for acute care services while Medicaid pays for services that Medicare does not, including vision, dental, and most LTSS. Medicaid spending per enrollee accounts for less than half of all spending for full-benefit dual-eligible individuals that are 65 and older.

Flexibility for states to determine eligibility levels, benefits, and provider payments in the Medicaid program leads to wide variation in per-enrollee spending across states (Figure 2). Other factors contributing to variation in per-enrollee spending include variation in state populations and demographics, ability and effort to raise revenue, and variation in health care costs and markets. Across states, Medicaid spending per enrollee ranged from $3,750 to $12,425, with a median spending of $7,784 (Figure 2). Tennessee, Florida, Oklahoma, and Nevada reported some of the lowest spending per enrollee, while Washington, D.C., Virginia, Massachusetts, and Minnesota reported the highest spending per enrollee. Approximately one-fifth of states had spending greater than $9,000 per enrollee (Figure 2).

Within each eligibility group, there is also considerable variation in spending per enrollee across states (Figure 3). Individuals with disabilities had the widest variation across states for per-enrollee spending, ranging from $4,602 in Florida to $52,602 in Connecticut (Figure 3). States have considerable flexibility to decide the populations and services covered for LTSS, which drives large variation in per-enrollee spending for seniors and people with disabilities, who are more likely to use LTSS. In contrast, per-enrollee spending for children ranges from $1,958 in Tennessee to $6,012 in Kentucky (Figure 3). All states must provide comprehensive coverage for children through the Early Periodic Screening Diagnosis and Treatment (EPSDT), which contributes to somewhat less variation in per-enrollee spending for children.

Many—but not all—states that have relatively high or low overall per-enrollee spending tend to see those same patterns across eligibility groups in the state (Figure 3). Some states with the lowest overall per-enrollee spending (e.g. Tennessee, Oklahoma) fall among the states with the lowest per-enrollee spending for all eligibility groups (Figure 3). Others, such as Florida and Nevada are more mixed across eligibility groups. For example, Florida, has low per-enrollee spending across all eligibility groups except for children, where it has one of the highest per-enrollee spending. Similarly, some states with the highest overall per-enrollee spending (e.g. Washington, D.C., Virginia) fall among the states with the highest per-enrollee spending for all eligibility groups. However, states like Minnesota and Massachusetts are less consistently high across all eligibility groups (Figure 3).

Even within a given state and eligibility group, there is wide variation in spending (Table 1). For example, among individuals with disabilities in Virginia, 25% had spending less than $16,051 and 5% had spending more than $127,703 – eight times higher (Table 1). Additionally, 25% of seniors in Alabama had spending less than $2,061, and 25% had spending fourteen times greater ($28,761) (Table 1). Despite the generally lower costs for non-disabled adult and child enrollees, the variation in spending for these eligibility groups was wide in Washington, Colorado, and North Carolina as well.

Per-enrollee spending in states that expanded Medicaid was higher for all eligibility groups than in non-expansion states (Figure 4). Expansion states spent on average $8,116 per enrollee – over $2,000 more per enrollee when compared to non-expansion states, which spent $5,988 per enrollee (Figure 4). Some have argued that adopting Medicaid expansion diverts funding from non-expansion enrollees (e.g. children, individuals with disabilities) to enrollees eligible only after expanding Medicaid (i.e. ACA expansion adults). However, across all categories, average per-enrollee spending is higher in expansion states. For instance, expansion states have an average spending of $25,170 per enrollee eligible based on disability, while non-expansion states spend on average $10,494 per enrollee in the same eligibility group. Similarly, expansion states spend $19,783 per senior enrollee compared to $15,915 for non-expansion states (Figure 4). These differences in spending may reflect state policy choices about benefits and eligibility, in addition to payment rates, regional variation in health care costs, and state demographics.

Summary

June 2024 marked the 13th-consecutive month of record-breaking high temperatures. In early July 2024, the Eastern and Central regions of the U.S. experienced a record breaking heat wave, that exposed more than 200 million people to 90 degree Fahrenheit weather for more than seven days. As of mid-July, 37 people were suspected to have died from heat-related causes, however this is likely an undercount. As temperatures continue to rise and extreme heat events become more frequent in the U.S., people of color and other underserved communities are likely to be disproportionately affected due to increased exposure to heat and more limited access to air conditioning.

This brief examines disparities in access to air conditioning in the home by race and ethnicity and income and discusses the implications for heat-related health risks, including heat-related mortality. It is based on KFF analysis of data from the Residential Energy Consumption Survey, a nationally representative household survey. The survey asks respondents about how energy is utilized in their home, such as powering air conditioning units, while also collecting demographic and local weather information. Temperature in the respondent’s region is estimated from weighted temperatures of nearby weather stations.

Overall, this analysis shows that Asian-, Black-, and Hispanic-led households are more likely to report not having an air conditioning unit in their home compared to White households and keeping their homes at unsafe or unhealthy temperatures. Black- and Hispanic-led households are more likely than Asian- and White-led households to report being unable to use their air conditioning units due to financial challenges and to say they reduced or went without basic needs due to their home energy bills in the past year. Lower income households also are more likely than higher-income households to report these challenges.

More limited access to air conditioning contributes to disproportionate exposure to extreme heat and the development of heat-related illnesses, including death. As extreme heat worsens, strategies to increase access to residential air conditioning units and reduce exposure to extreme heat will be important for reducing the health risks associated with heat-related illnesses and mitigating disparities in these risks and negative health outcomes.

Access to and Use of Air Conditioning

People of color and those with lower household incomes are more likely to say they lack air conditioning than their White and higher income counterparts. In total, over 35 million people in the US report living in a household without an air conditioner, including almost 5 million people with a Black head of household, 6.2 million people with a Hispanic head of household, 3.6 million people with an Asian head of household, and 19.2 million people with a White head of household. One in five (21%) Asian-led households and about one in seven Black (15%) and Hispanic (14%) households do not have air conditioning equipment compared to one in ten (10%) White households. In addition, 17% of households with lower incomes (annual household income of less than $25,000) say they lack air conditioning compared to 8% of households with higher incomes (annual household income of $75,000 or more) (Figure 1). These disparities in access to air conditioning by race and ethnicity and by household income persist when limited to regions with above-average temperatures (see Appendix A), where 7% of households overall lack access.

Black and Hispanic households and those with lower incomes are more likely to report not using their air conditioners due to financial challenges compared to White and higher income households. Overall, 5% of households say they were unable to use air conditioning equipment in the past year because their equipment broke and they couldn’t afford to replace it, or their equipment was shut off because they were unable to pay their bills (Figure 2). This includes about one in ten Black (11%), Hispanic (9%), and lower income households (10%) compared to 4% of White households and 2% of higher income households. These disparities persist even in regions with above-average temperatures, where 7% of households say they were unable to use air conditioning equipment due to these reasons.

People of color and those with lower household incomes are more likely to say they keep their homes at temperatures they identified as unsafe or unhealthy than their White and higher income counterparts. Overall, one in ten households say they kept their homes at unhealthy temperatures at least once in the past year. This share was higher among Black (17%), Hispanic (17%), and Asian (12%) households compared to White households (7%) (Figure 3). One in five (21%) lower income households also say this compared to 4% of higher income households. These disparities persist even in regions with above-average temperatures.

Black, Hispanic, and lower income households also are more likely than White and higher income households to report reducing or foregoing basic needs due to their home energy bills in the past year (Figure 4). About four in ten Black (40%) and Hispanic (37%) households say they had to reduce or forego basic necessities such as medicine or food due to their energy bills in the past year compared to one in seven (14%) White households. Four in ten (40%) lower income households also report this compared to 6% of higher income households. These disparities persist even in regions with above-average temperatures, where almost a quarter (23%) of households say they had to reduce or forgo basic needs due to their energy bills.

Implications for Heat-Related Health Risks

Extreme heat is a serious threat to health and is the leading cause of weather-related deaths in the U.S. An analysis finds that 2023 set the record for the number of heat-related deaths in the U.S., with at least 2,300 death certificates citing the effects of excessive heat as a cause of death. Further, the Centers for Disease Control and Prevention reports that there were 119,605 emergency department visits for heat-related illness in 2023. In 2020, about 660,000 households reported that someone needed medical attention in the past year because their home was too hot.^1 ,2 

While extreme heat has health implications for everyone in the U.S., some communities of color have higher risks of heat-related mortality than White people due to underlying inequities. Consistent with trends in earlier years, between 2018-2022, American Indian or Alaska Native people had the highest age-adjusted heat-related death rate, and Black people had a higher rate of heat-related deaths compared to White people. The rate for Hispanic people was more similar to that of White people, while Asian people had a lower age-adjusted rate of heat-related death (Table 1).[1] Data also show that noncitizens are more likely to die from heat exposure compared with U.S. citizens. These higher mortality risks reflect increased exposure to heat due to underlying inequities. Historical policies such as redlining have led to the residential segregation of communities of color who have a higher likelihood of living in a census tract with higher summer daytime surface urban heat island intensity compared to their White counterparts. Communities that live in these historically zoned areas are also more likely to have higher rates of asthma, cardiovascular illnesses, and other diseases that increase their risk of poor health outcomes associated with exposure to climate change-related extreme heat and air pollution. Low-income communities and communities of color also suffer from tree inequity, increasing the risk of exposure to extreme heat and subsequent heat-related illnesses.

As temperatures continue to rise, U.S. power grids may be unable to support the surges in energy use due to increases in air conditioning usage during heat wave events. Power outages that are considered medically relevant—lasting more than 8 hours and outlasting the lifespan of most medically necessary devices— tend to most frequently happen during the spring and summer months. They also tend to occur during severe weather or climate events, and during times of high electricity usage. These power outages can leave people without air conditioning or heating for extended periods of time, potentially increasing the risk of adverse health outcomes. In November 2023, the Biden-Harris administration announced up to $3.9 billion to strengthen the country’s electric grid’s resilience and reliability against climate change and extreme weather events.

As extreme heat worsens, strategies to increase access to residential air conditioning units and reduce exposure to extreme heat will be important for reducing the health risks associated with heat-related illnesses and mitigating disparities in these risks and negative health outcomes. There have been efforts to increase access to air conditioning units, which have played an important role in reducing heat-related deaths. In 2023, the Biden-Harris administration released about $3.7 billion in Low Income Home Energy Assistance Program (LIHEAP) funding that helps families sustain safe and healthy indoor temperatures. LIHEAP funds can also help households pay for energy bills and help them stay cool during the summer through the LIHEAP Cooling Assistance Program. In June 2024, the U.S. Department of Housing and Urban Development (HUD) announced new guidance on the use of HUD funding to reduce the impacts of extreme heat on residents of public housing. The guidance seeks to reduce the energy costs associated with cooling their homes during heat waves by increasing utility allowances and forgoing surcharges for the use of air conditioning for residents. HUD and the U.S. Department of Agriculture also announced the adoption of minimum energy standards for new single-family and multi-family unit homes that will reduce energy use and maximize energy cost-savings for residents. Continued efforts to address rising temperatures, reduce risks of heat exposure, and increase protections for those most at-risk for heat exposure will be important for reducing negative health impacts due to extreme heat, particularly for groups who already face disparities in exposure to heat and health risks.

Appendix A

A majority of states (35 states) have households that are in the top 50 percent of hottest places in the U.S. In 2023, the West, South Central, and South Atlantic regions of the United States were identified as places with at least one household with above average heat.³  Some of the hottest states that frequently experience a higher number of Cooling Degree Days (CDDs) than the national average also have high shares of people of color, including Hawaii, which experiences +145% CDDs above the national average and about eight in ten (81%) of its population are people of color, Florida, which experiences +141% CDDs above the national average and about half (49%) of its population are people of color, and Texas, which experiences +92% CDDs above the national average and about six in ten (61%) of its population are people of color. Similar trends are seen in states with the highest shares of people who live below the Federal Poverty Line (FPL), including Louisiana, which experiences +86% CDDs above the national average and Mississippi, which experiences +51% CDDs above the national average and about one in five (both at 19%) of the population live below the FPL (Appendix Figure 1).

1. It is well documented that the measured number of deaths associated with extreme heat is likely an undercount. Deaths associated with heat-related illness or extreme heat may not be captured on death certificates, while heat may be a contributing factor to death the underlying cause may be listed as a cardiovascular or respiratory event or other underlying diagnosis. These values are likely underestimates of the number of deaths caused by exposure to extreme heat. ↩︎
2. KFF analysis of 2020 Residential Energy Consumption Survey. ↩︎
3. Ibid. ↩︎

Amid rising interest in and use of artificial intelligence (AI) by individuals and businesses, most of the public (63%), including most AI users (56%), are not confident that AI chatbots provide accurate health information, a new KFF Health Misinformation Tracking Poll finds.

The poll comes as AI chatbots such as ChatGPT, Google Gemini, and Microsoft CoPilot have become widely available and public use has risen. About one in six (17%) adults now say they use such chatbots at least once a month to find health information and advice. That includes a quarter (25%) of those under age 30.

“While most of the attention around AI in health is focused on how it can transform medical practice and create new business opportunities, consumers are also using it, and the jury is still out on whether it will empower or confuse them,” KFF President and CEO Drew Altman said. “At KFF, our focus will be on how AI and other information technologies affect people.”

Other findings include:

• AI users’ trust in chatbot responses varies based on the type of information provided. For example, most users say they trust chatbots’ responses related to practical tasks (66%) and technology (61%) at least a fair amount. Far fewer say so about responses related to health (36%) and politics (24%).
• When asked about AI chatbots generally, most of the public (56%) say they are not confident that they can tell what information is true and what is false in their responses. Even among those who use AI, half say they aren’t sure they can tell fact from fiction.
• For most of the public, the verdict is still out on whether they believe AI mostly helps or hurts people trying to find accurate health information. Similar shares say it mostly helps (21%) or mostly hurts (23%), with a majority (55%) saying they are unsure.

Designed and analyzed by public opinion researchers at KFF. The survey was conducted June 3-June 24, 2024, online and by telephone among a nationally representative sample of 2,428 U.S. adults in English and in Spanish. The margin of sampling error is plus or minus 3 percentage points for the full sample. For results based on other subgroups, the margin of sampling error may be higher.

Highlights from the poll will be featured in an upcoming edition of the KFF Health Misinformation Monitor, a twice-a-month briefing that tracks the evolution and spread of health misinformation. Both the poll and the monitor are part of KFF’s new Health Misinformation and Trust Initiative.

There has been heightened focus on health disparities and their underlying causes in recent years. These disparities are not new and reflect longstanding structural and systemic inequalities rooted in contemporary and historical racism and discrimination. This brief provides an introduction to what health and health care disparities are, why it is important to address them, what the status of disparities is today, recent federal actions to address disparities, and key issues related to addressing disparities in the future. More detailed information on this topic can be found in KFF’s Health Policy 101 chapter on Race, Inequality, and Health.

What are Health and Health Care Disparities?

Health and health care disparities refer to differences in health and health care between groups that stem from broader social and economic inequities (Figure 1). Health disparities include differences in health outcomes, such as life expectancy, mortality, health status, and prevalence of health conditions. Health care disparities include differences between groups in measures such as health insurance coverage, affordability, access to and use of care, and quality of care. Disparities occur across multiple factors including race and ethnicity, socioeconomic status, age, geography, language, gender, disability status, citizenship status, and sexual identity and orientation. Reflecting the intersectional nature of people’s identities, some individuals experience disparities across multiple dimensions. The U.S. has a long history of exclusionary policies and events that have driven and continue to contribute to racial and ethnic disparities in health today.

Why is it Important to Address Disparities?

Addressing disparities in health and health care is important from an equity standpoint and for improving the nation’s overall health and economic prosperity. Racial and ethnic health disparities result in higher rates of illness and death across a wide range of health conditions. Research shows that these disparities are costly, resulting in excess medical care costs and lost productivity, as well as additional economic losses due to premature deaths. In addition, it is increasingly important to address health disparities as the population becomes more diverse. The U.S. Census Bureau projects that people of color will account for over half (52%) of the population by 2050, with the largest growth occurring among people who identify as Asian or Hispanic (Figure 2).

What is the Status of Disparities Today?

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 American Indian or Alaska Native (AIAN) people fare worse than their White counterparts across half or more of these measures including infant mortality, pregnancy-related mortality, diabetes mortality, and cancer mortality. Data for Hispanic people are more mixed relative to White people, which reflects that some subgroups, such as recent immigrants, generally fare better on health outcomes despite faring worse on many measures of health access and social and economic factors that influence health. Asian people on aggregate fare the same or better than White people on most measures of health, but there are some subgroups of the population that face significant disparities. Disaggregated data for Native Hawaiian or Pacific Islander (NHPI) people are limited, but available data show that they fare worse than White people across the majority of examined measures.

Disparities in health occur across the life course. Black infants were more than two times as likely to die as White infants (10.9 vs. 4.5 per 1,000 live births), and AIAN (9.1 per 1,000 live births) and NHPI (8.5 per 1,000 live births) infants were roughly twice as likely to die as White infants in 2022 (Figure 3). Hispanic infants (4.9 per 1,000 live births) also have a slightly higher mortality rate than White infants. NHPI (62.8 per 100,000), Black (39.9 per 100,000) and AIAN (32 per 100,000) women had the highest rates of pregnancy-related mortality between 2017 and 2019. In 2022, the age-adjusted mortality rates for diabetes for NHPI (49.9 per 100,000), AIAN (47.7 per 100,000), and Black (42.9 per 100,000) people were about twice as high as the rate for White people (21.3 per 100,000); Hispanic people also had a higher diabetes death rate compared to White people (28.3 per 100,000). AIAN and Black people have consistently had a shorter life expectancy than White people, with gaps widening during the COVID-19 pandemic. Based on provisional data for 2022, life expectancy for Black people was about five years shorter than White people (72.8 vs. 77.5), and nearly ten years shorter for AIAN people (67.9).

There also are ongoing disparities in health coverage and access to care. For example, nonelderly AIAN, Black, Hispanic, and NHPI people are more likely to be uninsured than their White counterparts despite large gains in coverage since the Affordable Care Act (Figure 4).

What are Recent Federal Actions to Address Disparities?

Early in his presidency, President Biden issued a series of executive orders focused on advancing health equity and directing federal agencies to develop Equity Action Plans. The Centers for Medicare and Medicaid (CMS) released an updated framework to advance health equity for people covered by Medicare, Medicaid, the Children’s Health Insurance Program (CHIP) and the Health Insurance Marketplaces. 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 and others ending; this included a temporary requirement of continuous enrollment in Medicaid which came to an end on March 31, 2023, with millions of Medicaid enrollees being disenrolled since. There has also been a growing focus by the Biden Administration on addressing maternal health disparities and increasing the availability of disaggregated racial and ethnic data to better identify and address disparities.

The Biden Administration also expanded the Child Tax Credit, which has contributed to reductions in child poverty and improvements in health and well-being. The Biden Administration temporarily increased the Child Tax Credit (CTC) as part of the American Rescue Plan in 2021. Research shows that this expansion was associated with significant reductions in child poverty rates for Black and Hispanic children and that it will likely lead to short- and long-term benefits for children’s health and well-being, particularly poor and younger children, stemming from improved outcomes associated with increased parental income. However, the expansion expired at the end of 2021, and poverty rates rebounded. A bipartisan bill that would provide a Child Tax Credit expansion primarily to children in low-income families is pending, although its future remains uncertain.

What are Key Issues Related to Health Disparities Looking Ahead?

Growing mental health needs, increasing climate-related health risks, policy changes, and the outcome of the 2024 presidential election will all have important implications for future efforts to address disparities. People of color face disproportionate barriers to accessing mental health care and there also have been large increases in drug overdose death rates for AIAN, Black, and Hispanic people compared to White people between 2019 and 2022, amplifying the focus on disparities in mental health. Growing climate-related health impacts may exacerbate disparities given their disproportionate impacts on marginalized communities. In addition, evolving federal and state policies related to reproductive health, Medicaid, and immigration impact disparities. For example, state variation in access to abortion in the wake of the Dobbs decision may exacerbate the already large racial disparities in maternal health. Coverage losses following the end of the Medicaid continuous enrollment provision may lead to widening disparities in coverage due to people of color being more likely to be covered by Medicaid. In addition, proposals to convert federal Medicaid funds to per capita caps or block grants could further exacerbate disparities in access to health coverage. On the other hand, take-up of the ACA Medicaid expansion in the remaining states that have not yet expanded as well as other Medicaid initiatives could narrow disparities. Evolving immigration policies may impact health care access for immigrants, who are more likely than U.S.-born people to be uninsured and to face challenges accessing health care. Finally, the 2024 presidential election will have far-reaching implications for these and other key health policy areas.

Among the 167 million people with employer-sponsored insurance in 2022, 3.4 million used at least one of the first 10 drugs identified for Medicare price negotiations, according to a new KFF analysis. Medicare is expected to release the negotiated drug prices, which will go into effect in 2026, by no later than September 1, 2024.

The most used drug for people with employer-sponsored health insurance was Jardiance, a drug used to treat diabetes and heart failure, which was taken by more than 911,000 enrollees.In the future, the Medicare program will negotiate prices for additional drugs, which millions more people with employer coverage could also be taking. As the policy currently stands, lowering drug prices in Medicare has no direct effect on private insurance plans, and the indirect effects are still unclear. Some argue lower negotiated prices in Medicare will result in higher prices in private insurance plans, while others suggest Medicare prices could serve as a benchmark and lead to savings.The full analysis and other data on health costs are available on the Peterson-KFF Health System Tracker, an online information hub dedicated to monitoring and assessing the performance of the U.S. health system.

Among the 167 million people with employer-sponsored insurance in 2022, 3.4 million used at least one of the first 10 drugs identified for Medicare price negotiations, according to a new analysis. The most used drug for people with employer-sponsored health insurance was Jardiance, a drug used to treat diabetes and heart failure, which was taken by more than 911,000 enrollees.

The analysis uses the Merative MarketScan 2022 commercial claims to estimate the number of enrollees in the employer-sponsored insurance market who use one or more of the ten drugs selected for Medicare Part D price negotiations.

The full analysis and other data on health costs are available on the Peterson-KFF Health System Tracker, an online information hub dedicated to monitoring and assessing the performance of the U.S. health system.