KFF designs, conducts and analyzes original public opinion and survey research on Americans’ attitudes, knowledge, and experiences with the health care system to help amplify the public’s voice in major national debates.
Note: This brief was updated on January 7, 2026 to incorporate new data on abortion statistics.
In the three years since the Supreme Court ruling that overturned Roe v. Wade, the total number of abortions nationally has slightly increased. The most recent data from the Society for Family Planning’s #WeCount project show that the average monthly abortion volume during the first half of 2025 was higher than the monthly average in 2024. From January to June 2025, there have been more than 590,000 abortions compared to 1.14 million abortions in all of 2024 and 1.06 million abortions in 2023. For most of the decade prior to the Dobbs ruling, there was a steady decline in abortion rates nationally, with a slight uptick in the years just before the ruling.
The upward trend in abortion volume is likely due to multiple reasons, including expanded telehealth capacity, the ability to mail medication abortion pills to patients, and the lower costs for telehealth abortions through virtual clinics compared to in-person care. Medication abortion via telehealth now accounts for 27% of all abortions.
In contrast to the abortion bans, several states have passed laws to protect abortion access for their residents and expand access to people seeking abortions from other states which have contributed in part to the increased the number of abortions in those states compared to pre-Dobbs time frame. Twelve (12) states require state-regulated private plans to cover abortion, many without cost-sharing, and 20 Medicaid programs use state-only funds to cover nearly all medically necessary abortions. Twenty-three (23) states passed shield laws intended to reduce the legal risks for clinicians who provide abortion care to patients who live in states where abortion is banned or restricted.
The upward trend in abortion volume can also be attributed to increased interstate travel. The travel rate for abortion care across state lines nearly doubled from 2020 to 2024, with Illinois, North Carolina, New Mexico, and Kansas experiencing the highest volume of out-of-state abortion patients last year.
Following the 2022 ruling in Dobbs v. Jackson Women’s Health Organization, it was generally expected that the abortion rate would drop due to the number of states that rapidly adopted abortion bans (13 states) and early gestational restrictions (6 states). There is no doubt these policies have made abortion access much more challenging or even impossible for those seeking abortion who live in restrictive states; yet, contrary to expectations, recent data show that the number of abortions in the U.S. overall has slightly increased in three years following the Supreme Court ruling. The combination of growth in telehealth availability for abortion care, lower telehealth costs, increased legal reproductive health care protections through state efforts, and higher rates of interstate travel, all likely contributed to the unexpected trajectory in abortion volume. However, the possibility of more state bans and restrictions combined with the ongoing legal challenges seeking to further restrict access may reverse this trend. Additionally, future actions that the Trump administration could take at the federal level could further limit abortion availability and access even in states that have enshrined the right to abortion, particularly if the administration restricts the distribution of medication abortion pills through the Comstock Act or targets the provision of telehealth abortions through regulatory revisions at the Food and Drug Administration.
This brief reviews the different sources of abortion data in the U.S., the factors that have affected abortion rates across the country before and after Dobbs, and what we may see as the Trump administration, Republican majorities in the House and Senate, and a conservative federal judiciary shape policy in the coming years.
How is abortion tracked at the state and federal level?
Three major organizations collect and report national and state-level data on abortion volume and rates: the federal Centers for Disease Control and Prevention (CDC), the Guttmacher Institute, and most recently, the Society of Family Planning through its (SFP) #WeCount project.
For decades, the federal CDC Abortion Surveillance System has requested data from the central health agencies of the 50 states, D.C., and New York City to document the number and characteristics of women obtaining abortions. Reporting to the CDC is voluntary and not all states participate in the surveillance system. Notably, California, Maryland, and New Hampshire have not reported data on abortions to the CDC system for years. Most states collect and report data on the demographic characteristics of patients, gestational weeks, and type of abortion procedure. CDC publishes data from the surveillance system annually, with the most recent data on abortions in 2022, reflecting a 2-year lag. Following the termination of federal staff from the agency’s the Reproductive Health Division, it was unclear whether the CDC would continue to update its Abortion Surveillance System which currently presents data from 2022 that was released in November 2024. It has been reported that the next Abortion Surveillance report is expected to be released during spring of 2026 with data from 2023.
Prior to the Dobbs ruling, the Guttmacher Institute, an independent research and advocacy organization, periodically conducted the Abortion Provider Census (APC), collecting data on abortion incidence, abortion facilities, and patient characteristics. Data from the APC are based primarily on questionnaires completed by known facilities that provide abortion in the country, information from state health departments, and Guttmacher estimates for a small portion of facilities. The most recent APC reports data from 2020. Following the Dobbs ruling, the Guttmacher Institute established an additional data collection initiative, the Monthly Abortion Provision Study, to track abortion volume within the formal U.S. health care system. This ongoing effort collects data on and provides national and state-level estimates on abortions while also tracking the changes in national abortion volume since 2020.
While the CDC and Guttmacher APC data differ in terms of collection methods, timeframe, and completeness, both have shown similar trends in abortion rates over the past decade. One notable difference is that Guttmacher’s survey has included continuous reporting from all states, which explains at least in part the higher abortion volume in their data.
Society of Family Planning’s (SFP) #WeCount is a newer national reporting initiative that measures changes in abortion access following the Dobbs ruling. The project provides semiannual reports on the monthly number of abortions by state and includes data on abortions provided through in-person health care settings and through telehealth. The #WeCount report started collecting data in April 2022 and has published two full years of abortion data since Dobbs.
How has the abortion rate changed over time?
For most of the decade prior to the Dobbs ruling, there was a steady decline in abortion rates nationally, but there was a slight increase in the years just before the ruling.
The most recent CDC data are from 2022, the same year as the Dobbs decision, and show that abortion rates declined from 2013 through 2017 and remained steady in the years leading up to the court decision (Figure 1). CDC reported 609,360 abortions in 2022 and a rate of 11.2 abortions per 1,000 women (excludes CA, DC, MD, NH, and NJ). In contrast, the Guttmacher Institute reported 930,160 abortions in 2020 and a rate of 14.4 abortions per 1,000 women. Guttmacher’s study showed a slight upward trend in abortion from 2017 to 2020 whereas CDC’s report showed a stable rate in abortions from 2017 to 2022 except for a slight uptick in 2019 and 2021.
Experts generally attribute the long-term decline in abortion rates to increased use of more effective methods of contraception. The slight increase in the years leading up to the Dobbs decision could be due to greater state-level coverage of Medicaid enrollees that made abortion access more affordable in some states as well as broader financial support from abortion funds to help individuals pay for the costs of abortion care.
Even prior to the Dobbs ruling, abortion rates varied widely between states.
National averages can mask local and more granular differences. Some of the variation in abortion volume and rates has been due to the wide differences in state policies that have shaped the availability of abortion, with some states historically placing restrictions on abortion (such as targeted regulations of abortion providers, requirements for multiple visits, and mandatory waiting periods), that constrained abortion access and availability. In some states, there were only one or two abortion providers even before Dobbs.
What has happened to abortion volume since Dobbs?
The SFP and Guttmacher Institute data both find that while the number of abortions in the U.S. dropped immediately following Dobbs, the total number of abortions nationally has increased two years following the ruling. However, the consistency observed at the national level obscures wide state-level variation and sharp declines in the number of abortions in states with bans and early gestational restrictions.
The latest SFP’s #WeCount data show that there were 591,770 abortions in the first half of 2025. In 2024, there were an estimated 1.14 million abortions, slightly up from 1.05 million in 2023. The monthly average number of abortions steadily increased from 88,180 abortions per month in 2023 to 95,250 abortions in 2024 to 98,630 in 2025 (January to June 2025)(Figure 3).
Why did the number of abortions increase after states instituted bans?
While it was not a total surprise that states without abortion bans had an increase in abortions following the Dobbs ruling, the reasons behind this increase are complex. The upward trend is likely due to a combination of increased interstate travel for abortion access by people coming from abortion ban states, the presence of state-level laws in states that protect providers who offer abortion services, lower costs associated with telemedicine medication abortions, and expanded virtual/telehealth capacity and the ability to mail medication abortions pills to patients among both bricks-and-mortar and telemedicine-only providers.
The Rise of Medication Abortion, Telehealth, and Virtual Clinics
While procedural abortions are only performed in a clinical setting, medication abortion can be provided either in a clinical setting or remotely via telehealth. Medication accounts for nearly two thirds (63%) of abortions nationally. Approved by the U.S. Food and Drug Administration (FDA) in 2000, medication abortion has a solid safety and effectiveness record regardless of whether the pills are dispensed in person by a clinician (either medical doctor or advanced practice clinician) or via telehealth and mailed or dispensed through a retail pharmacy. Medication abortion successfully terminates the pregnancy 99.6% of the time, with a 0.4% risk of major complications, and an associated mortality rate of less than 0.001 percent (0.00064%). The latest Guttmacher data show that in states without bans, medication accounted for the majority of abortions in 2023 (Figure 4). In five states (MT, WY, NE, GA, and VT), more than eight in ten abortions were medication abortions.
Access to medication abortion via telehealth had been historically limited by an FDA policy (Risk Evaluation Mitigation Strategy or REMS) that had permitted only physicians in a health care setting to dispense mifepristone in person. This resulted in a restriction on the ability to mail the pills or for retail pharmacies to dispense. In December 2021, the FDA revised this policy lifting the requirement that clinicians dispense the drug only in-person. This was done, in part, to alleviate the burden placed on the health care delivery system during the COVID-19 public health emergency. In January 2023, the FDA finalized a policy change that allows retail pharmacies to dispense medication abortion pills to patients with a prescription. These changes opened the door to greater use of telehealth for medication abortions.
The increase in telehealth abortions has also been driven in part by the rise in the number of virtual abortion clinics. The number of virtual clinics began to rise after the FDA revised its in-person dispensing requirement in 2021 and now accounts for a quarter (24%) of facilities that offer medication abortion services.
SFP’s #WeCount study breaks out monthly averages for telehealth abortions, and the most recent report shows that telehealth abortions accounted for 27% of all abortions in the second quarter of 2025 (Figure 5). The latest #WeCount reports distinguish between telehealth abortions provided by brick-and-mortar facilities from those provided under shield laws that give some legal protections to clinicians who provide abortion care via telehealth to people living in states with bans and restrictive policies. More than half of these telehealth abortions were performed under shield laws (56%), 6% of abortions were from online services offered by clinics that traditionally operate from physical locations (brick-and-mortar facilities), and four in ten (39%) were from virtual-only clinics. The provision of telehealth abortions varies widely across states, ranging from 8% of all abortions in some states and reaching 39% of all abortions in other states. Note: The counts for medication abortions, particularly those provided by mail, reflect the number of pills dispensed by providers, not necessarily complete abortions.
Costs for Telemedicine Abortions
The median price of medication abortion offered through brick-and-mortar clinics increased from $580 in 2021 to $600 in 2023. In contrast, the median price of medication abortions via virtual clinics decreased from $239 in 2021 to $150 in 2023, which is 75% less than the cost of in-person care (Figure 6). Virtual clinics do not incur many of the costs of a physical clinic, such as building maintenance, meeting regulations for surgical centers, and security to handle protesters. The increased availability of telehealth and virtual clinics has lowered the costs of care and reduced financial barriers resulting from abortion services as well as travel and other related expenses.
Costs for some have also been offset by the availability of financial assistance and logistical support from national and local networks of abortion funds. Since Dobbs, these networks received a reported 39% more requests for abortion support and financially supported more than 100,000 individuals seeking abortion care. While donations to these networks increased immediately following Dobbs, the frequency of donations has slowed, and funds have begun to taper. Some organizations recently reported suspending operations altogether, signaling that abortion volume may consequently dwindle as demand outpaces donations.
State-Level Protections
Over the past several years, some of the states where abortion remains legal have passed laws to protect abortion access for their residents and expand access to people seeking abortions from other states. For example, residents in California are protected from civil liabilities for providing or receiving abortion services, and providers are protected from professional discipline. Policies that have been implemented include using state funds to cover abortions under Medicaid beyond federal limitations, raising Medicaid reimbursement rates for abortion services, requiring state-regulated private plans to cover abortion, and enacting shield laws to protect clinicians who provide abortions in their states either in person or via telemedicine.
Today, 12 states require state-regulated private plans to cover abortion, some without any cost-sharing (Figure 7).
State actions to use their own revenues to pay for abortions have also expanded access to abortion services. States are not restricted by the federal Hyde Amendment (which bans the use of federal funds for abortion in Medicaid, Medicare and other public programs unless the pregnancy is a result of rape, incest, or if it endangers the woman’s life) and have the option to use state-only funds to cover abortions under other circumstances for women on Medicaid, which 20 states do currently.
A growing number of states passed shield laws to reduce the legal risks for clinicians who provide abortion care to patients who live in states where abortion is banned or restricted. While the details of these laws vary state to state, some policies protect clinicians from professional discipline for offering health care that is criminalized in another state, and others protect clinicians who provide care to patients across state lines, such as by prescribing and mailing abortion pills via telehealth services to patients in their state of residence. Some states also passed broader shield laws to protect patients and people assisting with reproductive services from civil and criminal consequences. As of February 2025, 22 states and Washington D.C. have enacted shield laws, with 8 states extending explicit protections to clinicians regardless of patient location or state of residence (Figure 8).
Interstate Travel
The Guttmacher Institute Monthly Abortion Provision Study is the only data source so far to provide in-depth information on interstate travel pre- and post-Dobbs. Guttmacher estimates that prior to Dobbs, nearly one in ten people obtained an abortion by traveling across state lines in 2020. Even though abortion was legal, there were considerable restrictions in many states that made abortion access very limited, which led to the need for interstate travel for abortion care for some people. The latest data show that 155,000 patients traveled out of state for abortion care in 2024, a slight drop from 170,000 in 2023 but nearly double the number of travelers in 2020 (81,000). The states with the highest number of people traveling inbound for abortion care border at least one state where abortion is banned, including Illinois (36,920 patients), North Carolina (17,080 patients), Kansas (15,610 patients), and New Mexico (12,680 patients)(Figure 9).
The volume of interstate travel into Florida and North Carolina is especially notable as they were two of the last southern states in 2023 where abortion was legal beyond six weeks of gestation. However, the policies in these two states became more restrictive. North Carolina went from a 20-week ban to a 12-week ban in July 2023, and Florida’s 15-week ban changed to a 6-week ban in May 2024. The volume of interstate travel into Florida declined from 9,080 travelers in 2023 to 3,970 travelers in 2024 (data not shown). Conversely, the volume of interstate travel into North Carolina increased from 16,110 in 2023 to 17,080 in 2024 (data not shown). Virginia also had an increase in interstate travel for abortion, from 5,360 out-of-state travelers in 2023 to 9,410 travelers in 2024. This is largely due to Florida’s stricter gestational stage ban, which curtailed abortion access in the region and has resulted in patients in southern states having to travel elsewhere, such as to northern states, for abortion care.
While the data show that abortions slightly increased nearly three years after Dobbs, ongoing and impending legal challenges, state legislative efforts, and federal executive actions could further alter the reproductive care landscape and have impacts beyond abortion counts. A recent JAMA study, for instance, found that fertility rates have increased in states with complete or 6 week abortion bans, namely among populations with the greatest structural disadvantages and barriers to obtaining abortion care. A concurrent study showed infant mortality rates have also risen in these states, many of which are already experiencing some of the worst maternal, infant, and child health outcomes in the U.S. The findings from these studies underscore the widespread repercussions of policy efforts aimed at restricting abortion access.
Note: This brief was updated on January 7, 2026 to incorporate new data on abortion statistics.
The Supreme Court’s 2022 ruling in Dobbs v. Jackson Women’s Health Organization overturned the constitutional right to abortion that had been in place for nearly 50 years under Roe v. Wade. Prior to the Dobbs ruling, abortions were permitted up to fetal viability in all states. That federal standard was eliminated under Dobbs, allowing states to ban or restrict abortion before viability. KFF is tracking and updating the status of abortion access and availability, with some states banning almost all abortions and some states protecting abortion access.
This issue brief answers some key questions about abortion in the United States and presents data collected before and since the Dobbs ruling.
Abortion is the medical termination of a pregnancy. It is a common medical service that many women obtain at some point in their life. There are different types of abortion methods, which the National Academy of Sciences, Engineering, and Medicine (NASEM) places in four categories:
Medication Abortion – Medication abortion, also known as medical abortion or abortion with pills, terminates a pregnancy by oral medications. There are two widely accepted protocols for medication abortion. In the U.S., the most common protocol involves the drugs mifepristone and misoprostol. Typically, an individual takes mifepristone first, followed by misoprostol 24-48 hours later. The U.S. Food and Drug Administration (FDA) has approved this abortion protocol up to the first 70 days (10 weeks) of pregnancy. Another medication abortion protocol uses misoprostol alone, which is also recommended for up to 70 days (10 weeks) of pregnancy, but it is not currently approved by the FDA and is more commonly used in other countries.
The Guttmacher Institute estimates that in 2023, medication was used for almost two thirds (63%) of all abortions. Many have confused emergency contraception (EC) pills with medication abortion pills, but EC does not terminate a pregnancy. EC is a contraceptive that prevents pregnancy by delaying or inhibiting ovulation and will not affect an established pregnancy.
Aspiration, a minimally invasive and commonly used gynecological procedure, is the most common form of procedural abortion. It can be used to conduct abortions up to 14-16 weeks of gestation. Aspiration is also commonly used in cases of early pregnancy loss (miscarriage).
Dilation and evacuation abortions (D&E) are usually performed after the 14th week of pregnancy. The cervix is dilated, and the pregnancy tissue is evacuated using forceps or suction.
Induction abortions are rare and conducted later in pregnancy. They involve the use of medications to induce labor and delivery of the fetus.
What does research show about the safety of abortions?
Decades of research have shown that abortion is a very safe medical service.
Despite its strong safety profile, abortion is the most highly regulated medical service in the country and is now banned in several states. Additionally, many states impose other limitations on abortion that are not medically indicated, including waiting periods and parental notification and consent requirements that typically delay receipt of services.
NASEM completed an exhaustive review on the safety and effectiveness of abortion care and concluded that complications from abortion are rare and occur far less frequently than during childbirth.
NASEM also concluded that safety is enhanced when the abortion is performed earlier in the pregnancy. State level restrictions such as waiting periods, ultrasound requirements, and gestational limits that impede access and delay abortion provision likely make abortions less safe.
When medication abortion pills are administered at or before 9 weeks gestation, the pregnancy is terminated successfully99.6% of the time, with a 0.4%risk of major complications, and an associated mortality rate of less than 0.001 percent.
Studies on procedural abortions, which include aspiration and D&E, have also found that they are very safe, with the rate of major complications less than 1% for aspiration abortions. Abortion medications and procedures are also often used for people experiencing miscarriages and stillbirths and can improve safety by preventing delays when a loss is inevitable.
Most OBGYN physicians say that the Dobbs decision has had a negative impact on maternal health and patient safety. In a national KFF survey of OBGYNs, more than six in ten say that racial and ethnic inequities in maternal health (70%), management of pregnancy-related medical emergencies (68%), and pregnancy-related mortality have all worsened (64%) since the Dobbs
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What is the status of abortion policy in the United States today?
Since the 2022 Dobbs ruling, abortion has been banned in 13 states, and another 6 states have implemented early gestational limits between 6 and 12 weeks. Most other states allow abortion to the point of fetal viability, which is generally considered around 24 weeks gestation.
All states that ban abortion have exceptions if an abortion is needed to prevent the death of the pregnant person. Additionally, some state bans make exceptions when the pregnancy is threatening the pregnant person’s health, when the pregnancy is the result of rape or incest, and when there is a lethal fetal anomaly. However, in practice, these exceptions have proven to be unworkable except in the most extreme circumstances. Furthermore, eight states that ban abortion do not make exceptions for cases of rape or incest and six do not have exceptions to protect the health of pregnant people.(Back to top)
The most recent data estimates that more than one million abortions (1,142,970) occurred in the U.S. in 2024 and there were more than half a million abortions (591,770) in the first six months of 2025.
Three different organizations currently track abortion volume at the state and the federal levels: the federal Centers for Disease Control and Prevention (CDC), the Guttmacher Institute, and the Society for Family Planning (SFP). The CDC has been collecting abortion data for decades, but several states do not provide data to the federal government (reporting to the CDC is voluntary) and there is a two-to-three-year time lag until the data become publicly available.
Since the Dobbs ruling, the Guttmacher Institute’s Monthly Abortion Provision Study and the SFP’s #WeCount have been tracking state level changes in abortion volume based on data provided by abortion clinics and providers. Both studies provide national and state-level estimates on procedural and medication abortions but differ in some methodologic details. The Guttmacher study compares current abortion rates to 2020, while #WeCount compares rates to the months immediately before Dobbs in 2022. Neither source includes data on self-managed abortions, which are abortions that a pregnant person can do on their own by taking medication abortion pills without clinical supervision. For more details about data sources, see KFF’s issue brief on abortion trends.
For most of the decade prior to the Dobbs ruling, there was a steady decline in abortion rates nationally, but there was a slight increase in the years just before the ruling. Immediately following the Dobbs ruling, the number of abortions in the U.S. dropped as more states enforced bans and restrictions.
Paradoxically, the most recent data show that the abortion volume in the U.S. slightly increased overall in the three years following the Dobbs ruling.
The monthly average number of abortions steadily increased from 79,620 monthly abortions in 2022 (April to December 2022), to 88,180 abortions in 2023, to 95,250 abortions in 2024, and to 98,630 in 2025 (January to June 2025). This overall increase in the number of abortions nationally can be largely attributed to the growth of telehealth for medication abortion, increased availability of lower cost medication abortion pills through virtual clinics, and in particular shield law abortions, where clinicians in legal states are mailing pills to individuals residing in states with bans and restrictions. Additionally, in several states without bans, there has been increased interstate travel for abortion access, expanded capacity to see patients, increased measures to protect abortion rights and improve coverage of abortion care for residents and out-of-state patients, and the broader availability of low-cost abortion medication.
However, the small upswing nationally obscures the massive declines in abortion access to in-state providers in states with bans and restrictions as well as the hardships that many pregnant people experience in accessing abortion care. Additionally, there are month-to-month variations in all states, and changes in policy can cause larger shifts. For example, in May 2024 Florida implemented a ban on abortions after six weeks gestation (previously permitted up to 15 weeks), and subsequently there was a noticeable decline in abortions in the state and nationally.
Most of the information about people who receive abortions comes from CDC data. In 2022, the most recent year CDC data are available, women across a range of age groups, socioeconomic status, and racial and ethnic backgrounds obtained abortions, but the majority were obtained by women who were in their twenties, low-income, and women of color.
Women in their twenties accounted for more than half (57%) of abortions. Nearly one-third (31%) were among women in their thirties and a small share were among women in their 40s (4%) and teens (9%).
Information on the race and ethnicity of people who obtain abortions is particularly limited, but based on available data, more than half of abortions were among women of color in 2022. Black women comprised 40% of abortion recipients, 32% were provided to White women, 21% to Hispanic women, and 7% were among women of other races/ethnicities. Additionally, White, Black, and American Indian and Alaska Native women are disproportionately represented among women ages 18-49 in states that have banned abortion compared to states that provide broader access to abortion. Many women who sought abortions have children. Approximately six in 10 (59%) abortion patients in 2022 had at least one previous birth.
The vast majority (93%) of abortions occur during the first trimester of pregnancy according to data available from before the Dobbs decision.
Before the 2022 ruling in Dobbs, there was a federal constitutional right to abortion before the pregnancy is considered to be viable, that is, can survive outside of a pregnant person’s uterus. Viability is generally considered around 24 weeks of pregnancy. Most abortions, though, occur well before the point of fetal viability. When people have abortions later in pregnancy, it is often because the fetus is not viable and the pregnancy may endanger the pregnant person’s life.
Data from 2022 found that four in ten (40%) abortions occurred by six weeks of gestation, another four in ten (39%) occurred between seven and nine weeks, and 14% at 10-13 weeks. Just 7% of abortions occurred after the first trimester.
Abortions can be provided in a variety of settings. Recent data on site of abortion care are limited, but historically the majority of abortions have been provided at brick and mortar clinics that specialize in provision of reproductive health care. Some private office-based physicians also offer abortion services and in more recent years, there has been an emergence of virtual only clinics that offer medication abortions.
Brick-and-mortar clinics vary, but they can offer medication abortion, procedural abortions, and services for abortions later in pregnancy. Many clinics in states where abortion is restricted or banned stopped offering abortion services shortly after the Dobbs ruling and the overall number of brick-and-mortar independent clinics in the US has decreased over the years, with over 75 independent abortion clinics shutting down between 2022 and 2024. Contrary to expectations though, the number of abortions from these clinics increased overall since the Dobbs ruling. The distribution of facilities that offer abortion care varies widely by state and geographic region, and the increase is largely driven by the expansion of virtual abortion clinics. While virtual clinics can remove geographic barriers for those seeking abortion care, their services are limited to medication abortion which is only available to those seeking abortions early in pregnancy. Even prior to the ruling in Dobbs, access to abortion services was very uneven across the country. The proliferation of restrictions in many states, particularly in the South, greatly constrained the availability of services in some areas. In the wake of overturning Roe v. Wade, these geographic disparities have only widened.
Telehealth
Telehealth has grown as a delivery mechanism for abortion services. While procedural abortions must be provided in person in a clinical setting, medication abortion can be provided in a clinical setting or via telehealth without an in person visit. An estimated one in four abortions were provided via telehealth in the last quarter of 2024. Access to medication abortion via telehealth was limited for many years by an FDA policy that permitted only certified clinicians to dispense mifepristone within a health care setting. In December 2021, however, the FDA permanently revised this policy and no longer requires clinicians to dispense the drug in person. Additionally, in January 2023, the FDA finalized a policy change that allows retail pharmacies to dispense medication abortion pills to patients with a prescription. These policy changes opened the door to using telehealth for medication abortion.
Telehealth can be administered by providers from traditional brick-and-mortar clinics or by virtual-only clinics. Virtual clinics began to proliferate after the FDA revised its in-person dispensing requirement in 2021, rising from no virtual clinics in 2020 to 226 clinics in 2023 (representing 24% of facilities that offer medication abortion).
In a telehealth abortion, the patient typically completes an online questionnaire to assess (1) confirmation of pregnancy, (2) gestational age and (3) blood type. If determined eligible by a remote clinician, the patient is mailed the medications. This model does not require an ultrasound for pregnancy dating if the patient has regular periods and is sure of the date of their last menstrual period (in line with ACOG’s guidelines for pregnancy dating). If the patient has irregular periods or is unsure how long they have been pregnant, they may need to obtain an ultrasound to confirm the weeks of gestation and rule out an ectopic pregnancy and send in the images for review before receiving medications. The follow-up visit with a clinician can also happen via a telehealth visit.
Research has found that the provision of medication abortion via telehealth is as safe and effective as the provision of the pills at an in person visit. Yet, in some states that have not banned abortion, telehealth may not be available because of state-level restrictions enacted prior to the Dobbs ruling that require patients to take the pills at a physical clinic, require ultrasounds for all abortions, or directly ban telehealth for abortion care. Of the 36 states that have not banned abortion, 12 had at least one of these restrictions as of March 2024.
Medication abortion has emerged as a major legal and legislative front in the battle over abortion access across the nation. Multiple cases have been filed in federal and state courts regarding aspects of the FDA’s regulation of medication abortion as well as the mailing of medications.
Some states have passed shield laws, designed to reduce the legal risks for clinicians who provide abortion care to patients who live in states where abortion is banned or restricted. The shield laws bar the clinicians’ resident state from extraditing them if a restrictive state attempts to prosecute the clinician for performing an abortion that is otherwise legal in their home state. As of September 2024, 8 states have shield laws in place that explicitly protect providers regardless of patient location.
Data from SFP’s latest #WeCount report show that one in four (27%) abortions were provided via telehealth in early 2025. These telehealth abortions include those provided by brick-and-mortar clinics, virtual clinicians, and clinicians in states with shield laws who prescribe medication abortion to patients in states with bans or telehealth restrictions. Note: The counts for medication abortions, particularly those provided by mail, reflect the number of pills dispensed by providers, not necessarily complete abortions.
Self Managed Abortions
Self-managed abortions typically involve obtaining medication abortion pills from an online pharmacy that will send the pills by mail or by purchasing the pills from a pharmacy in another country, usually without the involvement of a physician or advanced practice clinician. While this can involve asynchronous contact with non-US-based clinicians, it does not typically involve a direct consultation with a clinician either in person or via telehealth.
It is difficult to track the volume of self-managed abortions since they are outside of the formal health care system, and it is unknown if all people who receive medication pills take them. One study estimated that at least 26,000 additional self-managed medication abortions took place in the six months following the Dobbs ruling. More than half of self-managed medication abortions pills were distributed through volunteers in community networks, while others were provided by telehealth organizations outside the formal U.S. health care system and online vendors.
Interstate Travel
The Guttmacher Institute Monthly Abortion Provision Study is the only data source so far to provide in-depth information on interstate travel pre- and post-Dobbs. Guttmacher estimates that prior to Dobbs, nearly one in ten people obtained an abortion by traveling across state lines in 2020. Even before Roe v Wade was overturned, abortion was highly restricted in many states. The latest data show that 155,000 patients traveled out of state for abortion care in 2024, a slight drop from 170,000 in 2023 but nearly double the number of travelers in 2020 (81,000). This has been offset by an increase in patients who are getting abortion pills via telehealth.
The states with the highest number of people traveling inbound for abortion care border at least one state where abortion is banned, including Illinois (36,920 patients), North Carolina (17,080 patients), Kansas (15,610 patients), and New Mexico (12,680 patients).
The costs of abortion services vary widely depending on the method, facility, and gestational age; the costs can be as low as $25 through virtual clinics but typically exceed $1,000 for abortions later in pregnancy.
Obtaining an abortion can be costly. On average, the costs are higher for abortions in the second trimester than in the first trimester. The state bans and restrictions enacted since Dobbs can also result in additional nonmedical expenses for transportation, childcare, lodging, and lost wages. Many people pay for abortion services out of pocket, but some people can obtain assistance from local abortion funds, or coverage through their insurance plan or with state funds in some states.
Among all abortion-providing facilities in 2023, the median costs for people paying out of pocket in the first trimester were $563 for a medication abortion and $650 for a procedural abortion. For people with low incomes, who are more likely to seek abortion care, these costs are often unaffordable. The costs of abortion are higher in the second trimester compared to the first, with median self-pay reaching $1000. In the second trimester, more intensive procedures may be needed and local options are more limited in many communities that have fewer facilities.
Abortion funds are independent organizations that help pay for some of the costs of abortion services, typically medical care, travel, and accommodations if needed. Most abortion funds are regional and have connections to clinics in their area, but they do not reach all people seeking services. Since Dobbs, these networks received a reported 39% more requests for support, and while donations to these networks rose immediately following Dobbs, the frequency of donations slowed, and the resources available to funds have begun to taper.
The costs for abortion services through virtual clinics, such as AidAcess and Abuzz, as well as self-managed sites, are typically lower than in person services. In 2023, the median cost of medication abortion from virtual clinics was $150. Costs at online pharmacies listed on Plan C range from a low of $25 for abortion pills by mail without clinician consultation, to upwards of $150 for abortion by mail with a clinical consultation.
Does private insurance or Medicaid cover abortions?
Insurance coverage for abortion services is heavily restricted in certain private insurance plans and public programs like Medicaid and Medicare.
Among women of reproductive age, approximately one in three are covered by private insurance, one in five are covered by Medicaid, and one in ten are uninsured. States regulate fully-insured private plans in their state, whereas the federal government regulates self-funded plans. States can choose whether abortion coverage is included or excluded in private plans that are not self-funded. Increasingly, states that support abortion rights have enacted laws that mandate coverage in both Medicaid and state-regulated plans.
Prior to the Dobbs ruling, several states had enacted private plan restrictions and banned abortion coverage from ACA Marketplace plans. Currently, there are 10 states that have policies restricting abortion coverage in private plans and 25 that ban coverage in any Marketplace plans. Since the Dobbs ruling, some of these states have also banned the provision of abortion services altogether. Conversely, 12 states require private plans to cover abortion, nine of which require no cost-sharing for abortion.
For decades, the Hyde Amendment has banned the use of federal funds for abortion in Medicaid, Medicare and other public programs unless the pregnancy is a result of rape, incest, or if it endangers the pregnant persons’ life. States have the option to use state-only funds to cover abortions under other circumstances for those on Medicaid, which 20 states do currently.
Data from 2021, prior to Dobbs, estimated that a quarter (26%) of abortion patients used Medicaid to pay for abortion services, 11% used private insurance, and 60% paid out of pocket. People in states with more restrictive abortion policies were more likely to pay out of pocket compared to people living in less restrictive states.
KFF’s national polls have consistently found that a majority of the public did not want to see Roev. Wade overturned and that most people feel that abortion is a personal medical decision. Similarly, findings from the 2024 KFF Women’s Health Survey show 70% of women of reproductive age—the age group that is most directly impacted by state abortion policies—support a nationwide right to abortion.
Furthermore, much of the public supports access to abortions for patients who are experiencing pregnancy-related emergencies (88%), a patient’s right to travel for abortion care (79%), and protecting doctors who perform abortions from legal penalties (67%).
Abortion in the United States Dashboard
On June 24, 2022, the Supreme Court overturned Roe v. Wade, eliminating the federal constitutional standard that had protected the right to abortion. Without any federal standard regarding abortion access, states will set their own policies to ban or protect abortion. The Abortion in the United States Dashboard is an ongoing research project tracking state abortion policies and litigation following the overturning of Roe v. Wade. Click on the buttons or scroll down to see all the content. It will be updated as new information is available.
This KFF Health Tracking Poll finds that many, including women of reproductive age, remain unfamiliar with key facts about mifepristone. Fewer than half of all adults say they believe abortion pills are safe now, compared to over half of all adults two years ago. This poll explores awareness and perception of the recent FDA review of the medication, and support for policies aimed at restricting it.
This policy watch explains how abortion coverage works in ACA Marketplace plans, state actions to include or exclude abortion coverage in these plans, and the potential impact if Congress bans abortion coverage in all Marketplace plans.
This brief reviews current state and federal policies, ongoing litigation, and potential federal actions that may impact access to telehealth for medication abortion.
This policy watch outlines SCOTUS’ June 27, 2024, decision dismissing the case, Moyle v. United States, where the Court had been asked to determine if a federal law called the Emergency Medical Treatment and Labor Act preempted Idaho’s abortion ban. The decision returns the case to the lower courts and reinstates a court order blocking enforcement of the Idaho ban where it prohibits abortion care for pregnant people having medical emergencies.
The Supreme Court will be hearing oral arguments for the case FDA v. Alliance for Hippocratic Medicine. This brief explains the issues at stake before the court and their implications for the drug regulatory process and medication abortion access throughout the country.
This brief provides background on the Comstock Act, reviews how it has been interpreted by the Biden Administration’s DOJ, and considers how it could be enforced by an administration that is hostile toward abortion to severely restrict the distribution of drugs and supplies used for abortion, with implications for abortion access in all states across the country.
While all eyes were on Texas and the recent case of Kate Cox, a woman seeking a court order allowing her abortion under an exception to the Texas abortion ban, the conflict could have played out in many states. The risk to doctors is so high that many doctors are hesitant to provide life-saving abortion care unless the threat to life is imminent.
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.
Ten of the 21 states with abortion bans or gestational limits do not have an exception for pregnancies resulting from sexual assault. In the 11 states with rape and incest exceptions, the details and fine print make can make access to abortion care unattainable for pregnant survivors of sexual assault. Law enforcement reporting requirements, early pregnancy gestational limits, and the lack of provider availability present major barriers to abortion access, even when the state has an exception.
This State and Federal Reproductive Rights Litigation tracker aggregates information about ongoing litigation regarding abortion bans and restrictions, FDA approval of Mifepristone (an abortion pill) and other federal regulations.
This brief examines the legal considerations for physicians providing abortion care, including criminal and professional penalties, as well as the potential for medical malpractice lawsuits for delayed care to patients due to bans and prosecution for violation of abortion bans across state lines.
This brief examines what the November election and prior efforts to enshrine abortion rights at the ballot box mean for those states and what’s next, including the future of abortion restrictions in states where voters enshrined abortion rights where abortion was banned or restricted, as well as those that do not have abortion bans.
Presidential candidate Trump claims credit for SCOTUS’ Dobbs decision and says that as a result, the “states are voting.” States are making decisions on abortion policy, but it’s mostly been state legislatures, not voters. Few states with abortion bans have a process for citizen-initiated constitutional amendments. In those states, lawmakers and anti-abortion activists have attempted to block abortion measures from qualifying for the ballot or put roadblocks in their place.
KEY FACTS
Over four in ten (45%) abortions occur by six weeks of gestation, 36% are between seven and nine weeks, and 13% at 10-13 weeks. Just 7% of abortions occur after the first trimester.
This brief reviews the different sources of abortion data in the United States, the factors that have affected abortion rates across the U.S, before and after Roe v. Wade, and what we may see as the Trump administration, Republican majorities in the House and Senate, and a conservative federal judiciary shape policy in the coming years.
This factsheet provides an overview of medication abortion, with a focus on federal and state regulations pertaining to its provision and coverage, and the role of the drug in self-managed abortions.
This brief reviews current state and federal policies, ongoing litigation, and potential federal actions that may impact access to telehealth for medication abortion.
This Policy Watch takes a look at employers ability to access abortion information when their health plan covers abortion services. With some states criminalizing entities who assist in abortions, employers and providers face legal jeopardy and existing privacy laws such as HIPAA (the Health Insurance Portability and Accountability Act) may be limited in their privacy protections.
This brief looks at Medicaid reimbursement rates for abortion services across states, including D&C and D&E procedures, and medication abortion. There is tremendous variability in how much states reimburse for abortion services.
This brief details the federal programs that are affected by the Hyde Amendment and laws and regulations that have a similar goal, provides estimates on the share of women insured by Medicaid affected by the law, reviews the impact of the law on their access to abortion services, and discusses the potential effect if the law were to be repealed.
This data note documents the costs associated with abortion care in private plans. Also, KFF analyzes how out of pocket spending has been affected by state laws that require full coverage of abortion services.
This Policy Watch gives an overview of employers offering to cover travel expenses for workers who need to go out of state for an abortion in the context of increasing restrictions on abortion around the country. We discuss who is offering these benefits, the implications for workers, and some of the legal and political concerns for employers.
This brief presents findings from the 2023 KFF Employer Health Benefits Survey on coverage of abortion services in large employer-sponsored health plans, changes employers made to abortion coverage since the 2022 Supreme Court ruling, and employers’ provision of financial assistance for travel out of state to obtain an abortion.
This brief examines pregnancy loss management in the Dobbs era and explores how limiting or banning abortion may have negative consequences on people experiencing miscarriage or stillbirth.
This report, based on a nationally representative survey of office-based OBGYNs practicing in the United States, examines the provision of sexual and reproductive health care provided by OBGYNs before and after the Dobbs decision, comparing the experiences of OBGYNs practicing in states where abortion is fully banned, states with gestational restrictions, and states where abortion remains available under most circumstances.
Native Hawaiian or Pacific Islander, American Indian or Alaskan Native and Black people are more likely to die while pregnant or within a year of the end of pregnancy compared to White people
Six in ten of Black (60%) and AIAN (59%) women ages 18-49 live in states with abortion bans or restrictions. Just over half (53%) of White women ages 18-49 live in states with bans or restrictions, while less than half of Hispanic (45%) and about three in ten Asian (28%) and NHPI (29%) women ages 18-49 live in these states
This poll finds 1 in 8 voters say abortion is the most important issue to their vote. They are younger, lean Democratic, and generally want abortion to be legal in all or most cases. The poll also gauges the public’s views on abortion-related policies, including a national 16-week abortion ban and allowing abortion for pregnancy-related emergencies.
Our latest poll finds one in five women of reproductive age in states with abortion bans say either they or someone they personally know has had difficulty obtaining an abortion. Majorities of women across states—including in those with abortion bans—think abortion should be legal in all or most cases and support a range of policies that protect abortion access.
This brief provides new information from the 2024 KFF Women’s Health Survey about women’s experiences with abortion, the fallout of overturning Roe v. Wade, women’s knowledge about abortion laws in their states including medication abortion, as well as their opinions on the legality of abortion.
This brief provides information about abortion experiences, awareness, and attitudes of Florida women ages 18 to 49, based on findings from the 2024 KFF Women’s Health Survey, a nationally representative survey on health care issues.
This brief provides information about abortion experiences, awareness, and attitudes of Arizona women ages 18 to 49, based on findings from the 2024 KFF Women’s Health Survey, a nationally representative survey on health care issues.
On December 29, 2025, the Centers for Medicare & Medicaid Services (CMS) announced first-year state awards from the $50 billion Rural Health Transformation Program (the “rural health fund”), which is being administered by a new Office of Rural Health Transformation. The rural health fund was created as part of the July 2025 budget reconciliation law, sometimes called the One Big Beautiful Bill, to help offset the impact on rural areas of the law—which includes an estimated $911 billion in federal Medicaid spending reductions over ten years, including an estimated $137 billion in rural areas. All 50 states applied for the rural health fund, and each state received an award. CMS will distribute $10 billion each year from fiscal years 2026 through 2030, beginning this year.
State awards for 2026, the first of five years, average $200 million, ranging from $147 million in New Jersey to $281 million in Texas (Figure 1). Differences in total awards across states in the first year (and most likely in future years) are modest relative to large differences in rural populations and rural health needs more generally. For example, Texas has about thirty times as many rural residents as New Jersey (4.3 million versus about 140,000) but is only receiving about twice as much funding in the first year ($281 million versus $147 million). Differences in total awards across states are relatively modest primarily because half of the rural health fund (50%) is being distributed equally across approved states, regardless of need, as required by law. Because all states have been approved for funding, each is slated to receive $100 million from this half of the fund in 2026 and in each year from 2027 through 2030.
Texas, Alaska and California are receiving the largest total awards in the first year. While Texas and California have the largest and fourth-largest rural populations in the country, respectively, Alaska has the fifth smallest rural population. Alaska likely received a relatively large award at least in part because a portion of the fund was distributed to the five largest states based on land area. New Jersey, Connecticut, and Rhode Island are receiving the smallest awards in the first year. These are all states with relatively small rural populations.
Figure 1
First-year awards per rural resident vary widely across states, ranging from less than $100 in ten states to more than $500 in eight states according to KFF analysis (see Figure 2). State awards are partially, but not closely, tied to rural population, meaning that first-year awards per rural resident are generally relatively small among states with the largest rural populations. For example, Texas has the largest rural population in the country—and the largest total award in the first year—but will receive the smallest payment per rural resident ($66 in 2026). In contrast, states like Rhode Island, New Jersey, and Alaska, with far fewer rural residents, will receive substantially higher amounts per rural resident ($6,305, $1,069, and $990 respectively, with Rhode Island being an extreme outlier). Only a quarter of the $50 billion fund is being distributed exclusively based on measures of state need, with just 5% of the fund that is based on rural population. Other measures of need, according to CMS, include the number of rural facilities, land area, the share of hospitals receiving Medicaid disproportionate share hospital (DSH) payments, and other factors.
While lawmakers created the fund in part to help offset the impact on rural hospitals of cuts under the reconciliation law, CMS has made clear that funding is intended to benefit rural communities more broadly by transforming health care systems. Examples of state initiatives based on the subset of stateapplications available to the public and abstracts posted on CMS’s website include initiatives related to Make America Healthy Again (MAHA) (such as improving access to healthy foods and preventing and managing chronic conditions), expanding telehealth services and remote patient monitoring, rural workforce development programs, and supporting regional collaboration among providers.
CMS stipulates that payments to hospitals and others for patient care cannot exceed 15% of total funds, though providers could benefit in other ways, such as through investments in existing buildings and infrastructure (restricted to 20% of total funds). It is unclear how much of the money will benefit rural hospitals either directly or indirectly and the extent to which this will offset hospitals’ losses under the reconciliation bill. Moreover, it is not yet clear how much information will be available to the public to track the flow of dollars from states to rural providers and other entities and to evaluate the effectiveness of state initiatives.
This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.
Note: The data presented below are updated monthly as new Medicaid/CHIP enrollment data become available.
The Medicaid Enrollment and Unwinding Tracker presents the most recent data on monthly Medicaid/CHIP enrollment reported by the Centers for Medicare & Medicaid Services (CMS) as part of the Performance Indicator Project as well as archived data on renewal outcomes reported by states during the unwinding of the Medicaid continuous enrollment provision. The unwinding data were pulled from state websites, where available, and from CMS.
Medicaid/CHIP Enrollment Trends
Medicaid/CHIP enrollment trends generally use February 2020 as the baseline month because it was the month prior to the start of the COVID-19 pandemic and implementation of the continuous enrollment provision. During continuous enrollment, which was in place during the three years of the pandemic, states paused Medicaid disenrollments. As a result, when the continuous enrollment provision ended in March 2023, national Medicaid/CHIP enrollment had increased to a record high of 94 million enrollees. Beginning April 1, 2023, states could resume disenrolling people after conducting renewals to verify eligibility for the program, though some states delayed the start of their unwinding periods until May, June, or July 2023. Most states took 12 months to complete unwinding renewals and nearly all states completed renewals by August 2024.
The figures below show Medicaid and CHIP enrollment from February 2020 through the most current month of available data. Some figures also include enrollment for adults and children in Medicaid/CHIP. Key enrollment trends as of September 2025 include:
There are 77.1 million people enrolled in Medicaid/CHIP nationally (Figure 1). This represents an 18% decline from total Medicaid/CHIP enrollment in March 2023, but is still 8% higher than Medicaid/CHIP enrollment in February 2020, prior to the pandemic (Figure 2 and Table 1).
Several factors likely explain why national Medicaid/CHIP enrollment is higher than pre-pandemic enrollment. The pandemic may have encouraged some people who were previously eligible for Medicaid but not enrolled to newly enroll in the program. During the unwinding, many states took steps to improve their renewal processes, which reduced the number of people who were disenrolled despite remaining eligible. In addition, some states expanded eligibility for certain groups since the start of the pandemic, such as the Affordable Care Act’s (ACA) Medicaid expansion.
Medicaid/CHIP enrollment is higher than pre-pandemic levels in all but fourteen states (AK, AR, CO, ID, IA, LA, MI, MT, NH, NM, SC, TN, TX, and WV). Enrollment changes from pre-pandemic baseline vary from a 16% decrease in Montana to a 54% increase in North Carolina (Figure 2). Many of the states with the largest increases in enrollment expanded eligibility since the start of the pandemic. For example, five states (NE, OK, MO, SD, and NC) implemented the Medicaid expansion between October 2020 and December 2023 and Maine increased the income limit for children to qualify for Medicaid.
In the 49 states and DC with complete enrollment data by age, there are 36 million children (48%) and 39.3 million adults (52%) enrolled, a change from pre-pandemic (February 2020) enrollment patterns when children made up a slight majority (51%) of Medicaid/CHIP enrollees (Figure 1).
Child enrollment in Medicaid/CHIP is below pre-pandemic enrollment in 19 states, while adult enrollment is below pre-pandemic levels in 12 states (Figure 2).
There are 69.8 million people enrolled in Medicaid and 7.3 million people enrolled in CHIP (Figure 1). More states report Medicaid enrollment above their pre-pandemic baselines compared to the number reporting CHIP enrollment above the baseline (Figure 2).
Unwinding Data – Archived
Note: The data on unwinding renewal outcomes presented below were last updated on September 12, 2024; since most states have now completed the Medicaid unwinding, the information will not be updated again.
As of September 12, 2024 and with nearly complete unwinding data for most states:
Over 25 million people were disenrolled (31% of completed renewals) and over 56 million people had their coverage renewed (69% of completed renewals).
Disenrollment rates varied across states from 57% in Montana to 12% in North Carolina, driven by a variety of factors including differences in renewal policies and procedures as well as eligibility expansions in some states.
Among those who were disenrolled, nearly seven in ten (69%) were disenrolled for paperwork or procedural reasons while three in ten (31%) were determined ineligible.
Among those whose coverage was renewed during the unwinding, 61% were renewed on an ex parte, or automated, basis, meaning the individual did not have to take any action to maintain coverage.
State Data on Renewal Outcomes
The data on unwinding-related renewal outcomes presented in this section rely primarily on monthly reports that states were required to submit to the Centers for Medicare & Medicaid Services (CMS) during the unwinding period. The data also reflect updates to the monthly reports that states submit three months after the original report submission to account for the resolution of pending cases and any other changes in renewal metrics. For 13 states, data were pulled from dashboards or reports published on state websites that provide more complete information, and for a few additional states, updated monthly reports were pulled from state websites because they were more timely than what is reported on the CMS website.
As of September 12, 2024, at least 25,198,000 Medicaid enrollees had been disenrolled during the unwinding of the continuous enrollment provision. Overall, 31% of people with a completed renewal were disenrolled in reporting states while 69%, or 56.4 million enrollees, had their coverage renewed.
There is wide variation in disenrollment rates across reporting states, ranging from 57% in Montana to 12% in North Carolina.A variety of factors contribute to these differences, including differences in renewal policies and system capacity. Some states adopted policies that promote continued coverage among those who remain eligible and/or have automated eligibility systems that can more easily and accurately process renewals while other states have adopted fewer of these policies and have more manually-driven systems. In addition, North Carolina and South Dakota adopted Medicaid expansion and other states increased eligibility levels for certain populations (e.g., children, parents, etc.) during the unwinding, which may have lowered disenrollment rates in these states.
Across all states with available data, 69% of all people disenrolled had their coverage terminated for procedural reasons. However, these rates vary based on how they are calculated (see note below). Procedural disenrollments are cases where people are disenrolled because they did not complete the renewal process and can occur when the state has outdated contact information or because the enrollee does not understand or otherwise does not complete renewal packets within a specific timeframe. High procedural disenrollment rates are concerning because many people who are disenrolled for these paperwork reasons may still be eligible for Medicaid coverage.
(Note: The first tab in the figure below calculates procedural disenrollment rates using total disenrollments as the denominator. The second tab shows these rates using total completed renewals, which include people whose coverage was terminated as well as those whose coverage was renewed, as the denominator. And finally, the third tab calculates the rates as a share of all renewals due, which include completed renewals and pending cases.)
Medicaid Renewals
Of the people whose coverage has been renewed as of September 12, 2024, 61% were renewed on an ex parte basis while 39% were renewed through a renewal form, though rates vary across states. Under federal rules, states are required to first try to complete administrative (or “ex parte”) renewals by verifying ongoing eligibility through available data sources, such as state wage databases, before sending a renewal form or requesting documentation from an enrollee. Ex parte renewal rates varied across states from 90% or more in Arizona, North Carolina, and Rhode Island to less than 20% in Pennsylvania and Texas.
Federal Data on Renewal Outcomes
The data presented here are cumulative unwinding metrics published by CMS. These counts and percentages may differ from the above data, which present renewal metrics reported on state websites when state-reported data are more complete.
Figure 1 below shows cumulative renewal data reported by CMS during states’ unwinding periods. Renewal data for the months after the end of states’ unwinding period are excluded. The data reflect updated unwinding data reported by states three months after the original monthly reports as they become available.
Note: The state data presented below were last updated on September 12, 2024; since most states have now completed the Medicaid unwinding, the information will not be updated again.
The data presented here provide state-level data on enrollment trends and renewal outcomes during the unwinding period. Figure 1 shows total Medicaid enrollment by month starting in January 2023 and, once disenrollments resumed in a state, the cumulative percent change in Medicaid enrollment relative to the month before Medicaid disenrollments started (this baseline month will differ across states). Figure 2 shows renewal metrics for each month of a state’s unwinding period (or cumulative data for the unwinding period for some states).
Editorial Note: This resource was originally published on February 24, 2025, and will be updated as needed to reflect additional developments.
Starting on the first day of his second term, President Trump began to issue numerous executive actions, several of which directly address or affect health programs, efforts, or policies to meet the health needs of LGBTQ+ people. This guide provides an overview of these actions, in the order in which they were issued. The “date issued” is date the action was first taken; subsequent actions, such as litigation efforts, are listed under “What Happens/Implications.” It is not inclusive of administrative actions that impact LGBTQ+ people that are not directly related to health and health care access, such as efforts related to participation in sport even though those actions might have an impact on well-being. In addition, within the actions examined, only provisions directly related to health and health access are described in table.
Purpose: Initial rescissions of Executive Orders and Actions issued by President Biden.
Among these orders are several that addressed LGBTQ+ equity including “Preventing and Combating Discrimination on the Basis of Gender Identity or Sexual Orientation” (Executive Order 13988) and “Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals” (Executive Order 14075). The order establishing the White House Gender Policy Council (Executive Order 14020) and several Orders related to diversity, equity, and inclusion were also rescinded, as were orders related to nondiscrimination and equity in schools.
Implications: This order could lead to less oversight, reduced health programing, and fewer policies protecting LGBTQ+ people, which could negatively impact access to care and well-being. Of particular note:
• Rescinds orders that had called for LGBTQ+ people’s health equity, the national public health needs of LGBTQ+ people, LGBTQ+ data collection, and nondiscrimination protections, including in health care.
• Rescinds orders that had called for nondiscrimination protections for LGBTQ+ young people in school, which could contribute to stigma and worsened mental health.
Purpose: To define sex as an immutable binary biological classification and remove recognition of the concept of gender identity, including in sex protections and in agency operations.
The order states that “It is the policy of the United States to recognize two sexes, male and female” and directs the Executive Branch to “enforce all sex-protective laws to promote this reality”. Elements of the order that may affect LGBTQ people’s health are as follows:
• Defines sex as “an individual’s immutable biological classification as either male or female.” States that “’sex’ is not a synonym for and does not include the concept of ‘gender identity’” and that gender identity “does not provide a meaningful basis for identification and cannot be recognized as a replacement for sex.”
• Defines male and female based on reproductive cell production. Introduces the term “gender ideology” which is defined to include “the idea that there is a vast spectrum of genders that are disconnected from one’s sex” and “maintains that it is possible for a person to be born in the wrong sexed body.”
• Directs the Secretary of Health and Human Services (HHS) to provide the U.S. government, external partners, and the public guidance expanding on the sex-based definitions set forth in the order within 30 days.
• Directs each agency and all federal employees to “enforce laws governing sex-based rights, protections, opportunities, and accommodations to protect men and women as biologically distinct sexes,” including “when interpreting or applying statutes, regulations, or guidance and in all other official agency business, documents, and communications.”
• Directs each agency and all Federal employees, “when administering or enforcing sex-based distinctions,” to “use the term ‘sex’ and not ‘gender’ in all applicable Federal policies and documents.”
• Directs agencies to “remove all statements, policies, regulations, forms, communications, or other internal and external messages that promote or otherwise inculcate gender ideology, and shall cease issuing such statements, policies, regulations, forms, communications or other messages.”
• Directs agency forms to exclude gender identity and directs agencies to “take all necessary steps, as permitted by law, to end the Federal funding of gender ideology.”
• Requires that federal funds “not be used to promote gender ideology” and directs agencies to ensure “grant funds do not promote gender ideology.”
• Directs the Attorney General to ensure the Bureau of Prisons revises policies to prohibit federal funds from being expended “for any medical procedure, treatment, or drug for the purpose of conforming an inmate’s appearance to that of the opposite sex.”
• Rescinds multiple executive orders issued by President Biden, including: “Preventing and Combating Discrimination on the Basis of Gender Identity or Sexual Orientation” (13988), “Establishment of the White House Gender Policy Council” (14020) (which is also dissolved), and “Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals” (14075).
• Also directs agencies to rescind certain guidance documents, including, “The White House Toolkit on Transgender Equality”; “The Attorney General’s Memorandum of March 26, 2021 entitled “Application of Bostock v. Clayton County to Title IX of the Education Amendments of 1972,” and range of orders related to LGBTQ+ students in schools.
Implications: This order is broad, directed to all federal agencies and programs. Because federal health programs reach LGBTQ+ people, and some are specifically designed to be inclusive of the LGBTQ+ community, or account for gender identities in addition to biological sex, this Order could widely affect program funding, guidance, and access. It has several possible implications:
The terms used in the Order include several biological and social inaccuracies which could perpetuate misinformation about LGBTQ+ people and transgender people’s health needs. It also takes steps towards ban gender care in certain area, most explicitly in prisons.
Requiring that federal funds are not used to “promote gender ideology” has caused significant confusion. Since this order was issued, there have been multiple reports of HIV programs and community health centers that have lost funding as a result of supporting programs inclusive of transgender people. In addition, there have been reports that some health care facilities paused providing youth with gender affirming care, fearing that federal funding would be withheld according to this and another Order relating to youth access to gender affirming care (see separate entry). (See court decisions below.) Withholding care could lead to negative health outcomes for those that require it.
Data collection and data presentation/distribution have been impacted. At first some data was removed from federal websites, though due to court order this appears to have been restored. If public health messaging and services related to the health needs of transgender people, or other specific populations, are unavailable, this may result in adverse health outcomes such increased disease prevalence, greater difficulty with care engagement, and poor mental health outcomes. There have been reports that gender identity questions will be removed from federal surveys which makes tracking the experiences and well-being of LGBTQ+ people more difficult.
The order directs the HHS Secretary to take action to end gender affirming care through Section 1557 of the Affordable Care Act (ACA), the law’s major nondiscrimination provision, which includes protections on the basis of sex. While the Biden administration interpreted sex protections to include sexual orientation and gender identity, it is expected that the Trump administration will seek to remove these protections, as was the approach during his first term. Despite the Executive Orders and any future guidance, courts could continue to rule that such protections exist in statute.
On March 17th the VA announced that it would phase out providing gender affirming care to comply with this Executive Order. Exceptions include Veterans already receiving hormone therapy from the VA or Veterans “receiving such care from the military as part of and upon their separation from military service” who are eligible for VA health care. The VA will not provide other gender affirming medical services.
The statement writes that historically the VA had provided a range of gender affirming services and “letters of support encouraging non-VA providers to perform sex-change surgeries on Veterans.” These services had been authorized under the now rescinded Veterans Health Administration Directive 1341(4).
There have been multiple legal challenges to this Order with some judicial actions that have paused aspects of implementation:
• On February 4, 2025 a lawsuit was filed in federal court challenging the Order on the grounds that it usurps Congressional power, violates Sec. 1557 of the ACA, and is unconstitutional and on February 11 a temporary restraining order and memorandum opinion was issued requiring restoration of webpages, datasets, and any other resources needed to provide medical care, identified by the Plaintiffs.
• On February 4, 2025, a separate federal lawsuit was filed challenging this Order and the Executive Order on “Protecting Children from Chemical and Surgical Mutilation” (see separate entry), asserting they are openly discriminatory, unlawful, and unconstitutional. On February 13, a federal judge issued a temporary restraining order preventing the federal government from withholding or conditioning funding on the basis of providing this care.
• An additional suit was filed on February 19, 2025 by the National Urban League, National Fair Housing Alliance, and AIDS Foundation of Chicago challenging three Executive Orders: “Ending Radical and Wasteful DEI Programs and Preferencing”, “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” as usurping the power of Congress, violating the Constitution and the Administrative Procedures Act, and, seeking declaratory and injunctive relief. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ+ communities and the programs that serve them.
• On February 20, a separate case was filed in federal court by multiple LGBTQ+ health care and service organizations, challenging the “Ending Radical and Wasteful DEI Programs and Preferencing”, “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” Orders claiming they usurp the power of Congress and violate the Constitution. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ communities and the programs that serve them. On June 9th, 2026, the court issued a preliminary injunction, blocking in part key provisions in this EO and in the DEI EO including those that instruct agencies to remove and cease to issue materials and “communications…that promote or otherwise inculcate gender ideology” and instructing agencies to “end the Federal funding of gender ideology”; prohibit federal funds from being “used to promote gender ideology,”; and direct agencies and departments to terminate DEI offices and positions, materials, initiatives, performance requirements, and grants or contracts.
• On March 12, 2025 two physician and academic plaintiffs filed a lawsuit challenging the Order and related OPM memo when their articles were removed from HHS’ Agency for Healthcare Research and Quality (AHRQ)’s Patient Safety Network (PSNet), a federal online patient-safety resource. The reason for the removal articles was for their inclusion of passing references to transgender patients. On May 23, a MA district court found the plaintiffs would likely succeed on their constitutional 1st amendment claims and granted a preliminary injunction requiring HHS to republish the censored content.
Purpose: To limit diversity, equity, inclusion, and accessibility (DEIA) activities in government and by government contractors and grantees.
Directs each agency, department, or commission head to take the following actions (among others): • terminate, to the maximum extent allowed by law, all DEI, DEIA, and “environmental justice” offices and positions…; all “equity action plans,” “equity” actions, initiatives, or programs, “equity-related” grants or contracts… • provide the Director of the OMB with a list of all “federal grantees who received Federal funding to provide or advance DEI, DEIA, or “environmental justice” programs, services, or activities since January 20, 2021,” among other actions.
Implications: As with the other DEIA related Order (see separate entry), these efforts could make reaching populations with unique health needs in culturally competent ways more challenging, including in programs related to LGBTQ+ health and HIV. It could also jeopardized programs and funding for agencies reaching these communities. There have been multiple legal challenges to this Order:
• On February 3, a lawsuit was filed by four diverse plaintiffs challenging the constitutionality of this Order and the Order, “Ending Illegal Discrimination and Restoring Merit-Based Opportunity”.
• An additional suit was filed in federal court on February 19, 2025 by the National Urban League, National Fair Housing Alliance, and AIDS Foundation of Chicago challenging this order as well as the “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” ” as usurping the power of Congress, violating the Constitution and the Administrative Procedures Act, and, seeking declaratory and injunctive relief. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ communities and the programs that serve them.
• On February 20, a separate case was filed in federal court by multiple LGBTQ+ health care and service organizations, challenging the “Ending Radical and Wasteful DEI Programs and Preferencing”, “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” orders claiming they usurp the power of Congress and violate the Constitution. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ communities and the programs that serve them. On June 9th, 2026, the court issued a preliminary injunction, blocking in part key provisions in this EO and in the “gender ideology” EO including those that instruct agencies to remove and cease to issue materials and “communications…that promote or otherwise inculcate gender ideology” and instructing agencies to “end the Federal funding of gender ideology”; prohibit federal funds from being “used to promote gender ideology,”; and direct agencies and departments to terminate DEI offices and positions, materials, initiatives, performance requirements, and grants or contracts.
Ending Illegal Discrimination and Restoring Merit-Based Opportunity, January 21, 2025
Purpose: Order seeks to end federal “preferencing” through DEIA efforts within government and through contracting to the extent that they do not comply with the Administration’s view of civil rights law.
The order is broad and non-specific but includes the following directives:
• Orders all executive departments and agencies “to terminate all discriminatory and illegal preferences, mandates, policies, programs, activities, guidance, regulations, enforcement actions, consent orders, and requirements. I further order all agencies to enforce our longstanding civil-rights laws and to combat illegal private-sector DEI preferences, mandates, policies, programs, and activities.”
• Orders agency heads to include in every contract or grant award “a term requiring the contractual counterparty or grant recipient to agree that its compliance in all respects with all applicable Federal anti-discrimination laws is material to the government’s payment decisions for purposes of section 3729(b)(4) of title 31, United States Code; and…A term requiring such counterparty or recipient to certify that it does not operate any programs promoting DEI that violate any applicable Federal anti-discrimination laws.”
Implications: As with the other DEIA related Order (see separate entry), these efforts could make reaching populations with unique health needs in culturally competent ways more challenging, including in programs related to LGBTQ+ health and HIV. It could also jeopardized programs and funding for agencies reaching these communities.
There have been multiple legal challenges to this Order:
• On February 3, a lawsuit was filed by four diverse plaintiffs challenging the constitutionality of this and the “Ending Radical and Wasteful Government DEI Programs and Preferencing” Order.
• An additional suit was filed in federal court on February 19, 2025 by the National Urban League, National Fair Housing Alliance, and AIDS Foundation of Chicago challenging this order as well as the “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Radical and Wasteful Government DEI Programs and Preferencing” as usurping the power of Congress, violating the Constitution and the Administrative Procedures Act, and, seeking declaratory and injunctive relief. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ communities and the programs that serve them.
• On February 20, a separate case was filed in federal court by multiple LGBTQ+ health care and service organizations, challenging the “Ending Radical and Wasteful DEI Programs and Preferencing”, “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” and the “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” orders claiming they usurp the power of Congress and violate the Constitution. In their complaint, plaintiffs highlight the potential harm this Order could bring to people with HIV and LGBTQ communities and the programs that serve them.
Purpose: Order directs agencies and programs to work towards significantly limiting access to gender affirming care for young people (defined as those under age 19) nationwide.
• Directs agencies to rescind and amend policies that rely on guidance from the World Professional Association for Transgender Health (WPATH).
•Directs the HHS Secretary to conduct and publish a review of existing literature and best practices related to gender affirming care and gender dysphoria and to “increase the quality of data to guide practices“ in this area.
•Directs executive department and agency heads “that provide research or education grants to medical institutions, including medical schools and hospitals”, “in coordination with the Director of the Office of Management and Budget” to “immediately take appropriate steps to ensure that institutions receiving Federal research or education grants end the chemical and surgical mutilation of children” (which is how the Order defines gender affirming care).
•Directs the HHS Secretary to take action to end gender affirming care for children “including [through] regulatory and sub-regulatory actions, which may involve the following laws, programs, issues, or documents: – Medicare or Medicaid conditions of participation or conditions for coverage – clinical-abuse or inappropriate-use assessments relevant to State Medicaid programs – mandatory drug use reviews – section 1557 of the Patient Protection and Affordable Care Actquality, safety, and oversight memoranda – essential health benefits requirements; and – the Eleventh Revision of the International Classification of Diseases and other federally funded manuals, including the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.”
• Withdraws Biden Administration “HHS Notice and Guidance on Gender Affirming Care, Civil Rights and Patient Privacy” and directs the Secretary of HHS “in consultation with the Attorney General [to] issue new guidance protecting whistleblowers who take action related to ensuring compliance with this order.”
• Directs the Secretary of the Department of Defense to “commence a rulemaking or sub-regulatory action” restrict access to gender affirming care for children in the TRICARE program.
• Directs the Director of the Office of Personnel Management to limit access to care in coverage for federal employees’ families by requiring “provisions in the Federal Employee Health Benefits (FEHB) and Postal Service Health Benefits (PSHB) programs call letter for the 2026 Plan Year” that would require eligible carriers to exclude “coverage for pediatric transgender surgeries or hormone treatments…”
• Directs the Attorney General to review Department of Justice laws on female genital mutilation and “prioritize enforcement of protections” and “to convene States’ Attorneys General and other law enforcement officers to coordinate the enforcement of laws against female genital mutilation.”
• Directs the Attorney General to “prioritize investigations and take appropriate action to end deception of consumers, fraud, and violations of the Food, Drug, and Cosmetic Act by any entity that may be misleading the public about long-term side effects of chemical and surgical mutilation.”
• Directs the Attorney General “in consultation with the Congress” “to draft, propose, and promote legislation to enact a private right of action for children and the parents” who have received gender affirming care “which should include a lengthy statute of limitations.
• Directs the Attorney General to “prioritize investigations and take appropriate action to end child-abusive practices by so-called sanctuary States that facilitate stripping custody from parents who support the healthy development of their own children, including by considering the application of the Parental Kidnapping Prevention Act and recognized constitutional rights.”
• Directs agency heads included in this executive order to “submit a single, combined report to the Assistant to the President for Domestic Policy, detailing progress in implementing this order and a timeline for future action” within 60 Days of its issuance.
Implications: If fully implemented, the Order would broadly and extensively limit access to gender affirming care for young people, across a range of payers and providers. Access to gender affirming care is associated with improved mental health outcomes for transgender people and limiting this care with negative ones, including poorer mental health outcomes. Additional impact includes:
• The executive order includes details about sex, gender identity, gender affirming care, and transgender people that conflict with science and evidence. These inaccuracies include suggesting that large shares of youth are seeking gender affirming medical care, that regret rates among those seeking care are high, and conflating “female genital mutilation” and gender-affirming care. This has the potential to promote hostility, stigma, and discrimination, and can lead to care denials.
• It seeks to remove Federal reference to one of the standards of evidence-based care for transgender people in the US. Directing the HHS Secretary to develop new guidance without this standard, and in accordance with this and other orders, could limit agency ability to identify standards that adequately meet the needs of transgender people.
• It also seeks to condition federal research and education grants on grantees not providing young people with gender affirming care.
• There has already been some confusion with certain states and providers looking to preemptively comply with the order and another Order relating to “gender ideology” (see separate entry).
• The order lays groundwork for the Administration remove explicit protects for LGBTQ+ people in health care, including with respect to accessing gender affirming care. Specifically, the Order suggests a reinterpretation of sex protections in Section. 1557 of the Affordable Care Act void of explicit protections on the basis of sexual orientation and gender identity.
• The order leans on laws and policies unrelated to gender affirming care in an effort to limit access to those services including by erroneously conflating gender affirming care and female genital mutilation, using the FDA regulatory process to limit access, and suggesting kidnapping protections be applied to parents in certain circumstance.
On February 19, 2025, additional guidance was released relating to this order, providing new and refined definition of terms “ which directs the Department of Health and Human Services (the Department) to promulgate clear guidance to the U.S. Government, external partners, and the public, expanding on the sex-based definitions set forth in the Executive Order.”
On February 20, 2025, pursuant to this Order, HHS issued a “Recession of ‘HHS Notice and Guidance on Gender Affirming Care, Civil Rights, and Patient Privacy’ issued by the Biden Administration” which had stated the Administration “stands with transgender and gender nonconforming youth” and that medically necessary for gender affirming care for minors improves physical and mental health. It also reiterated that administration’s view that Sec. 1557 of the ACA includes protections on the basis of sexual orientation and gender identity.
There have been multiple legal challenges to this Order with some judicial actions that have paused aspects of implementation:
• On February 4, 2025, a federal lawsuit was filed challenging this Order and the Executive Order on “Defending Women From Gender Ideology Extremism and Restoring Biological Truth to The Federal Government,” asserting they are openly discriminatory, unlawful, and unconstitutional. On February 13, a federal judge issued a temporary restraining order preventing the federal government from withholding or conditioning funding on the basis of providing this care. On March 4th, the court issued a preliminary temporary injunction.
• An additional federal lawsuit was filed on February 7th challenging this executive order with a separate temporary restraining order being issued on the 14th preventing the conditioning of federal funds and also applying to a condition linking gender affirming care to female genital mutilation. The restraining order was extended through March 5th on February 26th.
On June 1, the FBI posted on social media urging the public to “report tips of any hospitals, clinics, or practitioners performing these surgical procedures on children,” despite pediatric gender affirming care being permitted in about half of states and not prohibited by the federal government.
Purpose: Order seeks to end federal “preferencing” through DEIA efforts within government and through contracting to the extent that they do not comply with the Administration’s view of civil rights law.
The order is broad and non-specific but includes the following directives:
• Orders all executive departments and agencies “to terminate all discriminatory and illegal preferences, mandates, policies, programs, activities, guidance, regulations, enforcement actions, consent orders, and requirements. I further order all agencies to enforce our longstanding civil-rights laws and to combat illegal private-sector DEI preferences, mandates, policies, programs, and activities.”
• Orders agency heads to include in every contract or grant award “a term requiring the contractual counterparty or grant recipient to agree that its compliance in all respects with all applicable Federal anti-discrimination laws is material to the government’s payment decisions for purposes of section 3729(b)(4) of title 31, United States Code; and…A term requiring such counterparty or recipient to certify that it does not operate any programs promoting DEI that violate any applicable Federal anti-discrimination laws.”
Implications: Should the federal government proceed with conditioning federal funding for schools on whether or not they support transgender students, it could exacerbate existing mental health disparities, contribute to stigma and discrimination, and reduce school connectedness. For example, the policies detailed in the Order could prevent schools from recognizing transgender students’ identities (e.g. their names and pronouns), allow schools to withhold mental health services, to out students to (potentially unsupportive) families, and to restrict facility use and activity participation.
Purpose: The memorandum seeks to “stop funding Nongovernmental Organizations that undermine the national interest and administration priorities.”
The memorandum states:
• It is Administration policy “to stop funding [Nongovernmental Organizations] NGOs that undermine the national interest.”
• Direct heads of executive departments and agencies to review all funding that agencies provide to NGOs and “to align future funding decisions with the interests of the United States and with the goals and priorities of my Administration, as expressed in executive actions; as otherwise determined in the judgment of the heads of agencies; and on the basis of applicable authorizing statutes, regulations, and terms.”
Implications: This memo aligns with other administrative efforts to stop current and future funding from being provided to NGOs that do not align with administrative priorities and could impact funding to health organizations or programs aimed at serving transgender people or research funding inclusive of trans and gender diverse people. It could also potentially impact care for LGBTQ+ people more broadly if services aimed directly at this population are considered DEIA efforts.
Purpose: “To notify the Court that the government’s previously stated views” on a case challenging a state’s ban on gender affirming care “no longer represents the United States’ position.”
• Notifies the Court that “following the change in Administration, the Department of Justice has reconsidered the United States’ position in” the case brought by the Biden Administration challenging Tennessee’s ban on gender affirming care for minors. The letter states, that their view is that the Tennessee law being challenged “does not deny equal protection on account of sex or any other characteristic,” which is the question before the Court.
• Despite this change in perspective, the Trump Administration encouraged the Court to resolve the questions presented without granting certiorari to the original plaintiffs.
Implications: There are 26 states with bans on gender affirming care for minors and litigation challenging these bans is ongoing. At the request of the Biden Administration, who brought the plaintiff’s case from the lower courts, the Supreme Court agreed to examine whether the Tennessee ban violates Equal Protection constitutional protections under the 14th Amendment. The case was briefed and argued prior to the administration change. Upon taking office, the Trump Administration wrote this letter to the Court stating that the Biden Administration position no longer represented that of the U.S. government but nevertheless asked the court to decide the case. The court will likely issue a decision in the case and technically, the Trump Administration letter should not have bearing on the court’s decision. The court is expected to issue a decision in the case this summer (2025).
Purpose: To alert providers to the administration’s approach to children’s access to gender affirming care and serve as notice “that CMS may begin taking steps in the future to align policy, including CMS-regulated provider requirements and agreements…” to limit such care.
The memorandum states:
• That “CMS renews its commitment to promoting evidence-based standards through health quality and safety improvement activities, and reminds hospitals and other applicable facilities and providers of the obligation to prioritize the health and safety of their patients, especially children.” It questions evidence around gender affirming care for young people and states “CMS may begin taking steps in the future to adjust its policies to reflect this…”
Implications:
• The CMS memo aligns with policies put forward in the Executive Order, “Protecting Children From Chemical and Surgical Mutilation,” related to limiting young people’s access to gender affirming care, provisions of which are subject to a nationwide preliminary injunction (described in above entry). However, this is not explicitly stated in the memo.
• On March 6th the Health Resources & Services Administration (HRSA) and Substance Abuse and Mental Health Services Administration (SAMHSA) released additional guidance stating that they would review policies, grants, and programs for consistency with the CMS memo (SAMHSA letter unavailable but described in this filing). HRSA also specifically notes the agency will review its Children’s Hospitals Graduate Medical Education (CHGME) Payment Program for consistency with the memo.
• While the memo does not specifically refer to the Executive Order, on March 7th, plaintiffs in a case challenging the order sought enforcement of the preliminary injunction claiming that the CMS memo and HRSA/SAMHSA guidance violate its terms because by “threatening to withhold federal funding, the Executive Orders coerced hospitals into immediately shutting down gender affirming medical care for people under nineteen to avoid potential loss of funds.”
• Depending on how future policy is implemented, CMS could seek to significantly limit access to gender affirming care for young people.
Purpose: The memorandum seeks to “stop funding Nongovernmental Organizations that undermine the national interest and administration priorities.”
The memorandum states:
• It is Administration policy “to stop funding [Nongovernmental Organizations] NGOs that undermine the national interest.”
• Direct heads of executive departments and agencies to review all funding that agencies provide to NGOs and “to align future funding decisions with the interests of the United States and with the goals and priorities of my Administration, as expressed in executive actions; as otherwise determined in the judgment of the heads of agencies; and on the basis of applicable authorizing statutes, regulations, and terms.”
Implications:The proclamation includes details about gender affirming care and transgender people that conflict with science and evidence, including that children are being “indoctrinated” “with the devastating lie that they are trapped in the wrong body,” referring to gender affirming surgery (which is very rare among young people) as “sexual mutilation surgery,” and suggesting that such care inhibits “happiness, health, and freedom,” for young people and creates “heartbreak” for parents and families.
• By erroneously conflating gender affirming care and abuse, potentially threatens those providing or facilitating access by stating, “we affirm that every perpetrator who inflicts violence on our children will be punished to the fullest extent of the law.”
Purpose: Reverses a Biden Administration policy that had permitted the Ryan White HIV/AIDS Program to cover certain gender affirming care services as a part of whole person care to transgender people with HIV.
• Referring to a policy on gender affirming care from the Biden administration, the letter states that “under the previous administration, certain interpretations of RWHAP’s allowable uses…co-opted the program’s patient centered mission in favor of radical ideological agendas and policies.”
• The letter further states “that RWHAP funds shall be marshaled exclusively toward evidence-based interventions proven to combat HIV, sustain viral suppression, and improve the quality of life for those living with the disease” and reaffirms the prohibition on funding services outside the scope of outpatient care, including “surgeries and inpatient care, irrespective of setting or anesthesia”
Implications:
• Previously, Ryan White funds were permitted to be used to support gender affirming care within core medical and support service categories, including through the provision of hormones via ADAP programs. Additionally, funds could be used to “provide behavioral and mental health services to clients experiencing gender dysphoria and social and emotional stress related to transgender discrimination, stigma, and rejection.” The policy under the prior Administration prohibited surgery, as does the new one, so that does not represent a change.
• Prohibiting use of funds to support certain gender affirming care services may make care engagement more challenging for transgender Ryan White clients. In some cases, gender affirming care may have helped to connect clients with HIV services and thus improve HIV outcomes.
Purpose: HHS issued this notice “to clarify the non-enforceability of certain language that was included in the preamble to—but not the regulatory text of” the final rule on Section 504, “titled ‘Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance.’ The clarification states that language in the preamble concerning gender dysphoria, which is not in the regulatory text, does not have the force or effect of law and cannot be enforced.
Implications:
• Section 504 prohibits recipients of federal funding, including publicly-subsidized health payers and health care providers who accept Medicare or Medicaid, from discriminating against people on the basis of disability. The Biden Administration’s final rule on Sec. 504 included in the preamble that HHS would “approach gender dysphoria as it would any other disorder or condition. If a disorder or condition affects one or more body systems, or is a mental or psychological disorder, it may be considered a physical or mental impairment.”
• This new interpretation could weaken certain protections for transgender and gender non-conforming people.
Purpose: “The purpose of this letter is to ensure that state Medicaid agencies are aware of growing evidence regarding certain procedures offered to children, and to remind states of their responsibility to ensure that Medicaid payments are consistent with quality of care and that covered services are provided in a manner consistent with the best interest of recipients.”
States that “medical interventions for gender dysphoria in children have proliferated” and that “several developed countries have recently diverged from the U.S. in the way they treat gender dysphoria in children.”
CMS reminds states of the following federal Medicaid requirements:
• Program “responsibility to ensure that payments are consistent with ‘efficiency, economy, and quality of care.’”
• Requirement for states to “provide such safeguards as may be necessary to ensure covered care and services are provided in a manner consistent with the best interests of recipients.”
• Prohibition on “federal funding for coverage of services whose purpose is to permanently render an individual incapable of reproducing. Federal financial participation (FFP) is strictly limited for procedures, treatments, or operations for the purpose of rendering an individual permanently incapable of reproducing and…prohibited for such procedures performed on a person under age 21.”
• Drug utilization review (DUR) program requirements “to assure that prescribed drugs are appropriate, medically necessary, and are not likely to result in adverse results.” – CMS encourages “states to review their DUR programs to ensure alignment with current medical evidence and federal requirements, including the evidence outlined above. – Notes that “additional guidance on DUR approaches is forthcoming.”
Implications:
• Letter appears to encourage states to take steps to limit gender affirming care for youth within their state Medicaid programs and suggests that not doing so could put them out of compliance with federal law. It does not immediately change policy.
• Letter misrepresents certain information about gender affirming care including its frequency and the approach in international settings.
• Letter leverages a law aimed at addressing discrimination/unwanted sterilizations among people with disabilities to limit gender affirming care.
• The letter could lead to changes in state policy-making or make providers and/or employers less likely to cover services which could ultimately lead to more limited access to GAC.
• CMS issued a press release along with the letter. The letter stated “Medicaid dollars are not to be used for gender reassignment surgeries or hormone treatments in minors.”
Purpose: An internal Department of Justice (DOJ) memorandum seeks to implement, in part, an executive order aimed at limiting minor’s access to gender affirming care (GAC) (see above).
The memo is an internal document that was leaked. It is not law but provides guidance relating to an earlier executive order aimed at limiting minor access to gender affirming care (see above). The memo reportedly:
• The internal document was leaked and is not law but provides guidance relating to an earlier executive order aimed at limiting minor access to gender affirming care.
• Puts providers “on notice” that “it is a felony to perform, attempt to perform, or conspire to perform female genital mutilation (“FGM”*) on” minors and states that the FBI “alongside federal, state, and local partners, will pursue every legitimate lead on possible FGM cases.”
• States DOJ “will investigate and hold accountable medical providers and pharmaceutical companies that mislead the public about the long-term side effects of chemical and surgical mutilations.”
• Directs “investigations of any violations of the Food, Drug, and Cosmetic Act by manufacturers and distributors engaged in misbranding by making false claims about the…use of puberty blockers, sex hormones, or any other drug” in GAC.
• Directs “investigations under the False Claims Act of false claims submitted to federal health care programs for any non-covered services related to radical gender experimentation.” Gives example of prescribing puberty blockers to a minor for GAC but reporting the service as being for early onset puberty. States Department will work with whistleblowers “with knowledge of any such violations” under The False Claims Act.
• Following prior direction “that Department employees shall not rely on”… the World Professional Association for Transgender Health (WPATH)… “guidelines, and that they should withdraw all court filings” doing so, “expressly extend[s] that direction to all Department employees.” Directs department to “purge all…policies, memoranda, and publications and court filings based on WPATH guidelines.”
• Launches “the Attorney General’s Coalition Against Child Mutilation” to “partner with state attorneys general to identify leads, share intelligence, and build cases against…” providers “…violating federal or state laws banning female genital mutilation and other, related practices…[and] support the state-level prosecution of medical professionals who violate state laws “prohibiting gender affirming care.
• Instructs Office of Legislative Affairs to draft legislation “creating a private right of action for children and the parents of children” who have had gender affirming care with “a long statute of limitations and retroactive liability” and work with Congress “to bring this bill to President Trump.”
Implications:
• The memo directs action but is not law. It seeks to implement an executive order that is, in part, currently enjoined in court.
• The memo includes inaccuracies relating to gender identity, gender affirming care, and transgender people that conflict with science and evidence. These inaccuracies include suggesting that being transgender is a harmful medical condition, that large shares of youth are seeking gender affirming medical care, that regret rates among those seeking care are high, and conflating “female genital mutilation” and gender-affirming care. This has the potential to promote hostility, stigma, and discrimination, and can lead to care denials.
• Seeks to discredit WPATH’s widely relied on standard of care guidelines which providers look to deliver best practices gender affirming care and is regularly referenced by major medical associations including the American Psychological Association.
• While nothing in the memo prohibits provision of gender affirming care, its emphasis on litigation and enforcement of existing law that do not necessarily implicate this care, could have a chilling effect on providers.
“This Review of evidence and best practices was commissioned pursuant to Executive Order 14187, signed on January 28, 2025. It is not a clinical practice guideline, and it does not issue legislative or policy recommendations. Rather, it seeks to provide the most accurate and current information available regarding the evidence base for the treatment of gender dysphoria in this population, the state of the relevant medical field in the United States, and the ethical considerations associated with the treatments offered. The Review is intended for policymakers, clinicians, therapists, medical organizations and, importantly, patients and their families.” Among the report’s findings:
• Report concludes that the quality of evidence on the effects of gender affirming intervention is low but also that evidence on harms is “sparse.”
• Cites “significant risks” of medical transition, departing from most medical associations and widely used guidelines in the U.S.
• In addition to a focus on medical intervention (e.g. surgery, puberty blockers, and hormones) report discusses role of psychotherapy in gender affirming care, supporting the use of psychotherapeutic approaches, including an approach termed “exploratory therapy”, which can include conversion therapy. Conversion therapy is a practice that seeks to change an individual’s sexual orientation or gender identity. These practices contrast with recommendations from major medical associations, which criticize conversion efforts for their lack evidence, ineffectiveness, and because they can cause harm. Additionally, many states ban these practices for the same reasons.
Implications:
• Review could be used as support for other actions the administration seeks to take (some described here) aimed at limiting minor access to gender affirming care. Outside experts, including from the American Academy of Pediatrics, have raised concerns that the “report misrepresents the current medical consensus and fails to reflect the realities of pediatric care.”
• With respect to therapeutic practices, it could shift how some practitioners approach gender affirming care or potentially provide support to those using conversion related approaches.
• The report could also fuel misinformation in other areas, particularly around regret rates (which the report states are high when they are actually very low) and the share of young people seeking a medical transition (which the report states is large, when the share is small).
On May 28, 2025, HHS sent a letter to an unspecified group of providers, state medical boards, and health risk managers urging providers to update treatment protocol to align with the review’s findings and avoid relying on the WPATH Standards of Care (which are seen by gender affirming care providers as valuable and trusted source of guidance.) The letter points to risk but not benefits of gender affirming medical care and highlights the report’s promotion of psychotherapy as an alternative to other medical care.
Purpose: The letter from the Center for Medicare and Medicaid Services (CMS) is directed at “select hospitals” providing minors with gender affirming care services including puberty blockers, hormones, and surgeries. The aim of the letter is to collect information on the delivery of these services and their associated costs and revenue. CMS states they are collecting this data to “ensure quality standards at institutions participating in the Medicare and Medicaid programs” and because “CMS has an obligation to be a good steward of taxpayer dollar.”
In the letter CMS asks for information on the following within 30 days: • consent protocols for children with gender dysphoria, including when parental consent is required • changes to clinical practice guidelines and protocols in light of the HHS Review (see above entry) • adverse events, particularly children who later look to detransition billing codes utilized for gender affirming care • facility and provider-level revenue and profit margins data related to these services
Implications: If facilities or providers believe HHS is excessively engaged in oversight of their practice of this area of medicine, it could have a chilling effect on willingness to provide these treatments. Depending on what the Administration does with data collected, this effort could represent a significant step in the administration’s aim to limit GAC for minors.
The effort to collect this level of information is likely burdensome for providers, particularly within a 30-day period.
The letter appears to stoke misinformation in its suggestion that there is a lack of parental involvement or consent in the practice of gender affirming care and that regret is a serious problem in this field.
It also appears to question the validity of using federal dollars to provide this care and possibly that delivering these services to minors is a significant cost-burden to the federal government. Because just a small share of the population is transgender, and not all trans people seek medical intervention, costs are likely very low.
Purpose: To rescind a bulletin from the Biden administration that provided state Medicaid programs with guidance on implementing optional sexual orientation and gender identity (SOGI) questions on their applications for coverage.
The Trump administration bulletin states that “CMS no longer intends to collect this information from state Medicaid and Children’s Health Insurance Program (CHIP) agencies as part of Transformed Medicaid Statistical Information System (T-MSIS) data submissions.”
Implications: Collection of SOGI health data plays a role in documenting the health experiences and status of LGBTQ+ people. Data collection can reveal disparities and gaps in access, which can, in turn, inform policy making to address these challenges. Without this data, addressing these disparities is more challenging. SOGI Data collection expanded under the Biden administration and has retracted under the Trump administration.
Purpose: The rule prohibits gender affirming care services from being covered as an Essential Health Benefit (EHB) in ACA plans. CMS changes how ACA complaint individual and small group plans cover gender affirming care services, which the rule calls “coverage for sex-trait modification.” Beginning plan year 2026, insurers are prohibited from covering gender affirming care as an essential health benefit (EHB).
Differing from the proposed rule, which offered no definition, HHS defines “sex-trait modification” services to mean “any pharmaceutical or surgical intervention that is provided for the purpose of attempting to align an individual’s physical appearance or body with an asserted identity that differs from the individual’s sex.” If a state mandates coverage for gender affirming care, the state would be required to defray the cost.
The preamble to the rule clarifies that CMS finds that as non-EHB services, EHB non-discrimination in the ACA do not apply.
Implications: The aim of the final rule aligns with policies expressed in Executive Orders on gender and limiting access to gender affirming care (discussed above), though the agency states the rule does not rely on these orders or their enjoined sections. The agency writes that the purpose of the rule is to ensure that health plans meet the ACA’s “typicality requirement,” that is that EHBs be “equal to the scope of benefits provided under a typical employer plan.” The preamble to the rule discusses debate among commenters about whether inclusion of these services is typical.
The rule does not mean that plans cannot cover gender affirming care services but excluding certain services from coverage as EHBs means that enrollees would not be assured the same cost-sharing and benefit design protections as for services included in the EHB package. Costs accrued for gender affirming care would not be required to count towards deductibles or out-of-pocket maximums and would not be protected from annual or lifetime limits, increasing out-of-pocket liability. Additionally, the portion of premiums attributable to specified gender affirming services would not be eligible for premium tax credits or cost-sharing reductions for low- and moderate-income enrollees.
While CMS does not believe the impact will be significant, some commenters expressed concern that the policy change, particularly its near implementation date for 2026 plan year, could create challenges for issuers, which have already been engaged in (and some completed) rate setting for 2026. They also stated that change would require plans that cover gender affirming care outside of the EHB to complete the necessary backend activities (e.g. changes to claims and utilization management programs and policies) to implement the change, activities that could be more burdensome for smaller issuers.
While HHS states that this rule does not violate various statues (e.g. ACA’s nondiscrimination provisions at Sec. 1557 or typicality requirements, ADA’s Section 505 protections, constitutional equal protections, etc.) and disagrees with those who commented on the proposed rule that HHS lacks legal authority to make these policy changes, the rule could ultimately face legal challenges on these or other grounds.
Purpose: The Federal Trade Commission (FTC) issued a request for public comment on “how consumers may have been exposed to false or unsupported claims about ‘gender-affirming care’(GAC), especially as it relates to minors, and to gauge the harms consumers may be experiencing.”
Arguing that GAC has been subject to “potential deceptive or unfair practices involved in this type of medical care,” the agency “seeks to evaluate whether consumers (in particular, minors) have been harmed by GAC and whether medical professionals or others may have violated Sections 5 and 12 of the FTC Act by failing to disclose material risks associated with GAC or making false or unsubstantiated claims about the benefits or effectiveness of GAC.”
As discussed in the RFI, this action comes on the heels of a recent workshop the agency held on the same topic and the agency now seeks comment related to:
• Experiences of individuals and families seeking GAC, including on recommendations made by providers, whether providers described risks/benefits/effectiveness, and whether providers discussed the current policy environment and debates related to GAC, among other issues.
• Whether GAC was obtained and whether individuals experienced benefits/side effects/adverse events, among other issues.
• Detail related to whether providers “made false representations regarding the benefits or effectiveness.”
• Information related to providers making “false representations regarding the benefits or effectiveness” related to GAC
Implications: This activity is likely to have a chilling effect on provider willingness to offer GAC. In addition to the workshop and RFI described above, more than 20 providers have received subpoenas from the DOJ for investigations related to GAC that “include healthcare fraud, false statements, and more.”
The RFI (and surrounding actions) also have the potential to promote misinformation around the risks and benefits of GAC and suggests that providers are using deceptive and unethical positions in delivering GAC on a significant scale, something that has not been demonstrated. Additionally, the RFI states that there is “widespread concern about the harms” related to GAC but does not acknowledge the broad clinical support GAC has as medically necessary treatment for gender dysphoria, including from major U.S. medical associations.
Purpose: The Executive Order seeks reform “the process of Federal grantmaking while ending offensive waste of tax dollars.”
The EO aims to overhaul the federal grantmaking and grant review process “to strengthen oversight and coordination of, and to streamline, agency grantmaking to address these problems, prevent them from recurring, and ensure greater accountability for use of public funds more broadly.” One section of the EO requires agencies to “ensure that…[grants] are consistent with agency priorities and the national interest.” In addition to other actions, agencies are directed to ensure that awards are not “used to fund, promote, encourage, subsidize, or facilitate” certain themes including, “denial by the grant recipient of the sex binary in humans or the notion that sex is a chosen or mutable characteristic” and “racial preferences or other forms of racial discrimination by the grant recipient, including activities where race or intentional proxies for race will be used as a selection criterion for employment or program participation,” among others.
Implications: This approach to grantmaking could further chill research and grantmaking related to and aimed to supporting transgender and gender diverse people, including that related to health and healthcare. This could impact access to and availability of culturally competent services at the individual level and reduce research and data on transgender and gender diverse communities more broadly. Such research in turn could have been used to inform service delivery and policy making and to address health disparities.
Purpose: CDC updated its priorities statement on the agency’s “about” website to include discussion of gender affirming care, parental rights, and DEI (among a range of other topics) not previously included on the site.
With respect to gender affirming care, the agency refers to its “comprehensive review of the evidence and best practices for promoting the health of children and adolescents with gender dysphoria” (see above entry) and states it is “a CDC priority to protect children from …” gender affirming care “and, to the extent allowable by applicable federal law and any relevant court orders, CDC programs will deprioritize programs that engage in these practices where permissible. CDC funds will also not support the costs of such practices where not required by the law or court order.” Further, CDC states it is an agency “priority to recognize that a person’s sex as either male or female is unchangeable and determined by objective biology, and to ensure CDC programs accurately reflect science, including the biological reality of sex.”
Another stated priority is that “CDC believes parents are the primary decision-makers in their children’s education and should have full authority over what their children are taught” and that school policies “and curricula should emphasize knowledge…without imposing ideas that may conflict with parents’ political, religious, or social beliefs.” With respect to DEI the statement reads, “to the extent permitted by law, CDC will deprioritize diversity, equity, and inclusion (DEI) initiatives that prioritize group identity over individual merit” and that “CDC has previously invested substantially in ideologically-laden concepts like health equity—mainly on identifying and documenting worse health outcomes for minority populations.”
Implications: The new priorities statement represents are departure from the previous CDC “about” page which was much broader in its description and referenced the agency strategic plan stating that the plan “advances science and health equity and affirms the agency’s commitment to one unified vision— equitably protecting health, safety, and security.”
The new statement could potentially inform grant making and other agency activities such as reporting, recommendations/guidance, data collection, and data presentation. It may also impact CDC research ability to conduct research related to gender affirming care, transgender people, and health disparities. It also may limit the ability of grantees to use CDC resources to provide LGBTQ students with certain types of support or for the agency to provide resources to support LGBTQ youth. Targeting public health approaches to hard hit populations may be more difficult, including for conditions that disproportionately impact LGBTQ+ people, like HIV.
In its description of the HHS report findings on GAC, the CDC statement appears to go beyond what the review itself stated which was that the quality of evidence to support interventions was low and the evidence on harms was “sparse.” The CDC statement writes the review found that provision of gender affirming care to minors is “unsupported by the evidence and have an unfavorable risk/benefit profile.” Neither the report nor the CDC statement reference the well documented benefits associated with gender affirming care.
Purpose: The proposed rule wouldchange the hospital Conditions of Participation (CoPs) to prohibit most Medicare and Medicaid enrolled hospitals from providing specified gender affirming medical care for youth.
The proposal would prohibit most hospitals (i.e. those covered by section 42 CFR part 482) that accept payments from the Medicare or Medicaid programs (the majority of hospitals in the U.S.) from providing pharmaceutical and surgical services related to gender affirming care to young people under age 18. Prohibited services would include puberty blockers (which delay the onset of puberty), hormone therapy, and surgery (which is very rare among young people). While these services would be prohibited for the purposes of providing gender affirming care, the rule would permit hospitals to provide them to youth when the service is not intended to affirm a person’s gender.
The proposal does not take immediate effect. There is a 60-day comment period from the date of publication in the federal register.
Implications: The aim of the proposed rule aligns with earlier actions (e.g. the Executive Order aimed at limiting access to gender affirming care, letters from HHS to providers/states, etc. (discussed above)).
The rule applies to facility type (not payer) and therefore, if adopted, would prohibit hospitals from offering gender affirming services to all patients under 18 years old regardless of payer, including youth with private insurance or other coverage and those paying cash, not just those covered by Medicare and Medicaid.
If finalized, the proposed rule would further limit access to gender affirming care nationwide. To the extent that academic research hospitals discontinue provision of care, this could also have implications for research being conducted in these institutions.
Purpose: The proposed rule would prohibit the use of federal Medicaid of CHIP funds from covering pharmaceutical and surgical gender affirming services for young people (under age 18 for those covered by Medicaid and under age 19 for those covered by CHIP). Prohibited services would include puberty blockers (which delay the onset of puberty), hormone therapy, and surgery (which is very rare among young people). Federal funds would be permitted to cover the same services when the service is not intended to affirm a person’s gender. Under the proposal, states would be permitted to use state-only funds to cover the prohibited services.
The proposal does not take immediate effect. There is a 60-day comment period from the date of publication in the federal register.
Implications: The aim of the proposed rule aligns with earlier actions (e.g. the Executive Order aimed at limiting access to gender affirming care, letters from HHS to providers/states, etc. (discussed above)). The rule applies to federal Medicaid as a payer and therefore restrict reimbursement for care regardless of provider type (e.g. hospitals, primary care providers, endocrinologists, etc.). However, it does not prohibit providers from offering these services If finalized, the proposed rule would further limit access to gender affirming care nationwide and impact families with lower incomes the hardest. While young people with Medicaid and CHIP coverage could theoretically seek care outside of hospitals without using their insurance, the cost of doing so would likely be prohibitive. See KFF’s overview of this proposed rule: https://www.kff.org/lgbtq/new-trump-administration-proposals-would-further-limit-gender-affirming-care-for-young-people-by-restricting-providers-and-reducing-coverage/
Purpose: The proposed rule seeks to amend federal regulations implementing Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of disability in federal and federally funded programs, as it applies to recipients of funding from the Department of Health and Human Services (HHS). It would revise a Biden Administration final rule which, in the preamble, stated that HHS would be willing to view gender dysphoria as covered by Sec. 504 “as it would any other disorder or condition. If a disorder or condition affects one or more body systems, or is a mental or psychological disorder, it may be considered a physical or mental impairment.” The proposed rule would do the opposite, and clarified that the current administration interprets statutory exclusions related to ‘‘gender identity disorders not resulting from physical impairments’’ to encompass ‘‘gender dysphoria not resulting from a physical impairment.’’
The proposal does not take immediate effect. There is a 30-day comment period from the date of publication in the federal register.
Implications: This new interpretation could weaken certain protections for transgender and gender non-conforming people. (See related April 11, 2025 Notice above.)
Purpose: HHS Sec. Kennedy issued a declaration stating certain gender affirming care procedures are “neither safe nor effective as a treatment modality for gender dysphoria, gender incongruence, or other related disorders in minors, and therefore, fail to meet professional recognized standards of health care.” It further stated that “the Secretary ‘may’ exclude individuals or entities from participation in any Federal health care program if the Secretary determines the individual or entity has” delivered services that fail “to meet professionally recognized standards of health care.” However, HHS notes the “declaration does not constitute a determination that any individual or entity should be excluded from participation in any Federal health care program.”
Implications: The declaration was issued on the same day that proposed rules aiming to restrict youth access to gender affirming care in the Medicaid program and by hospitals participating in Medicare and Medicaid were released. (See more on the proposed rules in a separate entry below).
The declaration seeks to discredit widely used U.S. standards of care for gender affirming care (i.e. WPATH and Endocrine Society guidelines) and recommendations by major medical associations, instead relying on HHS’s evidence review relating to gender affirming care for minors (see above entry). It seeks to develop a Secretary-defined standard that would instead find that certain gender affirming services fail to meet professional recognized standards of care and therefore provide a basis for HHS to restrict federal funding to providers offering this care. This diverges from current recommendations which support access to this care and deem it a medical necessity.
While the declaration states that it does not determine that specific individuals or entities “should be excluded from participation in any Federal health care program” and that “any such determination…[would be]…subject to further administrative and judicial review,” it represents an additional effort aimed at restricting federal funding from reimbursing for gender affirming care for minors. As with other efforts, the declaration excepts the same services used in gender affirming care for other medical purposes.
Should the declaration be further implemented, it could increase the limitations on youth access to gender affirming care. The declaration is not limited to payer (as the Medicaid proposed rule is) or to a specific facility type (as the Conditions of Participation rule is). It could apply to any provider receiving federal funds. Even if the declaration is not implemented, it could stoke additional fear among providers who may choose to continue to or newly stop offering these services out of retaliatory fear.
On December 24, 2025, a lawsuit was filed in which 20 states challenged the administration’s authority to issue the declaration, claiming it violates the Administrative Procedures Act and the Medicare and Medicaid statutes and that “the Secretary has no legal authority to substantively alter the standards of care and effectively ban, by fiat, an entire category of healthcare.”
HHS has since referred mulitple providers to the Office of Inspector General based on the declaration.
Purpose: To “inform healthcare providers, families, and policymakers about evidence-based approaches to caring for children and adolescents experiencing gender dysphoria.”
It reviews findings from the HHS review of gender affirming care for youth (see above entry) and summarizes elements of other reviews before recommending that providers refuse to provide pharmaceutical and surgical gender affirming care for young patients, prioritizing instead psychosocial assessment and care. It also recommends providers share with families the administration’s view that there is “weak evidence for medical interventions” and “substantial documented harms” in medically treating gender dysphoria in young people.
Implications: The recommendations made are not binding but add to administrative efforts to reduce access to gender affirming care for young people. They ignore widely recognized benefits associated with gender affirming care access and recommendations of dominant US medical associations and guidelines.
Purpose: To issue warning letters to retailers and manufacturers of chest binders which include marketing language about their use to help alleviate gender dysphoria. The FDA letters, issued to 12 retailers and manufacturers, state the binders are “misbranded” and that they are medical devices that must be registered with the FDA. In a press release HHS wrote “Breast binders are Class 1 medical devices used for purposes such as assistance in recovery from cancer-related mastectomy.”
FDA states that these companies “should take prompt action to address any violations identified in this letter. Failure to adequately address this matter may result in regulatory action being initiated by the FDA without further notice. These actions include, but are not limited to, seizure and injunction.” FDA states “if you believe that your products are not in violation of the FD&C Act, include your reasoning and any supporting information for our consideration as part of your response.”
Implications: The FDA efforts could create financial and logistical challenges for retailers and manufactures of chest binders used by transgender and nonbinary people. These challenges could result in access challenges for consumers, such as those relating to supply and cost.
Tracking Key HHS Public Health Policy Actions Under the Trump Administration
Note: Originally published on Nov. 12, 2025, this resource is updated as needed, most recently on January 6, 2025, to reflect additional developments.
Since assuming office for a second term, President Trump and officials in his administration have instituted numerous policy actions through the Department of Health and Human Services (HHS) affecting public health in the U.S. This resource lists and briefly describes key actions in the order in which they were first issued, reported or announced, with subsequent linked actions and related outcomes also included with each entry. As new policy changes occur, they will be added.
This resource is not meant to be exhaustive of all administration actions related to public health, as many other federal policy changes – including outside of HHS – have public health implications but are not captured here.
Presidential Executive Orders precipitate removal of some HHS websites and health data. – In the first days of his second term President Trump issued a number of Executive Orders (EOs), including EOs that revoked many Biden administration orders and programs, and instituted new federal guidance related to “gender ideology,” “diversity, equity, and inclusion (DEI),” and “merit-based opportunities.” These EOs have implications for public health, particularly related to the collection and presentation of data and websites by the federal government. For example, in response to the EOs, HHS began to remove thousands of websites and numerous federal databases with public health information deemed to be related to DEI, LGBTQ, reproductive health, HIV/AIDS research, health disparities, and more, and limited some data collection and analysis in these areas. A lawsuit was filed to reverse these removals, and some information has been restored over time. In September, the administration agreed to restore all previously removed health-focused websites and data to versions that had existed on January 29, 2025.
February 7, 2025
NIH announces change to indirect cost rate guidance. – As part of grants for health research, the National Institutes of Health (NIH) provides “indirect cost” funding to grant recipients, which supports administration and facilities costs at grantee institutions. On February 7, NIH announced it would apply a new 15% “standard indirect cost rate” on all grants, which would apply to any new grants and to existing grants for expenses as of February 10, 2025. This was challenged in federal court and federal judges placed holds on the policy, first through a temporary restraining order affecting 22 states on February 10, a nationwide preliminary injunction on March 5, and a permanent injunction on April 4; prior rates still apply for the time being. The administration appealed the ruling and legal proceedings continue. If implemented, a 15% indirect cost rate would be a much lower rate compared to historical NIH rates and would amount to a significant cut in funding for institutions performing NIH-sponsored health research.
February 13, 2025
Robert F. Kennedy, Jr. confirmed as HHS Secretary under President Trump. – The Senate voted 52-48, along party lines, to confirm Robert F. Kennedy, Jr. as the Secretary of Health and Human Services.
February 13, 2025
President Trump issues Executive Order (EO) establishing MAHA policy agenda and MAHA Commission. – The EO outlines the purpose and objectives of the Trump administration’s Make American Healthy Again (MAHA) efforts. Stating that the U.S. must “re-direct our national focus…toward understanding and drastically lowering chronic disease rates and ending childhood chronic disease,” it directs federal agencies to “aggressively combat” mental health disorders, obesity, diabetes, and other conditions. It also establishes the MAHA Commission to advise the President, naming Secretary Kennedy as Chair. The EO directs the Commission to submit an assessment on how to combat the “childhood chronic disease crisis” within 100 days, and a strategy to address the crisis within 180 days, setting in motion processes to develop further public health strategies and plans (discussed in other entries below).
February 14, 2025
White House, DOGE initiate “reduction in force (RIF)”, including for HHS personnel. – The EO outlines the purpose and objectives of the Trump administration’s Make American Healthy Again (MAHA) efforts. Stating that the U.S. must “re-direct our national focus…toward understanding and drastically lowering chronic disease rates and ending childhood chronic disease,” it directs federal agencies to “aggressively combat” mental health disorders, obesity, diabetes, and other conditions. It also establishes the MAHA Commission to advise the President, naming Secretary Kennedy as Chair. The EO directs the Commission to submit an assessment on how to combat the “childhood chronic disease crisis” within 100 days, and a strategy to address the crisis within 180 days, setting in motion processes to develop further public health strategies and plans (discussed in other entries below).
February 14, 2025
President Trump issues Executive Order prohibiting federal funding to schools and universities with COVID-19 vaccine requirements. – The EO requires HHS to work with the Department of Education to prohibit COVID-19 mandates in schools, by issuing guidelines for compliance and barring federal funds from going to any educational agency, K-12 school, or institution of higher education that requires COVID-19 vaccination to attend in-person education programs (educational vaccine mandates are set at the state level). Educational vaccine requirements are set at the state and local levels. At the time the EO was released in February, no state required K-12 students to be vaccinated against COVID-19 while 15 colleges required Covid vaccines for students. However, by March 14, 2025 all of those colleges had ended their COVID-19 vaccine requirements for students.
February 18, 2025
Secretary Kennedy announces public health policy priorities during HHS welcome ceremony. – In his first remarks to HHS staff, Secretary Kennedy announces the public health priorities for his tenure. This include investigating the childhood vaccine schedule, tackling corruption and promoting transparency, and addressing a “chronic disease epidemic” especially in children, which he says may be linked to pesticides, food additives, antidepressants, microplastics, cellphone emissions, and other factors.
February 28, 2025
Secretary Kennedy issues new rule ending public comment requirement for HHS grants and contracts. – The new rule rescinds a prior HHS policy on “Public Participation in Rule Making” (the “Richardson Waiver,” dating back to 1971) and “re-aligns the Department’s rule-making procedures with the Administrative Procedure Act.” As a result, “matters relating to agency management or personnel or to public property, loans, grants, benefits, or contracts” are exempt from the notice and comment procedures. This removes what had been a key step in the rulemaking process requiring public notification and a comment period. For example, changes to HHS policies related to work requirements for Medicaid and NIH funding would no longer require public comments under the new rule. This could streamline implementation of HHS policy, but also reduce public visibility on changes before they take effect. Some lawmakers and public health focused groups have asked HHS to return to the prior requirements under the Richardson Waiver.
March 7, 2025
HHS announces that CDC will conduct a study of factors contributing to the rise in autism in the U.S. – In statements to the press, HHS officials indicate CDC will initiate a study looking at the factors that are contributing to the rise in autism diagnoses in the U.S.. To date, no new CDC study results on this topic have been released though in a related development, in September 2025 President Trump and HHS leadership announced at a press conference and through a White House Fact Sheet that they believe there is a link between acetaminophen (e.g., Tylenol) use in pregnancy to autism (further details provided below). President Trump and Secretary Kennedy both have a history of linking vaccines and autism, even though there is no evidence of such a link.
March 13, 2025
Food and Drug Administration (FDA) releases guidance on 2025-2026 influenza vaccine composition. – The FDA guidance identifies which influenza virus strains manufacturers should use as components of 2025-2026 influenza vaccines. To develop these recommendations, FDA convened meetings of federal scientific and public health experts, including from FDA, CDC, and Department of Defense, but did not consult with the FDA’s Vaccines and Related Biological Products Advisory Committee (VRBPAC) or other professional groups outside the government. FDA had canceled the scheduled VRBPAC meeting on this topic, and the lack of input from outside experts was a break from past years’ practices. In addition, in past years there was active participation and coordination between U.S. federal experts and global technical experts working under the auspices of the World Health Organization (WHO), but official communications with WHO-linked experts has been curtailed since the Trump administration announced in January 2025 that the U.S. was withdrawing its membership from the UN agency.
March 17, 2025
NIH initiates termination of numerous grants for HIV prevention and treatment programs. – The canceled NIH grants includesupport for researchers investigating use of PrEP, medication used pre-exposure to prevent HIV infections, and programs focused on HIV/AIDS in adolescents and young adults. Even as the first Trump administration supported HIV/AIDS prevention and treatment efforts, including through a highly visible federal effort to “end the HIV epidemic” in the U.S. by 2030, these same programs have now been targeted for cuts (further details below).
March 17, 2025
HHS removes Surgeon General warning declaring gun violence a public health crisis. – The HHS website was changed, removing a 2024 advisory from the Surgeon General on the public health impacts of gun violence. In addition to removing the Surgeon General’s warning, the administration has rolled back a number of gun safety policies in place during the Biden administration. The White House Office of Gun Violence Prevention, established during the Biden administration was shut down in early 2025. Further, significant numbers of staff at CDC’s Injury Center, which collects data on violent deaths and injuries, and CDC’s Division of Violence Prevention have been let go as part of the Trump administration’s reduction in force efforts.
March 25, 2025
HHS and CDC seek to pull back $11 billion in supplemental COVID-19 and public health funding from state and local health departments. – In a statement, HHS says it intends to pull back $11.4 billion in supplemental funding that had been provided by Congress for state and local public health departments through CDC for pandemic response activities. Following the announcement, on April 1, a group of 23 mostly Democratic-led states sued the Trump administration over the attempt to pull back this funding. On April 3, a federal judge placed a temporary block on the administration’s actions, and on May 16, another federal judge indefinitely blocked the administration from enacting its funding pull back for the states that are part of the lawsuit. As of late August 2025, almost 80% of the funds initially targeted for cuts by the Trump administration had been restored for the 23 states that won in court. However, funding has not been restored to the remaining states, the majority of which are Republican-led.
March 27, 2025
HHS announces a major re-organization and job cuts plan. – HHS announces plans for a major restructuring of the department, in accordance with President Trump’s February 26 EO on “Implementing the President’s ‘Department of Government Efficiency’ Workforce Optimization Initiative.” The announcement says HHS will create an Administration for a Healthy America (AHA), which would combine several existing HHS offices including the Office of the Assistant Secretary of Health (OASH, which contains the Surgeon General’s Office), the Health Research and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMSHA), the Agency for Toxic Substance and Disease Registry (ATSDR), and the National Institute for Occupational Safety and Health (NIOSH). In addition, the Administration for Strategic Preparedness and Response (ASPR) at HHS would be moved under CDC. The announcement also says HHS will reduce its workforce by eliminating 10,000 full-time positions. Combined with other reduction in force efforts, a total of 20,000 HHS workers are expected to lose their jobs.
On May 5, a coalition of 19 Democratic-led states and the District of Columbia filed a lawsuit against the mass firing of federal health workers and re-organization of HHS. On May 10, a court ordered a temporary pause on sweeping federal firings at HHS and other agencies. On July 1, a federal judge blocked mass firings at HHS, saying they are likely unlawful. However, on July 8 the Supreme Court overturned the lower court decisions, allowing the Trump administration to proceed with job cuts. As of August it is estimated that over 20,000 jobs at HHS have already been cut, meaning the administration already met its initial workforce reduction goal.
Regarding re-organization, some organizational changes have been implemented at HHS, with major cuts or closures to public health related offices such as the HHS Office of Infectious Diseases & HIV Policy, the HHS Office of Minority Health, and HRSA’s Bureau of Primary Health Care. However, other proposals such as the formation of an Administration for a Healthy America (AHA), have not yet been implemented. Implementing AHA to the extent proposed is likely to require approval from Congress, though so far Congress has not acted on legislation codifying these proposals.
March 31, 2025
HHS withholds portion of Title X family planning service grants. – HHS notifies one in five current grantees of the federal Title X family planning program that a portion of their funding would be temporarily withheld. This funding freeze affects all nine Planned Parenthood grantees, in addition to 7 other nonprofit grantees, and it is estimated that a total of 879 clinics (24% of all Title X clinics) in 23 states are affected. After several months, funds were reinstated to some organizations, but the Planned Parenthood grantees have still not had their funding reinstated.
April 1, 2025
HHS ends federal support for the “Safe to Sleep” program, which focuses on prevention of infant deaths during sleep. – The Trump Administration ends federal participation in Safe to Sleep, a national campaign that focused on educating parents of newborns about safer sleeping practices for infants that can prevent death. The program, supported through the NIH’s National Institute of Child Health and Human Development (NICHD) Office of Communications in recent years, had been in existence for over 30 years and had contributed to a major decline in sudden infant deaths. The NICHD office was eliminated on April 1, along with federal support for “Safe to Sleep.”
April 2, 2025
HHS requires CDC to reduce contract spending by $2.9 billion as part of DOGE cost reduction efforts. – According to reports, HHS orders CDC to reduce its contract spending by $2.9 billion by April 18.CDC contract funding has been used to support several services at the agency including security, cleaning, and computers/technology. The sudden requirement to cut this spending by approximately 35% affects CDC operations.
April 7, 2025
HHS Secretary Kennedy announces changes to fluoride policies. – Secretary Kennedy announces a plan to implement a number of changes to federal policy related to water fluoridation, including stating that CDC will stop recommending water fluoridation as a public health intervention (though to date, HHS and CDC still recommend community water fluoridation). In addition, Kennedy says the defunct Community Preventive Services Task will be revived and reconvened, with a goal of studying and making recommendations about water fluoridation. Kennedy also called on states to ban fluoride in their drinking water. Already this year Utah and Florida have banned community water fluoridation, the first states ever to do so.
April 17, 2025
FDA informs Pfizer/Moderna that mRNA COVID vaccines will require an expanded warning label about myocarditis. – In letters sent April 17, the FDA informs Pfizer and Moderna they must alter the warning labels for their COVID-19 mRNA vaccines to include expanded risks for myocarditis and pericarditis. Previously, the warning labels for these vaccines noted risks for these conditions for those aged 18 to 24 years (Moderna) and 12 to 17 years (Pfizer). However, updated labels are required to include new language saying “the observed risk of myocarditis and pericarditis following vaccination with mRNA COVID-19 vaccines has been highest in males 12 through 24 years of age” and that “persistence of abnormal cardiac magnetic resonance imaging (CMR) findings that are a marker for myocardial injury was common.” According to FDA, the labels must also include more information about these conditions and their health risks. Since the letters were sent, the companies have complied with the new FDA requirements. FDA approved the updated label language on June 25.
April 22, 2025
FDA and HHS announce measures to phase out use of petroleum-based food dyes. – FDA and HHS announce a series of steps the federal government will take to remove petroleum-based synthetic dyes from the U.S. food supply. These actions include initiating a process to revoke federal authorization for two such dyes and planning phase-outs by the food industry for others. In addition, the government will support research on food additives and children’s health and authorize natural alternative coloring options. Under the current plan, the phase-outs will occur through voluntary action taken by food companies.
May 1, 2025
HHS announces a $500 million investment in a “next generation universal vaccine platform.” – HHS and NIH announce that $500 million in funding will be directed to a new effort to develop a “universal vaccine platform for pandemic-prone viruses.” The platform uses inactivated whole viruses, and is part of a broader federal effort to develop universal vaccines called “Generation Gold Standard.” The funds for this new investment appear to be re-purposed vaccine development funds from the Biden Administration’s NextGen initiative to develop next generation COVID-19 vaccines.
May 2, 2025
White House Releases FY 2026 President’s Budget Request calling for major fundings cuts at HHS. – The White House released an outline of the administration’s budget request for FY2026 and on May 30, the White House submitted the full Budget Request for FY2026 to Congress. The request proposes steep cuts to the HHS budget, including cuts for CDC, HRSA, SAMHSA, NIH, eliminating the Hospital Preparedness Program at ASPR, and reducing funding and cutting some programs focused on HIV/AIDS research and response. The budget request also asks Congress for $500 million to support a new “Administration for a Healthy America (AHA)” and MAHA-related priorities. The President’s Budget Request is only a proposal, as it is Congress that ultimately decides how much money the federal government appropriates. So far, Congressional spending bills for FY2026 have not included cuts to HHS of the magnitude requested by the President, and Congress has not provided the requested $500 million for AHA though budget negotiations continue.
May 5, 2025
White House Executive Order restricts funding and increases oversight for “gain of function” research at HHS. – In an EO titled “Improving the Safety and Security of Biological Research” the White House cites concerns with federally funded “gain-of-function” (GOF) research on biological agents and states the Biden administration allowed dangerous GOF research to occur without sufficient oversight. The EO directs the Secretary of HHS to coordinate with other relevant Executive branch offices to establish guidance to end federal funding of “foreign entities” where GOF is being undertaken or in countries lacking oversight of GOF research. The EO requires the relevant Executive offices to submit updated policies and guidance for all federally supported GOF-related research, and to develop a strategy for managing risks of non- federally funded GOF research. The full implications of the EO are not yet clear, as the Executive branch offices must develop and implement specific guidance and regulations. According to outside experts, potential benefits of the EO include more transparency and stricter enforcement of dangerous research, while potential risks include hindering beneficial research that is not GOF and researchers choosing to curtail beneficial research to avoid potential repercussions under evolving federal restrictions.
May 20, 2025
FDA leaders announce clinical trials will be needed for approval of certain new COVID vaccine formulations. – In a medical journal article, FDA leaders indicate that going forward, for federal approval of new or updated COVID-19 vaccines (“boosters”) for use in individuals who are not considered at higher risk (defined as persons 65 or older or those with certain health conditions), will require vaccine makers to present evidence from randomized, placebo-controlled trials that demonstrate safety and efficacy. The announced policy is a departure from prior years when FDA did not require new trial data to authorize or approve boosters, but instead allowed approvals based on immune response evidence. The new policy could hinder investments by pharmaceutical companies in developing new COVID vaccine formulations, given the greater expense and time required to conduct new, full clinical trials.
May 22, 2025
MAHA Commission Report on childhood chronic disease published. – The first official report from the MAHA Commission (established by the February 13 EO discussed above) discusses factors contributing to a “chronic disease crisis” for U.S. children and provides a “call to action”. The report highlights four main drivers of the crisis: poor diet (primarily due to consumption of ultra-processed foods), exposure to chemicals, lack of physical activity and chronic stress, and “overmedicalization (excessive use of prescription drugs, such as antidepressants). The report calls for federal agencies to “close critical research gaps and guide efforts to better combat” these issues. It also says the MAHA Commission will develop and release a strategy in August (discussed below). The report expanded on the ideas initially outlined in the February EO and provided more details on Secretary Kennedy’s priorities to address chronic disease in children. There was some criticism of the report after its publication, with experts questioning some of the evidence and conclusions and pointing out significant errors and studies cited that did not exist, which indicated that artificial intelligence was likely used to help write the report.
May 23, 2025
Administration ends NIH funding for several HIV vaccine research projects. – NIH notifies two grant recipients working on broadly neutralizing antibody research for HIV vaccines of the cancelation of their funding. The canceled grants supported early-stage vaccine development research that uses a different approach than other HIV vaccine candidates. Some other HIV vaccine candidates remain in the development pipeline and clinical trials continue, but the absence of this early-stage research could jeopardize the development of additional candidates going forward.
May 27, 2025
HHS Secretary Kennedy announces CDC will no longer recommend COVID vaccines for healthy pregnant women and children. – In a video post on X, Secretary Kennedy announces “the COVID vaccine for healthy children and healthy pregnant women has been removed from the CDC recommended immunization schedule.” The announcement was a departure from the typical process for changing vaccine recommendations, which includes review and input from the Advisory Committee on Immunization Practices (ACIP) and a notification from the CDC Director. Initially, the implications of changing CDC guidance without ACIP input were unclear given that no-cost insurance coverage for vaccination is linked to ACIP and CDC recommendations. On May 30, CDC changed the language on its website for COVID-19 vaccines, removing its prior recommendation for pregnant women to be routinely vaccinated and stating that healthy children 6 months to 17 years old could be vaccinated in consultation with health care providers/parents – a recommendation known as “shared decision-making,” which would mean insurance would still have to cover such vaccinations. On July 7, a coalition of professional medical organizations filed a lawsuit against HHS over the new COVID-19 vaccine recommendations, saying the department did not follow federal procedures in making the change and also mislead the public on the issue (on January 6, 2026, a federal court confirmed these plaintiffs have standing to challenge HHS’s actions on the COVID-19 vaccine recommendations, allowing the case to proceed to arguments). On August 19, independent expert groups, including the AAP, issued their own recommendations for COVID vaccines in infants and young children in contrast with CDC’s new recommendations. On Aug 22, ACOG issued their own recommendations for pregnant patients.
June 9, 2025
HHS Secretary Kennedy announces removal of all sitting members of ACIP. – In a post on X and a subsequent HHS press notice, Secretary Kennedy announces that all 17 sitting members of the CDC’s Advisory Committee on Immunization Practices (ACIP) are dismissed, to be replaced with new members selected by the Secretary. Kennedy says the move is “prioritizing the restoration of public trust above any specific pro- or anti-vaccine agenda.” The HHS Secretary does have the discretion to remove and nominate ACIP members, though no previous Secretary has dismissed all ACIP members at once. In a subsequent X post on June 11, Kennedy announces the nomination of eight new members to ACIP, several of whom have been critical of COVID-19 vaccines and have expressed concerns about harms caused by vaccinations more generally. In a later press release from September 15, HHS announces five more members to be appointed to ACIP, including several with a history of criticism of COVID-19 vaccine policies.
June 17, 2025
FDA announces National Priority Vouchers for expedited regulatory review of new drugs that support “U.S. national interest.” – FDA announces a Commissioner’s National Priority Voucher (CNPV) program, which can be “redeemed by drug developers to participate in a novel priority program” that shortens regulatory review time from 10-12 months to 1-2 months. FDA says it will determine the availability of vouchers for companies that are aligned with the “national health priorities” of: addressing a health crisis in the U.S.; delivering more innovative cures for the American people; addressing unmet public health needs; and, increasing domestic drug manufacturing as a national security issue. On October 16, FDA announced the first nine CNPV recipients, and on November 6, announced six more recipients. The impact of this new priority voucher program on speeding drug approvals and onshoring drug manufacturing capacity is as yet unclear. In addition, there are several other existing priority review processes at FDA so adding another could strain FDA staff capacity at the same time there has been significant reductions in FDA’s staff and budget. These strains have already slowed FDA review times in general.
June 18, 2025
FDA approves lenacapavir – a new HIV prevention drug. – FDA approves Gilead Sciences’ lenacapavir, a new injectable PrEP drug that has been shown to be highly effective at preventing HIV infection, and which requires just one dose every 6 months, making it the first ever twice-a-year drug option for HIV prevention. In September, CDC issued clinical guidance for use of injectable lenacapavir as PrEP, though that guidance did not include reference to transgender people, a group intentionally included in the clinical trials and at increased risk of HIV. FDA’s approval also precipitated a review by the World Health Organization (WHO) and on October 6, WHO pre-qualified lenacapavir for prevention of HIV. WHO pre-qualification can speed regulatory approval for the drug in many low- and middle-income countries with a high burden of HIV/AIDS and can also allow for global health mechanisms like the Global Fund to Fight AIDS, Tuberculosis and Malaria to procure the drug.
June 25-26, 2025
The newly reconstituted ACIP makes recommendations and policy changes related to RSV and influenza vaccines, and designates new workgroups on hepatitis B, MMRV, and the childhood immunization schedule. – ACIP votes to recommend respiratory syncytial virus (RSV) injections for babies and RSV vaccine for people 50 and older, and a ban on the use of thimerosal in multi-dose influenza vaccine vials. ACIP also agrees to stand up three new workgroups that will review the U.S. childhood vaccination schedule, hepatitis B guidance, and combination MMRV vaccine. Subsequently, on July 3, CDC issued new RSV guidance that mirrored ACIP recommendations. On July 23, Secretary Kennedy enacted ACIP’s recommendation on thimerosal, rescinding federal recommendations for any influenza vaccines containing thimerosal (a change that only affects a very small percentage of the overall influenza vaccine market that is comprised of multidose vials).
July 1, 2025
HHS alters program requirements and withholds funding from sex education and teen pregnancy prevention programs. – HHS notifies all Teen Pregnancy Prevention (TPP) program grantees and Personal Responsibility Education Program (PREP) grantees in 46 states and territories that their material must align with President Trump’s executive orders, including those that ban the promotion of gender inclusivity, risk losing federal funding. TPP is a national grant program that funds grantees to replicate, develop, test, and evaluate evidence-based approaches to prevent teen pregnancy, while PREP awards grants to state agencies to use evidence-based models in educating adolescents on both abstinence and contraception. In August, the Trump administration cancelled a $12.3 million PREP grant to California after state officials refused to revise curricula in compliance with the EOs. In September 2025, 16 states and D.C. sued HHS alleging that the new PREP grant conditions are unlawful, unconstitutional, and harmful to gender diverse youth. Similarly, a federal judge blocked the HHS policy changes for TPP in October 2025.
July 2, 2025
CDC deactivates its emergency response for H5N1 influenza (bird flu) and limits tracking and reporting of data on bird flu infections in humans and animals. – CDC ends its emergency response for H5N1 bird flu in the U.S., which had been active since April 4, 2024. CDC reports the change is due to a decline in animal infections and no reports of human cases since February 2025. CDC also says data on the number of people tested for H5N1 will be reported only monthly, and no further data on infection rates in animals will be reported on the CDC website. Even so, reporting from states showed the number of H5N1 cases in birds, which had declined over the summer, began to increase again in fall 2025. However, much of the federal research and response efforts for H5N1 have been closed down or significantly limited following funding and staff cuts and a prolonged government shutdown. The limited federal tracking and reporting of H5N1 infections can slow identification of outbreaks and potentially slow response times.
July 9, 2025
HHS Secretary Kennedy cancels a scheduled meeting of the U.S. Preventive Services Task Force (USPSTF). – Secretary Kennedy cancels a meeting of the USPSTF several days before it was scheduled to take place, with no reason given and no re-scheduled meeting date provided. Typically, the task force meets three times a year, though no meeting has yet occurred under Secretary Kennedy. USPSTF is responsible for reviewing and recommending preventive health services. USPSTF recommendations have implications for what services insurers must cover with no cost-sharing, under the Affordable Care Act (ACA). Such services can include screening tests, behavioral counseling, and medications that can prevent diseases and illness (other than vaccines, which are tied to ACIP recommendations). However, along with other parts of the ACA, USPSTF has faced court challenges. On June 27 (prior to Kennedy’s cancelation of the meeting), while the Supreme Court ruled the ACA requirement that insurers cover USPSTF-recommended services is indeed constitutional, it also found that the HHS Secretary has the power to add and remove USPSTF members at will, which underscores the possibility that Secretary Kennedy may choose to dismiss some or all of the existing USPSTF members and appoint new members (as Kennedy has done with ACIP), or simply not name any new members, and has the power to choose not to adopt USPSTF recommendations. In light of Kennedy’s cancellation and the Supreme Court ruling, 104 public health focused organizations called on Congress to “protect the integrity of the USPSTF” through legislative action. The subsequent USPSTF meeting was scheduled to occur in November but that was also canceled, with HHS citing the government shutdown as the reason.
July 31, 2025
FDA announces new safety label requirement for opioid pain medications. – The FDA says will require safety labels on opioid medications so that users can better understand that risks of long-term opioid use. The updated labels should include a summary on the risk of addiction, misuse, and overdose, treatment guidance and the risk of higher doses, how to safely discontinue opioid use, drug interactions, digestive complications, and overdose reversal medications. Drug companies received notification letters and have 30 days to submit updated labels for review.
July 31, 2025
HHS Secretary Kennedy swears in Susan Monarez as CDC Director. – In a statement welcoming the newly Senate-confirmed CDC Director, Secretary Kennedy says Monarez has “unimpeachable scientific credentials” and he has “full confidence in her ability to restore the CDC’s role as the most trusted authority in public health.” However, 28 days later (on August 27) the White House removed Monarez from her position at CDC. According to Kennedy, she was removed because he lost trust in her ability to serve as CDC Director and to implement the policies of the Trump Administration. According to Monarez, she was removed because she would not provide “blanket approval” for vaccine policy changes in advance and would not fire, as requested by Kennedy, CDC employees without cause. On August 28, Secretary Kennedy announced in a letter to CDC staff that Deputy Health and Human Services Secretary Jim O’Neill would serve as acting CDC Director.
August 1, 2025
Newly announced CDC policy prevents outside professional medical and public health organizations from participating in working group meetings of ACIP. – Officials at HHS notify professional medical organizations such as the American Academy of Pediatrics (AAP), the American Medical Association (AMA), the American College of Obstetricians and Gynecologists (ACOG), and others that they will be excluded from joining ACIP working group discussions going forward. Professional groups representing medical doctors and other stakeholders in vaccine policies have long participated as non-voting members, including in ACIP working groups. Working groups are typically responsible for helping review available data about topics prior to ACIP meetings, and helping develop recommendation language for ACIP to vote on, as well as other activities in support of ACIP. While the outside groups can be present and can participate in full ACIP meetings, the new policy removes them from providing any input through working groups.
August 5, 2025
HHS announces a “coordinated wind down” of $500 million in federal funding for mRNA vaccine research. – HHS announces that it will cancel and begin to wind down mRNA vaccine development activities funded through the Biomedical Advanced Research and Development Authority (BARDA). In total, HHS reports it is canceling 22 projects worth nearly $500 million because “these vaccines fail to protect effectively against upper respiratory infections like COVID and flu…Going forward, BARDA will focus on platforms with stronger safety records and transparent clinical and manufacturing data practices.” mRNA COVID-19 vaccines are effective in preventing severe illness and death from the disease, and mRNA vaccine technology has potential applications for other infectious diseases, as well as chronic diseases like cancer. The cancellation removes the bulk of U.S. federal funding for mRNA research, leaving questions about future progress by the U.S. in this area of vaccine technology.
August 15, 2025
HHS reinstates the defunct Task Force on Safer Childhood Vaccines. – The original Task Force on Safer Childhood Vaccines, a federal panel created by Congress in 1986 “to improve the safety, quality, and oversight of vaccines” was disbanded in 1998, but HHS announces that the group will be re-instated at NIH with participation from officials at FDA, CDC, and other government agencies. The goal of the reconstituted Task Force will be “the development, promotion, and refinement of childhood vaccines that result in fewer and less serious adverse reactions than those vaccines currently on the market, and improvements in vaccine development, production, distribution, and adverse reaction reporting” to help increase federal oversight and investigation of vaccine injuries. The Task Force will come together to develop recommendations to be submitted to Congress within two years, with updates every two years after. Reinstatement of this panel has been a goal of anti-vaccine advocates for years, including the Children’s Health Defense, the anti-vaccine organization Secretary Kennedy founded, which supported a lawsuit earlier in 2025 against Kennedy that sought to require him to reconvene the Task Force.
August 27, 2025
FDA approves COVID-19 vaccines for 2025-2026, while limiting scope of approval to certain ages and risk profiles. – FDA approves updated COVID-19 vaccines for 2025-2026, but also limited the approval to persons 65 and older and those between 18 and 64 with a health condition that puts them at higher risk for severe disease. Previously, the FDA had approved the use of vaccines for all ages (over 6 months) regardless of risk profile.
September 9, 2025
MAHA Commission releases strategy to address childhood chronic disease. – A new MAHA Commission strategy document outlines actions the federal government is taking or plans to take to address childhood chronic disease in the U.S. These include “more than 120 initiatives” that together represent “the most ambitious national effort ever to confront childhood chronic disease,” and which outline a “blueprint for the entire government” to address chronic disease. Elements of the strategy include: changing federal science and research priorities, reforming dietary guidelines, changing nutrition and food regulations through reducing additives and ultra-processed foods, and improving effort to raise public awareness about chronic disease. The strategy highlights the risks of vaccine injuries, fluoride in drinking water, among many other areas.
September 18, 2025
Secretary Kennedy renews the declaration of the national opioid crisis as a public health emergency. – In a declaration on an HHS website, Secretary Kennedy renews the declaration of the opioid crisis as a national public health emergency (PHE). The opioid crisis was initially declared a public health emergency in 2017; renewal is required every 90 days to continue the PHE.
September 19, 2025
Secretary Kennedy announces that the FDA will launch a new review of mifepristone. – Secretary Kennedy announced that the FDA will undergo a review of the current Risk Evaluation and Mitigation Strategy (REMS) for mifepristone, due to new evidence including an April 2025 report from the Ethics and Public Policy Center (EPPC) which claims that mifepristone has a higher rate of adverse events than previously reported. This report has drawn criticism due to methodological flaws and lack of transparency regarding its data sources.
September 19, 2025
ACIP makes several new recommendations related to MMRV and COVID-19 vaccines. – In its September 18-19 meeting, ACIP members vote on several new recommendations including to no longer recommend the combination MMRV (measles, mumps, rubella, and varicella) vaccine for children under the age of 4 and instead to recommend that children in this age group receive measles, mumps, and rubella (MMR) vaccine separately from the varicella vaccine (V). In addition, ACIP members vote to change what had been a universal COVID-19 vaccine recommendation (except for HHS’ recent change for healthy children and pregnant women) to “shared clinical decision-making”, including for those 65 and older, along with a recommendation for new language on risk-benefit for COVID-19 vaccinations. ACIP’s recommendations were adopted by CDC on October 6. While the separate MMR+V vaccines had been recommended as preferred by the CDC for many years, the combination MMRV provided an option for parents to reduce the number of injections their children receive. Now, insurers will no longer be required to cover this vaccine at no-cost. The new COVID-19 vaccine recommendations mean people of all age groups are now recommended to have an interaction with a health care provider (which could include a doctor, nurse, or pharmacist) to determine whether getting a COVID-19 vaccination is recommended for them. If that determination is made, insurers must cover the vaccine at no-cost, although it is possible that some consumers may face challenges in accessing providers in the first place or demonstrating that they have consulted with a medical provider seeking vaccination in some cases.
September 22, 2025
President Trump and Secretary Kennedy announce new actions to address autism spectrum disorder in the U.S. – In a press conference and via an HHS press statement and Fact Sheet, President Trump and HHS Secretary announce several actions to address the issue of autism spectrum disorder (ASD) in the U.S. This includes FDA authorization for leucovorin, a treatment option for some children with autism, a regulatory change that will allow state Medicaid programs to newly cover leucovorin for the indication of ASD. President Trump and Secretary Kennedy also highlight what they say are risks of acetaminophen use during pregnancy and association with autism. The press release notes “HHS wants to encourage clinicians to exercise their best judgment in use of acetaminophen for fevers and pain in pregnancy by prescribing the lowest effective dose for the shortest duration when treatment is required.” In his remarks, President Trump also implicated childhood vaccines as a potential risk factor for autism, though no new evidence was presented and that link has already been repeatedly and conclusively ruled out. In a subsequent press statement on September 22, HHS announced FDA was initiating a labeling change for leucovorin, and a safety label change for acetaminophen to include information about the “potential risks of acetaminophen so patients can make a more informed decision.” Public health groups and experts criticized the conclusions linking acetaminophen use in pregnancy and autism, and expressed doubts about leucovorin as a treatment for autism. President Trump’s remarks also precipitated a lawsuit filed on October 28 in Texas against the maker of Tylenol.
September 30, 2025
FDA approves a new generic mifepristone product. – The FDA approved Evita’s Solutions application for a generic version of mifepristone. The approval included a reminder that the generic mifepristone is subject to the same Risk Evaluation and Mitigation Strategy (REMS) as the brand-name.
September 30, 2025
HHS awards $60 million in grants to support prevention of falls and related programs for older adults and those with disabilities. – Secretary Kennedy announced 59 new grants totaling $60 million is being awarded to states, territories, tribes, and local organizations supporting older adults and Americans with disabilities, including programs for “preventing falls among seniors, managing chronic conditions…and funding dementia-capable programs.”
October 10, 2025
Trump Administration fires thousands of HHS employees, including hundreds at CDC, during federal government shutdown. – In the midst of a government shutdown and an ongoing federal funding impasse in Congress, the White House Office of Personnel and Management saysover 4,000 federal workers are to be fired. At HHS, over a thousand workers are notified that they have lost their jobs, with most of those losses concentrated at CDC. Some of those job losses were reversed over the next few days, with HHS officials stating some notices were sent in error. Even so, as of October 14 it is estimated that about 600 CDC employees remain fired, including staff in areas such as injury prevention, health statistics, and Congressional relations. There is a question about whether such firings during a government shutdown are legal, and groups representing federal workers have filed lawsuits to halt these mass layoffs.
October 31, 2025
FDA announces new restrictions on ingestible fluoride products for children. – FDA announces new enforcement actions “to restrict the sale of unapproved ingestible fluoride products for children” and sends letters to health care professionals warning about the risks associated with these products. The actions come after FDA conducted a review and published a scientific evaluation of these products. In the announcement. FDA says it will be developing a “fluoride research agenda” and “the first national oral health strategy” for the U.S. in partnership with NIH and other HHS agencies.
November 10, 2025
FDA announces a warning label change on hormone replacement therapy (HRT) products for addressing symptoms of menopause. – In a press release, a fact sheet, and a live press event, FDA leaders announce that they will initiate the removal of broad “black box” warnings from HRT products for menopause. The FDA also announces approvals for two new drugs for menopausal symptoms. According to the FDA, women have been “under-utilizing approved therapies” since the “black box” warnings about risks associated with the drugs were placed on these products over 20 years ago. Labels will be rewritten with guidance saying that there are long-term health benefits if HRT is begun within 10 years of the onset of menopause.
November 19, 2025
CDC changes language on its website to say a link between vaccines and autism cannot be ruled out. – A CDC website providing information to the public on Autism and Vaccines, is changed to include language saying “studies have not ruled out the possibility that infant vaccines cause autism.” The new site also discusses the “state of the evidence” on common childhood vaccines and supposed links to autism. The new language is a reversal from previous CDC statements saying “vaccines do not cause autism,” and contradicts the long established scientific consensus that there is no link between vaccines and autism. The new CDC webpage language has been criticized by professional medical organizations such as the American Medical Association and the American Academy of Pediatrics, as well as autism organizations such as Autism Speaks and the Autism Science Foundation.
November 21, 2025
CDC staff ordered to end all monkey research programs, potentially affecting development of prevention tools for HIV and other infectious diseases. – According to reports, CDC staff are ordered to halt its monkey research program by the end of 2025. This program has helped develop HIV prevention tools such as pre-exposure prophylaxis (PrEP) and microbicides, as well supported prevention research for other infectious diseases.
November 28, 2025
Internal FDA communication proposes stricter federal requirements for testing and approving vaccines. – According to reports, the head of FDA’s Center for Biologics Evaluation and Research (CBER), which is responsible for regulating vaccines, issues an email to staff proposing new, stricter federal requirements for vaccine testing, evidence, and approval. The email states that in the future FDA will “demand pre-market randomized trials assessing clinical endpoints for most new products” and that FDA “will not be granting marketing authorization to vaccines in pregnant women” without this kind of evidence. Newly developed pneumonia, influenza, and COVID-19 vaccines are specifically mentioned as vaccines that would be subject to these new requirements. The rationale given for this policy change is a new analysis of vaccine safety data indicating “COVID-19 vaccines have killed American children,” though no evidence to support that statement is provided in the email.
December 5, 2025
ACIP votes to end recommendation that all newborns receive hepatitis B vaccine dose at birth On the second day of the Advisory Committee on Immunization Practices’ (ACIP) December 4-5 meeting, members vote to end a long-standing recommendation that all newborns in the U.S. receive a dose of hepatitis B vaccine. The committee now recommends parents of infants born to mothers who test negative for hepatitis B consult with their provider to help decide if and when their child should receive the first hepatitis B dose. ACIP continues to recommend that infants born to mothers who test positive for hepatitis B, or whose hepatitis B test status is unknown, receive the first hepatitis B vaccine dose at birth. A recommendation from ACIP becomes part of the official CDC immunization schedule once it is adopted by the CDC director.
December 30, 2025
HHS ends certain requirements for state reporting of immunization data to the Centers for Medicare and Medicaid Services (CMS). A December 30 letter from the Centers for Medicare and Medicaid Services (CMS) informs state health officials that starting in 2026, states will no longer be required to report several measures related to immunization status to CMS. Specifically, CMS removes the following from its “Child and Adult Core Sets”: “Childhood Immunization Status”, “Immunizations for Adolescents”, “Prenatal Immunization Status: Under Age 21”; and “Prenatal Immunization Status: Age 21 and Older.” In addition, in its letter CMS informs state health officials it will “explore options to facilitate the development of new vaccine measures that capture information about whether parents and families were informed about vaccine choices, vaccine safety and side effects, and alternative vaccine schedules” and “how religious exemptions for vaccinations can be accounted for.” Data reported by states and included in the Child and Adult Core Sets are used by Medicaid and CHIP to monitor access to and quality of health care for their beneficiaries, so an absence of this data could make monitoring immunization coverage in this population more challenging.
January 5, 2026
HHS announces changes to the federal childhood vaccination schedule that reduce the number of routinely recommended vaccines Health and Human Services (HHS) issues a memo implementing major changes to the government’s recommended vaccination schedule for children. Under the new guidelines, there are vaccines for 11 diseases recommended for all children, down from 17 diseases a year ago. In addition to COVID-19 (which HHS stopped recommending for all children back in October 2025), the new schedule no longer recommends routine vaccinations for five other diseases: rotavirus, COVID-19, influenza, hepatitis A, hepatitis B, and meningococcal. These vaccines have been moved from routine recommendation to “shared clinical decision making,” a process that is “individually based and informed by a decision process between the health care provider and the patient or parent/guardian.” The HPV vaccine remains recommended for routine vaccinations, though under the new guidelines HHS reduces the number of recommended doses of HPV drops from two or three (depending on age of initial vaccination) to one. Coverage for all of these immunizations should remain the same through public and private insurance mechanisms.
Payment Rates for Medicaid Home Care Ahead of the 2025 Reconciliation Law
Long-standing workforce challenges in Medicaid home care (also known as home- and community-based services or HCBS) impact care for the over 5 million people who use these services. Shortages and high turnover rates among the direct care workforce reflect demanding work and low wages, particularly among home care workers (who are direct care workers that provide HCBS). This issue brief describes states’ ongoing efforts to respond to shortages of home care workers and how they pay these workers, finding that increased payment rates are a key component of states’ efforts to address workforce shortages.
Such shortages could increase as states will face tough choices about how to absorb Medicaid cuts stemming from the 2025 reconciliation law, which is estimated to reduce federal Medicaid spending by $911 billion over the next decade. When faced with fiscal pressures in the past, states have responded with restrictions on home care, and as a result of the reconciliation law, states may again face significant pressures to cut Medicaid payment rates, offer fewer covered benefits, or restrict eligibility. The Medicaid cuts could also affect access to health coverage among home care workers because over one-in-three workers in home care settings are enrolled in Medicaid. Reduced access to health coverage among the workforce could exacerbate other challenges.
Workforce challenges may also worsen in future years because of changes in immigration policy. Nearly one-in-three home care workers are immigrants, and the Trump Administration’s intensified immigration enforcement and restrictive policies are deepening anxiety and fear among immigrants of all statuses. KFF survey data finds that 13% of immigrants have avoided going to work since January 2025 because of concerns about drawing attention to someone’s immigration status, a number which rises to 40% among people who are likely to be undocumented immigrants. Fewer immigrants overall and potentially lower rates of employment among immigrants could reduce the size of the home care workforce. With more limited immigration, there will be fewer workers overall to care for an aging population.
Amidst this evolving landscape, this issue brief describes Medicaid payment rates for home care and other workforce supports that are in place in 2025, before the majority of the 2025 reconciliation law provisions start taking effect. This issue brief is one of several reporting the data from the 23rdKFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state), which states completed between April and July 2025. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida responded to the 2025 survey, but response rates for certain questions were lower. States generally completed the survey prior to enactment of the 2025 reconciliation law. Survey findings are reported by state and waiver target population, although states often offer multiple waivers for a given target population. Key takeaways include:
All responding states reported taking actions to address workforce shortages, with most states raising payment rates (Figure 1).
All states reported shortages of home care workers, most frequently among direct support professionals, nursing staff, personal care attendants, and case managers.
Most (41) states reported permanent closures of home care providers within the last year.
Among the 34 states that reported time-based payment rates for personal care providers, more than half pay less than $20 per hour.
How are States Addressing the Workforce Challenges in Home Care?
All responding states reported workforce shortages in 2025, with the most common shortages being among direct support professionals (48 states), followed by nursing staff (47 states) and personal care attendants (46 states) (Figure 2, Appendix Table 2). States were asked if they had shortages of each type of provider but were not provided with a definition of “shortage.” Most states also reported shortages in case managers (44 states), home health aides (41 states), certified nurse aides (39 states), community-based mental health providers (38 states), and occupational, physical, and speech therapy providers (30 states). In some cases, states may not have reported a shortage of a particular type of provider because that type of service is not offered through their home care program.
All states reported shortages for more than one type of provider, and 43 states reported shortages among five or more provider types. Such shortages may reflect low compensation coupled with demanding working conditions. In the spring of 2024, home care providers participating in KFF focus groups reported that their jobs had high physical demands and mental demands that were often “overwhelming.” The groups described their wages as low, particularly given the demands of their jobs; and how staffing shortages made their jobs harder because they may not know if they would be able to leave work at the end of their shift. In survey responses, states attributed shortages to low reimbursement rates, lack of qualified providers, and high turnover rates.
Within the last year, 41 states reported permanent closures of home care providers, which were most common among adult day health programs (28 states), followed by group homes (23 states), assisted living facilities, and the enrollee’s home (22 states each) (Figure 3, Appendix Table 3). States were asked if there were any permanent closures of providers that offer services for Medicaid enrollees based on the location in which the providers deliver care. For a setting such as an assisted living facility or group home, a closure could reflect either the closure of an assisted living facility or the closure of a home care agency that sent workers into facilities and group homes. States were not asked to provide a reason for the closures. Some states reported closures of supported employment providers (12 states), home health agencies (11 states), and community mental health providers (5 states). Most states reported closures among more than one type of provider: 35 states reported closures among two or more provider types, and 26 states reported closures among three or more provider types.
All responding states reported taking actions to address provider shortages, with 48 states increasing payment rates, 38 states developing or expanding worker education and training programs, and 24 states offering incentive payments to recruit or retain workers (Figure 1, Appendix Table 1). Less common initiatives included establishing or raising the state minimum wage (20 states), offering worker retention bonuses (20 states), and offering paid sick leave for workers (18 states). States also reported other types of initiatives to strengthen the workforce, including initiatives allowing people to receive paid care from family members. For example, Oregon created a new 1915(c) waiver that allows parents of minor children to be paid for providing attendant care to their child. States’ actions to address provider shortages in 2025 were similar to those in 2024.
All but 11 states use managed care to provide at least some home care, and in over half of the states with managed care, fee-for-service payment rates impact the payment rates that managed care plans pay home care providers. Out of the 39 states that use managed care to provide at least some home care, 20 states reported that the fee-for-service payment rates represent the minimum amount that plans must pay providers, 2 states, Michigan and Wisconsin, reported that the rate represents the maximum payment rate for managed care plans, 11 states reported that the fee-for-service rates do not affect payments by private plans, and 6 states responded that the answer was unknown or did not respond to the question.
How Much do States Pay for Medicaid Home Care?
KFF asked states to report their average hourly rate paid to two types of home care provider agencies (personal care agencies and home health agencies) and three types of specific home care providers (personal care providers, home health aides, and registered nurses), but many states were unable to report all rates (Appendix Table 4). The number of states that responded to the survey but did not provide hourly payment rates or reported that payment rates were unknown was 4 for personal care agencies and 32 for home health agencies. Many states also did not provide payment rates for specific provider types: For registered nurses and home health aides, more than half of states did not provide hourly payment rate information or reported that payment rates were unknown.
Starting July 2026, states are required to report detailed payment rates for personal care, home health, and other services, per the provisions of the Biden Administration final Access rule (see Box 1). In addition to reporting payment rates for certain home care services, starting in 2030, states must demonstrate that at least 80% of the payments went to compensation for providers, also described as “direct care workers.” Meeting that requirement will require states to know both agency and provider payment rates. Among the states that were able to report payment rates, only 15 could report payment rates for personal care agencies, home health agencies, personal care providers, and home health aides, all of which would be required under the rule. Those 15 states include states that reported a mix of hourly and non-hourly rates, which makes comparisons between provider and agency rates more complicated. These challenges highlight the difficulties states face as they implement the requirements in the new rule, which will take effect in July 2026 (Box 1).
Box 1: Biden Administration Final Access Rule’s Provisions on Home Care
On May 10, 2024, the Biden Administration released a final rule aimed at helping to ensure access to Medicaid services, which has several notable provisions aimed at increasing transparency and improving access to Medicaid home care, increasing home care payment rates, and addressing home care workforce challenges. Although the 2025 reconciliation law delayed other Medicaid rules until 2034, it did not address the final rule on access to Medicaid services.
The rule cites workforce shortages as a major contributor to home care access barriers among Medicaid enrollees. To address those access barriers, the rule requires states to implement the following requirements. Some of the rules take effect as early as 2026, which means guidance to states about how to implement the requirements could emerge soon.
• Starting July 2026, states must report state hourly payment rates for personal care, homemaker services, home health aide services, and habilitation and publish that information on the state website. If states rates vary across provider types, geographies, or other factors, the states must report each of those rates.
• For each type of payment rate, the disclosures must also include the number of Medicaid paid claims and the number of Medicaid enrollees who received the service within the calendar year.
• States must establish an interested parties advisory group (IPAG) comprised of direct care workers, Medicaid enrollees and their representatives, and other interested parties. The IPAG will meet at least every two years to advise and consult on the sufficiency of current and proposed payment rates for personal care, homemaker services, home health aide services, and habilitation.
• Starting July 2030, states must ensure that at least 80% of payments to Medicaid providers for designated home care go directly to compensation for direct care workers. Designated home care include personal care, homemaker services, home health aide services, and habilitation. States may adopt separate standards for small providers or exempt small providers that meet reasonable criteria.
Beyond payment rates, the Access rule includes other requirements aimed at increasing access to home care. Starting July 2027, states will be required to report the number of people on waiting lists for services and the average amount of time from when homemaker services, home health aide services, or personal care services are initially approved to when services begin and the percentage of authorized hours that are provided. The proposed rule also includes provisions that would strengthen requirements around person-centered planning and needs assessment, create new requirements around incident management, establish requirements for people to file grievances if they are receiving home care from the state Medicaid program, and require states to report on nationally-standardized quality measures.
The home care payment-related requirements are one component of a broader emphasis on addressing Medicaid payment rates. The Access rule also requires states to report all fee-for-service Medicaid payment rates on state websites, and to compare various service-specific rates to those of Medicare. A companion rule on Medicaid managed care requires states to submit an annual payment analysis comparing managed care plans’ payment rates to Medicare payment rates for selected services.
States reported many reasons why it was difficult to report payment rates, including the following.
Some states reported that services were bundled together in various ways and therefore, the payment rates were not distinguishable.
Among states with managed care, some states responded that they did not know the payment rates for agencies because the services were paid for by managed care plans and they did not have access to those payment rates.
Other states responded that they knew the payment rates for agencies but not what the agencies paid their home care workers. Multiple states reported that they do not “dictate” what agencies pay to providers or that individual providers negotiate their own payment rates with the agencies.
In addition to having difficulty reporting payment rates, many states reported different payment rates for personal care across different waivers, and the waiver payment rates often differ from the payment rates for personal care provided through the state plan. When states reported multiple payment rates for personal care, KFF used the median of those payment rates in the analysis.
The payment rates to home care providers show considerable variation and are somewhat higher than those reported by other organizations on account of differences in reporting and provider categorization (Figure 4). KFF’s survey estimates that median payment rates to providers are $19 per hour for personal care providers, $41 for home health aides, and $70 for registered nurses. It is difficult to compare those numbers to other sources of data for the following reasons.
Other organizations group classes of providers together differently. PHI reports that in 2024, the median rate for home care workers was $17 per hour and $18 per hour for residential care aides. The Bureau of Labor Statistics reports $17 per hour for home health and personal care aides in 2024.
Other organizations include payment rates for workers regardless of the source of payment whereas KFF rates only reflect the Medicaid rates. Medicaid often covers more intensive personal care services than other payers, which may contribute to the higher rates.
Payment rates to home health agencies are generally larger than those to personal care agencies, but there is considerable variation in both (Figure 4). Among states reporting hourly rates, the rates for home health agencies range from $25 to $159 whereas those for personal care agencies range from $14 to $44. Those states reported that the median hourly payment to home health agencies was $51 and $26 for personal care agencies. Between 2024 and 2025, the median payment rates for personal care agencies and most other provider types increased marginally.
Among states able to report any payment rate data, payments for personal care workers range from below $15 to over $30 per hour (Figure 5, Appendix Table 4). Rates for home health aides are somewhat higher than those of personal care workers, reflecting the additional training requirements for such workers. Among the states with payment rates for home health aides in the highest category, some states reported that the rates were per visit or per day (which is noted in Appendix Table 4). There were other states with particularly high payment rates that did not report providing rates per visit or per day, but the rates may still reflect a non-hourly payment basis.
Appendix Tables
States’ Use of Strategies to Increase the Number of Medicaid Home Care Workers in 2025
States’ Responses to Whether They Were Experiencing Workforce Shortages by Type of Worker in 2025
States Reporting Permanent Closures of Home Care Providers in 2025, by the Location in Which Services are Offered
States’ Hourly Payment Rates for Home Care Agencies and Workers in 2025
Many older adults and people with disabilities require assistance with self-care such as bathing, dressing, and eating. Help with such services is known as “long-term care” and may be provided in institutional settings such as nursing facilities or in people’s homes and the community, including assisted living facilities. Four-in-ten adults incorrectly believe that Medicare is the primary source of coverage for low-income people who need nursing or home care, but Medicaid is the primary payer—covering nearly two-thirds of all home care spending in the United States in 2023.
The 2025 reconciliation law is estimated to reduce federal Medicaid spending by $911 billion (roughly 14%) over a decade and may have broad implications for home care, including for the workforce, support for family caregivers, and states’ coverage of services. Over half of Medicaid spending finances care for people ages 65 and older and those with disabilities, the enrollees most likely to use home care and related services, and reductions of this magnitude will leave states with difficult choices to raise new revenues or reduce Medicaid spending. The reconciliation law also established a new type of 1915(c) home care waiver for people who do not need an institutional level of care. Take-up of the new waivers is expected to be low given the cuts to federal Medicaid spending and requirements for states to demonstrate that new waivers will not increase the average amount of time that people wait for existing waiver services. This issue brief provides an overview of what Medicaid home care (also known as “home- and community-based services” or HCBS) is, who is covered, and what services were available in 2025. Over 5 million people receive Medicaid covered home care services annually.
This brief is one of several describing data from the 23rdKFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state), which states completed between April and July 2025. Other issue briefs from the survey describe the number of people on waiting lists for home care, how states manage home care spending, how home care programs support family caregivers, and payment rates for home care providers. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida responded to the 2025 survey, but response rates for certain questions were lower. Where possible, KFF supplemented survey data with previously reported or publicly available data to provide information for the states that did not respond. Survey findings are reported by state and waiver target population, although states often offer multiple waivers for a given target population. States generally completed the survey prior to enactment of the reconciliation law. Key takeaways include:
Nursing facility care is a required Medicaid benefit, but states can choose whether to provide most home care services. A key component of home care is personal care, which helps people who need assistance with self-care (such as bathing and dressing) and household activities (such as taking medications and preparing meals).
Medicaid home care can be offered through either the Medicaid state plan or as part of a specialized waiver. All states offer Medicaid home care through waivers, most commonly 1915(c) waivers (47 states).
Most states provide Medicaid home care through waivers that offer benefits specifically targeted to people with intellectual or developmental disabilities (48) and people ages 65 and older or who have physical disabilities (46). For such waivers, most states offer multiple waivers for each population: Among states with intellectual or developmental disability waivers, only 16 offer one program, while 18 offer three or more; and among states with waivers serving people ages 65 and older or who have physical disabilities, 24 offer only one program and 10 offer three or more.
Waivers’ coverage of different home care services, such as day services, supported employment, and home-based services, vary by the target populations they serve.
What programs do states use to provide Medicaid home care?
Unlike institutional long-term care, nearly all home care is optional for states to provide under Medicaid. States are required to offer cover home health—which consists of part-time nursing services; home health aide services; and medical supplies, equipment, and appliances suitable for use in the home—but all other home care services are provided at the discretion of the states. States use various federal legal “authorities,” also known as programs, to offer home care, which are generally categorized as being part of the Medicaid state plan or part of a waiver. If services are provided through a state plan, they must be offered to all eligible individuals. In contrast, services provided under waivers, such as 1115s or 1915(c)s, may be restricted to specific groups based on geographic region, income, or type of disability. Waivers may include a wider range of service types than can be provided under state plans, but states may limit the number of people receiving waiver services. When the number of people seeking services exceeds the number of waiver slots available, states may use waiting lists to manage participation in the waiver.
All states have at least one home care program and many states have multiple programs. Home care is most frequently offered through 1915(c) waivers (47 states) and the personal care state plan benefit (33 states), and less frequently offered through 1115 waivers (15 states) or the Community First Choice option (10 states, Figure 1). KFF estimates that 5.1 million people used Medicaid home care in 2023 compared with only 1.4 million people who used institutional long-term care.
All states offer people assistance with self-care and household activities under the personal care benefit, but they use different programs to do so. The primary home care benefit is personal care, which provides people with assistance with the activities of daily living (such as eating and dressing) and the instrumental activities of daily living (such as preparing meals and managing medication). States most commonly cover personal care through waivers (48 states), followed by the state plan (33 states).
How are people eligible for Medicaid home care?
Most people who are eligible for Medicaid home care qualify on the basis of having a disability or being ages 65 and older. Medicaid eligibility pathways in which eligibility is based on old age or disability are known as “non-MAGI” pathways because they do not use the Modified Adjusted Gross Income (MAGI) financial methodology that applies to children, pregnant individuals, parents, and other non-elderly adults with low incomes. In addition to considering income and age or disability status, non-MAGI eligibility pathways usually require people to demonstrate that they have limited savings and other financial resources (e.g., assets). Because nearly all non-MAGI pathways are optional, eligibility levels vary substantially across states.
Most states allow people with somewhat higher incomes to qualify for Medicaid home care, but income is capped at 300% of the supplemental security income limit ($2,901 per month in 2025) and assets are usually limited to $2,000 per person. Medicaid enrollees who use long-term care must also meet requirements related to their functional needs which are generally measured in terms of the ability to perform activities of daily living such as eating and bathing. Over half of people who use Medicaid home care are also enrolled in Medicare; such people are also known as dual-eligible individuals
In 2025, states operated over 300 different programs for Medicaid home care, many of which targeted a specific population. Most programs (259) were operated through 1915(c) waivers with 15 operated through 1115 waivers. The most common waiver programs target people with intellectual or developmental disabilities (48 states) and people who are ages 65 and older or have physical disabilities (46 states). States are likely to offer multiple waiver programs for the most common target populations, but states with less common waivers, such as those serving people with traumatic brain or spinal cord injuries or mental health conditions, typically only offer one program per target population.
Each year, some states’ waiver programs change, but in general, the trend has been towards offering more waivers. In 2025, only one state, Oregon, had new waivers and no states eliminated waivers. In Oregon, there is a new 1115 waiver for people who are ages 65 and older or have physical disabilities that provides in-home support services and support for family caregivers and a new 1915(c) waiver that allows parents of minor children with disabilities to be paid for providing attendant care to their child.
What services does Medicaid home care cover?
Besides personal care, Medicaid home care covers an array of services to help people with the activities of daily living and the instrumental activities of daily living. KFF asked states about what services they provide through Medicaid home care programs using the Centers for Medicare and Medicaid Services’ list of services, which are categorized in a comprehensive taxonomy. The taxonomy was developed to provide common language for describing home- and community-based services across waivers and state plans. Those services vary widely, including adult day care, supported employment, round-the-clock care, services to support unpaid family or friends who are caregivers, home-delivered meals, and non-medical transportation (Table 1).
All responding states (50) cover supported employment, day services, home-based services, and equipment, technology, and modifications in any home care program (Appendix Table 3). States often also offer other additional services for specific populations that are uniquely tailored to the needs of waiver recipients. Examples of such services reported in the 2025 survey include:
Illness support, group counseling, and bereavement counseling in a waiver for children who are medically frail or technology dependent (Colorado);
Discovery and career planning, additional residential supports, and community navigators in a waiver for people with intellectual or developmental disabilities (Hawaii);
Dental services, permanent supportive housing, and prevocational/community career planning in a waiver for people with intellectual or developmental disabilities (Louisiana);
Other speech, hearing, language, occupational, and physical therapies in a waiver for people who are ages 65 and older or have physical disabilities (Texas).
Among the categories defined by the Centers for Medicare & Medicaid Services, the least-frequently covered service was rent and food expenses for a live-in caregiver. For the most common services, there is little change in the number of states offering each type of service in a given year. (The numbers reported for most services are higher in 2025 but in many cases, that reflects a higher state response rate in 2025 than in 2024.)
States use waivers that target specific populations to offer tailored benefits, and covered services differ among different types of waivers (Figure 3, Appendix Table 4). Some services, such as equipment, technology and modifications, home-based services, and day services, are covered by most states and in most waiver programs. However, other services are much more targeted to specific populations. Comparing services among the most commonly-offered waivers (those serving people with intellectual or developmental disabilities and people who are ages 65 and older or have physical disabilities), shows some services are widely covered by one type of waiver but not the other. For example, 47 states cover supported employment for people with intellectual or developmental disabilities, but only 15 cover the service for people who are ages 65 and older or have physical disabilities, a population less likely to be working. Alternatively, home-delivered meals are covered by 41 states under waivers serving people who are ages 65 and older or have physical disabilities, but only under 10 states’ waivers serving people with intellectual or developmental disabilities. By enabling states to cover, at times, different services per target population, waivers allow states to customize services to the needs of the specific populations they serve.
Within waivers, states may change the benefit offerings from year to year, highlighting the flexibility that home care waivers offer to states in managing program benefits and spending. Focusing on the most common waivers and benefits, some notable changes between 2024 and 2025 include the following. (Due to variation in the number of states responding to KFF’s survey and changes in the number of waivers offered between 2024 and 2025, comparing the number of states or waivers offering each type of service could be misleading. However, looking at changes in covered services within a specific waiver can illuminate the flexibility available to states.)
Oregon began offering coverage of equipment, technology, and modifications for waivers serving people who are ages 65 and older or have physical disabilities, and Idaho now covers case management services for waivers serving the same population.
D.C. and South Dakota started offering coverage of non-medical transportation for waivers serving people with intellectual or developmental disabilities, but Illinois and Kentucky no longer cover this service for those waivers.
Michigan, Nevada, and Washington began covering day services for waivers serving people with intellectual or developmental disabilities, and Idaho started offering this benefit for waivers serving people who are ages 65 and older or have physical disabilities.
How do states use managed care to provide home care?
All but 11 states use managed care to provide at least some home care (Figure 4). In managed care, states pay managed care plans a set fee—often called a capitation payment—for each person enrolled and the managed care plans are responsible for providing all services to enrollees. Use of managed care to provide home care has been growing over time, with states using managed care to make their Medicaid spending more predictable and to help coordinate the services enrollees use.
Managed care is more commonly used for home health benefits provided through the state plan or 1115 waivers than for 1915(c) waivers (Figure 5, Appendix Table 5). Among the 15 states with 1115 waivers, 10 use managed care plans to provide at least some home care; and over two-thirds of states use managed care plans to provide at least some home health through the state plan. Fewer than half of states use managed care plans to provide some personal care through the state plan. For 1915(c) waivers, over half of states (26) use managed care plans, 4 more states than in 2024, but managed care was much less common for waivers serving people with intellectual or developmental disabilities—of the 47 out of 51 responding states with such waivers, only 8 provided any of the benefits through managed care.
This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.
Appendix Tables
States Offering Medicaid Home Care Through Various Federal Programs
States Offer Medicaid Home Care for Several Target Populations
States Reporting Coverage of Each Medicaid Home Care Service Under Any Program
States’ Coverage of Medicaid Home Care Services Vary by Target Population
All States Provide Optional Medicaid Home Care, Many Using Managed Care
KFF estimates that 5.1 million Medicaid enrollees use home care, which provides medical and supportive services to help people with the activities of daily living (such as eating and bathing) and the instrumental activities of daily living (such as preparing meals and managing medications). Medicare generally does not cover home care (also known as home- and community-based services or HCBS), and Medicaid paid for two-thirds of home care spending in the United States in 2023.
In Medicaid home care, many people “self-direct” their services, giving them greater autonomy over the types of services provided and who they are provided by; and in some cases, allowing payments to family caregivers. Payments for caregiving can help mitigate the financial struggles family caregivers experience when they are forced to reduce their hours of work or quit their jobs on account of their caregiving duties. KFF focus groups of caregivers found that family caregivers often reported struggling to make ends meet and having to reduce the hours they are working other jobs due to the demands of caregiving. Self-directed services can also help address shortages of paid home care workers, which can be one of the factors placing additional strain on family caregivers. Beyond paying for their caregiving, Medicaid supports family caregivers with services such as training, support groups, and respite care (which is paid care that allows family caregivers to take a break from their normal responsibilities).
The 2025 reconciliation law, passed on July 4, includes significant changes to the Medicaid program that are estimated to reduce federal Medicaid spending by $911 billion over the next decade. Given the substantial share of Medicaid spending that pays for home care, and the optional nature of most home care programs, cuts to home care programs could occur as states respond to the reductions in federal spending.
Such changes could affect Medicaid supports to family caregivers, all of which are optional for states to provide. A reduction in the availability of those supports could exacerbate challenges for people who need home care and are unable to find other sources of care due to workforce shortages, which may be amplified by the Trump Administration’s intensified immigration enforcement and restrictive policies, since nearly one-in-three home care workers are immigrants. For family caregivers, many may need to continue to provide care without payments and other Medicaid changes could affect access to health coverage. According to AARP’s 2025 Caregiving in the US report, there are over 8 million family caregivers for whom Medicaid is their source of health insurance (13% of 63 million total family caregivers).
Amidst this background, this issue brief describes the availability of self-directed services and supports for family caregivers in Medicaid home care in 2025, before most provisions in the reconciliation law take effect. The data come from the 23rdKFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia (hereafter referred to as a state), which states completed between April and July 2025. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities). All states except Florida responded to the 2025 survey, but response rates for certain questions were lower. Survey findings are reported by state and waiver target population, although states often offer multiple waivers for a given target population. Key findings include:
All reporting states except Alaska allow Medicaid enrollees to self-direct their home care in at least some circumstances, and among those states, all allow enrollees to select, train, and dismiss their caregivers.
All responding states pay family caregivers under some circumstances and provide family caregivers with other types of support, including respite care (Figure 1, Appendix Table 1)
Family supports are most widely available for caregivers of people with intellectual or developmental disabilities (I/DD).
How Many States Allow Medicaid Enrollees to Self-Direct Their Home Care?
Nearly all states allow Medicaid enrollees to self-direct their home care in some circumstances (Figure 2, Appendix Table 2).Self-direction came out of the “consumer-directed” movement for personal care services that started with demonstration programs in 19 states funded through grants from the Robert Wood Johnson Foundation. Today, states may give people the option to self-direct home care through a wide variety of optional home care programs. States most frequently allow self-direction in waivers that serve people with intellectual or developmental disabilities, followed by people who are ages 65 and older or have physical disabilities. Among the 50 states responding to KFF’s survey, Alaska is the only state that reported not permitting self-direction under any of the home care programs.
Among states that authorize self-direction, all states allow enrollees to select, dismiss, and train workers (Figure 3). The ability to select, train, and dismiss workers is referred to as “employer authority” because it allows Medicaid enrollees (with the help of their designated representatives when appropriate) to decide who will be caring for them. All states with self-directed services programs provide employer authority to enrollees. Most states also allow enrollees to establish payment rates for their caregivers (41) and to determine how much Medicaid funding is spent among the various authorized services (39).
How Many States Pay Family Caregivers and Through Which Home Care Programs?
All responding states pay family caregivers through one or more Medicaid home care programs (Figure 1, Appendix Table 1). Family caregivers can generally be paid to provide personal care, which may be offered through several different types of Medicaid home care programs. Personal care may be provided through waivers such as the 1115 or 1915(c) programs, through the Medicaid state plan, or a combination of both. Waiver services tend to encompass a wider range of benefits than the state plan benefit, but waivers are usually restricted to specific groups of Medicaid enrollees based on geographic region, income, or type of disability; and are often only available to a limited number of people, resulting in waiting lists.
All responding states allow payments to family and friends through one or more waiver programs, but fewer states allow payments to legally responsible relatives. Forty-four states allow payments to legally responsible relatives through waiver programs. Payments to legally responsible relatives are less common than those to other family and friends because of additional legal requirements that pertain to payments to legally responsible relatives (Box 1). Payments to family caregivers are less common through the state plan—allowed by 24 states for other family and friends and by 6 states for legally responsible relatives. States pay family caregivers through the state plan less frequently because fewer states offer personal care through the state plan and because the legal requirements governing state plan services are more restrictive than those governing waiver services.
While all responding states allow payments to family caregivers, it is unknown what percentage of waiver participants are receiving paid care. KFF asked states, “What percentage of waiver recipients are receiving paid care from their legally responsible relatives/family members who are not legally responsible relatives?” Over two-thirds of states were unable to report the percentage of waiver recipients receiving paid care from either legally responsible relatives or other family members/friends. It is also unknown how often people with paid family caregivers also receive other paid care.
Box 1: What are the legal requirements for paying family caregivers?
Medicaid laws have more complicated requirements for states to pay legally responsible relatives than is the case for other types of family and friend caregivers. The specific legal requirements for paying family caregivers are complicated and differ across home care programs:
• For personal care offered through the state plan using section 1905 authority, there is a federal prohibition on paying for services provided by spouses and parents of minor children (which comprise most but not all legally responsible relatives). Other family and friends may be paid if they meet applicable provider qualifications, there are strict controls on the payments, and the provision of care is justified (which can be done when there is a lack of other qualified providers in the area).
• For home care offered through waiver programs, the requirements governing payments to family and friends are like those governing personal care through section 1905 authority. A key difference is that states may pay legally responsible relatives when the services being provided are “extraordinary care,” which is defined as care that exceeds the range of activities a legally responsible relative would ordinarily perform and is necessary to health, welfare, and avoiding institutionalization.
• For personal care offered through the state plan using one of the section 1915 authorities, states may pay legally responsible relatives using criteria like those of the waiver programs. However, some of those authorities designate a family member to be the recipient’s legal representative and may prohibit payments to legal representatives.
Payments for family caregivers are most common under waivers for people with intellectual or developmental disabilities (Figure 4, Appendix Table 3). Among the 47 states that responded to the survey and have waivers for people with intellectual or developmental disabilities, all 47 allow payments to family caregivers. There are fewer states with other types of waivers, and not all the other waivers allow payments to family caregivers. Among the 45 responding states with waivers for older adults and people with physical disabilities, 43 pay family caregivers, and among the 21 states with waivers for people with traumatic brain or spinal cord injuries, 19 do.
In most cases, family caregivers receive hourly wages like those of other employees, but 11 states have adopted programs known as structured family caregiving, in which family members are paid a per diem rate (Appendix Table 4). Structured family caregiving is a Medicaid benefit that supports unpaid caregivers of people who use Medicaid home care through waiver programs. In the structured program, Medicaid pays provider agencies a daily stipend for participants. The agency is responsible for directing a care coordinator or social worker and a nurse to oversee the family caregiver, answer health-related questions, and provide emotional support; conducting home visits about once per month; and passing a fixed percentage of the stipend (usually 50% – 65%) on to the family caregiver. Among the handful of payment rates reported in an overview of the program by the American Council on Aging, payments to family members are around $40 to $70 per day. States reported structured family caregiving programs in the following home care waivers:
Older adults and people with disabilities in 9 states (Connecticut, Georgia, Indiana, Louisiana, North Carolina, North Dakota, Ohio, Rhode Island, and South Dakota),
People with intellectual or developmental disabilities in 2 states (Indiana and New Hampshire),
Medically fragile children in North Carolina,
People with traumatic brain and/or spinal cord injuries in Indiana and
People with Alzheimer’s and related disorders in Missouri.
Although KFF’s survey only includes home care waivers, according to the American Council on Aging, two states offered structured family caregiving as a standalone program: Massachusetts offers it as a state plan benefit through a program for adults in foster care, and Nevada has a standalone waiver to provide the benefit for caregivers of people with Alzheimer’s and related dementias.
What Other Types of Support Does Medicaid Home Care Provide for Family Caregivers?
All responding states provide support for family caregivers—who may be paid or unpaid—and most offer more than one type of support (Figure 5, Appendix Table 5). All responding states reported covering respite care, which provides short-term relief for caregivers, allowing them to rest, travel, attend appointments, or spend time with other family and friends. Other commonly covered benefits include caregiver training (37 states), and counseling or support groups (26 states).
Respite care may be provided anywhere from a few hours to several weeks at a time. Medicare only covers respite care for people who are receiving hospice care, which is only available for people who are terminally ill and electing to receive comfort care instead of curative care for their illness. That makes Medicaid’s respite care the primary source of coverage for caregivers of people with Medicare and Medicaid. Respite care is offered most frequently under waivers for people with intellectual or developmental disabilities (44 states) and older adults and people with disabilities (44 states).
Daily respite care is offered by the most states (43), followed by institutional respite care (40 states, Figure 6, Appendix Table 6). Daily respite care is available under waivers for people with intellectual or developmental disabilities in 34 states and available in 32 states within waivers for people who are ages 65 and older or have physical disabilities. Twenty-two states provide institutional respite care within waivers for people who are ages 65 and older or have physical disabilities and within waivers for people with intellectual or developmental disabilities. Weekly respite care is the least frequently offered (24 states total), and over half of states (32) report offering other types such as hourly, monthly, or annual.
This work was supported in part by Arnold Ventures. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.
Appendix Tables
States’ Policies to Allow Medicaid Home Care Payments to Spouses, Parents of Minor Children, and Other Legally Responsible Relatives for Caregiving
States’ Policies to Allow Individuals to Self-Direct Medicaid Home Care by Waiver/Program
States’ Policies to Allow Medicaid Home Care Payments to Spouses, Parents of Minor Children, and Other Legally Responsible Relatives as well as Family and Friends for Caregiving
States Offering the Structured Family Caregiver Program, Which Supports Unpaid Caregivers of Persons Who Are Using Medicaid Home Care, and Waivers the Program Is Offered Under
States’ Policies for Offering Different Types of Family Caregiving Supports
Types of Respite Care Offered by State and Home Care Program: Daily, Weekly, Institutional, and Other