What is Medicaid Estate Recovery?

Authors: Alice Burns, Maiss Mohamed, and Molly O’Malley Watts
Published: Sep 13, 2024

Issue Brief

Established to provide another source of Medicaid funding and promote program integrity, the recovery of certain Medicaid costs after an enrollee dies (estate recovery) has been criticized for several reasons, including that it falls primarily on individuals with limited incomes, raises little revenue, and is applied very unevenly across the states. Family members may be unaware of the policy at the time of enrollment and only learn that the family home may be repossessed after the death of a loved one. Such criticisms have led to proposals (Box 1) that would modify or reduce the practice of estate recovery by Democrats, Republicans, and the Medicaid and CHIP Payment and Access Commission (MACPAC).

Estate recovery is a process that primarily affects older Medicaid enrollees who use long-term services and supports (LTSS). To be eligible for Medicaid coverage of LTSS, people must usually demonstrate having limited incomes (typically below $3,000 per month in 2024 for an individual) and financial resources (often below $2,000 for an individual), but some assets, including their home, are excluded from the calculation of financial resources. Many people only qualify after spending their assets on the out-of-pocket costs for LTSS, which may easily exceed $100,000 per year. The 1993 Omnibus Budget Reconciliation Act required state Medicaid programs to recover the costs of certain Medicaid benefits through a process called estate recovery. Specifically, states are required to recover the costs of LTSS and related hospital and prescription drug services for Medicaid enrollees ages 55 and older; and have the option to recover the costs for other services and populations. States may not take the family home if it is occupied by a spouse, child under the age of 21, child who is blind or has a disability, or a sibling with an equity interest in the home, but they may place a lien on real property for individuals who are alive but permanently institutionalized.

This issue brief sheds light on states’ policies towards estate recovery, drawing from KFF’s Survey of Medicaid Financial Eligibility & Enrollment Policies for Seniors & People with Disabilities which was conducted in March 2024 by KFF and Watts Health Policy Consulting. Overall, 49 states and the District of Columbia (hereafter referred to as a state) responded to the survey, though response rates to specific questions varied (Florida was the only state that did not respond).

Key takeaways include:

  • Over half of states reported using estate recovery for the costs of populations and services for which federal law does not require estate recovery, with 28 states reporting estate recovery for some individuals under age 55 and 32 states reporting estate recovery for the costs of all Medicaid benefits for individuals ages 55 and older, and an additional 5 states reporting estate recovery for some optional benefits (Figure 1).
  • Over half of states (30) reported using estate recovery to recoup the costs of premiums paid to managed care organizations on behalf of Medicaid enrollees.
  • Federal law requires states to establish procedures for waiving estate recovery when recovery would cause hardships, but there are no specific procedures required. States reported waiving estate recovery under the following conditions: when the individual meets state-defined hardship requirements (49 states), if the estate is the sole income-producing asset of survivors (35 states), and when the home is of modest value (15 states). (The definition of “modest value” varies by state and may reflect dollar values, market value relative to local property values, or other measures.)

State Policies Surrounding Medicaid Estate Recovery

Why was estate recovery established and why is it a source of concern for policymakers?

Estate recovery was established as a tool to promote program integrity and ensure that people contribute to the costs of their health care. People must generally have very limited income and assets to qualify for Medicaid, but the value of the home is not counted towards the initial eligibility determination. Most eligibility pathways for people who use LTSS require people to have incomes under $3,000 each month and only $2,000 of savings for an individual or $3,000 for a couple. Despite stringent financial eligibility levels, some people with moderate incomes during their working years may become eligible for Medicaid during their retirement years if they need LTSS. Most Medicare beneficiaries live on fixed incomes, with half living on incomes below $36,000 per year and half having savings below $103,800 in 2023. The high costs of LTSS, easily exceeding $100,000 per year, may cause people to qualify for Medicaid after exhausting their savings even if they live in a home of some value. Proponents of estate recovery have indicated that it ensures Medicaid funding is used for the most needy, prevents people from relying on Medicaid instead of using their personal resources to pay for LTSS, and allows states to spend more on other Medicaid expenses. States are also required to establish a cost-effectiveness threshold, which determines whether the value of the estate is cost effective relative to the administrative costs of recovery; and is intended to preclude states from pursuing small estates.

Estate recovery is a source of concern to some policymakers because it disproportionately affects low-income families, creates high administrative costs relative to the revenue generated, and may deter eligible people from applying for Medicaid. A 2021 report to Congress by MACPAC summarizes those concerns, which include:

  • Medicaid enrollees are generally low-income and estate recovery may perpetuate intergenerational poverty.
  • Individuals with greater awareness of estate recovery and resources are often able to leverage legal mechanisms allowing them to bypass Medicaid estate recovery but preserve Medicaid eligibility. Individuals with fewer resources or only a family home often don’t have the income to hire an attorney to help implement such strategies.
  • Estate recovery results in administrative costs to states that could exceed the value of the collections.
  • Estate recovery raises relatively few revenues: $733 million in 2019, which offset 0.1% of the over $600 billion that Medicaid spent in 2019. Even in states with the highest relative recovery revenues, those revenues offset less than 1.0% of the states’ Medicaid spending.
  • Estate recovery may deter some people from applying to Medicaid who are eligible even if they would not be subject to estate recovery. For example, Medicare beneficiaries who are only eligible for Medicaid coverage of Medicare premiums and cost sharing would not be subject to estate recovery, but limited understanding of the program may prevent them from applying.

States’ use of estate recovery varies considerably, with a small number of states accounting for most of the collections. Five states (Massachusetts, New York, Pennsylvania, Ohio, and Wisconsin) with the largest estate recoveries accounted for nearly 40% of all collections in FY 2019, the most recent year for which data are publicly available about all states’ collections. The same report showed survey data for 10 states, with those states reporting varying numbers of estates pursued, estates recovered, and the amounts recovered per state. Alaska pursued the fewest estates of the responding states (under 500 per year). At the other end of the spectrum were Iowa (pursuing over 15,000 estates each year) and New York (pursuing around 30,000 per year). The average amount recovered per estate ranged from around $5,000 or less in Missouri and Wisconsin to $30,000 per year or more in Alaska and Georgia.

Box 1: What are the current policy proposals to eliminate or reduce states’ use of estate recovery?

Democrats, Republicans, and the Medicaid and CHIP Payment and Access Commission (MACPAC) have all proposed changes to the estate recovery program. Such proposals include the following:

H.R. 7573 – Stop Unfair Medicaid Recoveries Act: H.R. 7573 would eliminate estate recovery programs entirely.

H.R. 8094 – To amend title XIX of the Social Security Act to modify certain asset recovery rules: H.R. 8094 would prohibit states from conducting estate recovery in cases where the family home is transferred to another person who is eligible for Medicaid or has income below 138% of the federal poverty level.

MACPAC – Medicaid Estate Recovery: Improving Policy and Promoting Equity: MACPAC recommended three legislative changes to Title XIX of the Social Security Act. Those changes include making estate recovery optional for states, allowing states that provide long-term services and supports (LTSS) through managed care plans to recover the costs of services used rather than the costs of the premiums the state paid, and directing the Department of Health and Human Services to establish minimum standards for hardship waivers. Minimum standards for hardship waivers would prevent states from pursuing recovery for assets that are the sole income-producing asset of survivors, homes of modest value, and estates valued under a certain threshold.

When does Medicaid estate recovery apply?

States must conduct estate recovery for some services and enrollees but may choose to apply estate recovery in additional circumstances, which contributes to the variation in how many estates are pursued and the amount states are recovering. Estate recovery is required for enrollees ages 55 and older who use LTSS, including enrollees eligible for Medicaid through the Affordable Care Act’s Medicaid expansion. For people ages 55 and older who use LTSS, states must recover the costs of nursing facility services, home- and community-based services (HCBS), and related hospital and prescription drug services (defined as those services provided during a nursing facility stay or while receiving HCBS). States may elect to recover the costs of all Medicaid-covered services. They may also elect to conduct estate recovery for individuals who are under the age of 55 if they have been determined to be permanently institutionalized.

Most states apply estate recovery beyond the federally-required circumstances: 37 states apply estate recovery to services for which it is optional and 28 determine permanent institutional status for individuals under age 55 (Appendix Table). For individuals under age 55, estate recovery most frequently applies to people in nursing facilities and in intermediate care facilities for individuals with intellectual disabilities. Among the states applying estate recovery for optional services, 5 states reported applying it to some optional services and 32 states reported applying it to all Medicaid-covered services, but several states noted that recovery could only occur if LTSS services were also rendered.

For people enrolled in managed care, estate recovery is based on the premium payments states make rather than on the services people use, which means some people are subject to estate recovery despite not using applicable services. When states provide benefits through managed care, states are required to seek recovery for the premiums paid if the enrollee would have been subject to estate recovery under a fee-for-service system. If the state recovers the costs of all Medicaid services, estate recovery must apply to the full Medicaid premium. If the state only recovers the costs of a subset of benefits, estate recovery must apply to the portion of the premium attributable to those benefits.

Over half of states apply estate recovery to the costs of managed care premiums. Among the 27 states with capitated managed care that includes LTSS, 11 states pursue estate recovery for the entire premium for people who use LTSS, and 10 states recover the entire premium for everyone enrolled in the plan. Fewer states (5) pursue only the premium attributable to LTSS used. Pennsylvania reported a unique approach, taking the smaller of the premium or the amount of claim spending on LTSS and related services each month. There is no recovery for months without LTSS spending. Among states with stand-alone LTSS managed care plans, 8 states recover the entire premium but only for people who use LTSS and 5 states recover the entire premium for everyone enrolled in the plan. Indiana’s managed LTSS program began in July 2024 and the state will pursue recovery for the entire capitation and any other amounts paid.

When do states waive estate recovery requirements?

Federal law requires states to waive estate recovery requirements when they impose “undue hardships,” but does not specify what constitutes a hardship, leading to significant variation in when states waive estate recovery. Guidance from the Centers for Medicare and Medicaid Services (CMS) provides three examples of potential hardships which include:

  • Estate is sole income-producing asset of survivors such as a family farm;
  • Home is of modest value, defined as roughly half the average home value in the county; or
  • Other compelling circumstances.

The variable approach to hardship waivers has raised equity concerns because the ease with which they are granted varies across states. In some states, securing a hardship waiver may require an attorney, and the families with the fewest resources are least likely to be able to afford such services. In the 10 states included in MACPAC’s survey, the percentage of hardship applications granted in 2019 ranged from 29% in New York to 95% in Iowa.

In KFF’s survey, nearly all states (49) reported adopting at least one of the three potential hardship exemptions in CMS guidance, with the most common being to waiver the estate if it was the sole income-producing asset of survivors (Appendix Table). Specifically, 35 states reported using the income-producing asset criteria, although Arizona also required that the heir must own a business located on real property that is part of the estate and Georgia limits the hardship to farms with annual income of $25,000 or less. Washington does not waive recovery, only delays, when hardship exists. Criteria for delaying recovery include estates that are the sole income-producing property of survivors, when recovery would deprive the heir of shelter and they cannot afford alternative shelter, and when the survivor is a state-registered domestic partner.

Only 15 states reported waiving estate recovery for homes of modest value but the definition of “modest” was unclear in many cases. Only four states reported dollar thresholds to define “modest,” including: West Virginia $50,000 or less; Texas less than $10,000; Mississippi and North Dakota, less than $5,000. Seven states (California, Louisiana, Michigan, New Mexico, New York, South Carolina, and Virginia) defined modest value as one whose market value is 50% or less than the average or median price of homes in a county. Other states used more varied approaches including the following.

  • Two states (Arkansas and Maine) waive estate recovery when it is not cost effective but did not provide another definition for homes of modest value.
  • In some cases, states reported exempting portions of the home for all descendants. For example, Louisiana exempts either the first $15,000 or half of the median value of a home within the parish from the homestead and South Carolina exempts 50% or less of the average home price within a county from the home’s value. Such exemptions would also preclude estate recovery for homes under those exemption levels.
  • Hawaii and Vermont did not describe general definitions of modest value, but both have exemptions that reflect the value of the home in circumstances when heirs cared for the descendent prior to their death.

Most states (40) described other circumstances that would trigger a hardship exemption. Many of those circumstances related to federal policies such as exempting homes that were occupied by surviving minors and when the estate is the sole income-producing asset of a family business. The most common other exemptions included those for heirs who had provided care in the home for enrollees prior to their death and exemptions that considered the income and resources of the heir. Idaho, Ohio, and Wisconsin waive estate recovery when it would result in the survivor becoming eligible for Medicaid or other public assistance.

This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.

Appendix

State Policies Surrounding Medicaid Estate Recovery
Poll Finding

KFF Health Tracking Poll September 2024: Support for Reducing Prescription Drug Prices Remains High, Even As Awareness of IRA Provisions Lags

Published: Sep 13, 2024

Findings

Key Takeaways

  • The Biden administration recently announced a projected reduction of out-of-pocket costs for seniors as part of the Medicare drug negotiations, yet large majorities of voters have not heard about these savings, with almost half (45%) who say they have heard “nothing at all,” while a quarter have heard “a lot” or “some.” Larger shares of older voters, those ages 65 and older, say they’ve heard “a lot” or “some” about these savings, with a third (32%) who say so, compared to two in ten (22%) of those under age 65. Most voters continue to be unaware of the Medicare drug pricing provisions in the Inflation Reduction Act, or IRA, that was passed by Congress and signed into law by President Biden more than two years ago, though awareness of some of the provisions is higher among older voters – the group most impacted by the provisions.
  • While awareness of Medicare drug negotiations continues to lag, KFF finds widespread support for this policy. Majorities of voters support authorizing the federal government to negotiate drug prices, while one in seven (14%) oppose. This provision is supported by nine in ten Democrats and independent voters (92% and 89%, respectively) and three-quarters of Republican voters (77%). It is also supported by 88% of older adults, those ages 65 and over, including majorities across partisans.
  • Voters’ views of who is responsible for the legislation as well as the expected savings from the negotiations are largely partisan. Overall, a slight majority (55%) of voters ages 65 and older think Medicare negotiating will lower their own prescription drug costs, but the share who expect to see savings increases to nearly two-thirds (64%) of older Democratic and Democratic-leaning voters. On the other hand, about half (52%) of older Republican and Republican-leaning voters say they don’t expect the negotiations to have any impact on their drug costs. In addition, voters are also more likely to give their own party leaders credit for passing legislation aimed at lowering the price of prescription drugs for people on Medicare, though Republican voters are less enthusiastic about their party leaders’ roles. Larger shares of Democratic voters than Republican voters say President Biden, Vice President Harris, and the Democrats in Congress played a “major” or “minor” role in passing legislation for lowering drug prices for people on Medicare, while Republican voters are more likely than Democratic voters to say the same about Republicans in Congress. A similar share of Republican voters give former President Trump credit for passing the legislation as give credit to President Biden.
  • Vice President Harris’ campaign has announced proposals for expanding some of the IRA provisions beyond those with Medicare coverage. Majorities of voters, overall and across partisanship, support these proposed provisions, though smaller shares of Republicans are on board. Three-quarters (77%) of voters support the proposal to expand the $35 cap on out-of-pocket costs for insulin beyond those with Medicare, including majorities of Democratic voters (84%), independent voters (79%), and Republican voters (70%). Seven in ten (69%) voters support the proposal to expand the $2,000 annual limit on out-of-pocket prescription drug costs beyond those with Medicare, including 83% of Democrats, 70% of independents, and 58% of Republicans.

Most Voters Continue to Be Unaware of IRA Provisions to Reduce Prescription Drug Prices

Most voters continue to be unaware of the Medicare drug pricing provisions in the Inflation Reduction Act, or IRA, that was passed by Congress and signed into law by President Biden more than two years ago, though awareness of some of the provisions is higher among older voters – the group most impacted by the provisions.

Four in ten voters are now aware there is a federal law in place that caps the cost of insulin for people with Medicare at $35 per month, while another third (35%) are aware of the law that requires the federal government to negotiate the price of some prescription drugs for people with Medicare. A quarter of voters (27%) are aware of the federal law that places a limit on out-of-pocket prescription drug costs for people with Medicare, and one in eight (12%) are aware that there is a law in place that penalizes drug companies for increasing prices faster than the rate of inflation for people with Medicare.

Larger shares of voters ages 65 and older are aware of some of these drug pricing provisions of the IRA. For example, six in ten (61%) voters ages 65 and older are aware of the law that caps the cost of insulin for people with Medicare and about a third (34%) of older voters are aware of the provision that places an out-of-pocket limit on prescription drug costs. Similar shares of older voters compared to younger voters are aware of the provision that requires the government to negotiate the price of some prescription drugs and that penalizes drug companies for increasing prices faster than the rate of inflation for people with Medicare.

Voters Ages 65 and Older Are More Likely to Know That Federal Law Caps the Cost of Insulin for People With Medicare

While awareness of the Medicare drug pricing provisions increased, especially among older voters, from November 2023 to May 2024, awareness has remained steady over the past several months.

Voters Remain Unaware of Impact of Medicare Drug Negotiations, Older Adults Are Unclear if It Will Reduce Their Prescription Costs

The Biden administration recently announced that the lower prices negotiated for some prescription drugs would have saved the federal government $6 billion in 2023 with an estimated $1.5 billion reduction in out-of-pocket costs for older adults when lower prices take effect in 2026. Large majorities of voters have not heard about these projected savings, with almost half (45%) who say they have heard “nothing at all” about the negotiations, while a quarter (25%) have heard “a lot” or “some.” Another three in ten (30%) have heard “a little” about the negotiations.

Larger shares of older voters, those ages 65 and over, say they’ve heard “a lot” or “some” about these savings, with a third (32%) who say so, compared to one in five (22%) of those under age 65.

Similarly, larger shares of Democratic and independent voters have heard about the projected savings, with about a third (34%) of Democrats and a quarter (27%) of independents who have heard at least “some,” compared to about one in six (16%) Republican voters.

Very Few Voters Have Heard of Savings From Drug Price Negotiations, With Larger Shares of Democrats, Older Adults Who Have

Overall, almost nine in ten (85%) voters support authorizing the federal government to negotiate drug prices, while one in seven (14%) oppose. This provision is supported by 92% of Democratic voters, 89% of independent voters, and 77% of Republican voters. While support for the law is lower among Republicans, most Republican voters support it.

Majorities Across Partisanship Support Portion of the Inflation Reduction Act That Authorizes the Federal Government to Negotiate the Price of Prescription Medication

In addition to supporting the federal government negotiations, a slight majority (55%) of voters ages 65 and older think Medicare negotiations will lower their own prescription drug costs, while four in ten (43%) older voters think negotiating won’t have any impact on their prescription drug costs. Expectations that Medicare negotiations won’t lower drug costs seem to be partisan, with two-thirds (64%) of older Democratic and Democratic-leaning voters thinking it will lower their drug costs, while about half (52%) of older Republican and Republican-leaning voters thinking it won’t have any impact on their drug costs.

Over Half of Older Voters Say Authorizing the Government to Negotiate With Pharmaceutical Companies Will Lower Their Prescription Drug Costs

The Inflation Reduction Act was enacted under President Biden without any Republican support in Congress. Six in ten voters say President Biden had a “major” or “minor” role in passing the recent law aimed at lowering drug prices for people on Medicare, including four in ten (37%) who say he had a “major” role. Similar shares of voters say the same about Democrats in Congress, with six in ten (60%) who say they played a “major” or “minor” role. Another four in ten (42%) voters say Vice President Harris played a role. Credit for the recent law could be key as she picks up these issues on her own platform for president.

Almost half (46%) of voters think that Republicans in Congress played a role in passing the recent law, with a small share saying they played a “major” role (14%). About a quarter of voters credit former President Trump for the passage of the law aimed at lowering drug prices for those on Medicare, with a quarter (28%) who say he played a “major” or “minor” role, while 41% say he had no role in passing the recent law. Between a quarter and a third of voters aren’t sure how big of a role these groups played in the health care legislation.

Large Shares of Voters See Biden, Democrats in Congress as Having a Role in Passing Law Aimed at Lowering Drug Prices for People on Medicare

Partisans are more likely to give their own party leaders credit for passing legislation aimed at lowering the price of prescription drugs for people on Medicare, though Republican voters are less enthusiastic about their party leaders’ roles. Larger shares of Democratic voters than Republican voters say President Biden, Vice President Harris, and the Democrats in Congress played a “major” or “minor” role in passing legislation for lowering drug prices for people on Medicare. While Republican voters are more likely than Democratic voters to say former President Trump and the Republicans in Congress played a role, only about a quarter of Republican voters said either (23% and 24%, respectively) played a “major role.” In fact, a similar share of Republican voters give former President Trump credit for passing the legislation as give credit to President Biden.

Overall, eight in ten (81%) Democratic voters say Biden played a role in passing the legislation, four in ten (39%) of Republican voters say the same about Trump. Another eight in ten Democratic voters say Democrats in Congress played a “major” or “minor” role in passing the legislation, while over half (54%) of Republicans say the same about Republicans in Congress.

Democratic Voters Are More Likely to Say Democrats Had a Role in Passing Drug Pricing Law Than Republican Voters Are About Republicans in Congress

Voters Support Expanding on IRA Provisions

Vice President Harris’ campaign has announced that, if elected, her administration hopes to expand some of the drug pricing legislation beyond just those with Medicare, allowing others to benefit from the cap on monthly out-of-pocket costs for those with insulin and the annual limit on out-of-pocket prescription drug costs. Former President Trump has remained silent on some of these issues, though his administration implemented a program under which Medicare plans voluntarily lowered insulin copays to $35 per month. Majorities of voters, overall and across partisanship, support these proposed provisions, though smaller shares of Republicans are on board. Three-quarters (77%) of voters support the proposal to expand the $35 cap on out-of-pocket costs for insulin beyond those with Medicare, including majorities of Democratic voters (84%), independent voters (79%), and Republican voters (70%). Seven in ten (69%) voters support the proposal to expand the $2,000 annual limit on out-of-pocket prescription drug costs beyond those with Medicare, including 83% of Democrats, 70% of independents, and 58% of Republicans.

Majorities of Voters Across Partisanship Support Proposals to Expand IRA Provisions Beyond Those With Medicare

Methodology

This KFF Health Tracking Poll/Health Misinformation Tracking Poll was designed and analyzed by public opinion researchers at KFF. The survey was conducted August 26-September 4, 2024, online and by telephone among a nationally representative sample of 1,312 U.S. adults in English (1,244) and in Spanish (68). The sample includes 1,028 adults (n=53 in Spanish) reached through the SSRS Opinion Panel either online (n=1,018) or over the phone (n=18). The SSRS Opinion Panel is a nationally representative probability-based panel where panel members are recruited randomly in one of two ways: (a) Through invitations mailed to respondents randomly sampled from an Address-Based Sample (ABS) provided by Marketing Systems Groups (MSG) through the U.S. Postal Service’s Computerized Delivery Sequence (CDS); (b) from a dual-frame random digit dial (RDD) sample provided by MSG. For the online panel component, invitations were sent to panel members by email followed by up to three reminder emails.

Another 284 (n=15 in Spanish) interviews were conducted from a random digit dial telephone sample of prepaid cell phone numbers obtained through MSG. Phone numbers used for the prepaid cell phone component were randomly generated from a cell phone sampling frame with disproportionate stratification aimed at reaching Hispanic and non-Hispanic Black respondents. Stratification was based on incidence of the race/ethnicity groups within each frame.

Respondents in the phone samples received a $15 incentive via a check received by mail, and web respondents received a $5 electronic gift card incentive (some harder-to-reach groups received a $10 electronic gift card). In order to ensure data quality, cases were removed if they failed two or more quality checks: (1) attention check questions in the online version of the questionnaire, (2) had over 30% item non-response, or (3) had a length less than one quarter of the mean length by mode. Based on this criterion, no cases were removed.

The combined cell phone and panel samples were weighted to match the sample’s demographics to the national U.S. adult population using data from the Census Bureau’s 2022 Current Population Survey (CPS), September 2021 Volunteering and Civic Life Supplement data from the CPS, and the 2024 KFF Benchmarking Survey with ABS and prepaid cell phone samples. The demographic variables included in weighting for the general population sample are gender, age, education, race/ethnicity, region, civic engagement, frequency of internet use, political party identification by race/ethnicity, and education. The sample of registered voters was weighted separately to match the U.S. registered voter population using the same parameters above derived from the 2024 KFF Benchmarking Survey. Both weights account for differences in the probability of selection for each sample type (prepaid cell phone and panel). This includes adjustment for the sample design and geographic stratification of the cell phone sample, within household probability of selection, and the design of the panel-recruitment procedure.

The margin of sampling error including the design effect for the full sample is plus or minus 4 percentage points and is plus or minus 4 percentage points for registered voters. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. KFF public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

GroupN (unweighted)M.O.S.E.
Total1,312± 4 percentage points
Total registered voters1,084± 4 percentage points
Democratic registered voters377± 7 percentage points
Independent registered voters335± 7 percentage points
Republican registered voters332± 7 percentage points
News Release

Allowing Medicare to Negotiate Drug Prices Remains Broadly Popular Among Voters, Though Most Are Unaware of the Law and Its Projected Savings

Published: Sep 13, 2024

Allowing Medicare to negotiate drug prices on behalf of older Americans remains broadly popular across partisans, though many voters are unaware of the new law and the billions of dollars it is expected to save in 2026, a new KFF Health Tracking Poll finds.A large majority (85%) of voters say they support allowing the federal government to negotiate the price of some prescription drugs for people with Medicare. This includes at least three quarters of Republican (77%), independent (89%) and Democratic (92%) voters.

The Inflation Reduction Act of 2022 authorized such negotiations, and the Biden administration recently completed the first round of negotiations on 10 drugs, resulting in an estimated $1.5 billion in lower out-of-pocket costs for Medicare beneficiaries in 2026.The poll shows that nearly two thirds (65%) of voters are unaware or unsure that there is a law allowing Medicare drug-price negotiations. The share (62%) is similar among older voters (ages 65+) who are generally covered by Medicare.A large majority (75%) of voters also say they have not heard much about the savings resulting from the first round of price negotiations, including almost half (45%) who say they have heard “nothing at all.” One in four say they have heard “a lot” (4%) or “some” (21%) about the savings. Older voters are somewhat more likely to have heard either “a lot” (7%) or “some” (26%) about the savings.Other findings include:

  • Most (55%) voters ages 65 and older expect that Medicare drug-price negotiations will lower their own prescription costs, with 43% saying it will not have any impact. Older Democratic and Democratic-leaning independent voters are more likely than older Republicans and Republican-leaning independent voters to expect savings (64% vs. 45%). 
  • Minorities of voters are aware of other Medicare drug-price provisions in the Inflation Reduction Act, including the $35 cap on out-of-pocket costs for insulin (40%) and limiting annual out-of-pocket prescription drug costs (27%). Older voters are more likely than younger voters to know about both of these provisions. 
  • While the Inflation Reduction Act was enacted under President Biden without any Republican support in Congress, partisans are divided on who deserves credit for the law’s Medicare drug price provisions. Substantial shares of GOP voters say that Republicans in Congress (54%) and President Trump (39%) had either a “major” or “minor” role in enacting those provisions. Larger shares of Democratic voters say that Democrats in Congress (80%), President Biden (81%), and Vice President Harris (69%) had a role. 
  • Most voters say they would be in favor of extending Medicare’s $35 cap on monthly insulin costs (77%) and the $2,000 limit on out-of-pocket drug spending (69%) beyond people with Medicare, as Vice President Harris has proposed. Majorities of Democrats, Republicans and independent voters support extending each of the two provisions. 

Designed and analyzed by public opinion researchers at KFF, the survey was conducted August 26-Sept. 4, 2024, online and by telephone among a nationally representative sample of 1,312 U.S. adults, including 1,084 registered voters, in English and in Spanish. The margin of sampling error is plus or minus 4 percentage points for the full sample and among registered voters. For results based on other subgroups, the margin of sampling error may be higher.

VOLUME 6

Vaccine Misinformation Spreads as Children Head Back to School

This is Irving Washington and Hagere Yilma. We direct KFF’s Health Misinformation and Trust Initiative and on behalf of all of our colleagues across KFF who work on misinformation and trust we are pleased to bring you this edition of our bi-weekly Monitor.


Summary

This edition highlights vaccine hesitancy and misinformation around MMR (measles, mumps, and rubella) vaccines as children return to school and measles cases resurge in parts of the U.S. We also examine emerging narratives around COVID-19 vaccine misinformation following the FDA approval of COVID-19 boosters and false claims linking mpox to the vaccines. Additionally, a review of recent research explores strategies to combat MMR vaccine hesitancy, and we discuss the growing use of AI in academic papers.


Recent Developments

Addressing Vaccine Hesitancy Around MMR and Childhood Immunizations as Measles Resurges

A child receives a medical shot in their arm from a doctor while their parent watches. All figures are masked.
FG Trade / Getty Images

As students return to school, state health departments have urged families to make sure their children are up to date on recommended vaccinations. Without these immunizations, children risk contracting preventable diseases such as measles, which has seen a resurgence in several states. However, a KFF analysis highlights that routine immunization rates for kindergarteners have not returned to pre-pandemic levels, in part due to vaccine hesitancy fueled by misinformation and partisan politics. Persistent false claims include the debunked link between vaccines and autism, which has falsely led some to believe that vaccines are more harmful than the diseases they prevent. These claims downplay the severity of measles and dismiss it as rare or harmless. They also commonly suggest delaying or skipping vaccines for children to avoid unfounded risks, despite the CDC’s evidence-based schedule. These misleading narratives erode public confidence in vaccines, fueling larger and faster outbreaks.

Polling Insights:

While a large share of the public correctly views the false claim that “the measles vaccine is more dangerous than the disease itself” as definitely false, KFF polling from February 2024 finds that most adults express some uncertainty when it comes to this claim. More than half of U.S. adults say this claim is either “probably false” (41%) or “probably true” (16%). Few (3%) believe it is “definitely true,” while about four in ten (38%) are confident that the claim is “definitely false.” (Figure 1). Additionally, there are partisan divides when it comes to definitively identifying the claim as false, with Republicans being less likely to do so. Notably, a quarter of parents of children under the age of 18 say that the false claim that the measles vaccine is more dangerous than the measles infection is definitely or probably true.

While Most Adults Say It Is False That Getting the Measles Vaccine Is More Dangerous Than a Measles Infection, Fewer Parents and Republicans Are Certain 

The 2023 KFF Health Misinformation Tracking Poll Pilot found similar results for the claim that “The measles, mumps, rubella vaccines, also known as the MMR vaccines, have been proven to cause autism in children.” While most Americans do not believe the statement, the bulk of the public is uncertain, with 43% saying it is “probably false” and 20% saying it is “probably true.” About a third of the public (32%) identify the claim as being “definitely false.” This highlights the ongoing confusion and hesitancy many people face when navigating vaccine misinformation. Partisan differences also emerged on this question with Republicans (33%) being more likely than independents (18%) and Democrats (15%) to say that this statement is definitely or probably true.

Large shares of parents also express uncertainty about whether MMR vaccines have been proven to cause autism in children with a quarter of parents (25%) saying that claim is “probably true” while four in ten parents say it is “probably false.” (Figure 2).

Most Adults - Including Most Parents - Are Uncertain Whether the False Claim that MMR Vaccines Have Been Proven To Cause Autism in Children is Definitely True Or Definitely False

To combat misinformation about the MMR vaccine, health professionals and media outlets can address and debunk common misconceptions like the narratives listed above. Health media resources like The Harvard Kennedy School’s The Journalist’s Resource provide guidance for reporters covering MMR vaccination rates and hesitancy. These resources emphasize the importance of clearly distinguishing between vaccine hesitancy and anti-vaccine beliefs, highlighting the high vaccination rates among U.S. students, and exploring reasons for delayed or incomplete vaccinations.


Emerging Misinformation Narratives

Reemergence of COVID-19 Vaccine Misinformation Following FDA Booster Approval

A vial of coronavirus vaccine on a vaccination record card with a syringe on the side.
Thanasis / Getty Images

In addition to the required back-to-school vaccines for children, health officials are recommending that everyone 6 months of age and older receive the updated COVID-19 vaccines this fall. However, misinformation in online conversations indicate that vaccine hesitancy and misinformation may hinder uptake for some. In the days after the FDA approved the booster vaccines, more than half of posts, articles, comments on articles and videos mentioning the COVID-19 vaccines included terms associated with false claims. Many social media posts recycled debunked narratives that emerged during the initial approval of the COVID-19 vaccines, such as claims that the vaccines contain the SV40 virus, cause “turbo cancer,” were designed to only profit the government and pharmaceutical companies or were approved too quickly to be safe.

Misinformation has also emerged around specific vaccine types. Online discussions leading up to the FDA’s approval reflected some people’s frustration over the delayed approval of Novavax’s non-mRNA COVID-19 vaccine. Some falsely claimed the Novavax COVID-19 vaccine is “over 40% more effective” than other vaccines and that the FDA is “intentionally withholding” it, deepening distrust in the FDA approval process and mRNA vaccines. One post that made this claim had approximately 89,700 views, 3,000 likes, 1,000 reposts, and 50 comments as of August 27th. At the same time, there are also examples of support for the updated boosters. One doctor said, “I’ll get the updated COVID vaccine as soon as it’s available, and I’ll urge my patients to do the same. Getting COVID over and over again is not a great plan.” a post garnering 85,300 views, 3,300 likes, 620 reposts, and 470 comments by August 27th. These examples illustrate that both misinformation and accurate information can circulate on social media and receive comparable levels of engagement.

Recent political statements have further complicated the vaccine discussion. Presidential candidate Donald Trump has pledged to defund schools that mandate COVID-19 vaccines, a move that could exacerbate vaccine hesitancy and negatively impact public health efforts. While Trump previously supported the development and promotion of vaccines, his current stance has raised concerns among health experts about the potential for increased vaccine misinformation and declining vaccination rates. Trump’s rhetoric against vaccine mandates could undermine public trust in vaccination programs and jeopardize progress made in controlling preventable diseases.

A patient displays their hands and forearms which have red spots and blisters.
Marina Demidiuk / Getty Images

Misinformation about the public health response to mpox (formerly known as monkeypox) appeared online after the World Health Organization (WHO) declared the disease a public health emergency. Most of the misinformation falsely claims that the WHO had ordered nations to prepare for “mega lockdowns” because of mpox. Similar misinformation has fueled fears of school closures, despite experts clarifying that mpox spreads primarily through close skin contact, making such drastic measures highly unlikely. Some have also falsely claimed that the WHO has reversed its decision, often using an old video from May 2023 showing the WHO Director General announcing the end of a previous mpox emergency.

Simultaneously, the WHO’s declaration sparked a wave of claims linking mpox to COVID-19 vaccines. Several popular posts in English and Spanish falsely claimed that mpox is a side effect of mRNA COVID-19 vaccines, with some recycling the debunked myth that mpox is an autoimmune skin disease triggered by vaccination. An X post in Spanish shared on August 15 read, “No, there was never any COVID, but rather pneumonia. And no, there is no monkeypox, or bird flu, or anything like that. What there are the after-effects of the ‘vaccines.’” In just 12 days, the post had received approximately 275,200 views, 4,000 likes, 2,500 reposts, and 170 comments.


Research Updates

Research Review Highlights Strategies to Combat MMR Vaccine Hesitancy

A Japanese child sits in her mother's lap while receiving a vaccine from a senior female Caucasian pediatrician.
FluxFactory / Getty Images

A review published earlier this year in Vaccines explored why some people are hesitant to receive the MMR vaccine by examining the role of misinformation and the changing landscape of online communication. The review explains how communities and the way vaccines are presented can influence people’s attitudes. Based on these factors, the authors shared evidence-based strategies to address hesitancy, including improving communication between health care providers and patients, developing personalized approaches, and implementing effective public information campaigns.

Source: Higgins, D. M., & O’Leary, S. T. (2024). A World without Measles and Rubella: Addressing the Challenge of Vaccine Hesitancy. Vaccines, 12(6), 694.


AI and Emerging Technologies

Undisclosed Use of AI in Academic Papers

A pair of robot hands examines an invoice with a magnifying glass.
AndreyPopov / Getty Images

The rise of AI-generated fake scientific papers has the potential to erode public trust in science and contribute to the spread of misinformation, particularly in areas such as health and environmental policy. Often disseminated through platforms like Google Scholar, these papers go undetected by readers and can influence evidence-based decision-making. A recent analysis found that about two-thirds of the papers examined were created, at least in part, using artificial intelligence (AI) without proper disclosure, making it difficult to identify and correct the misinformation. As these fraudulent studies circulate online, they risk distorting public understanding and undermining the integrity of scientific research.

About The Health Information and Trust Initiative: the Health Information and Trust Initiative is a KFF program aimed at tracking health misinformation in the U.S., analyzing its impact on the American people, and mobilizing media to address the problem. Our goal is to be of service to everyone working on health misinformation, strengthen efforts to counter misinformation, and build trust. 


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The Monitor is a report from KFF’s Health Information and Trust initiative that focuses on recent developments in health information. It’s free and published twice a month.

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Support for the Health Information and Trust initiative is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed do not necessarily reflect the views of RWJF and KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities. The Public Good Projects (PGP) provides media monitoring data KFF uses in producing the Monitor.


Poll Finding

KFF Health Tracking Poll September 2024: Harris v. Trump on Key Health Care Issues

Published: Sep 10, 2024

Findings

Note: The third bullet in the key findings was updated on Sept. 17, 2024, to correct a typographical error, where former President Trump had been misidentified as President Biden.

Key Takeaways

  • Four in ten voters (38%) choose the economy and inflation as the most important issue determining their vote this fall from a list of national issues, including several health care issues. As the economy looms large in the 2024 election, voters from both parties want their candidates to talk about health care costs. When voters are asked to offer in their own words what health care issue they most want to hear the candidates talk about, about four in ten voters across partisanship mention issues related to the cost of health care. Democratic and Democratic-leaning independent voters say they would like Vice President Harris to talk about general health care costs (20%), prescription drug costs (15%), and the cost of insurance or reducing their monthly premiums (6%). About one in seven offered abortion as the one health care issue they want to hear about from Harris and 13% mentioned universal health care – an issue that was largely debated during the 2020 Democratic primaries. Similarly, nearly half (45%) of Republican voters and Republican-leaning independent voters say they would most like to hear former President Trump talk about health care costs. This is followed by one in eight (12%) who say they want to hear him talk about Medicare, Medicaid, or Social Security.
  • Abortion continues to motivate a small group of voters, mainly Democratic and Democratic-leaning independent women voters of reproductive age (ages 18-49). About a fifth of this voting bloc say abortion is their most important voting issue and half say they will only vote for a candidate who shares their views on abortion. Overall, this group of voters wants abortion to be legal and the vast majority (90%) say they want a federal law restoring a nationwide right to abortion similar to what was protected by Roe v. Wade. The share of Democratic-leaning women of reproductive age who say they think the presidential election will have a major impact on abortion access has increased 31 percentage points in the past six months (90% v. 59%), a time in which Vice President Harris became the Democratic presidential nominee and began highlighting the issue in her campaign.
  • A majority of all voters now say they trust the Democratic nominee more to handle the issue of abortion compared to former President Trump (53% v. 34%), widening a much smaller advantage that President Biden had over Trump earlier this year (38% v. 29%), a sign of Harris’s relative strength with Democratic voters on this issue.
  • Voters largely prefer a federal law restoring a nationwide right to abortion, similar to what was protected by Roe v. Wade (61%), rather than leaving it up to the states to decide whether abortion is legal or not (39%). Majorities of both Democratic voters (87%) and independent voters (68%) would prefer a federal law restoring the nationwide right to an abortion, the policy position of the Democratic presidential candidate V.P. Harris, while seven in ten Republican voters would prefer leaving abortion laws up to the states, the position advocated by former President Trump. Notably, while the vast majority of Democratic and Democratic-leaning women voters of reproductive age support restoring a federal law for a nationwide right to abortion, this policy proposal is also preferred by half of Republican women voters of reproductive age.

How Voters Are Prioritizing Health Care Issues in 2024

The economy and inflation continue to dominate the list of issues that voters are focusing on during this year’s presidential election with four in ten voters (38%) saying it is the most important issue determining their vote in the 2024 presidential race. Following the economy is threats to democracy (22%), immigration and border security (12%), then several individual health care issues including abortion (7%), Medicare and Social Security (7%), and health care costs, including prescription drug costs (5%). Altogether, health care issues are seen as the most important issue by about one in five voters (19%). Gun policy (3%) and the war between Israel and Hamas in Gaza (2%) rank the lowest among the issues included in the list provided to voters.

Individual Health Care Issues Rank Behind Other Key Topics for Voters This Fall

While substantial shares of voters across partisanship say the economy and inflation is their most important voting issue including more than half (54%) of Republican voters, the ranking of other issues are more partisan. For example, Republican voters are much more likely to prioritize immigration as a voting issue with nearly a quarter (23%) saying it is the most important issue to their vote compared to one in ten independent voters (9%) and few Democratic voters (4%). On the other hand, threats to democracy is the top voting issue for Democratic voters with four in ten (38%) saying it is their most important issue, compared to one in five independent voters (22%) and 5% of Republican voters who say the same.

While Economy Ranks High Across All Voters, Other Issues Are More Partisan

Voters Want to Hear Candidates Talk About Lowering Health Care Costs

An indication of how the economy and health care consistently overlap for voters, economic concerns also rear up when voters are asked what health care issue they most want to hear the candidates talk about. Across partisans, the recurring theme is costs. Responses related to health care costs are offered by four in ten (42%) Democratic and Democratic-leaning independent voters when asked to say in their own words what is the one health care issue they would most like Vice President Harris to talk about. This includes voters who mentioned general health care costs (20%), prescription drug costs (15%), and the cost of insurance or reducing their monthly premiums (6%). About one in seven offered abortion as the one health care issue they want Harris to talk about and 13% mentioned universal health care – an issue that was largely debated during the 2020 Democratic primaries.

Costs Tops List of Health Care Issues Democratic and Democratic-Leaning Voters Want to Hear Harris Talk About

Similarly, nearly half (45%) of Republican voters and Republican-leaning independent voters say they would most like to hear former President Trump talk about health care costs. This is followed by one in eight voters who say they want to hear him talk about Medicare, Medicaid, or Social Security.

Republicans and Independents Prioritize Costs Among Top Health Care Issues for Trump to Talk About

Health Care Issues, Including Abortion, Resonate Highest With Certain Voters

Overall, the individual health care issues included in the list loom larger for Democratic voters, as they are more than twice as likely as Republican voters to select abortion, Medicare and Social Security, or health care costs as their most important voting issue (25% v. 11%). One in five independent voters also chose a health care issue as their most important voting issue. In addition, women voters are about twice as likely as men to choose a health care issue as their most important voting issue this fall (25% vs. 12%). Democratic voters and women voters have long been more likely to prioritize health care issues than their counterparts, except for Republican voters’ focus on repealing the ACA, but this election cycle is slightly different. In the first presidential election since the Supreme Court Dobbs decision that overturned Roe v. Wade, abortion is now a top voting issue for about one in ten Democratic voters and a similar share of overall women voters.

Overall, most voters (58%) say a candidate’s position on abortion is just one of many factors that might affect their vote this year while about a quarter of voters say they will only vote for a candidate who shares their views on abortion. About one in five (18%) voters say abortion isn’t an important factor in their vote choice.

Democratic voters are more likely to say they will only vote for a candidate who shares their view on abortion (31%), but still most say it is just one of many factors (61%). The same is true among all women of reproductive age, with one in three saying they would only vote for a candidate who shares their view on abortion.

Most Say Candidates' Positions on Abortion Is Just One of Many Factors in Vote Choice

Abortion Is an Important Voting Issue for Democratic Women of Reproductive Age

While abortion may not resonate as a top voting issue for all voters, for a key group of voters – Democratic women voters of reproductive age – abortion is among the most important voting issues.

Abortion ranks as a top voting issue for Democratic and Democratic-leaning women of reproductive age (between the ages of 18 and 49), with 21% saying it is their most important issue, ranking alongside the economy (23%) and threats to democracy (25%) as their top voting issue.

Half of Democratic women of reproductive age, the group that is most likely to prioritize abortion as a voting issue, say they will only vote for a candidate who shares their view on abortion (48%), a position they hold more often than any other group. A similar share (48%) say abortion is one of many important factors, while few say abortion is not an important factor in their vote choice (4%). This group is largely in support of abortion access with nine in ten (93%) Democratic women of reproductive age saying they think abortion should be legal in all or most cases.

Democratic Women Voters Are More Likely to Prioritize Abortion as a Voting Issue, Half Say They Will Only Vote for a Candidate Who Shares Their Views on the Issue

Vice President Harris Has Strong Advantage on Abortion, Former President Trump Leads on Economy and Immigration

Former President Trump has a clear advantage over Vice President Harris on who voters trust to do a better job dealing with two key issues: economy and inflation (52% vs. 37%) and immigration and border security (54% vs. 36%). On the other hand, Vice President Harris has nearly a similar advantage on the issue of abortion (53% vs. 34%). A KFF Tracking Poll conducted earlier this year when President Biden was still the Democratic nominee found that Biden had a smaller advantage over Trump on abortion (38% v. 29%), a sign of Harris’s relative strength with Democratic voters on this issue.

Neither candidate has a majority of voters saying they trust them more to do a better job on any of the other key voting issues asked about including Medicare and Social Security or health care costs. However, V.P. Harris does have the advantage on the issue of health care costs. Former President Trump garners more trust on the issue of the war between Israel and Hamas in Gaza, but a substantial share of voters say they trust neither candidate to do a better job of handling this issue.

Former President Trump Has Advantage on Immigration and Economy, V.P. Harris Holds Advantage on Abortion

Both presidential candidates are trying to garner support from independent voters and these voters give former President Trump the advantage on their top voting issue – the economy and inflation. About half of independent voters (52%) say they trust former President Trump to do a better job dealing with the economy and inflation, while a third (32%) of independent voters say they trust V.P. Harris to do a better job. V.P. Harris holds a much smaller advantage on their second most important voting issue – threats to democracy (46% vs. 37%). Across the three health care issues, V.P. Harris has a strong advantage over former President Trump among independent voters including a 36-point advantage on the issue of abortion. On the other hand, former President Trump holds a 20-point advantage on the issue of immigration and border security.

Independent Voters Give Former President Trump Clear Advantage on the Economy and Immigration, V.P. Harris Has Even Bigger Advantage on Abortion

Most Voters Expect Presidential Election to Have Major Impact on Abortion Policy

Nine in ten (89%) voters say this year’s elections for president will have an impact on abortion access in the U.S., including six in ten (61%) voters who say it will have a “major impact.” One in ten (11%) voters think the election will not have any impact on access to abortion in the U.S.

Democratic voters are more than twice as likely as Republican voters (84% vs. 40%) to say the election will have a major impact on abortion access. Three-fourths (72%) of women voters of reproductive age, those most directly impacted by abortion policy in the U.S., say the presidential election will have a major impact on abortion access, rising to nine in ten Democratic and Democratic-leaning independent women voters ages 18-49. On the other hand, four in ten (43%) Republican and Republican-leaning independent women voters of reproductive age say the same.

Majorities of Voters Think This Year's Presidential Election Will Have a Major Impact on Abortion Access in the U.S.

A larger share of voters now say that this election will have a “major” impact on abortion access than the share who said so in March of this year when President Biden was still on the ballot, perhaps reflecting the current president’s uneasiness with the issue. Currently, six in ten (61%) voters think this election will have a “major” impact, compared to about half (51%) in March. Some of the largest changes have been among independent voters and Democratic voters, with 84% of Democratic voters now saying the presidential election will have a major impact on abortion access, up from 71% in March. Similarly, 58% of independent voters say the same, a 14-percentage point increase from 44% in March. The share of Republican voters who say the election will have a major impact has remain unchanged.

Democratic and Democratic-leaning independent women voters of reproductive age (ages 18-49) are also now placing a higher emphasis on this election’s impact on abortion access. In the most recent tracking poll, nine in ten Democratic women under age 50 now say this year’s presidential election will have a major impact on abortion access in the U.S., compared to just 59% who said the same in March of this year.

Larger Shares of Voters Now Say This Year's Presidential Election Will Have a Major Impact on Abortion Access Than in March

Six In Ten Voters Want Roe Protections Restored

Six in ten (61%) voters would prefer a federal law restoring a nationwide right to abortion, similar to what was protected by Roe v. Wade, while four in ten (39%) would prefer to leave it up to the states to decide whether abortion is legal or not in each state.

Majorities of both Democratic voters and independent voters would prefer a federal law restoring a nationwide right to abortion, with nearly nine in ten (87%) Democratic voters and two-thirds (68%) of independent voters who say so. Seven in ten Republican voters would prefer leaving abortion laws up to the states.

Nine in ten Democratic and Democratic-leaning women voters who are of reproductive age support restoring a federal law for a nationwide right to abortion, while Republican women voters of reproductive age are more divided with similar shares saying they would prefer a federal law restoring a nationwide right to abortion (49%) or leaving it up to the states (51%).

Nearly seven in ten voters who live in states where abortion is legal and available support a federal law restoring a nationwide right to abortion (68%), as do a majority of voters living in states where abortion is banned or limited (54%).

Majorities of Voters Support a Federal Law Restoring Nationwide Right to Abortion

This is especially important as ten states are set to have voters cast ballots on abortion-related measures in the 2024 election. In those states, 62% of voters say they would prefer to have a federal law restoring a nationwide right to abortion similar to what was protected by Roe.

As the presidential campaigns continue, a majority of voters say it is important for the 2024 presidential candidates to talk about abortion (84%), access to birth control (79%), and in vitro fertilization, or IVF, (57%) on the campaign trail.

Majority of Voters Say It Is Important for Presidential Candidates to Talk About Reproductive Health Issues

At least three-quarters of Democratic voters say it is either “very important” or “somewhat important” for the candidates to talk about each of these issues, as do a majority of independent voters. A majority of Republican voters agree, albeit to a lesser degree, that it is important for the presidential candidates to discuss abortion and birth control access, but less than half say the same about IVF.

At least nine in ten Democratic and Democratic-leaning women of reproductive age say it is important for the candidates to discuss abortion (97%) and access to birth control (95%) on the campaign trail, and three quarters (76%) say it is important for the candidates to talk about IVF.

Voters, Especially Democratic Voters, Want to Hear Candidates Discuss Reproductive Health Issues

Methodology

This KFF Health Tracking Poll/Health Misinformation Tracking Poll was designed and analyzed by public opinion researchers at KFF. The survey was conducted August 26-September 4, 2024, online and by telephone among a nationally representative sample of 1,312 U.S. adults in English (1,244) and in Spanish (68). The sample includes 1,028 adults (n=53 in Spanish) reached through the SSRS Opinion Panel either online (n=1,018) or over the phone (n=18). The SSRS Opinion Panel is a nationally representative probability-based panel where panel members are recruited randomly in one of two ways: (a) Through invitations mailed to respondents randomly sampled from an Address-Based Sample (ABS) provided by Marketing Systems Groups (MSG) through the U.S. Postal Service’s Computerized Delivery Sequence (CDS); (b) from a dual-frame random digit dial (RDD) sample provided by MSG. For the online panel component, invitations were sent to panel members by email followed by up to three reminder emails.

Another 284 (n=15 in Spanish) interviews were conducted from a random digit dial telephone sample of prepaid cell phone numbers obtained through MSG. Phone numbers used for the prepaid cell phone component were randomly generated from a cell phone sampling frame with disproportionate stratification aimed at reaching Hispanic and non-Hispanic Black respondents. Stratification was based on incidence of the race/ethnicity groups within each frame.

Respondents in the phone samples received a $15 incentive via a check received by mail, and web respondents received a $5 electronic gift card incentive (some harder-to-reach groups received a $10 electronic gift card). In order to ensure data quality, cases were removed if they failed two or more quality checks: (1) attention check questions in the online version of the questionnaire, (2) had over 30% item non-response, or (3) had a length less than one quarter of the mean length by mode. Based on this criterion, no cases were removed.

The combined cell phone and panel samples were weighted to match the sample’s demographics to the national U.S. adult population using data from the Census Bureau’s 2022 Current Population Survey (CPS), September 2021 Volunteering and Civic Life Supplement data from the CPS, and the 2024 KFF Benchmarking Survey with ABS and prepaid cell phone samples. The demographic variables included in weighting for the general population sample are gender, age, education, race/ethnicity, region, civic engagement, frequency of internet use, political party identification by race/ethnicity, and education. The sample of registered voters was weighted separately to match the U.S. registered voter population using the same parameters above derived from the 2024 KFF Benchmarking Survey. Both weights account for differences in the probability of selection for each sample type (prepaid cell phone and panel). This includes adjustment for the sample design and geographic stratification of the cell phone sample, within household probability of selection, and the design of the panel-recruitment procedure.

The margin of sampling error including the design effect for the full sample is plus or minus 4 percentage points and is plus or minus 4 percentage points for registered voters. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. KFF public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

GroupN (unweighted)M.O.S.E.
Total1,312± 4 percentage points
.
Total registered voters1,084± 4 percentage points
Democratic registered voters377± 7 percentage points
Independent registered voters335± 7 percentage points
Republican registered voters332± 7 percentage points
News Release

A Growing Share of Voters See the Election as a Referendum on Abortion Access; Vice President Harris Holds a Strong Advantage on the Issue

Ahead of Presidential Debate, Many Voters Want to Hear the Candidates Address Health Care Costs

Published: Sep 10, 2024

Most voters (61%) now say that the outcome of this year’s presidential election will have a major impact on access to abortion in this country – up 10 percentage points from March, a new KFF Health Tracking Poll finds.

The shift has occurred mainly among Democratic and independent voters over a period of time that saw Vice President Harris become the Democratic presidential nominee and make protecting abortion access a key component of her campaign.

Abortion resonates most with Democratic women voters of reproductive age (under age 50). About one in five (21%) in this group name abortion as their top voting issue.

Democratic women voters of reproductive age overwhelmingly (90%) say the presidential election will have a major impact on abortion access – up 31 percentage points from six months ago. The vast majority (93%) of this group of voters say that abortion should be legal in all or most cases.

Among all voters, Vice President Harris holds a large advantage over former President Trump on who they trust to do a better job on the abortion issue (53% vs. 34%). That’s a bigger lead on the issue than President Biden enjoyed earlier this year on a similar question before he dropped out of the race.

Vice President Harris also holds a narrower lead on trust to handle health care costs (48% vs. 39%). Independent voters give Harris an even bigger edge on health costs.

Meanwhile, former President Trump holds a large trust advantage among all voters on two major non-health issues: the economy and inflation (52% vs. 37%) and immigration and border security (54% vs. 36%). Independents also give the edge to former President Trump on these issues.

Among Health Issues, Voters Are Most Eager to Hear the Candidates Address Costs

Ahead of tonight’s presidential debate, voters identify costs as the health care issue that they most want former President Trump and Vice President Harris to talk about, likely reflecting broader concerns about the economy and inflation, which remains voters’ top overall issue.

Among Republicans and Republican-leaning independents, nearly half (45%) say they most want former President Trump to talk about health costs, offering responses like prescription drug costs and insurance premiums. A similar share of Democrats and Democratic-leaning independents (42%) say they most want Vice President Harris to talk about health care costs.

Other findings include:

  • Among all voters, six in ten (61%) say they would prefer a federal law restoring a national right to abortion similar to what existed under Roe v. Wade than leaving it up to the states to decide whether abortion is legal or not (39%). In the 10 states where voters could decide abortion ballot initiatives, voters prefer a federal law to leaving it up to the states by a similar margin (62% vs. 38%).
  • Among Democratic women voters under age 50, the vast majority (90%) say they favor a federal law restoring a nationwide right to abortion similar to what existed prior to the Supreme Court’s 2022 decision overturning its Roe v. Wade precedent.
  • When asked directly about these issues, voters say it is important for the presidential candidates to talk about abortion (84%), access to birth control (79%), and In vitro fertilization, or IVF, (57%) on the campaign trail. At least three-quarters of Democratic voters say it is important for the candidates to talk about each of these issues, as do most independent voters. Most Republican voters also say it is important for the candidates to discuss abortion and birth control access, but less than half say the same about IVF.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted August 26-Sept. 4, 2024, online and by telephone among a nationally representative sample of 1,312 U.S. adults, including 1,084 registered voters, in English and in Spanish. The margin of sampling error is plus or minus 4 percentage points for the full sample and among registered voters. For results based on other subgroups, the margin of sampling error may be higher.

Poll Finding

Experiences of Adults Who Have Been Incarcerated: Findings from the KFF Survey on Racism, Discrimination, and Health

Published: Sep 9, 2024

Findings

Introduction

This report, based on analysis of KFF’s 2023 Racism, Discrimination, and Health Survey, focuses on the experiences of people who have been previously incarcerated and examines their social and economic circumstances as well as their physical and mental health and access to health care. The findings aim to fill in a gap in publicly available data on the experiences of people who were previously incarcerated. The goal is to provide increased understanding of the health and other basic needs of people who were previously incarcerated, rather than identifying the role incarceration plays in driving these and other outcomes.

The analysis shows that people with previous experience with incarceration have significant health needs and limited access to resources, including health care, and experience more social isolation. Some key findings include:

  • Adults with prior incarceration experience report many financial challenges, including half who say they have problems affording basic living expenses. These financial hardships are particularly pronounced among previously incarcerated adults who are lower income (household incomes below $40,000) (66%), women (62%), or Black (57%). Yet, the experiences are not solely explained by the fact that many previously incarcerated adults have lower household incomes than their counterparts. When comparing the experiences among the lowest income individuals in both groups, previously incarcerated adults are more likely than those with similar incomes but no incarceration experience to report difficulty affording expenses.
  • Social support networks may be particularly important for people who have interactions with the criminal justice system, yet six in ten (61%) of those with prior incarceration experience say they have just a few or no friends or family living near them to ask for help or support. In addition, a quarter of previously incarcerated individuals say they have felt lonely either “always” or “often” in the past twelve months, almost twice the share among those without previous incarceration experience (13%).
  • A substantial share of adults who have been previously incarcerated report “fair” or “poor” physical health and mental health, and the disparity between those with incarceration experience and those without is even more pronounced among women. Overall, a quarter of those who have been incarcerated say their physical health is “fair” or “poor,” increasing to four in ten (39%) among women who have spent a night in jail or prison. One in four (27%) previously incarcerated adults say their mental health is “fair” or “poor,” increasing to almost half (46%) of women who have been previously incarcerated.
  • Reflecting their lower income levels, Medicaid covers about a quarter (25%) of previously incarcerated adults compared with 14% of adults without previous incarceration experience. Although Medicaid coverage helps to fill gaps in private coverage for previously incarcerated adults, they also remain more likely than adults without incarceration experience to report being uninsured (13% vs. 8%).
  • Despite significant health needs, one in five (22%) adults with previous incarceration experience say they do not have a usual source of care or go to the emergency room when they are sick or need advice about their health. One in three of those with previous incarceration experience say they skipped or postponed health care because of costs in the past year. This includes nearly four in ten (37%) women with prior incarceration experience.
  • About three in ten (31%) adults with previous incarceration experience say they have received mental health services from a doctor, counselor, or other mental health professional in the last 3 years. Among those with incarceration experience, women are more than twice as likely as men to say they have received such services (53% vs. 20%), likely reflecting the higher share of women in this group who report mental health challenges. But there are still unmet needs, with almost half of those previously incarcerated who report having fair or poor mental health saying there was a time in the past three years when they needed mental health services or medication but didn’t get them.

Who Are Previously Incarcerated Adults?

One in seven (14%) U.S. adults say they have ever been held in jail or prison for one night or longer. This broad definition of previously incarcerated adults encompasses a range of experiences, including variations in how long people were incarcerated (from a single night to months or even years) and variations in how recently this experience occurred. Notably, it excludes adults who are currently incarcerated and should not be interpreted as representative of that population.

People with previous incarceration experience are more likely to identify as Black and/or American Indian and less likely to identify as Asian compared to those with no incarceration experience. While Black and Hispanic people make up disproportionate shares of the currently incarcerated population, these patterns are less pronounced among the group with any previous incarceration experience. This may be due to racial and ethnic disparities in federal sentencing.

People who have been incarcerated are disproportionately male (66%), without a college degree (84%), and have incomes under $40,000 (49%). See Appendix Figure 1 for more details on the demographic profile of the population included in this analysis. Appendix Figure 2 compares estimates of this previously incarcerated definition across key demographic groups.

Economic and Social Challenges

Many adults with prior incarceration experience report facing financial challenges, including difficulty affording basic needs and paying their monthly bills. These challenges are particularly pronounced among certain groups of adults who previously incarcerated including those with lower incomes, those who are Black adults, and those who are women.

Half of adults who have been previously incarcerated say they or a family member living with them have had problems paying for food, housing, transportation, or other necessities in the past 12 months. The share rises to 57% of Black adults and 62% of women with prior incarceration experience. Overall, adults who have previously been incarcerated are more likely than those who have not to report problems paying for basic needs. While this in part reflects their lower incomes, even among adults with household incomes of less than $40,000, those who have been incarcerated are more likely to report problems paying for basic necessities than those who have not (66% vs. 44%).

Half of Adults Who Were Previously Incarcerated Report They or a Family Member Had Trouble Paying for Necessities

Lower-income adults and women with previous experience with being incarcerated report difficulties affording expenses and securing housing.

More than one in four adults who have been previously incarcerated say they have difficulty affording their bills each month rising to more than four in ten (43%) of those who have been previously incarcerated and have household incomes under $40,000. One in five (20%) of those earning similar incomes without incarceration experience say the same.

About one in five adults with previous experience being incarcerated report they have been evicted or denied housing, nearly four times the share of those without incarceration experience (19% v. 5%). This share rises among those with lower incomes, with one in four of those with household incomes under $40,000 saying they have been evicted or denied housing (compared to one in ten of those with similar income levels but without previous incarceration experience).

More than four in ten women with previous experience being incarcerated report difficulty affording their monthly bills and more than a quarter say they have ever been evicted or denied housing. The share of women who report such experiences is higher than the share of men with incarceration experience who report the same.

At least a quarter of previously incarcerated adults across race and ethnicity groups said they had difficulty affording bills each month (25% of Hispanic adults, 28% of White adults, and 32% of Black adults). About three in ten Black adults who were previously incarcerated also reported ever being evicted or denied housing as did one in five Hispanic adults and 16% of White adults.

Lower Income Adults and Women Who Were Previously Incarcerated Are More Likely Than Those Who Were Not to Report Difficulty Affording Bills
Lower Income Adults and Women Who Were Previously Incarcerated Are More Likely Than Those Who Were Not to Report Difficulty Securing Housing

Difficulty affording monthly bills or getting housing may reflect problems getting or keeping a job. One in four of those who have been previously incarcerated say in the past 12 months they or a family member living with them have had problems getting or keeping a job and 14% say they are currently unemployed.

Social Supports

Social support networks may be particularly important for people who have interactions with the criminal justice system, yet six in ten (61%) of those with prior incarceration experience say they have just a few or no friends or family living near them to ask for help or support. In addition, a quarter of previously incarcerated individuals say they have felt lonely either “always” or “often” in the past twelve months, almost twice the share among those without previous incarceration experience (13%). The share who report feeling lonely at least often increases to 42% of Black women who were previously incarcerated (compared to 20% of Black women with no incarceration experience).

Adults Who Were Previously Incarcerated Are More Likely Than Those Who Were Not to Report Lacking Social Support and Feeling Lonely

Health and Health Care Access

One in four adults with previous incarceration experience report being in fair or poor physical health, and three in ten report having a disability or condition that prevents them from participating fully in work or other activities, including much higher shares among women than men.

About a quarter of those who have been incarcerated say their physical health is “fair” or “poor.” The share of previously incarcerated adults who report negative physical health increases to four in ten (39%) among women, twice the share of women without such experience who say the same (19%). About one in five men, regardless of their experience being incarcerated, report the same. Similarly, while three in ten of those who have been previously incarcerated report having a physical or mental health condition or disability that keeps them from participating fully in work, school housework or other activities, it rises to four in ten among women who have been previously incarcerated.

At Least One in Four Adults Who Were Previously Incarcerated Report Negative Physical Health or Having a Debilitating Condition

Reflecting their lower incomes, adults with prior incarceration experience are disproportionately likely to be covered by Medicaid or uninsured. Medicaid covers a quarter (25%) of previously incarcerated adults compared with 14% of adults without previous incarceration experience. Although Medicaid coverage helps to fill gaps in private coverage for previously incarcerated adults, they remain more likely than other adults to report being uninsured (13% vs. 8%).

Adults Who Were Previously Incarcerated Are More Likely Than Those Who Were Not to Be Uninsured or Enrolled in Medicaid

Despite their reported health care needs, about one in five (19%) people with experience being incarcerated say they have not gone to a doctor or any other health care provider about their own health in the past 12 months.

In addition, one in five adults (22%) with previous incarceration experience say they do not have a usual source of care or go to the emergency room when they are sick or need advice about their health. One in three of those with previous incarceration experience say they skipped or postponed health care because of costs in the past year. This includes nearly four in ten (37%) women and nearly a third of men (31%).

About One in Five Adults with Prior Incarceration Experience Say They Have Not Visited a Doctor in the Past Year and Do Not Have a Usual Source of Care

In all, 37% previously incarcerated individuals say they skipped or postponed care for any reason and their health got worse because of it, rising to half (52%) of women with previous incarceration experience.

More Than a Third of Adults Who Were Previously Incarcerated Report That Their Health Worsened Due to Skipping Care

While previously incarcerated individuals are less likely to report using health care compared to those with no incarceration experience, this does not necessarily reflect a lack of concern about their health. One in five previously incarcerated individuals say they experienced worry or stress related to their health almost every day or even more often than that in the past 30 days, including one in ten (10%) who say they experienced it every day.

Mental Health Care

A substantial share of previously incarcerated adults, including even larger shares of women, report difficulties with their mental health and barriers to accessing mental health care.

One in four (27%) previously incarcerated adults say that their mental health is “fair” or “poor,” increasing to almost half (46%) of women who have been previously incarcerated. That includes about a quarter of previously incarcerated adults across and racial and ethnic groups.

One in Four Adults Who Were Previously Incarcerated Report Negative Mental Health, Including Half of Women

In addition, one in four previously incarcerated individuals say they have felt depressed always or often in the past 12 months, increasing to 43% of previously incarcerated women. Nearly one in three say they have felt anxious always or often in the past 12 months, once again increasing to half of previously incarcerated women.

Overall Adults Who Were Previously Incarcerated Are More Likely Than Those Who Were Not to Report They Have Felt Depressed or Anxious

About three in ten (31%) adults with previous incarceration experience say they have received mental health services from a doctor, counselor, or other mental health professional in the last 3 years. Among those with incarceration experience, women are more than twice as likely as men to say they have received such services, likely reflecting the higher share of women in this group who report mental health challenges. In addition, six in ten previously incarcerated adults who report having fair or poor mental health say they have received mental health care services in the past three years.

Three in Ten Adults Who Were Previously Incarcerated Report Receiving Mental Health Services in Past Three Years

But there are still unmet needs with about a quarter saying they didn’t receive mental health services or medications they needed in the past three years. The share who report this increases to nearly half (48%) of those previously incarcerated who report having fair or poor mental health and women (37%).

A Quarter of Adults Who Were Previously Incarcerated Report Unmet Mental Health Needs

Methodology

The Survey on Racism, Discrimination, and Health was designed and analyzed by researchers at KFF. The survey was conducted June 6 – August 14, 2023, online and by telephone among a nationally representative sample of 6,292 U.S. adults in English (5,706), Spanish (520), Chinese (37), Korean (16), and Vietnamese (13).

The sample includes 5,073 adults who were reached through an address-based sample (ABS) and completed the survey online (4,529) or over the phone (544). An additional 1,219 adults were reached through a random digit dial telephone (RDD) sample of prepaid (pay-as-you-go) cell phone numbers. Marketing Systems Groups (MSG) provided both the ABS and RDD sample. All fieldwork was managed by SSRS of Glen Mills, PA; sampling design and weighting was done in collaboration with KFF.

Sampling strategy:

The project was designed to reach a large sample of Black adults, Hispanic adults, and Asian adults. To accomplish this, the sampling strategy included increased efforts to reach geographic areas with larger shares of the population having less than a college education and larger shares of households with a Hispanic, Black, and/or Asian resident within the ABS sample, and geographic areas with larger shares of Hispanic and non-Hispanic Black adults within the RDD sample.

The ABS was divided into areas (strata) based on the share of households with a Hispanic, Black, and/or Asian resident, as well as the share of the population with a college degree within each Census block group. To increase the likelihood of reaching the populations of interest, strata with higher incidence of Hispanic, Black, and Asian households, and with lower educational attainment, were oversampled in the ABS design. The RDD sample of prepaid (pay-as-you-go) cell phone numbers was disproportionately stratified to reach Hispanic and non-Hispanic Black respondents based on incidence of these populations at the county level.

Incentives:Respondents received a $10 incentive for their participation, with interviews completed by phone receiving a mailed check and web respondents receiving a $10 electronic gift card incentive to their choice of six companies, a Visa gift card, or a CharityChoice donation.

Community and expert input:Input from organizations and individuals that directly serve or have expertise in issues facing historically underserved or marginalized populations helped shape the questionnaire and reporting. These community representatives were offered a modest honorarium for their time and effort to provide input, attend meetings, and offer their expertise on dissemination of findings.

Translation:After the content of the questionnaire was largely finalized, SSRS conducted a telephone pretest in English and adjustments were made to the questionnaire. Following the English pretest, Cetra Language Solutions translated the survey instrument from English into the four languages outlined above and checked the CATI and web programming to ensure translations were properly overlayed. Additionally, phone interviewing supervisors fluent in each language reviewed the final programmed survey to ensure all translations were accurate and reflected the same meaning as the English version of the survey.

Data quality check:A series of data quality checks were run on the final data. The online questionnaire included two questions designed to establish that respondents were paying attention and cases were monitored for data quality including item non-response, mean length, and straight lining. Cases were removed from the data if they failed two or more of these quality checks. Based on this criterion, 4 cases were removed.

Weighting:The combined cell phone and ABS samples were weighted to match the sample’s demographics to the national U.S. adult population using data from the Census Bureau’s 2021 Current Population Survey (CPS). The combined sample was divided into five groups based on race or ethnicity (White alone, non-Hispanic; Hispanic; Black alone, non-Hispanic; Asian alone, non-Hispanic; and other race or multi-racial, non-Hispanic) and each group was weighted separately. Within each group, the weighting parameters included sex, age, education, nativity, citizenship, census region, urbanicity, and household tenure. For the Hispanic and Asian groups, English language proficiency and country of origin were also included in the weighting adjustment. The general population weight combines the five groups and weights them proportionally to their population size.

A separate weight was created for the American Indian and Alaska Native (AIAN) sample using data from the Census Bureau’s 2022 American Community Survey (ACS). The weighting parameters for this group included sex, education, race and ethnicity, region, nativity, and citizenship. For more information on the AIAN sample including some limitations, adjustments made to make the sample more representative, and considerations for data interpretation, see Appendix 2.

All weights also take into account differences in the probability of selection for each sample type (ABS and prepaid cell phone). This includes adjustment for the sample design and geographic stratification of the samples, and within household probability of selection.

The margin of sampling error including the design effect for the full sample is plus or minus 2 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. Appendix 1 provides more detail on how race and ethnicity was measured in this survey and the coding of the analysis groups. For results based on other subgroups, the margin of sampling error may be higher. All tests of statistical significance account for the design effect due to weighting. Dependent t-tests were used to test for statistical significance across the overlapping groups.

Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. KFF public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

GroupN (unweighted)M.O.S.E.
Total6,292± 2 percentage points
Race/Ethnicity
White, non-Hispanic (alone)1,725± 3 percentage points
Black (alone or in combination)1,991± 3 percentage points
Hispanic1,775± 3 percentage points
Asian (alone or in combination)693± 5 percentage points
American Indian and Alaska Native (alone or in combination)267± 8 percentage points

Appendix

Sociodemographics of U.S. Adults Who Have Been Previously Incarcerated
Demographics of U.S. Adults Who Have Been Previously Incarcerated and Total Adult Population

The Impact of HIV on Black People in the United States

Published: Sep 9, 2024

Key Facts

  • Black people in the U.S. have been disproportionately affected by HIV since the epidemic’s beginning, and that disparity has deepened over time.
  • Although they represent only 12% of the U.S. population, Black people account for a much larger share of HIV diagnoses (39%), people living with HIV (40%), and deaths among people with HIV (43%) than any other racial/ethnic group in the U.S.
  • Among Black Americans, Black women, youth, and gay and bisexual men have been disproportionately impacted by HIV.
  • Several challenges contribute to the epidemic among Black people, including experiences with stigma and discrimination, higher rates of poverty, lack of access to health care, higher rates of some sexually transmitted infections, and lower awareness of HIV status..
  • Recent data indicate some encouraging trends, including declining new HIV diagnoses among Black people overall, especially among women, and a leveling off of new diagnoses among Black gay and bisexual men (see Figure 1). However, given the epidemic’s continued and disproportionate impact on Black people, continued focus on this population is key to addressing HIV in the United States.
HIV Diagnoses in the United States, Overall and Among Black People

Overview

  • Today, there are more than 1.2 million people living with HIV in the U.S., 40% of whom (489,200) are Black.
  • The latest data indicate declines in both the number and rate of annual new diagnoses among Black people in recent years, including among both men and women (see Figure 1). However disparities persist in HIV prevention, treatment, and outcomes.
  • Although Black people represent only 12% of the U.S. population, they accounted for 39% of new HIV diagnoses in 2022 (see Figure 2).
New HIV Diagnoses & U.S. Population, by Race/Ethnicity
  • The rate of new HIV diagnoses per 100,000 among Black adults/adolescents (41.6) was about 8 times that of White people (5.3) and twice that of Latinos (23.4) in 2022 (see Figure 3). The rate for Black men (66.3) was the highest of any race/ethnicity and gender, followed by Latino men (40.8), the second highest group. Black women (19.2) had the highest rate among women.
Rates of New HIV Diagnoses per 100,000, by Race/Ethnicity, 2022
  • Black people accounted for more than 4 in 10 (43%) deaths among people with an HIV diagnosis (deaths may be due to any cause) in 2022. The number of deaths among Black individuals with an HIV diagnosis decreased 13% between 2010 and 2018 but then increased more recently, by 15% between 2018 and 2022.
  • HIV death rates (deaths for which HIV was indicated as the leading cause of death) are highest among Black people compared to people of other race/ethnicities. In 2022, Black people had the highest age-adjusted HIV death rate per 100,000 – 5.9, compared to 0.6 per 100,000 White persons.
  • In addition, in 2021 HIV was the 8th leading cause of death for Black men and for Black women ages 25-34.

Transmission

  • Transmission patterns vary by race/ethnicity. While male-to-male sexual contact accounts for the largest share of HIV cases among both Black and White people, proportionately, fewer Black people contract HIV this way. Heterosexual sex accounts for a greater proportion of HIV cases among Black people than White people.
  • Among Black people, 63% of HIV diagnoses in 2022 were attributable to male-to-male sexual contact and 32% were attributable to heterosexual sex; among White people, 70% of new HIV diagnoses in 2022 were attributable to male-to-male sexual contact and 16% were attributable to heterosexual sex. The remainder of HIV diagnoses in each group were attributable to other causes, including injection drug use.
  • Most HIV positive Black women acquired HIV through heterosexual transmission and a smaller share of HIV infections are attributable to injection drug use among Black women compared to White women (15% v 32%).

Geography

  • Although HIV diagnoses among Black people have been reported throughout the country, the impact of the epidemic is not uniformly distributed.
  • Regionally, the South accounts for both the majority of Black people newly diagnosed with HIV (52% in 2022) and the majority living with HIV at the end of 2022 (46%).
  • HIV diagnoses among Black people are concentrated in a handful of states. The top 10 states, 7 of which are in the South, account for 64% of all HIV diagnoses among Black people (see Figure 4).
Top Ten States by Number of HIV Diagnoses Among Black People, 2022

Women

  • Black women account for the largest share of new HIV diagnoses among women (3,523 or 50% in 2022) as well as the largest share of all women living with HIV. The rate of new diagnoses among Black women (19.2) is 10 times the rate among White women (1.9) and 3 times the rate among Latinas (5.5).
  • Although new HIV diagnoses continue to occur disproportionately among Black women, data show a 39% decrease in new diagnoses for Black women between 2010 and 2022. More recently though, from 2018 to 2022, new HIV diagnoses among Black women were essentially flat, decreasing by just 1%.
  • In 2022, Black women represented about one quarter (24%) of new HIV diagnoses among all Black people – a higher share than Latinas and White women (who represented 12% and 18% of new diagnoses among their respective racial/ethnic groups).

Young People

  • In 2022, half (50%) of HIV diagnoses among all young people ages 13-24 were among Black people.
  • More than half (53%) of gay and bisexual teens and young adults with HIV were Black in 2022.
  • In 2023, 10% of Black high school students report having ever been tested for HIV compared to 5% of White students but that share is down from 20% of Black students in 2013.

Gay and Bisexual Men

  • Black gay and bisexual men accounted for almost half (49%) of Black people living with HIV and 30% of gay and bisexual men living with HIV.
  • Among Black people, male-to-male sexual contact accounted for more than half (63%) of HIV diagnoses in 2022 and a majority (82%) of diagnoses among Black men.
  • Young Black gay and bisexual men are particularly affected. Black gay and bisexual men are younger than their White counterparts, with those ages 13-24 accounting for 32% of new HIV diagnoses among Black gay and bisexual men in 2022, compared to 12% among White gay and bisexual men.

HIV Testing and Access to Prevention & Care

  • In 2022, over half (57%) of Black adults reported ever having been tested for HIV, a greater share than among Latino or White adults (44% and 32%, respectively).
  • One-in-five (20%) Black people with HIV tested positive late in their illness – that is, were diagnosed with AIDS at the time of testing positive for HIV; similar to the share among White (21%) and Latino (21%) people.
  • Looking across the care continuum, Black people face disparities related to linkage to care and viral suppression. At the end of 2022, 88% of Black people with HIV were diagnosed, 64% were linked to care, and 53% were virally suppressed. In comparison, 89% of White people with HIV were diagnosed, 70% were linked to care, and 63% were virally suppressed.

How Many Adults with Private Health Insurance Could Use GLP-1 Drugs

Authors: Matt McGough, Justin Lo, Delaney Tevis, Matthew Rae, and Cynthia Cox
Published: Sep 6, 2024

More than two in five (42%) or 57.4 million adults under 65 with private insurance could be eligible under clinical criteria for GLP-1 drugs used to treat people with type 2 diabetes, obesity, or excess weight and weight-related health issues, according to a new KFF analysis.

Though only about 3% of adults with employer coverage had a prescription in 2022, demand for and spending on GLP-1 drugs has grown and could continue to grow. Given the steep costs and high demand for these drugs, employers and insurers may continue to impose more restrictive eligibility standards for coverage than the clinical indications set by the Food and Drug Administration.

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.

Medicaid Waiver Priorities Under the Trump and Biden-Harris Administrations

Published: Sep 6, 2024

Section 1115 Medicaid demonstration waivers offer states an avenue to test new approaches in Medicaid that differ from what is required by federal statute, so long as the approach is likely to “promote the objectives of the Medicaid program.” Waivers generally reflect priorities identified by states as well as changing priorities from one presidential administration to another. Each administration has some discretion over which waivers to approve and encourage, but that discretion is not unlimited. The Trump administration’s Section 1115 waiver policy emphasized work requirements – which were challenged in court – and other eligibility restrictions and capped financing. In contrast, the Biden-Harris administration has encouraged states to propose waivers that expand coverage, reduce health disparities, and advance whole-person care. Both administrations prioritized improving access to behavioral health services.

As with broader Medicaid policy, the future landscape of Section 1115 waivers depends on the outcome of the November 2024 presidential election as a new administration could focus on different priorities, rescind existing guidance, or withdraw already-approved waivers. This waiver watch summarizes five key areas of difference in 1115 waiver policy and waiver approvals under the Trump and Biden-Harris administrations (Figure 1, also see Appendix Table 1).

  • Work Requirements. For the first time in the history of the Medicaid program, the Trump administration encouraged and approved Section 1115 waivers that conditioned Medicaid coverage on meeting work and reporting requirements, approving 13 state work requirement waivers. The Biden-Harris administration withdrew Medicaid work requirement waivers in all states that had approvals, concluding that these provisions do not promote the objectives of the Medicaid program.
  • Premiums and Eligibility Changes. Under the Trump administration, CMS approved a range of demonstrations that included eligibility restrictions, including permitting states to apply restrictions (e.g., charging premiums, locking out enrollees disenrolled for unpaid premiums, and eliminating retroactive eligibility) to new populations (beyond ACA expansion adults) and approving several eligibility restrictions for the first time in program history. The Biden-Harris administration took steps to withdraw or phase out Medicaid premium requirements for several states and has encouraged states to propose waivers that expand Medicaid coverage and improve continuity of care.
  • Social Determinants of Health. The Trump administration generally had a limited focus on enrollee social determinants of health. In contrast, addressing health disparities and promoting integrated (“whole person”) care has been a primary focus of the Biden-Harris administration. In 2022, CMS announced a new 1115 demonstration opportunity that expands flexibility for states to leverage Medicaid to help address enrollee health-related social needs (HRSN) (including housing instability, homelessness, and nutrition insecurity).
  • Financing and Budget Neutrality. The Centers for Medicare and Medicaid Services (CMS) made changes to 1115 waiver budget neutrality policy in 2018, limiting the amount of federal funds that could be used for waiver spending. The Trump administration also introduced a demonstration opportunity that would have allowed states “extensive flexibility” to use Medicaid funds to cover certain adults without being bound by many federal standards (related to eligibility, benefits, delivery systems, and oversight) if states agreed to annual limits on federal financing (no state took up this option). The Biden-Harris administration made changes to Section 1115 budget neutrality policies that may provide greater flexibility for states to design and implement 1115 demonstration programs, including HRSN initiatives.
  • Transparency and Approval Process. Under the Trump administration, in a departure from prior policy, CMS approved waiver extension requests for up to 10 years, signaled an interest in reducing the frequency of required state reporting on 1115 waivers, and did not enforce state-level public notice and comment procedures for certain new/renewal 1115 waiver requests. Under the Biden-Harris administration, CMS removed the option for 10-year extensions and for less frequent state reporting and has enforced transparency and public notice requirements.

Work Requirements

Current Law/Context.  Data show most Medicaid adults are working or face barriers to work. Current law prohibits conditioning Medicaid eligibility on meeting a work or reporting requirement. Prior to the Trump administration, no states had received Section 1115 waiver approval to condition Medicaid coverage on work and reporting requirements, and legislative attempts to incorporate work requirements into Medicaid statute failed. Medicaid can support employment by providing health coverage and access to care and medications that enable people to work, and it can also provide voluntary employment referral and/or work support programs. A central question in the debate over work requirements in Medicaid is whether such policies promote health. A review of research on the relationship between work and health found that although there is strong evidence of an association between unemployment and poorer health outcomes, there is limited evidence on the effect of employment on health (studies have found job quality and stability are key factors in work-health relationship). While work requirements were the subject of litigation during the Trump and Biden-Harris administrations, the Supreme Court never ruled on the issue leaving it open for future administrations; however, any future waivers with work requirements would likely face legal challenges. Several states continue to pursue work requirement waivers, often tied to Medicaid expansion efforts.

Trump. The Trump administration encouraged and approved Section 1115 waivers that conditioned Medicaid coverage on meeting work and reporting requirements, approving 13 state work requirement waivers. Only Arkansas implemented work and reporting requirements with consequences for noncompliance, which resulted in over 18,000 people losing coverage before the court deemed the work requirement unlawful. While the vast majority of enrollees were working or qualified for exemptions, barriers with meeting reporting requirements led to people getting dropped from the program. Other states with approvals for work requirements paused implementation due to litigation and/or the COVID-19 pandemic.  Plans from some Republican and conservative groups continue to support federal legislation to allow or require work requirements in Medicaid. A Congressional Budget Office analysis of a recent work requirement proposal shows that the policy would reduce federal spending due to reductions in enrollment but would not increase employment.

Biden-Harris. The Biden-Harris administration withdrew Medicaid work requirement waivers in all states that had approvals, concluding that these provisions do not promote the objectives of the Medicaid program. Although CMS withdrew work and premium requirements in Georgia’s “Pathways” waiver, these provisions remain in place after a federal judge vacated the CMS rescission. Georgia’s waiver expands eligibility to 100% of the federal poverty level (FPL) for parents and childless adults (not a full Medicaid expansion under the ACA that does not qualify for enhanced federal matching funds), with initial and continued enrollment conditioned on meeting work and premium requirements. The waiver was implemented in July 2023. A year into the demonstration, enrollment remains low—as of June 2024, the state had only enrolled about 4,300 adults.

Premiums and Eligibility Changes

Current Law/Context. Given that people covered by Medicaid have low-incomes, federal rules limit states’ ability to charge premiums. States may not charge premiums to Medicaid enrollees with incomes below 150% of the FPL ($22,590 for an individual in 2024). Total family out-of-pocket costs (premiums and cost-sharing) are limited to no more than 5% of family income. Some states have received 1115 waiver approval to charge premiums or monthly contributions that are not otherwise allowed. States can also request 1115 authority to implement other eligibility and enrollment restrictions or to implement eligibility expansions, not otherwise allowed under current law (see Appendix Table 2).

Trump. Under the Trump administration, CMS approved a range of demonstrations that included eligibility restrictions. The administration approved some eligibility- and enrollment-related waiver provisions that had been approved under previous administrations (e.g., charging premiums, eliminating retroactive eligibility, making coverage effective on the date of the first premium payment (instead of the date of application), and locking out enrollees disenrolled for unpaid premiums); however, the Trump administration permitted states to apply these restrictions to new populations beyond ACA expansion adults (e.g., low-income parent/caretakers). The Trump administration also approved several eligibility restrictions for the first time, including:

  • Coverage lock-outs for failure to timely renew coverage or report changes affecting eligibility
  • Authority to charge premiums up to 5% of family income and to impose a premium surcharge for tobacco users
  • Eligibility conditioned on the completion of a health risk assessment

Biden-Harris. The Biden-Harris administration has taken steps to withdraw or phase out Medicaid premium requirements for several states, indicating the research evidence shows imposing premiums reduces access to coverage and care and is not likely to promote the objectives of the Medicaid program. The Biden-Harris administration also withdrew or phased out the authority for states to condition Medicaid eligibility on the completion of a health risk assessment.

The Biden-Harris administration has encouraged states to propose waivers that expand Medicaid coverage and improve continuity of care. For example, the Biden-Harris administration has encouraged states to adopt strategies to promote continuity of coverage, including providing multi-year continuous eligibility for children (e.g., birth to age 6) through Section 1115. In April 2023, 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). CMS has developed a standard demonstration application and special terms and conditions for reentry waivers to expedite approval.

Social Determinants of Health

Current Law/Context. Social determinants of health (SDOH) are the conditions in which people are born, grow, live, work and age. SDOH include but are not limited to housing, food, education, employment, healthy behaviors, transportation, and personal safety. While there are limits, states can use Medicaid – which, by design, serves a primarily low-income population with greater social needs – to address social determinants of health. States can use a range of state plan and waiver authorities to add certain non-clinical services to the Medicaid benefit package including case management, housing supports, employment supports, and peer support services.

Trump. The Trump administration generally had a limited focus on enrollee social determinants of health.   One exception was the administration’s 2018 approval of North Carolina’s “Healthy Opportunities Pilots,” allowing the state to cover certain non-medical services that target social needs, including housing, nutrition, transportation, and interpersonal relationship supports. The Trump administration later released guidance in 2021 highlighting existing federal authorities and opportunities for states to use Medicaid to address enrollee social determinants of health, including under Section 1115 authority.

Biden-Harris. Addressing health disparities and promoting integrated, “whole person” care in Medicaid has been a primary focus of the Biden-Harris administration. In 2022, CMS announced a Section 1115 demonstration waiver opportunity to expand the tools available to states to address enrollee health-related social needs (or “HRSN”). In 2023, CMS released a detailed Medicaid and CHIP HRSN Framework accompanied by an Informational Bulletin. The new demonstration opportunity includes federal guardrails and requirements including expenditure limits, service delivery requirements, and monitoring and evaluation requirements. CMS has stressed new HRSN initiatives are not designed to replace other federal, state, and local social service programs but rather to complement and coordinate with these efforts. HRSN demonstration approvals to date include coverage of rent/temporary housing and utilities for up to six months and meal support up to three meals per day, departing from longstanding prohibitions on payment of “room and board” in Medicaid.

Financing and Budget Neutrality

Current Law/Context. Medicaid financing is shared by states and the federal government with a guarantee to states for federal matching payments with no pre-set limit. The federal Medicaid match rate is an area that may not be changed under Section 1115 waiver authority. Under long-standing policy and practice (although not required by statute), waivers must also be “budget neutral” to the federal government over the course of the waiver (usually five years). In other words, federal costs under an 1115 waiver may not exceed what they would have been for that state without the waiver. Typically, budget neutrality calculations are determined on a per enrollee basis—so, per enrollee spending over the course of the waiver cannot exceed the projected per enrollee spending calculated in the “without-waiver baseline.” Waiver budget neutrality—measured against the estimated without-waiver baseline over the entire demonstration period—is not the same as a federal per enrollee limit on spending set at rates lower than expected under current law to generate federal savings. These broader limits on federal spending have been and continue to be part of plans supported by Trump and other Republicans.

Trump. CMS released guidance in 2018 revising Section 1115 budget neutrality policy. The guidance established new rules for calculating the “without-waiver” baseline to require “rebasing” every five years and to limit the trend to historical state spending rates or the President’s Budget trend rate (whichever rate was lower). These changes were designed to limit the “without-waiver” baseline and thereby limit the amount of federal funds that could be used for waiver spending.

After major legislative attempts to restructure Medicaid financing (into a block grant or per capita cap) as part of the 2017 ACA repeal debate failed, in January 2020 the Trump administration introduced the option for states to pursue “Healthy Adult Opportunity” (HAO) Section 1115 demonstrations. This demonstration opportunity would have allowed states “extensive flexibility” to use Medicaid funds to cover certain adults (including ACA expansion adults) without being bound by many federal Medicaid standards related to eligibility, benefits, delivery systems, and program oversight. In exchange, states would agree to a limit on federal financing in the form of a per capita or aggregate cap (with methods that differed from those used to determine budget neutrality). Only one state (Oklahoma) submitted an HAO demonstration request, which included a work requirement and other eligibility and benefit restrictions that would have applied to a new ACA expansion adult population. However, the state withdrew its application following a successful ballot measure adopting a traditional Medicaid expansion (in June 2020).

In January 2021, CMS approved a waiver request from Tennessee (not part the HAO initiative) that set an aggregate cap on federal spending and provided an opportunity for the state to keep a portion of any unspent federal dollars up to the cap without putting up the state match, as is required under current law. Unlike legislative block grant proposals designed to reduce federal spending, aggregate caps proposed In the Tennessee waiver were designed to be adjusted to reflect expected growth in federal Medicaid spending in the President’s budget and adjusted for changes in enrollment, posing less fiscal risk to the state.

Biden-Harris. The Biden-Harris administration renegotiated Tennessee’s waiver approval, replacing the aggregate cap with a traditional (i.e., 1115 waiver / budget neutral) per member per month cap. The Biden-Harris administration has also made changes to Section 1115 budget neutrality policies that may provide greater flexibility for states to design and implement 1115 demonstration programs (including “HRSN” initiatives). Republican members of the US House and Energy Commerce Committee have raised concerns about changes to Section 1115 budget neutrality requirements made by the Biden-Harris administration.

Transparency and Approval Process

Current Law/Context. Waivers are generally approved for a five-year period and can be extended, typically for three-to-five-year periods. The ACA made Section 1115 waivers subject to new rules about transparency, public input, and evaluation. In February 2012, HHS issued regulations that require public notice and comment periods to occur at the state and federal levels before CMS approves new Section 1115 waivers and extensions of existing waivers. Although the final regulations on public notice do not require a state-level public comment period for amendments to existing/ongoing demonstrations, CMS historically applied these regulations to amendments as well. The ACA also implemented new evaluation requirements for Section 1115 waivers, including that states must have a publicly available, CMS-approved evaluation strategy. States have traditionally been required to submit quarterly reports as well as an annual report to HHS that describes the changes occurring under the waiver and the impact on access, quality, and outcomes.

Trump. CMS released an Informational Bulletin in November 2017 signaling an interest in reducing the frequency of required state reporting from quarterly to semi-annual or annual for certain demonstrations. In the November 2017 bulletin, CMS also indicated that it would consider approving “routine, successful, non-complex” 1115 waiver extension requests for up to 10 years. The administration approved several 10-year waiver extension requests (e.g., most notably Florida, Indiana, Tennessee, and Texas as well as several family planning waivers). CMS, under the Trump administration, did not enforce state-level public notice and comment procedures for certain new 1115 waivers or extension requests (e.g., Indiana and Kentucky),1  including waivers that proposed significant changes (e.g., work requirements).

Biden-Harris. In 2022, CMS reinstated guidance from 2015, removing the option for 10-year extensions and for less frequent state reporting; however, the Biden-Harris administration has not rescinded any of the 10-year approvals. Additionally, under the Biden-Harris administration, CMS has enforced transparency and public notice requirements, returning incomplete 1115 applications submitted for federal review back to states to remedy (e.g., when an application failed to provide sufficient detail summarizing state-level public comments, including how the state considered the comments in developing the application).

Comparison of 1115 Waiver Policy and Approvals Under the Trump and Biden-Harris Administrations

Eligibility Provisions
  1. CMS deemed an amendment request (to a pending renewal application) from Indiana as complete in June 2017, opening the federal comment period while the state comment period was ongoing.  This “amendment” request included a work requirement. In July 2017, Kentucky submitted an amendment (to a pending new waiver application) without holding a state-level public comment period prior to submission. The request included premium requirements (including disenrollment and lock-out for failure to pay), disenrollment and lock-out for failure to timely report income / employment changes, removal of non-emergency medical transportation (NEMT) for certain adults, among other changes. ↩︎