During the COVID public health emergency, states were prohibited from disenrolling people from Medicaid in exchange for a substantial increase in federal funding. When continuous enrollment ended in March, states began the process of reviewing eligibility for people enrolled in the program and disenrolling those who were no longer eligible or who did not complete the renewal process. Ten months into the unwinding of the Medicaid continuous enrollment provision, states have conducted renewals for roughly half of all enrollees in the program. This policy watch examines three key questions to monitor as the unwinding continues.

1. What do we know about changes in Medicaid enrollment so far during unwinding?

Overall, Medicaid enrollment has declined by nearly 10% across states since the start of unwinding, a decline of almost 10 million people; however, the national decline in Medicaid enrollment masks significant variation across states. Changes in net enrollment reflect the people who are dropped from Medicaid as well as those who newly enroll, and those who re-enroll within a short timeframe following disenrollment, also known as “churn.” Because of churn and new enrollees — and lags in reporting — the change in net Medicaid enrollment is lower than the total number of people who have been dropped through the unwinding (which is currently more than 17 million). Unlike other types of coverage, there is no open enrollment period in Medicaid, so individuals can apply for coverage at any time. KFF research shows that pre-pandemic, one in ten enrollees disenrolled and re-enrolled in less than 12 months and children and adults had higher rates of churn compared to people who qualify for Medicaid based on age or disability. Enrollment declines vary tremendously by state. Since the start of unwinding, the decline in Medicaid enrollment across states ranges from 31% in Idaho to 0.5% in Hawaii. Net enrollment declines are measured against each state’s baseline enrollment, which is enrollment in the month prior to when the state resumed disenrollments.

State policy choices may be a better predictor of variation in state enrollment changes than how far along states are in processing renewals. While some variation in enrollment declines may reflect when states resumed disenrolling people as well as differences in the pace of processing renewals, this does not go far in explaining the variation in enrollment declines across states.  For example, some states — most notably, Texas — that still have about half of renewals yet to be completed have net enrollment declines that exceed 20% or double the national average of 10% (Figure 1).  Conversely, some states, such as Oregon, are quite far along in completing renewals, yet have seen a very small drop in enrollment. The Centers for Medicare and Medicaid Services (CMS) has released guidance and identified five strategies as most impactful in protecting coverage for children: improving auto-renewal or ex parte rates, adopting unwinding waivers, partnering with managed care plans to help people eligible for Medicaid use and keep their coverage, reducing call center wait times, and supporting coverage transitions for people no longer eligible for Medicaid. States are implementing many of these strategies, often multiple strategies at the same time, as well as others, such as enhanced outreach efforts to improve renewal processes. Ultimately, how states are proceeding with renewals will likely have a substantial effect on the number of people who are dropped from Medicaid, particularly for “procedural” disenrollments, where the renewal process is not completed and there is no way to tell if the person is still eligible for Medicaid or not. Overall, about 70% of disenrollments so far have been “procedural,” but the rate varies substantially across states.

2. Where will Medicaid enrollment wind up at the end of unwinding?

It is highly uncertain what national Medicaid enrollment will be at the end of unwinding. With about half of renewals left to complete, Medicaid enrollment will likely continue to decline. However, it is unknown how many of those who are procedurally disenrolled will regain Medicaid coverage and how many new enrollees may come on to the program. During the pandemic, Medicaid enrollment increased by 23 million or 32% from pre-pandemic levels. Given that unwinding is about halfway over – judged by the share of renewals that have been conducted so far – it’s possible that Medicaid enrollment could end up at roughly the same level as before the pandemic. In some respects, this could be considered a success. The continuous enrollment provision was intended as a temporary measure to ensure people didn’t lose Medicaid coverage during a public health crisis. A return to pre-pandemic enrollment levels is not an unreasonable outcome, particularly in an environment of low unemployment. However, those pre-pandemic Medicaid enrollment levels are not necessarily a good baseline for measuring success. Roughly one-quarter of people who are uninsured are eligible for Medicaid and not enrolled, suggesting that Medicaid was not reaching everyone who could be helped by the program before the pandemic. And, while there was churn prior to the pandemic and some churn is to be expected, rates may have been too high, resulting in eligible people losing coverage for short periods of time.

There is likely to be a lot of variation in where individual state enrollment lands relative to pre-pandemic due to unwinding and other policy changes. Some states are taking advantage of the unwinding to put in place policies that stabilize or increase Medicaid enrollment, and there is reason to believe that those states will end up with higher enrollment than pre-pandemic. However, other states are likely to see enrollment fall below pre-pandemic levels, resulting in more people uninsured than before the public health emergency. In addition, two states, South Dakota and North Carolina, implemented the Medicaid expansion during the unwinding (in July and December 2023, respectively), which should mitigate enrollment declines in these states. Other policies, such as mandatory 12-month continuous eligibility for children, optional 12-month postpartum coverage and broad state interest in pursuing multi-year continuous eligibility for children or other continuous coverage for adults, may help to reduce churn.

3. What will happen to coverage more broadly?

While changes in Medicaid enrollment are important, those numbers will matter less than what happens with the number of people who are uninsured.  The number of people without insurance and the uninsured rate dropped to record lows because of pandemic-era coverage policies, including the continuous enrollment provision in Medicaid and enhanced premium subsidies in the Affordable Care Act (ACA) Marketplaces. Unwinding will likely contribute to increases in the number of people who are uninsured and in the uninsured rate. Changes in the uninsured will depend on whether individuals who are no longer eligible and are disenrolled from Medicaid transition to other coverage, including employer plans and the Marketplace. Recent data show that Marketplace signups have reached 21.3 million people, exceeding last year’s record high by another 5 million people. Medicaid unwinding is only one factor contributing to that growth, and a relatively small share of people disenrolled from Medicaid are transitioning to Marketplace or Basic Health Plan coverage. Federal survey data that can show changes in employer coverage is lagged, so it will be quite some time until we understand the full picture of coverage trends. In addition, federal surveys are based on self-reported health coverage, which is subject to error, particularly in an environment like now, when so many transitions are occurring. As data become available, it will be important to assess how coverage changes vary across states and populations and how those changes affect children, low-income people, people of color, people with disabilities, and other groups that disproportionately rely on Medicaid.

Note:  This content was updated on February 28, 2024  to incorporate new FAQs from CMS. Tables 1 and 2 were also updated to include updated recommendations.

It has been more than ten years since the Affordable Care Act (ACA) required private insurance plans to cover recommended preventive services without any patient cost-sharing. Research has shown that evidence-based preventive services can save lives and improve health by identifying illnesses earlier, managing them more effectively, and treating them before they develop into more complicated, debilitating conditions, and that some services are also cost-effective. Since the preventive services coverage policy went into effect, there have been numerous additions, changes, and updates to the policy as well as specific recommendations. There have also been legal challenges over elements of the preventive services requirement, including in the pending case, Braidwood Management Inc. v. Becerra. This fact sheet summarizes the federal requirements for coverage for preventive services in private plans, major updates to the requirement, and recent policy activities on this front.

ACA Requirements for Coverage of Preventive Services

Under Section 2713 of the ACA, private health plans must provide coverage for a range of recommended preventive services and may not impose cost-sharing (such as copayments, deductibles, or co-insurance) on patients receiving these services.¹  These requirements apply to all private plans—fully insured and self-insured plans in the individual, small group, and large group markets, except those that maintain “grandfathered” status. In 2019, 13% of workers covered in employer sponsored plans were still in grandfathered plans. The requirements also apply to the Medicaid expansion eligibility pathway.

The required preventive services come from recommendations issued by four expert medical and scientific bodies—the U.S. Preventive Services Task Force (USPSTF), the Advisory Committee on Immunization Practices (ACIP), the Health Resources and Services Administration’s (HRSA’s) Bright Futures Project, and the HRSA-sponsored Women’s Preventive Services Initiative (WPSI). Individual and small group plans in the health insurance marketplaces are also required to cover an essential health benefit (EHB) package—that includes the full range of preventive requirements described in this fact sheet.

Clinical Preventive Services for Adults and Children

The ACA requires private plans to cover the following four broad categories of services for adults and children (summarized in Tables 1 and 2):

I. Evidence-Based Screenings and Counseling

Insurers must cover evidence-based services for adults that have a rating of “A” or “B” in the current recommendations of USPSTF, an independent panel of clinicians and scientists commissioned by the federal Agency for Healthcare Research and Quality. An “A” or “B” letter grade indicates that the panel finds there is high certainty that the services have a substantial or moderate net health benefit. The services required to be covered without cost-sharing include screenings for depression, diabetes, obesity, various cancers, and sexually transmitted infections (STIs), prenatal tests, medications that can help prevent HIV, breast cancer, and heart disease, as well as counseling for drug and tobacco use, healthy eating, and other common health concerns. The effective date for a new recommendation from USPSTF is considered to be the last day of the month in which it is published or otherwise released.

II. Routine Immunizations

Health plans must also provide coverage without cost-sharing for immunizations that are recommended and determined to be for routine use by the ACIP, a federal committee comprised of immunization experts that is convened by the Centers for Disease Control and Prevention (CDC). A new ACIP recommendation is considered to be issued on the date that it is adopted by the Director of the CDC. The preventive services guidelines require coverage for adults and children and include immunizations such as influenza, meningitis, tetanus, HPV, hepatitis A and B, measles, mumps, rubella, varicella, and COVID-19. With regard to the COVID-19 vaccine, Congress waived the typical one year delay in implementation and required private insurance plans to begin full coverage 15 days after ACIP recommendation. Going forward, any COVID-19 vaccine recommended by ACIP, including updated boosters, will continue to be fully covered for people enrolled in non-grandfathered plans starting 15 days after the vaccine is recommended by ACIP, irrespective of whether the vaccine is under an emergency use authorization or fully approved by the FDA.

III. Preventive Services for Women

In addition to the recommendations issued by USPSTF and ACIP, the ACA authorized HRSA to make coverage requirements for women for services not addressed by the other recommending bodies. HRSA turns to evidence-based recommendations issued by the Women’s Preventive Services Initiative (WPSI), to identify gaps in recommendations for women and review the evidence regarding the effectiveness of the recommendations. Current recommendations include well-woman visits, all FDA-approved, -granted, or -cleared contraceptives and related services, breastfeeding support and supplies, broader screening and counseling for a range of conditions, including intimate partner violence, urinary incontinence, anxiety, STIs and HIV. Some of the HRSA recommendations for women are similar to recommendations from USPSTF, but with slight variations in the population that is addressed.

Table 1 summarizes the full slate of adult preventive services subject to the preventive services coverage requirements.

IV. Preventive Services for Children and Youth

In addition to services for adults, the ACA requires that private plans cover without cost-sharing the preventive services recommended by the HRSA’s Bright Futures Project, which provides evidence-informed recommendations to improve the health and wellbeing of infants, children, and adolescents. The preventive services covered for children and adolescents include well child visits, immunization and screening services, behavioral and developmental assessments, fluoride supplements, and screening for autism, vision impairment, lipid disorders, tuberculosis, and certain genetic diseases. immunization and screening services, behavioral and developmental assessments, fluoride supplements, and screening for autism, vision impairment, lipid disorders, tuberculosis, and certain genetic diseases.

Table 2 summarizes the full slate of preventive services for children and adolescents.   

Coverage Rules and Clarifications

The recommending bodies periodically issue new recommendations and update existing ones based on advances in research. Plans are required to provide full coverage for new and updated recommendations one year after the latest issue date, beginning in the next plan year.²  If a recommendation is changed during a plan year or a new recommendation is issued, an issuer is not required to make changes in the middle of the plan year, unless one of the recommending bodies determines that a service is discouraged because it is harmful or poses a significant safety concern.³  In these circumstances, federal guidance will be issued. There are limited circumstances under which insurers may charge copayments and use other forms of cost-sharing for preventive services:

• If the primary reason for the visit is not the preventive service, patients may have to pay for the office visit. For example, if an adult man sees a clinician for ongoing management of a chronic condition such as diabetes and also receives a COVID vaccine at that appointment, the plan may charge a co-payment for the office visit but may not charge for the vaccine, which is a recommended preventive service.
• If the preventive service is performed by an out-of-network provider when an in-network provider is available to perform the service, insurers may charge patients for the office visit and the preventive service. However, if an out-of-network provider is used because there is no in-network provider able to provide the service then cost-sharing cannot be charged.
• If a treatment is given as the result of a recommended preventive service, but is not the recommended preventive service itself, cost-sharing may be charged in some cases. For example, the USPSTF recommends a CT scan for some adults to screen for lung cancer. If cancer is detected during the scan, treatments such as surgery or medication may be prescribed. While plans must cover the screening test services in full, they may charge for the treatments.

The Public Health Service Act (PHSA) and federal regulations also allow plans to use “reasonable medical management” techniques to determine the frequency, method, treatment, or setting for a preventive item or service to the extent it is not specified in a recommendation or guideline. While there is no formal regulatory definition or parameters for reasonable medical management, medical management techniques are typically used by plans to control cost and utilization of care or comparable drug use. For example, plans can impose limits on number of visits or tests if unspecified by a recommendation, cover only generics or selected brands of pharmaceuticals, or require prior authorization to acquire a preferred brand drug. If a plan makes any material modifications that would affect the content of the plan’s Summary of Benefits and Coverage (SBC) during the plan year, the plan must notify enrollees of the change at least 60 days before it takes effect.

Since the policy took effect, a number of questions have arisen about how plans should implement the preventive services policy and the extent to which plans can use medical management practices to limit the frequency, range of covered services, and the types of providers that are subject to the policy. Over the years, the Departments of Health and Human Services, Labor, and Treasury have jointly issued a number of clarifications as” about different aspects of coverage of preventive services.

Notable highlights from clarifying documents include:

• Colon cancer screening – USPSTF recommends screening for colorectal cancer in adults ages 45-75 using either stool-based testing or procedural screening, such as sigmoidoscopy or colonoscopy. There have been some cases of insured asymptomatic patients being charged unexpected cost-sharing for anesthesia and polyp removal during screening colonoscopies. The federal government has clarified multiple times that insurers must cover the full cost of medically necessary anesthesia services, polyp removal and related pathology performed in connection with a preventive colonoscopy in asymptomatic individuals, and follow up colonoscopies in the event of positive findings on stool-based tests, CT, or sigmoidoscopy.
• Well-woman visits – The HRSA clinical preventive services for women include coverage for at least one well-woman preventive care visit for adult women. WPSI has clarified that a series of well-woman visits may be required to fulfill all necessary preventive services and should be provided without cost-sharing as needed, determined by clinical expertise. Furthermore, the most recent recommendation states that prenatal visits are considered well woman visits, as are pre-pregnancy, postpartum, and interpartum visits WPSI has also published recommendations for services to be provided as part of well woman care.
• Testing and medications for the risk reduction of breast cancer – Federal guidance reinforces the USPSTF recommendation that women with family history of breast, ovarian, or peritoneal cancer should be screened for BRCA-related cancer, and those with positive results should receive genetic counseling and testing without cost-sharing when the services are medically appropriate and recommended by her provider. USPSTF also recommends the provision of chemo-preventive medications, such as tamoxifen and raloxifene, for women who are at increased risk for breast cancer and at low risk for adverse effects.
• Special populations – Some of the recommendations subject to the preventive services requirement apply to a certain population, such as “high risk” individuals. The government has clarified that it is up to the health care provider to determine whether a patient belongs to the population in consideration and that plans must cover services accordingly. An individual’s sex assigned at birth or gender identity also cannot limit them from a recommended preventive service that is medically appropriate for that individual; for example, a transgender man who has breast tissue or an intact cervix and meets other requirements for mammography or cervical cancer screening must receive those services without cost sharing regardless of sex at birth.
• Contraceptive coverage – Contraceptive services and supplies for women is one of the recommendations from HRSA, and since it was first issued there have been numerous federal clarifications. Plans must cover without cost sharing at least one product within each FDA-approved, granted, or cleared contraceptive method for women as prescribed. In addition to covering the cost of the contraceptive supplies, plans must cover related counseling, insertion, removal, and follow up services. While insurers may use reasonable medical management to limit full coverage to generic drugs within a method category, federal clarifications also state that plans must cover any contraceptive if deemed “medically necessary” by a health care provider. This means that plans must cover the following: brand name drugs if a generic is not available, a clinician-recommended brand name product, and contraceptive products that are not specifically identified by HRSA, such as new contraceptive products approved by the FDA. Some plans may choose to cover only one product within a category of contraceptives that has other therapeutic equivalent products. If this is the case, the plan must have a process in place to make exceptions for an individual who wants to access a therapeutic equivalent product if it is determined to be medically necessary by the individual’s clinician.  Any “exceptions process” must be accessible and timely for patients and providers to request coverage for a medically necessary contraceptive.
• Houses of worship have always been exempted from the contraceptive requirement, and religiously affiliated nonprofit employers have had an accommodation if they have a religious objection to contraceptives. Some employers have challenged this regulation, claiming the accommodation offered by the government (where the method is covered by their plan but they are not required to pay towards its coverage as part of the premium) makes them complicit in the provision of contraception, a service they object to on religious or moral grounds. The federal policy regarding contraceptive coverage requirements for employer plans has undergone multiple changes in federal regulations and been contested in numerous legal cases, including three that reached the Supreme Court. The current regulations were issued during the Trump Administration and exempt nearly any employer that claims to have a religious or moral objection from providing contraceptive coverage.
• Coverage for HIV Preexposure Prophylaxis (PrEP) – In June 2019, PrEP, medications which can help prevent HIV, received an “A”’ grade recommendation from the USPSTF as “effective antiretroviral therapy to persons who are at high risk of HIV acquisition.” Plans or policy years beginning on or after June 30, 2020, must cover PrEP (consistent with the USPSTF recommendation) without cost sharing. Federal guidance clarified that plans and insurers must also cover ancillary and support services for PrEP, such as adherence counseling and risk-reduction strategies, without cost sharing, and cannot use reasonable medical management techniques to restrict access to these services.

Impact of the Preventive Services Rules

The federal HHS Assistant Secretary for Planning and Evaluation (ASPE) estimates that in 2020, approximately 151.6 million people (58 million women, 57 million men, and 37 million children) currently are enrolled in non-grandfathered private health insurance plans that cover preventive services with no-cost sharing. Research has documented the impact of the policy on access to care in some areas, including utilization of cancer screening and contraceptives.

The evidence on cancer screening utilization after the elimination of cost-sharing is mixed and varies by cancer type. Some studies have shown that while screening rates for colorectal cancer among privately insured individuals increased since the passage of the ACA, rates for Pap testing decreased. However, it is difficult to assess the impact of the coverage provision since the recommendations for cervical cancer screening have been revised since the policy went into effect. Screening rates for breast cancer remained stable, though one study found that mammography screening among African American women significantly increased after ACA implementation. Likewise, the elimination of cost-sharing is associated with increases in BRCA genetic testing which helps identify women who are at elevated risk for breast and ovarian cancer. Studies have also indicated that increased access to and affordability of preventive services has helped cancer survivors obtain necessary care.

Several studies found that the contraceptive coverage requirement under the ACA has dramatically reduced OOP spending for contraceptives, including OOP spending for oral contraceptives (Figure 2). Multiple studies have shown increases in utilization for short-term birth control methods such as birth control pills, patches, and diaphragms. Studies have found that utilization of long-acting reversible contraceptives (LARCs), such as intrauterine devices (IUDs) and implants, increased after ACA implementation. Additional research also shows that OOP costs for LARCs—some of the most effective forms of pregnancy prevention—were also reduced under the ACA. These findings suggest that the lowered OOP costs from the contraceptive coverage requirement has improved contraception use and adherence.

The preventive services coverage policy has become an established part of health coverage for most people in the United States. Yet, the policy is currently facing legal challenges, notably in the case Braidwood Management Inc v. Becerra. The outcome of the latest legal challenge could affect whether people will continue to have full no-cost coverage for recommended preventive services in the future.

1. Note that the rules described in this fact sheet apply to private insurers, self-insured employer plans, and are separate from preventive requirements for public programs like Medicare or Medicaid. ↩︎
2. The final issue date for new or updated recommendations varies by recommending body. Recommendations are considered to be issued on the last day of the month on which the USPSTF publishes or releases the recommendation; recommendations from ACIP are considered issued on the date it is adopted by the Director of the CDC; and a recommendation or guideline supported by HRSA is considered to be issued on the date on which it is accepted by the Administrator of HRSA or, if applicable, adopted by the Secretary of HHS. Federal Register, Vol. 80, NO. 134, July 14, 2015. ↩︎
3. These circumstances include downgrade of a USPSTF service from a rating of “A” or “B” to “D” (which means that USPTF has determined that there is strong evidence that there is no net benefit, or that the harms outweigh the benefits, and therefore discourages the use of this service), or a service is the subject of a safety recall or otherwise determined to pose a significant safety concern by a federal agency authorized to regulate that item or service. ↩︎

About a third (32%) of the public view racism as a major problem in health care, fewer than say the same about politics (56%), the criminal justice system (54%), and policing (51%), a new KFF report on the public’s views of racism finds. The lower levels of perceived racism in health care may reflect high levels of trust in doctors and health care providers across racial and ethnic groups.

Overall, Black adults are much more likely than White adults to say racism is a major problem in each of these areas, while Hispanic, Asian, and American Indian and Alaska Native adults are generally somewhat more likely than White adults to say so.

Partisanship is one of the strongest predictors of views of racism in U.S. society, with White Democrats much more likely than White Republicans to see racism as a major problem across each aspect of society asked about in the survey. Among Republicans, Black, Hispanic and Asian adults are more likely than White adults to say racism is a major problem.

People who report experiencing racism or discrimination in their daily lives are much more likely to say racism is a major problem across different aspects of society, including in health care. 

For example, among all adults, those who say they were treated unfairly or with disrespect by a health care provider recently are much more likely than those who haven’t to say racism is a major problem in health care (49% and 28%, respectively). The same pattern holds for Black adults (74% and 46%), Hispanic adults (58% and 30%), and Asian adults (48% and 33%).

Despite differences in views of racism in health care, about 7 in 10 adults across racial and ethnic groups say they trust doctors and health care providers to do what is right for them and their community all or most of the time. 

Black adults, those with darker skin color, and adults who report experiencing unfair treatment in a health care setting are less likely than their counterparts to trust health care providers. Among Black and Asian adults, those who mostly visit health care providers who share their racial identity are more likely to say they trust providers than those who don’t.

The new report draws on data from KFF’s 2023 Survey on Racism, Discrimination and Health, which documents the extent and implications of racism and discrimination in society, including in people’s interactions with the health care system.

KFF also released two additional reports—one on racial disparities in access to medical advancements and technologies and another that examines how the history of policies and events have contributed to disparities, which builds upon an interactive timeline exploring history’s impact on health disparities.

The KFF Survey on Racism, Discrimination and Health is a probability-based survey conducted online and via telephone with a total of 6,292 adults, including oversamples of Hispanic, Black, and Asian adults conducted June 6-August 14, 2023. Respondents were contacted via mail or telephone; and had the choice to complete the survey in English, Spanish, Chinese, Korean, or Vietnamese. Survey methodology was developed by KFF researchers in collaboration with SSRS, and SSRS managed sampling, data collection, weighting, and tabulation. The margin of sampling error is plus or minus two percentage points for results based on the full sample; three percentage points for results based on Hispanic adults (n=1,775), Black adults (n=1,991) or White adults (n=1,725); five percentage points for results based on Asian adults (n=693); and eight percentage points for results based on American Indian and Alaska Native adults (n=267). 

KFF recently updated its interactive dashboard with national and state data on women’s health, as well as information about various policies that affect women’s health.

The dashboard provides instant access the most up-to-date state level indicators of women’s health in the U.S. Many of the indicators also provide national and state-level information for women of different racial and ethnic groups.

Dashboard topics include:

• Abortion availability, coverage, and use by race/ethnicity.
• Maternal and infant mortality, preterm births, teen births, and Medicaid eligibility policies for pregnancy-related care.
• Health coverage and use of preventive services such as mammograms and pap smear
• Contraceptive coverage policies under Medicaid and state-regulated insurance plans.
• Health status, including mental health.
• HIV rates and other chronic conditions including hypertension, diabetes, and cancer rates.

Each chart or graph is available for download or sharing on social media.

Introduction

Racial and ethnic disparities in health outcomes remain persistent in the United States, driven by inequities in access to and utilization of health care services and broader social and economic factors that reflect historic and ongoing racism. Given higher rates of certain illnesses among people of color, they could disproportionately benefit from medical advancements such as new drugs and therapies. However, they face increased barriers to accessing new drug therapies and treatments due to lack of diversity in clinical trials and structural barriers, including financial barriers. These disparities in access to medical advancements may further exacerbate racial disparities in health outcomes and life expectancy. This brief provides an overview of diversity in clinical trials, disparities in access to novel drug therapies and other treatments, and the implications for health and health care.

Diversity in Clinical Trials

Diverse racial and ethnic representation in clinical trials is important because drugs, vaccines, and other therapies can differentially affect groups due to variations in underlying experiences and environmental exposures. Clinical trials are research studies that determine whether medical products like medicines, vaccines, or devices are safe and effective. It is important that participants in clinical trials represent the future users of these medical products as responses to them may vary across patient groups by factors such as gender, race, ethnicity, and age because of variations in underlying experiences and environmental exposures. Having the demographics of clinical trial participants mirror the population intended to use the product can help to ensure its effectiveness and safety across patients, which may help improve health outcomes of the overall population. Racial and ethnic diversity in clinical trials also is important for building confidence in the effectiveness of new treatments. For example, research shows that Black people are more likely to have confidence in a new treatment when the trial had a greater representation of Black people.

Access barriers, lack of information, and historic and ongoing structural racism and discrimination contribute to the underrepresentation of people of color in clinical trials. People of color face an array of structural access-related barriers to participating in clinical trials. For example, fewer clinical trials are available through under-resourced hospital systems where people of color are more likely to receive care, and people of color may be less likely to be eligible to participate in trials if being uninsured or having comorbidities excludes individuals from participation. Other access challenges like limited transportation options, inflexible work schedules, and lack of access to technology may also impede participation. Beyond access barriers, knowledge gaps contribute to underrepresentation. Research indicates that physicians are less likely to discuss trials with patients of color. In addition, some patients are denied coverage for services rendered under clinical trials by their health coverage plans. Research shows that increases in education and understanding of clinical trials are associated with increased interest in participating in clinical trials. Further, ensuring enrollment efforts are culturally sensitive and addressing language and health literacy differences is important. Historical medical abuses of people of color as well as ongoing racism and discrimination may also foster reluctance among people of color to engage in clinical trials. However, research suggests that many people of color are willing to participate in clinical trials when provided the opportunity to do so.

There have been growing efforts to increase diversity in clinical trials. The National Institutes of Health (NIH) has longstanding guidelines on the inclusion of women and other underrepresented groups in clinical research and identified representative participation of underrepresented groups in NIH-funded research as a goal of its Minority Health and Health Disparities (NIHMD) 2021-2025 strategic plan. The NIMHD sponsors funding opportunities to increase the enrollment of people of color into clinical trials. The Food and Drug Administration (FDA) has a public education campaign, collaborates with stakeholders, provides clinical trial information in a variety of languages, and has identified actionable steps to improve diversity in clinical trials. It also has provided guidelines on the collection of race and ethnicity data in clinical trials and, in 2022, issued draft guidance to the industry for developing plans to increase diversity in clinical trials. During the development of the COVID-19 vaccines, the FDA offered nonbinding industry recommendations that strongly encouraged “enrollment of populations most affected by COVID-19, specifically racial and ethnic minorities.” Pfizer and Moderna made efforts to include people of color in their COVID-19 vaccine trials, and historically Black colleges and universities encouraged participation in their communities. At the industry level, the Pharmaceutical Research and Manufacturers of America implemented an Equity Initiative in 2022. It has engaged in with academic centers, community organizations, and other health partners to launch Equitable Breakthroughs in Medicine Development, a collaboration that seeks to pilot a network of sustainable, connected, and community-based trial sites.

Research suggests that collaborating with community clinicians may help increase diversity in clinical trials. It is suggested that engaging community clinics in clinical research could enhance diversity since they have established, trusted relationships with patients and can reduce accessibility and enrollment barriers for patients. A recent survey of leadership at community health centers, which serve disproportionate shares of low-income people and people of color, found that most responding health centers are interested in conducting research but face time and workforce constraints to participating in research. However, some collaborate with other organizations, such as academic institutions, to conduct this research, allowing for varied stakeholder strengths and perspectives to inform it.

Despite efforts to increase diversity, people of color remain underrepresented in clinical trials and other medical development research. Analysis finds that more than half of U.S. trials listed on ClinicalTrials.gov between 2000 and 2020 did not report enrollment data by race and ethnicity, although the share reporting any racial and ethnic enrollment data increased over time. The analysis further shows that, although there were modest improvements in diversity of trial participants over time, among trials that reported racial and ethnic data, people of color continued to be underrepresented relative to their share of the population. Between 2000 to 2020, the median enrollment of Hispanic (6%), Asian (1%), and American Indian and Alaska Native (AIAN) (0%) people was lower compared to their makeup of the total U.S. population based on the 2010 Census (Figure 1). The median enrollment of Black people was not statistically significantly lower than their share of the population as of 2010, but 21% of trials reported zero Black enrollees. Conversely, White people were overrepresented in clinical trials, with a median enrollment of 80%, and 10% of trials reported 100% White enrollees. Given that the U.S. population became more racially and ethnically diverse between 2010 to 2020, this overrepresentation has persisted. The analysis further found that industry-funded trials were associated with less racial and ethnic reporting and lower rates of enrollment of people of color compared with U.S. government-funded trials even after controlling for differences in features of the trials.

Other analysis of FDA drug approvals from 2014 to 2021 found that the median representation of Black participants was one-third of the disease burden in the population and no increases in their representation relative to White participants over the period. Even in clinical trials for COVID-19 vaccinations, which demonstrated relatively better diversity, publicly accessible data still indicated an overall underrepresentation of people of color compared to their proportion of the total U.S. population, with Black individuals having the largest disparity in representation.

Disparities in Access to New Drugs and Therapies

Lack of diversity in clinical trials may exacerbate existing disparities in treatment access for people of color. The lack of diversity in clinical trials may limit access to new drugs and therapies as their approval and indications may be limited to the populations included in the studies and clinical guidelines and insurance reimbursement may be limited by the lack of data for certain populations. For example, in 2021, the U.S. Preventive Services Task Force indicated it was unable to make specific colorectal cancer screening guidelines for Black people despite them having the highest incidence and mortality rates from colorectal cancer, due to the lack of representative cancer screening studies.

New drugs and therapeutics often have high out-of-pocket costs which may lead to disproportionate access barriers among people of color. Newly developed drugs and treatments often come with high costs that reflect development costs. In some cases, these treatments are not covered by insurance, and even when they are, they may still have high out-of-pocket costs. Patient discounts for drugs may be available but access to them may be varied and could become more limited. Due to underlying social and economic inequities, people of color are more likely than their White counterparts to be uninsured and have lower incomes meaning they likely face disproportionate cost barriers to these drugs and treatments. At the same time, people of color have worse health outcomes and higher rates of certain conditions, suggesting they potentially could disproportionately benefit from new drugs and treatments. For example:

• The recently FDA-approved Alzheimer’s drug Leqembi has a current list price of $26,500. Even though it is covered by Medicare, Medicare patients administered the drug face more than $5,000 in out-of-pocket costs per year, based on a 20% coinsurance requirement in traditional Medicare, although those with supplemental insurance may have lower costs. With higher rates of dementia and lower incomes among older Hispanic and Black adults than their White counterparts, the high cost of treatment could raise equity concerns if Black, Hispanic, and other underserved beneficiaries are less likely to gain access to this treatment because they can’t afford it.
• Similarly, the emergence of new medications for obesity treatment has raised questions about who can access them and the potential impacts on racial health disparities. Access to these medications varies and they remain unaffordable for many individuals given that they currently are excluded from Medicarecoverage, coverage through Medicaid and private plans remains limited, and out-of-pocket costs without coverage can be in excess of $1,300 per month. Although most people with obesity are White, many people of color are at increased risk for obesity, meaning they could benefit from new treatment options. However, they also are more likely than their White counterparts to face barriers to affording and accessing the new medications.
• Concerns have also been raised surrounding access to new gene therapies for sickle cell disease, an illness that disproportionately impacts Black and Hispanic people. While gene therapies provide the opportunity for a highly effective one-time treatment, they come with a hefty price point—gene therapy prices for a one-time use can cost more than $2 million.

Biases in clinical decision-making processes and technologies and limitations in access to providers may also create disproportionate access barriers for people of color. Clinical algorithms and other decision-making tools are used by physicians to guide clinical diagnoses and inform treatment plans. People of color may be less likely to receive prescriptions for effective therapies due to decision making processes that incorporate race in clinical algorithms and treatment guidelines. Research has shown that these algorithms and tools may have racial bias because the underlying data on which they are trained may be biased and/or may not reflect a diverse population. For example, recent research shows that pulse oximeters have lower accuracy for patients with darker skin. Heightened attention to this issue during the COVID-19 pandemic prompted the FDA to consider how to improve studies used to assess their performance. Differences in access to providers, including specialists who may have greater knowledge about new therapies, may also create access barriers as well as concerns about utilizing newly developed drugs or therapies given the legacy of medical system abuses. For example, analysis from 2022 shows that Black and Hispanic patients were 36% and 30%, respectively, less likely to receive nirmatrelvir-ritonavir (Paxlovid) treatment than White patients for COVID-19. Researchers suggested these disparities likely reflected more limited access to COVID-19 treatment facilities; potential prior negative experiences with the health care system, racism, or implicit bias among providers; as well as social and economic factors such as limited knowledge of treatment options, limited technology access, limited transportation, and/or language barriers.

Implications and Key Issues Looking Ahead

While some efforts are being made to mitigate disparities in access to new drugs and therapies, continued actions will be important going forward for preventing widening disparities.

As noted above, there are ongoing efforts to increase diversity in clinical trials. Under the Food and Drug Omnibus Reform Act, which was enacted as part of the Consolidated Appropriations Act of 2023, the FDA will require diversity action plans for certain clinical trials that specify enrollment goals to address historical underrepresentation of certain groups. The FDA has existing draft guidance that provides recommendations on diversity action plans. Under the legislation, the FDA can update or issue new guidance to implement the action plan requirements.

Expanding coverage for new drugs, treatments, and therapies could mitigate some financial access barriers, but disparities in financial barriers may still persist. A bipartisan group of lawmakers introduced the Treat and Reduce Obesity Act, which would authorize Medicare Part D coverage of medications when used for the treatment of obesity or weight loss management in overweight individuals with related comorbidities. As of July 2023, sixteen states reported Medicaid Fee-For-Service coverage of at least one weight-loss medication for the treatment of obesity for adults. The newly developed Alzheimer’s drug, Leqembi, already is covered by Medicare for all indicated populations. Having coverage available for these new drugs may help address some disparities in financial access barriers. However, even with coverage, uninsured individuals would continue to face financial barriers and some covered individuals may continue to face substantial out-of-pocket costs, leaving treatments unaffordable.

Prioritizing equity in access to new treatments is of increasing importance amid the growing use of clinical algorithms and artificial intelligence (AI) to guide health care. As use of AI grows in health care, it will be important to ensure that algorithms do not perpetuate disparities and biases through the use of race or due to biases in the underlying data upon which they rely. Research further suggests that if carefully designed, algorithms could mitigate bias and help to reduce disparities in care. There have been recent federal and state level efforts to reduce and protect against bias in the use of AI and clinical algorithms. The FDA proposed a framework to monitor and evaluate the use, safety, and effectiveness of AI, which includes a focus on improving methods to identify, evaluate, and address algorithmic bias. In 2022, the Department of Health and Human Services (HHS) issued a proposed rule that prohibits discrimination through the use of decision-making clinical algorithms, although researchers have noted that the proposed rule does not offer specific guidelines on how to prevent discrimination and that there are a wide range of potential strategies available for reducing bias in clinical algorithms. In December 2023, HHS finalized a rule that implements new transparency requirements for clinical decision support tools and algorithms to ensure users have access to a baseline set of information that supports their ability to assess their “fairness, appropriateness, validity, effectiveness, and safety.” At the state level, at least eleven states have begun regulating the use of AI and algorithms in health care in an effort to mitigate instances of discrimination. In early 2023, the Coalition for Health AI released guidance for the implementation of AI to increase trustworthiness and transparency in AI tools that centers equity, fairness, and ethics. The guidance includes recommendations on developing a common set of principles to guide the development and use of AI tools and a coalition or advisory board to help ensure equity and facilitate trustworthiness in health-related AI.

Today’s health and health care disparities are rooted in a long history of U.S. policies and events and reflect the ongoing impacts of racism at multiple levels, including in systems, structures, policies, and interpersonal interactions. Understanding this past and how it shapes present-day disparities can help inform and guide efforts to address them. It also is important to recognize the resilience of marginalized people in the face of these challenges and disparities and to consider how to build on their strengths by prioritizing community engagement and leadership to mitigate disparities and improve overall health and well-being. This brief examines how past policies and events are linked to present-day disparities among Black people in health care and health outcomes. It is based on KFF’s interactive timeline of How History Has Shaped Racial and Ethnic Health Disparities and KFF’s 2023 Racism, Discrimination, and Health Survey.

Today, Black people face persistent disparities in health care and health outcomes. These include higher uninsured rates, being more likely to go without care due to cost, and worse reported health status (Figure 1). Their life expectancy is nearly five years shorter compared to White people (72.8 years vs. 77.5 years). Black infants have a more than two times higher infant mortality rate than White infants (10.6 per 1,000 v. 4.4 per 1,000 as of 2021), and Black people are nearly three times more likely than White people to die due to pregnancy-related reasons (39.9 vs. 14.1 per 100,000 live births between 2017-2019).

Health and health care disparities faced by Black people today are rooted in and reflect historic racist and discriminatory practices and beliefs. Race is a social construct and there are no biologic differences by race. However, many historic policies and events were rooted in since disproven beliefs about biologic differences by race and white supremacy. These inaccurate beliefs contributed to false ideas, such as Black people feeling less pain than White people, and to historic abuses and mistreatment of Black people by the medical system. For example, in the 1800s doctors experimented on enslaved Black women to develop new surgical techniques, low-income women of color were subjected to forced sterilization during the early 1900s, and the federal government left poor Black men untreated for syphilis to study the disease progression under the infamous 40-year U.S. Public Health Service Untreated Syphilis Study at Tuskegee that began in 1932.

Although science has since disproven these theories, these beliefs continue to permeate the U.S. health care system today. As recently as 2016, a study found continued widespread beliefs among White medical students, residents, and laypeople in biologic differences between Black and White people, including believing that Black people have thicker skin than White people or that their blood coagulates more quickly. Race also continues to play a role in medical education and clinical decision making through provider attitudes and biases, disease stereotyping and nomenclature, and as part of clinical algorithms, tools, and treatment guidelines.

This history also continues to be reflected in people’s experiences seeking health care. A 2023 KFF survey found that Black adults are more likely than their White peers to say they were treated unfairly or with disrespect by a health care provider due to their race and ethnicity and to report certain negative experiences, including being refused pain medication they thought they needed or having a request or question ignored (Figure 2). Over half of Black adults say they feel they must be very careful about their appearance to be treated fairly during health care visits, and roughly three in ten say they prepare for possible insults from providers or staff during health care visits. Reflecting these experiences, Black adults are more likely than White adults to view racism as a major problem in health care and less likely to say they trust providers to do what is right for them and their community, although the majority still trust doctors and health care providers to do what is right at least most of the time.

Research suggests that having a more diverse health workforce may help to address some of these challenges. KFF 2023 survey data show that Black adults who have more visits with providers who share their racial or ethnic background report more positive provider interactions (Figure 3). They also are more likely to trust doctors and other health care providers to do what is right for them and their community all or most of the time. Other research suggests that patient and provider racial concordance may contribute to improved health care use and health outcomes including lower emergency department use, reductions in racial disparities in mortality for Black infants, and increased visits for preventative care and treatment. However, Black adults are less likely than White adults to have most of their visits with a provider who has a shared background due to underrepresentation in the health care workforce.

The lack of diversity in the health care workforce today is rooted in historic actions. Prior to desegregation of public education, colleges and universities were established to educate Black students, and, by the late 19th century, there were seven medical colleges focused on training Black doctors. In 1910, the Flexner report, a study funded by the American Medical Association and the Carnegie Foundation to assess the state of medical education in the U.S. and Canada, was issued. The report recommended closing most of the historically Black medical schools, resulting in just two surviving—Meharry Medical College and Howard University. The number of Black physicians declined in the wake of these closures, and despite actions in more recent years to increase diversity of medical students, Black physicians remain underrepresented relative to their share of the population. The 2023 Supreme Court ruling against the use of affirmative action policies in higher education could exacerbate this issue, with experts concerned that the ruling will erode progress in diversifying the health care workforce.

Beyond these experiences within the health care system, Black people face an array of underlying structural inequities in social and economic factors that are major drivers of health. One of the most significant factors is ongoing residential segregation. A large share of the Black population lives in urban areas that have less access to resources that support health and that pose more exposure to health risks. Today’s residential segregation reflects past policies—in particular, redlining. Under legislation passed in the 1930s, residential neighborhoods were graded based on their mortgage risk, with higher risk neighborhoods marked in red—the origin of the phrase “redlining.” One of the factors that determined this grading was the racial make-up of the community, with Black neighborhoods more likely to be redlined. This made it difficult for people living in and near Black neighborhoods to access mortgage loans, and at the same time Black families were blocked from buying homes in newly developing suburbs. While the Fair Housing Act passed in the 1960s eventually prohibited housing discrimination, by then many Black families were priced out of suburban neighborhoods due to rising housing prices.

Today’s housing patterns continue to reflect these past discriminatory policies and leave Black people facing increased health risks. As a result of ongoing residential segregation and disinvestment into areas where Black people are more likely to live, they are more likely to live in areas that have more limited educational and employment opportunities, more limited access to healthy food options, less access to green space, and more limited transportation options, which in turn make it more difficult to access health coverage and care and pursue healthy activities. Moreover, many of these areas pose increased environmental and climate-related health risks, including increased exposure to extreme heat, lead, pollution, and toxic or hazardous materials.

Looking ahead, Black people could disproportionately benefit from new medical advancements given higher rates of many health conditions, but they face increased barriers to accessing them. One contributing factor to this disparity is underrepresentation in clinical trials. This underrepresentation reflects structural access barriers such as more limited access to trials sites, less access to transportation or technology, and limited eligibility for trials, if being uninsured or having an underlying condition excludes individuals from participation. They may also have less knowledge of trials because physicians are less likely to discuss them with patients of color and/or have concerns or reluctance about participating in them due to the medical system’s historic abuse, and mistreatment of Black people. Black people also face disparities in accessing new drugs and therapies when they come to market. New drugs often have high out of pocket costs, which may create more financial barriers for Black people due to underlying inequities in coverage and income. Biases in clinical decision-making processes and limitations in access to providers may also inhibit access.

As clinical algorithms and artificial intelligence are increasingly used to guide clinical care and treatment decisions in health care, it will be important to assess how they may impact disparities. Algorithms can lead to biases in treatment. For example, some have historically incorporated race as a factor in ways that contribute to disparities in treatment. One of the most well-known examples of this practice is the use of different measures to test kidney function for Black patients; a practice which is beginning to be phased out at many institutions. Algorithms may also result in biased treatment if they are built on underlying data that are biased or that are not representative of a diverse population. However, there is the opportunity for carefully designed algorithms to reduce bias in treatment and care.

A new KFF analysis of provisional 2022 data from the Centers for Disease Control shows that the recent increases in firearm death rates among children and adolescents ages 17 and under were driven largely by gun assaults, which accounted for 66% of firearm deaths among young people in 2022, up from 54% in 2019.

Data also show that in 2022, seven children ages 17 and below per day died by firearm, similar to 2021. This caps a decade in which firearm death rates gradually rose until 2017, then slowed through 2019 before climbing sharply by 46% from 2019 to 2022. 

From 2012 to 2022, nearly 19,700 children ages 17 and younger died by firearm. The analysis shows that both the national rise in overall firearm-related deaths and those specifically involving gun assaults have disproportionately affected Black and Hispanic children and adolescents. In 2022, the rate of firearm deaths among Black youth was 12.2 deaths per 100,000 people – higher than any other racial and ethnic group and six times higher than White youth.

Additionally, since the onset of the pandemic, the gap in gun assault death rates between Black and White children and adolescents has significantly widened. As a result of worsening trends in firearm deaths, in 2022, Black youth accounted for 48% of all youth firearm deaths although they made up only 14% of the U.S. youth population. Exposure to gun violence disproportionately impacts Black youth and gun violence exposure is linked to poor mental health and substance use outcomes.

Overall, as in 2021, more children and adolescents in the U.S. now die by firearms than from any other single cause, including motor vehicle crashes. Compared to its peer countries, the U.S. has by far the highest rate of child and teen firearm mortality. 

Other key findings include:

• Male children and adolescents are over four times more likely than their female peers to die by firearm. From 2018 to 2022, the rate of deaths due to firearms increased by 50% among male children and adolescents but remained lower and stable among females.
• Among child and adolescent firearm deaths in 2022, 27% were due to suicides and 5% were accidental. Suicides by firearm have increased over the past decade among children and adolescents, peaking in 2021 with 827 deaths before declining to 686 deaths in 2022.
• Firearm death rates among children and adolescents vary by state; however, almost all states have seen a growth in these death rates in pandemic years. Louisiana, Mississippi, and the District of Columbia were the states or areas with the highest firearm death rates among children and adolescents, while Massachusetts, New Jersey, and New York were the states with the lowest. 
• Exposure to gun violence is linked to post-traumatic stress disorder and anxiety, in addition to other mental health concerns among youth. Gun violence may also lead to challenges with school performance, including increased absenteeism and difficulty concentrating.

Following recent news about former President Trump’s potential support for a national 16-week abortion ban, KFF examines the data about how often abortions later in pregnancy occur, exploring the potential reasons why, and detailing the various laws that regulate access to abortions later in pregnancy.

The updated analysis considers 2021 CDC data, before the Dobbs decision, in a post-Dobbs policy landscape. The analysis shows that abortions at or after 21 weeks are uncommon and represent 1% of all abortions in the U.S. Ninety-six percent occurred at or before 15 weeks gestation, while 3% occurred from 16 to 20 weeks gestation.

Notably, discussions about abortions occurring later in pregnancy are often fraught with misinformation; in fact, abortions occurring “moments before birth” or even “after birth” are illegal in the U.S. and do not occur.

KFF also looks at the other issues with abortions later in pregnancy, including the expense of the procedures, which often require travel and lost wages, and the lack of availability given that they are only performed by a fraction of abortion providers. Additionally, KFF explores why people seek abortions later in pregnancy, including medical concerns such as fetal anomalies, maternal health, or life endangerment, as well as barriers to care that cause delays in obtaining an abortion.

For more information, read the full brief.

Text and figures 1 and 5 were updated on July 23, 2024 to reflect policy updates in Maryland & Michigan. 

Introduction

Abortions occurring at or after 21 weeks gestational age are rare. They are often difficult to obtain, as they are only available in a handful of states, performed by a small subset of abortion providers and are typically costly and time-intensive. Yet, these abortions receive a disproportionate share of attention in the news, policy and the law. Discussions on this topic are often fraught with misinformation; for example, intense public discussions have been sparked after several presidential candidates claimed there were abortions occurring “moments before birth” or even “after birth.” In reality, these scenarios do not occur, nor are they legal, in the United States. Discussion of this topic is distorted and inflamed by the terminology that is sometimes used to describe abortions later in pregnancy— including “late-term,” “post-viability,” “partial birth,” “dismemberment” and “born-alive” abortions. There have been some news reports of former President and current Republican presidential candidate Donald Trump’s support of a national 16-week abortion ban that would eliminate access to abortions later in pregnancy except when the life of the pregnant person is in danger or the pregnancy is a result of rape/incest. This brief explains why individuals may seek abortions later in pregnancy, how often these procedures occur, and the various laws which regulate access to abortions later in pregnancy across the country.

What is a so-called “late-term” abortion?

“Late term” abortion typically refers to abortions obtained at or after 21 weeks, however it is not an accepted medical term, nor is there a consensus around to which gestational ages it refers. Members of the medical community have criticized the term “late-term” abortion, as it implies abortions are taking place after a pregnancy has reached “term” (37 weeks) or “late term” (>41 weeks) which is false. In fact, the American College of Obstetricians and Gynecologists (ACOG) has written that “late-term abortion” has no medical meaning. As such, this brief discusses abortions occurring at ≥21 weeks gestation as abortions later in pregnancy, but it should be noted that 21 weeks is a largely arbitrary cutoff based on how the CDC collects data on abortions. Abortions at this stage in pregnancy are sometimes referred to as “later abortions” by the medical community as well.

How do states restrict or regulate abortions later in pregnancy?

On June 24, 2022, in Dobbs v. Jackson Women’s Health, the Supreme Court overturned Roe and eliminated the federal constitutional standard that had protected the right to abortion. Without any federal standards, states can now set their own policies banning or protecting abortion at any point in pregnancy. This has drastically changed the landscape of abortion in the United States, as 14 states have now banned abortion at any stage of pregnancy and 11 others have gestational limits banning abortion after a certain point in pregnancy, such as before cardiac activity is detected in the fetus or up to a certain number of weeks of pregnancy.

However, in states without abortion bans or gestational bans before 22 weeks LMP, access to abortions later in pregnancy is often limited for many reasons, including viability bans, bans on certain abortion procedures, and a limited number of abortion providers who are trained or willing to provide abortions later in pregnancy. While viability, the point when a fetus can survive outside the womb, is no longer the federal standard that defines the legality of abortion in the U.S., 16 states that still allow abortions currently have laws restricting abortion at “viability” or at 24 weeks LMP / 3^rd trimester, when viability is presumed to occur (Figure 1). These states have abortion exemptions similar to the exemptions in abortion bans (such as to preserve the health or life of the pregnant person) and gestational limits, defining when an abortion is allowed to be performed after viability. Most of the 11 states that restrict abortions at “viability” define it as the point where a physician or other healthcare provider determines whether a fetus can survive outside the womb. Four of these states include language in their abortion policies defining viability as the point where there is a likelihood that the fetus could survive without the “application of extraordinary measures” and another three states have language clarifying the fetus could survive with or without extraordinary measures.

Some states have also passed laws banning clinicians from performing certain abortion procedures that are commonly used in later abortions (Figure 2). Almost all abortions performed at or after 21 weeks are performed by a dilation and evacuation (D&E) procedure (93–95% per CDC data). This involves dilating the cervix and evacuating the pregnancy tissue using forceps, with or without suction. D&Es can be performed safely up to at least 28 weeks gestational age, and when compared to their alternative of labor induction, have been found to be quicker and result in fewer complications; further, many individuals may prefer surgical management as they will be sedated and do not have to undergo labor and delivery of the fetus.

Nebraska has enacted a D&E ban, although the state also has a 12-week gestational ban. Nine states ban dilation and extractions (D&Xs), a rarely used abortion procedure also referred to as an intact D&E or a “partial birth abortion” by policymakers (Appendix Table 1).

In addition to gestational age limits and method bans used for abortions later in pregnancy, abortions later in pregnancy are subject to the same regulations that apply to abortions earlier in pregnancy, including mandatory waiting periods and physician and hospital requirements.

How common are abortions later in pregnancy?

Abortions occurring at or after 21 weeks gestation are rare. According to the CDC’s Abortion Surveillance Data for 2021, prior to the Dobbs decision, the vast number of abortions (96%) occurred at or before 15 weeks gestation, while 3% occurred from 16 to 20 weeks gestation, and just 1% of abortions were performed at or after 21 weeks (Figure 3). This amounts to approximately 4,100 abortions per year occurring at or after 21 weeks. However, this estimate only includes the 41 reporting areas that report abortions to the CDC by gestational age and excludes major states such as California and New York. The percentage of abortions occurring at or before 13 weeks gestation has remained stable over the last few decades at 91-92%, however within this timeframe, more abortions are occurring earlier in pregnancy, at or before 9 weeks. This is likely in part due to the greater availability of medication abortions over the last two decades.

The CDC does not elaborate on the breakdown by gestational age for abortions occurring past 21 weeks, but it is likely that the vast majority occur soon after 21 weeks rather than much later in the pregnancy. While very limited contemporary data exists on this issue, a study from 1992 estimated 0.02% of all abortions occurred after 26 weeks gestation (320 to 600 cases per year).

Preliminary findings from a study on abortion provision since the Dobbs decision has found that patients living in states where abortion is banned or restricted have experienced increased delays in obtaining abortion care, in part due to arranging out-of-state travel to states where abortion is legal and limited appointment availability in abortion clinics in states where abortion is legal. Out-of-state travel for abortion services doubled in the first half of 2023 compared to the first half of 2020, likely driven by the overturning of Roe. Delays in accessing abortion services push people who want an abortion further along in their pregnancies, which could lead to an increase in the share of people who need abortions later in pregnancy.

In addition, even if patients can travel to a different state to access later abortion services, there are a few clinicians who provide abortions later in pregnancy. This was the case even before the Dobbs decision. Researchers from Advancing New Standards in Reproductive Health (ANSIRH) found that in 2023, 60 clinics provided abortions at or after 24 weeks and five clinics provided services at or after 28 weeks, meaning that most individuals in need of abortions later in pregnancy often have to travel significant distances to find an available and trained provider.¹  A University of California San Francisco study found that compared to before Dobbs there was a slight increase in the number of abortion clinics that provide abortions after 24 weeks after the Dobbs ruling. Abortions at this stage also typically require two days to complete with inpatient care, as opposed to outpatient or at-home management that is possible earlier in pregnancy. Some facilities in the U.S. perform abortions later in pregnancy as outpatient procedures (up to certain gestational ages), but it is less common than offering inpatient care for these cases.

Why do people have abortions later in pregnancy?

Individuals seek abortions later in pregnancy for a number of reasons. As part of the Turnaway study out of the University of California San Francisco, from 2008-2010 over 440 women were asked about why they experienced delays in obtaining abortion care, if any (Figure 4). Almost half of individuals who obtained an abortion after 20 weeks did not suspect they were pregnant until later in pregnancy, and other barriers to care included lack of information about where to access an abortion, transportation difficulties, lack of insurance coverage and inability to pay for the procedure. A 2022 study of patients seeking abortions later in pregnancy found that they fell into two categories: either they had learned new information about their pregnancies that made them no longer desirable, such as not finding out they were pregnant until very late in the pregnancy or the emergence of serious fetal or their own health issue; or experiencing barriers to abortion services earlier in the pregnancy that force them to delay the abortion until the third trimester.

Delays Stemming from Financial Barriers to Abortion Access: Abortions can be cost-prohibitive for many; a study examining abortion costs in 2021 found that the median out-of-pocket self-pay costs for medication abortion services was $568, $625 for first trimester procedural abortions, and $775 for second trimester procedural abortions (range $465 to $2,885). These costs do not account for lodging and transportation costs, loss of work or childcare costs, which can drive the price higher. Third trimester abortion costs can range from a couple thousand dollars to over $25,000, depending on how far along the pregnancy is and how clinically complex it is. The Federal Reserve Board found 32% of U.S. adults do not have enough in savings to pay for a $400 emergency expense, meaning many individuals may need to delay having an abortion until they can raise the necessary funds.

Fetal Anomalies: Individuals also seek abortions later in pregnancy due to medical reasons. With medical advances, many genetic fetal anomalies can be detected early in pregnancy; for example, chorionic villus sampling can diagnose Down Syndrome or cystic fibrosis as earlier as 10 weeks gestation. Structural fetal anomalies, however, are often detected much later in pregnancy. As part of routine care, a fetal anatomy scan is performed around 20 weeks, which entails ultrasound imaging of all the developing organs. Many structural anomalies are discovered at this time that would not have been apparent previously. A proportion of these are lethal fetal anomalies, meaning that the fetus will almost certainly die before or shortly after birth, meaning the fetus may be nonviable (consensus does not always exist as to which anomalies are fatal, and thus nonviable). In these cases, many individuals wish to terminate their pregnancies, rather than risk carrying the pregnancy until the fetus or newborn passes away. Very often these pregnancies are desired, making this decision exceedingly difficult for parents. Inadequate data exist to know how many abortions later in pregnancy occur due to fetal anomalies, but a study by Washington University Hospital showed almost all women whose fetuses had lethal fetal anomalies chose to terminate their pregnancies. Three (Alabama, Indiana and West Virginia) of the fourteen states with abortion bans and five states with early gestational bans (Florida, Georgia, North Carolina, South Carolina, and Utah) currently have exceptions for pregnancies with lethal fetal anomalies, but it is unknown whether any abortions under these exemptions have occurred. Among the states with viability or near viability bans, Delaware, Maryland, Massachusetts and New Hampshire have exemptions for fetal anomalies. Pregnant people who reside in states where abortion is banned and with no fetal anomaly exceptions who are unable to travel out of state can be forced to carry their pregnancies to term and deliver infants who are stillborn or die shortly after birth.

A 2011 survey of maternal fetal medicine (MFM) doctors—specialists who manage pregnancies with fetal anomalies— found most agreed that termination of pregnancy due to a lethal fetal anomaly should be allowed in all circumstances (76%). The majority (75%) discuss abortion as a management option soon after diagnosing a lethal fetal anomaly, but services for terminating pregnancies in these scenarios are limited. Even over decade before the Dobbs decision, only 40% of MFM doctors worked at healthcare centers offering abortions past 24 weeks for lethal fetal anomalies. An additional 12% knew of available services <50 miles away.

Health Risk to the Pregnant Person: Life threatening conditions may also develop later in pregnancy. These include conditions like early severe preeclampsia, newly diagnosed cancer requiring prompt treatment, and intrauterine infection (chorioamnionitis) often in conjunction with premature rupture of the amniotic sac (PPROM). If these conditions occur in a state where abortion is legal, the pregnant individual may pursue termination of pregnancy to preserve their own health. All states that ban abortion, have gestational bans, or limit abortion at or near viability, have exceptions allowing for abortions to occur when the life of the pregnant person is in danger, and 34 states have exceptions for when the health of the pregnant person is at risk (Figure 5). Former President Donald Trump reportedly supports a 16-week national abortion ban with exceptions for when the life of the pregnant person is in danger and in cases for rape or incest, but the 16-week national ban would not have an exception for when the health of the pregnant person is at risk. It is likely that a ban such as this would be structured so that it would limit abortions in states that currently permit abortions later in pregnancy, but allow states with abortion bans or gestational restrictions to keep their laws in effect.

The legal standards states use to determine when a pregnant person qualifies for a life or health exception can be ambiguous, with some standards leaving physicians in a legally vulnerable position that allow a prosecutor to bring an expert witness to contradict the physician’s medical judgment. In a recent case out of Texas, Kate Cox, a pregnant women seeking an abortion, sought a court order that would have allowed her to have an abortion under the exceptions to the Texas abortion ban. Fearing prosecution for providing abortion care that she believed it fit under the abortion ban’s exception based upon her good faith medical judgement, Ms. Cox’s physician asked a Texas District Court to determine that providing the abortion was not a violation of the state’s ban. While the District Court agreed with the plaintiffs that the case qualified for an exception, the Texas state Attorney General wrote a letter to the hospital stating that his office would still enforce the state abortion ban if abortion care was provided. Consequently, the Texas Supreme Court overruled the lower district court, finding that the physician’s “good faith belief” was insufficient to qualify for the exception, and only abortions that are certified to be necessary under the “reasonable medical judgement” standard are allowable under Texas law.

In states where abortion is banned, there have been questions and confusion about how ill a pregnant person must be for an abortion under a health exception to be performed. There are reports of patients having health complications that are not life threatening at the moment they are seeking care, and being sent home and subsequently developing serious complications that do threaten their lives as a result. In Idaho, Indiana, Tennessee, and Texas, physicians and people who were denied abortion care despite facing pregnancy complications that jeopardized their health have filed lawsuits regarding harms experienced as a result of the lack of health exceptions in their respective state abortion bans. They are asking for courts to clarify the scope of the state bans’ health exceptions and for physician judgment in making determinations about abortion as a medical treatment for emergent conditions to be granted greater deference.

In July 2022, the Department of Health and Human Services (HHS) issued guidance regarding the enforcement of EMTALA (Emergency Medical Treatment and Active Labor Act), the law that requires hospitals that take Medicare enrolled patients to perform appropriate medical screening examination to any patient who presents at the emergency department and to provide stabilizing care to patients identified as having an emergency medical condition. The 2022 guidance clarifies that hospitals and physicians have obligations to provide stabilizing care, including abortion in medically appropriate circumstances, when a patient presenting at an emergency department is experiencing an emergency medical condition. Since the guidance was issued, HHS has sued the state of Idaho for their abortion ban, which did not contain exceptions for health, and the state of Texas has sued to block enforcement of the guidance in Texas. The two federal district courts that have considered this issue have reached opposite decisions. In Texas, a federal district court blocked HHS from enforcing the EMTALA guidance in Texas and the Biden administration has appealed this decision to the 5^th Circuit Court of Appeals. In Idaho, a federal district court issued a temporary stay blocking part of the Idaho ban, which was also stayed by the 9^th Circuit Court of Appeals. However, in January 2024, the Supreme Court of the United States agreed to hear the Biden Administration’s challenge to the Idaho abortion ban and allowed Idaho’s ban to be fully in effect while the litigation is ongoing.

Have states taken action to expand access to abortions later in pregnancy?

Recognizing that access to abortions later in pregnancy can be a health preserving or life-saving medical service to a small group of pregnant people, yet very difficult to access, a few states have sought to expand access to abortions later in pregnancy. The New York Reproductive Health Act enacted in January 2019 expanded protections for abortion providers and pregnant individuals who have abortions after 24 weeks in cases of health or life endangerment or lethal fetal anomalies. In May 2023, Minnesota repealed its viability ban and in July 2023, Maine enacted L.D. 1619, allowing abortions after viability anytime a doctor deemed them medically necessary. Previously the law only allowed abortions after viability if the pregnant person’s life was in danger.

Appendix

1. Berglas NB, Schroeder R, Kaller S, Stewart C, and Upadhyay UD. Change in service availability of 2nd and 3rd trimester abortion care following Dobbs. Society of Family Planning Conference, October 2023. ↩︎