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. ↩︎

At a time when kitchen table economic problems are on voters’ minds, unexpected medical bills and health care costs top the public’s list of financial concerns, and voters who are struggling to pay their monthly bills are the most eager to hear the presidential candidates talk about economic and health care issues, the latest KFF Health Tracking Poll finds.

Nearly 3 in 4 adults say they are worried about being able to afford unexpected medical bills (74%) and the cost of health care services (73%), more than say the same about other everyday expenses, such as gas, utilities, food, and housing costs, and about paying for prescription drugs (55%). Health care worries top the list regardless of partisanship.

About half of all voters (48%) say health care costs are a major reason for their negative views of the economy, though larger shares cite everyday expenses, inflation, and housing costs. Overall, two thirds (67%) of voters view the economy negatively. Republican voters are more than twice as likely as Democratic voters to hold such negative views. 

The poll probes how people’s economic struggles color their views of the economy and their priorities for candidates. Overall, 1 in 5 adults (19%) say they have trouble affording their monthly bills, and nearly 4 in 10 (37%) say they say they can just afford their monthly bills. These groups hold very different views than those who say that they afford their bills with money left over (44% of all adults).

Those who report difficulty affording monthly bills are more likely to view the national economy negatively and are more likely to worry about affording health care and other routine expenses. They are also more likely to want the presidential candidates to talk about economic issues, including health care costs and the future of Medicaid, compared to voters who can easily afford their bills. 

The ACA Remains Popular, and More Want to Expand It Than Scale It Back or Repeal It

The poll also explores views of the Affordable Care Act (ACA), which remains popular generally, though voters again split sharply along partisan lines over what should happen to the law next. 

Most of the public (59%) views the law favorably, as has been true since Republicans’ failed attempt to repeal and replace it during President Trump’s presidency. Fewer hold unfavorable views (39%), though most Republicans do (67%).  

In addition, half (50%) of the public, including nearly a quarter of Republicans (23%), want the next president and Congress to expand what the ACA does, as President Biden has advocated. Another 16% want to keep it as is. In contrast, only about a third of the public favor either scaling back the law (14%) or repealing it entirely (18%), the options preferred by most Republicans.

While President Trump has talked about wanting to replace the ACA during his campaign, just 1 in 6 voters (16%) say that he has a plan to do so. Even among Republican voters, just 3 in 10 say that President Trump has a plan to replace the ACA.On the flip side, while the ACA was originally enacted during Biden’s tenure as vice president, just half of the public says he had either a major (21%) or minor (28%) role in its passage. Democrats ages 50 and older are most likely to say President Biden played a role in the ACA becoming law. Most adults want the law’s prohibition on insurers from denying coverage based on pre-existing medical conditions to stay. Two thirds (67%) of the public say that it is “very important” that this provision remain in place, including most Republicans (54%) However, only about 4 in 10 people (39%) are aware that that provision is part of the ACA.The poll also finds gaps in the public’s knowledge about the ACA’s impact on health coverage. While the share of adults under age 65 who are uninsured has fallen sharply since the ACA’s enactment, just over a third (35%) of the public correctly says the uninsured rate has gone down since the law’s enactment, while similar shares incorrectly say it has gone up (32%) or stayed the same (31%).

The poll findings are featured in two reports: a main report that captures the main findings on health costs, the Affordable Care Act, and the election, and a companion report that looks at differences in the economic views and priorities for adults based on their economic circumstances.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted from January 30-February 7, 2024, online and by telephone among a nationally representative sample of 1,309 U.S. adults, including 1,055 registered voters. Interviews were conducted in English and in Spanish. The margin of sampling error is plus or minus 4 percentage points for the full sample and the registered voter sample. For results based on other subgroups, the margin of sampling error may be higher.

KFF Health News won the 2023 George Polk Award for Medical Journalism for its year-long investigation with CBS News into the failure of FDA-approved medical devices that were suspected of contributing to thousands of injuries and patient deaths.

The George Polk Awards were established in 1949 by Long Island University to commemorate George Polk, a CBS correspondent murdered in 1948 while covering the Greek Civil War. The awards place a premium on investigative and enterprising reporting that gains attention and achieves results.

The investigation, “When Medical Devices Malfunction,“ brought to light deep flaws in FDA oversight of a series of devices, including:

• Artificial knee implants that wore out prematurely;
• Metal hip implants that snapped in two and led to urgent surgeries;
• Last-resort heart pumps that may have caused or contributed to thousands of patient deaths;
• Insulin pumps that are blamed for contributing to at least a dozen patient deaths; and,
• A dental device that lawsuits alleged caused catastrophic harm to teeth and jawbones.

“This investigation revealed the deeply significant, and sometimes deadly, impact of flawed devices and oversight, and is part of our continuing work across KFF to show how people are affected by health policy,” said Dr. Drew Altman, president and chief executive officer, KFF.

“When Medical Devices Malfunction“ was reported by Fred Schulte, an investigative reporter at KFF Health News, Holly K. Hacker, the data editor at KFF Health News, Daniel Chang, the Florida correspondent at KFF Health News, Brett Kelman, a correspondent at KFF Health News, Anna Werner, the national consumer investigative correspondent at CBS News, and Nicole Keller, consumer investigative producer at CBS. It is Schulte’s and Werner’s second Polk award.

About KFF Health News’ Partnership with CBS News

The reporting in “When Medical Devices Malfunction“ was done in partnership with CBS News to investigate the safety of devices suspected of causing patient harm and explore the FDA’s process for assuring patient safety. Reporters from KFF Health News and CBS reviewed FDA data and court records and conducted many interviews with patients, device manufactures, FDA officials, consumer advocates, and others.

The investigation stems from a broader editorial partnership between CBS News and KFF Health News. The editorial partnership also features regular appearances by Dr. Céline Gounder, KFF Health News’ senior fellow and editor-at-large for public health, on CBS News, the popular “Bill of the Month” series, in which KFF Health News editor-in-chief Elisabeth Rosenthal appears regularly on “CBS Mornings” to discuss surprising medical bills, and the KFF Health News “Health Minute,” a weekly feature for CBS News Radio stations that helps millions of listeners understand how developments in health care delivery and policy affect them.

About KFF and KFF Health News

KFF is the independent source for health policy research, polling, and journalism. Our mission is to serve as a nonpartisan source of information for policymakers, the media, the health policy community, and the public. KFF Health News is a national newsroom that produces in-depth and award-winning journalism about health issues and is one of the core operating programs at KFF. Other major KFF programs include Policy Analysis; KFF Polling and Survey Research; and KFF Social Impact Media, which conducts specialized public health information campaigns. A new program on Health Misinformation and Trust is under development.

The data is available for download.