The 2025 reconciliation law could have major implications for nearly 15,000 federally certified nursing facilities and the more than 1.2 million people living in them. Nursing facilities provide medical and personal care services for older adults and people with disabilities. In 2023, Medicaid paid for 44% of long-term institutional care costs; 37% of long-term institutional care costs were paid for out-of-pocket; and the remaining 18% was covered by other public and private payers. Although provisions in the reconciliation law do not directly limit or reduce nursing facility services, changes to the Medicaid program could result in reduced payments from Medicaid for nursing facility care and may result in fewer people having Medicaid coverage of nursing facility care (see Box 1 for more on the 2025 reconciliation law.)

This data note discusses the impact of the 2025 reconciliation law on nursing facilities and examines the characteristics of nursing facilities and the people living in them with data from Nursing Home Compare, a publicly available dataset that provides a snapshot of information on quality of care in each nursing facility, and CASPER (Certification and Survey Provider Enhanced Reports), a dataset that includes detailed metrics collected by surveyors during nursing facility inspections. State-level data are also available on State Health Facts, KFF’s data repository with downloadable health indicators. Key takeaways from July 2025 data include:

• There are 14,742 nursing facilities certified by CMS and about 1.24 million residents living in these certified nursing facilities (Figure 1).
• Nursing facility residents receive, on average, about 3.85 hours of nursing care per day from licensed practical nurses (LPN/LVN), registered nurses (RNs), and nurse aides (Figure 2).
• On average, nursing facilities receive 9.5 deficiencies over the course of a survey cycle (Figure 3).
• While nearly all facilities receive at least one deficiency over the course of a survey cycle, 27% of facilities receive serious deficiencies for actual harm or jeopardy posed to a resident (Figure 3).

As of July 2025, there are 14,742 nursing facilities certified by CMS (Figure 1). The number of nursing facilities certified by CMS decreased by 6% between July 2015 and July 2025. There has generally been a steady decline during that time period. In order to receive payment under the Medicare and/or Medicaid programs, nursing facilities are required to follow certain regulations and be certified by CMS. The decreased number of nursing facilities reflects the net change in the number of certified facilities after accounting for newly-certified facilities and facilities that are no longer certified, including facilities that closed.

There are about 1.24 million residents living in certified nursing facilities (Figure 1). Since 2021, the number of nursing facility residents has gradually increased from 1.10 million to 1.24 million. However, between 2015 and 2025, the number of residents living in nursing facilities decreased by 9%, with most of that coming from a steep decline between 2020 and 2021, reflecting the effects of the COVID-19 pandemic. Prior to the pandemic, the number of residents was relatively steady, although it declined from 1.37 million in 2015 to 1.32 million in 2020. COVID-19 exacerbated the decrease in nursing facility residents—in part because nursing facility residents and staff incurred so many deaths during the pandemic.

Residents receive an average of 3.85 hours of nursing care per day, including 0.87 hours of LPN care, 0.68 hours of RN care, and 2.3 hours of nurse aide care (Figure 2). While staffing levels have gradually slightly increased overtime since 2022, the average hours of nursing care that nursing facility residents received declined by 7%, from 4.13 hours to 3.85 hours per resident each day, between July 2015 and July 2025. The decrease was driven by a 19% decline in registered nurse (RN) hours and a 7% decline in nurse aide hours. Licensed practical nurse (LPN) hours increased by 5% in this same time period. The 2024 rule would have required nursing facilities to meet minimum standards in staff hours for RNs and nurse aides but did not include any requirements for LPNs. A Texas judge overturned key elements of the rule in April 2025, the 2025 reconciliation law delayed all provisions of the rule until October 2034 (Box 1), and the Trump Administration rescinded the rule in December 2025. Previous KFF analysis show that just 19% of nursing facilities met the standards at the time of the rule’s passing.

The total hours of nursing care per resident decreased between 2015 and 2025, but rose briefly in 2021. The relatively higher staffing hours per resident in 2021 reflected the fact that the number of residents declined more quickly than the number of total nursing staff hours did between 2020 and 2021. In 2021, the number of staffing hours was 12% lower than in 2020 (data not shown). These lower staffing levels in the last several years align with data as of March 2024 showing that the number of workers employed at long-term care facilities continues to remain below pre-pandemic levels.

Nursing facilities receive an average of 9.5 deficiencies over the course of a survey cycle and 27% of facilities receive deficiencies for actual harm or jeopardy (Figure 3, Box 3). While nearly all facilities receive at least one deficiency during a survey cycle, this analysis focuses on the share with serious deficiencies since there is wide variation in the types of deficiencies a facility may receive. Both the average number of deficiencies and the share of facilities with serious deficiencies have increased over time, which could reflect increased oversight and low staffing levels that lead to staffing-related deficiencies. Between 2015 and 2025, the average count of deficiencies per nursing facility increased from 6.8 to 9.5, an increase of 40%. The increase was generally steady overtime, except for two stable periods: 1) between 2020 and 2022 and 2) between 2024 and 2025 (though 2024 and 2025 reported the highest number deficiencies during the 10-year period). The share of facilities reporting serious deficiencies between 2015 and 2025 increased from 17% to 27%, with a slight decrease between 2024 and 2025. A 2023 report on nursing home staffing by Abt Associates found that better-staffed nursing homes are typically cited for fewer deficiencies or violations of federal regulations, suggesting there may be a relationship between the increase in deficiencies and the general decrease in staffing levels over the 10-year time period.

Medicaid is the primary payer for 63% of nursing facility residents; Medicare for 14% of residents; and the remaining 23% of residents have another primary payer (ex. out-of-pocket) (Figure 4). The share of residents by primary payer has stayed relatively stable over time. Medicare does not generally cover long-term care but does cover up to 100 days of skilled nursing facility care following a qualifying hospital stay. KFF polling shows that four in ten adults overall incorrectly believe that Medicare is the primary source of insurance coverage for low-income people who need nursing facility care. 

Nearly three-quarters (73%) of nursing facilities are for-profit, one-fifth (20%) are non-profit, and the remaining seven percent are government-owned (Figure 5). The share of facilities by ownership type has also stayed relatively stable over time but there was increasing scrutiny over the 73% of facilities that are for-profit during the prior Administration. Despite little change in the type of ownership, there have been reports of private equity firms purchasing nursing facilities and changing operations to increase profits, resulting in lower-quality care. The GAO estimates that about 5% of nursing facilities had private equity ownership in 2022.

The Biden Administration issued a final rule in November 2023 on nursing facilities (separate from the April 2024 staffing rule that was delayed by the 2025 reconciliation law and then rescinded by the Trump Administration in December 2025). The 2023 nursing facility rule requires nursing homes enrolled in Medicare or Medicaid to disclose detailed information regarding their owners, operators, and management, including:

• Anyone who exercises any financial control over the facility;
• Anyone who leases or subleases property to the facility, including anyone who owns 5% or more of the total value of the property; and
• Anyone who provides administrative services, clinical consulting services, accounting or financial services, policies or procedures on operations, or cash management services for the facilities.

Facilities must also disclose whether any of the owning or managing entities are a private equity company or real estate investment trust (REIT). Facilities began self-reporting this data to CMS in early 2024 and the data is now available to the public. However, these data may be incomplete for now as fewer than 100 facilities report private equity ownership and just over 300 facilities report REIT ownership. Other research estimates those counts to be higher. 

The Trump administration has made several recent changes to federal routine vaccination recommendations. Specifically, under the auspices of Secretary Kennedy, who has long questioned the safety and efficacy of vaccines and stated his intention to review vaccine schedules, the CDC’s Advisory Committee on Immunization Practices (ACIP) has recommended changes (including to age group, type of vaccine, and/or clinical decision-making process) to seven vaccine usage recommendations in the United States: Meningococcal; RSV for adults; RSV for children; influenza; COVID-19; Measles, Mumps, Rubella and Varicella (MMRV); and Hepatitis B. These recommendations, which have been adopted by the HHS Secretary or Acting CDC Director, have raised questions about the implications for insurance coverage, since most insurers are required to cover ACIP/CDC recommended vaccines at no-cost, either due to requirements of the Affordable Care Act or other federal statutes.

Below, we provide an overview of each of these changes and what they mean for coverage requirements. As the table indicates, of the seven recent changes, two have no implications for coverage, two removed the coverage requirement, and three expanded the requirement. When a coverage requirement is removed, an insurer could still choose to cover a vaccine at no cost. In fact, AHIP, the trade association for the health insurance industry whose members cover more than 200 million Americans, announced that health plans will continue to cover all ACIP-recommended immunizations that were recommended as of September 1, 2025 with no cost-sharing for patients through the end of 2026. When a coverage requirement is expanded, insurers (with limited exception) must cover the vaccine at no-cost. The insurance requirement extends to vaccines with “individual decision-making” (also known as “shared clinical decision-making”) recommendations as well, which are those “individually based and informed by a decision process between the health care provider and the patient or parent/guardian”.

In addition to federal requirements for coverage, states have the authority to require state-regulated health insurers (employer plans that are fully insured and individual and small-group marketplace plans) to cover vaccines beyond minimum federal requirements (and not necessarily linked to current ACIP/CDC recommendations). As of December 2025, eight states have moved to do so (and one state authorizes the state Commissioner of Insurance to do so). Still, states cannot impose coverage requirements on self-insured employer plans, which cover most (67%) people with employer coverage.

Additional changes to ACIP-recommended vaccine schedules are likely, as President Trump has issued a Presidential Memorandum calling on HHS and CDC to begin a “process to align U.S. core childhood vaccine recommendations with best practices from ‘peer, developed countries’”. Beyond their implications for insurance coverage, changes to vaccine recommendations, particularly those that narrow or limit access, are likely to have other implications, such as driving down already falling vaccine coverage rates in the United States.

Changes to Vaccine Recommendations and Insurance Coverage

Notes: See KFF, ACIP, CDC, and Insurance Coverage of Vaccines in the United States, for coverage criteria by payer. *While Medicare Part B is required to cover influenza vaccine by statute, not linked to ACIP/CDC, this change will result in the removal of the multi-dose vaccine from the market.

Sources:

• https://www.cdc.gov/acip/vaccine-recommendations/index.html
• https://www.cdc.gov/acip/vaccine-recommendations/index.html#:~:text=RSV%20Vaccines%20%2D%20Adults
• https://www.hhs.gov/press-room/acip-recommends-covid19-vaccination-individual-decision-making.html 
• https://www.hhs.gov/press-room/thimerosal-mercury-removed-from-us-flu-vaccines-acip.html
• https://www.hhs.gov/press-room/cdc-immunization-schedule-individual-decision-covid19-standalone-chickenpox-toddlers.html
• https://www.hhs.gov/press-room/acip-recommends-chickenpox-vaccine-for-toddlers.html
• https://www.hhs.gov/press-room/acip-recommends-individual-based-decision-making-hepatitis-b-vaccine-birth-dose-infants-born-women-test-negative-virus.html
• https://www.hhs.gov/press-room/cdc-adopts-individual-based-decision-making-for-hepatitis-b-immunization-for-infants-born-to-women-who-test-negative-for-the-hepatitis-b-virus.html

For many years, KFF polling has found that the high cost of health care is a burden on U.S. families, and that health care costs factor into decisions about insurance coverage and care seeking. These costs and the prospect of unexpected medical bills also rank as the top financial worries for adults and their families. This data note summarizes recent KFF polling on the public’s experiences with health care costs. Main takeaways include:

• Just under half of U.S. adults say it is difficult to afford health care costs, and about three in ten say they or a family member in their household had problems paying for health care in the past 12 months. Hispanic adults, young adults, and the uninsured are particularly likely to report problems affording health care in the past year.
• The cost of health care can lead some to put off needed care. About one-third (36%) of adults say that in the past 12 months they have skipped or postponed getting health care they needed because of the cost. Notably three in four (75%) uninsured adults under age 65 say they went without needed care because of the cost.
• The cost of prescription drugs prevents some people from filling prescriptions. About one in five adults (21%) say they have not filled a prescription because of the cost while a similar share (23%) say they have instead opted for over-the-counter alternatives. About one in seven adults say they have cut pills in half or skipped doses of medicine in the last year because of the cost. A third of all adults say they have taken at least one of these cost saving measures in the past year, including larger shares of women and those with lower incomes.
• Health care debt is a burden for a large share of Americans. In 2022, about four in ten adults (41%) reported having debt due to medical or dental bills including debts owed to credit cards, collections agencies, family and friends, banks, and other lenders to pay for their health care costs, with disproportionate shares of Black and Hispanic adults, women, parents, those with low incomes, and uninsured adults saying they have health care debt.
• Those who are covered by health insurance are not immune to the burden of health care costs. Almost four in ten insured adults under the age of 65 (38%) worry about affording their monthly health insurance premium and large shares of adults with employer-sponsored insurance (ESI) and those with Marketplace coverage rate their insurance as “fair” or “poor” when it comes to their monthly premium and to out-of-pocket costs to see a doctor.
• Notable shares of adults say they are worried about affording medical costs such as the cost of health care services (including out-of-pocket costs not covered by insurance, such as co-pays and deductibles) or unexpected bills. About six in ten adults say they are either “very” or “somewhat worried” about being able to afford the cost of health care services (62%) or unexpected medical bills (61%) for themselves and their families.

Difficulty Affording Medical Costs

Many U.S. adults have trouble affording health care costs. While lower income and uninsured adults are the most likely to report this, those with health insurance and those with higher incomes are not immune to the high cost of medical care. Just under half of U.S. adults say that it is very or somewhat difficult for them to afford their health care costs (44%). Uninsured adults under age 65 are much more likely to say affording health care costs is difficult (82%) compared to those with health insurance coverage (42%). Additionally, a slight majority of Hispanic adults (55%) and half of Black adults (49%) report difficulty affording health care costs compared to about four in ten White adults (39%). Adults in households with annual incomes under $40,000 are more likely than adults in households with higher incomes to say it is difficult to afford their health care costs. (Source: KFF Health Tracking Poll: May 2025)

When asked specifically about problems paying for health care in the past year, about three in ten (28%) adults say they or a family member in their household had problems paying for care, rising to four in ten among Hispanic adults (41%) and young adults ages 18 to 29 (40%). Among those under age 65, six in ten (59%) uninsured adults report problems paying for health care in the past year, about twice the share of insured adults who say the same (30%). (Source: KFF Health Tracking Poll: November 2025)

The cost of care can also lead some adults to skip or delay seeking services, with one-third (36%) of adults saying that they have skipped or postponed getting needed health care in the past 12 months because of the cost. Women are more likely than men to say they have skipped or postponed getting health care they needed because of the cost (38% vs. 32%). Adults ages 65 and older, most of whom are eligible for health care coverage through Medicare, are much less likely than younger age groups to say they have not gotten health care they needed because of cost.

Three-quarters of uninsured adults say they have skipped or postponed getting the health care they needed due to cost. Having health insurance, however, does not offer ironclad protection as about four in ten adults with insurance (37%) still report not getting health care they needed due to cost. (Source: KFF Health Tracking Poll: May 2025)

Skipping care due to costs can have notable health impacts. Nearly two in ten adults (18%) report that their health got worse because they skipped or delayed getting care. Among adults under age 65, those who are uninsured are twice as likely as those with health coverage to say that their health worsened due to skipped or postponed care (42% vs. 20%). About four times as many adults under age 65 (23%) say their health got worse after skipping or postponing care as adults ages 65 and older (6%), most of whom have Medicare coverage. (Source: KFF Health Tracking Poll: May 2025)

A 2022 KFF report found that people who already have debt due to medical or dental care are disproportionately likely to put off or skip medical care. Half (51%) of adults currently experiencing debt due to medical or dental bills say in the past year, cost has been a probititor to getting the medical test or treatment that was recommended by a doctor. (Source: KFF Health Care Debt Survey: Feb.-Mar. 2022)

Prescription Drug Costs

The high cost of prescription drugs also leads some people to cut back on their medications in various ways. About one in four adults (23%) say in the past 12 months they have taken an over-the-counter drug instead of getting a prescription filled because of cost concerns and about one in five (21%) say they have not filled a prescription due to the cost. Additionally, about one in seven adults (15%) say that in the past 12 months they have cut pills in half or skipped doses of medicine due to cost.

One-third of the public (33%) say they have taken any of these cost saving measures in the past 12 months. Four in ten women (39%) say they have taken any of these prescription medication measures compared to one-quarter (26%) of men. Additionally, just under half of Hispanic adults (46%) say they’ve either taken an over-the-counter drug, skipped doses, or not filled prescriptions because of the cost, compared to three in ten (29%) White adults who say the same. Similarly, larger shares those with lower incomes report having taken a cost-saving measure in the last year compared to those with higher incomes (41% of those with a household income of less than $40,000 a year vs. 29% of those with an income of $40,000 or more). (Source: KFF Health Tracking Poll: May 2025)

Notably, adults with chronic conditions, who tend to have higher health care and medication needs, can often face challenges affording prescriptions. In KFF’s 2023 Survey of Consumer Experiences with Health Insurance, insured adult with a chronic condition were twice as likely as those without a chronic condition to say they had delayed or gone without prescription drugs due to the cost (18% vs. 9%).

Health Insurance Cost Ratings

Health insurance provides some financial protection, but premiums and out-of-pocket costs can still present a financial burden for many individuals. Overall, most insured adults rate their health insurance as “excellent” or “good” when it comes to the amount they have to pay out-of-pocket for their prescriptions (61%), the amount they have to pay out-of-pocket to see a doctor (53%), and the amount they pay monthly for insurance (54%). However, at least three in ten rate their insurance as “fair” or “poor” on each of these metrics, and affordability ratings vary depending on the type of coverage people have.

Adults who have private insurance through employer-sponsored insurance or Marketplace coverage are more likely than those with Medicare or Medicaid to rate their insurance negatively when it comes to their monthly premium, the amount they have to pay out of pocket to see a doctor, and their prescription co-pays. About one in four adults with Medicare give negative ratings to the amount they have to pay each month for insurance and to their out-of-pocket prescription costs, while about one in five give their insurance a negative rating when it comes to their out-of-pocket costs to see a doctor.

Medicaid enrollees are less likely than those with other coverage types to give their insurance negative ratings on these affordability measures (Medicaid does not charge monthly premiums in most states, and copays for covered services, where applied, are required to be nominal). (Source: KFF Survey of Consumer Experiences with Health Insurance)

Health Care Debt

In June 2022, KFF released an analysis of the KFF Health Care Debt Survey, a companion report to the investigative journalism project on health care debt conducted by KFF Health News and NPR, Diagnosis Debt. This project found that health care debt is a wide-reaching problem in the United States and that 41% of U.S. adults currently have some type of debt due to medical or dental bills from their own or someone else’s care, including about a quarter of adults (24%) who say they have medical or dental bills that are past due or that they are unable to pay, and one in five (21%) who have bills they are paying off over time directly to a provider. One in six (17%) report debt owed to a bank, collection agency, or other lender from loans taken out to pay for medical or dental bills, while similar shares say they have health care debt from bills they put on a credit card and are paying off over time (17%). One in ten report debt owed to a family member or friend from money they borrowed to pay off medical or dental bills.

While four in ten U.S. adults have some type of health care debt, disproportionate shares of lower income adults, the uninsured, Black and Hispanic adults, women, and parents report current debt due to medical or dental bills.

Vulnerabilities and Worries About Health Care and Long-Term Care Costs

KFF’s May 2025 Health Tracking Poll shows the cost of health care services and unexpected medical bills are at the top of the list of people’s financial worries, with about six in ten saying they are at least somewhat worried about affording the cost of health care services (62%) or unexpected medical bills (61%) for themselves and their families. These are larger than the shares who say they worry about affording housing costs (51%), transportation expenses (50%), utilities (49%), and food (48%) for their families.

Notably, eight in ten uninsured adults under age 65 say they are worried about affording the cost of health care services or unexpected medical bills (82% and 80%, respectively). About four in ten (38%) insured adults under the age of 65 say they are worried about affording their monthly health insurance premium. (Source: KFF Health Tracking Poll: May 2025)

Many U.S. adults may be one unexpected medical bill from falling into debt. About half of U.S. adults say they would not be able to pay an unexpected medical bill that came to $500 out of pocket. This includes one in five (19%) who would not be able to pay it at all, 5% who would borrow the money from a bank, payday lender, friends or family to cover the cost, and one in five (21%) who would incur credit card debt in order to pay the bill. Women, those with lower household incomes, Black and Hispanic adults are more likely than their counterparts to say they would be unable to afford this type of bill. (Source: KFF Health Care Debt Survey: Feb.-Mar. 2022)

Among older adults, the costs of long-term care and support services are also a concern. Almost six in ten (57%) adults 65 and older say they are at least “somewhat anxious” about affording the cost of a nursing home or assisted living facility if they needed it, and half say they feel anxious about being able to afford support services such as paid nurses or aides. These concerns also loom large among those between the ages of 50 and 64, with more than seven in ten saying they feel anxious about affording residential care (73%) and care from paid nurses or aides (72%) if they were to need these services. See The Affordability of Long-Term Care and Support Services: Findings from a KFF Survey for a deeper dive into concerns about the affordability of nursing homes and support services.

On January 20, 2025, the first day of his second term, President Trump issued an executive order on “gender ideology” outlining how his administration would view sex and gender and incorporate these concepts into government. This executive order has had widespread implications across government and for federal grantees. One area that has been impacted is the federal government’s data collection efforts. This includes changes to questions about sexual orientation and gender identity (SOGI) in multiple federal surveys, and retreating from plans to incorporate SOGI questions in surveys of the U.S. population by the Census Bureau. While data collection on both sexual orientation and gender has been scaled back or modified, measures relating to gender identity have been more specifically targeted for deletion.

Although several national surveys and data sets have been affected by changes to SOGI data collection and availability, this brief focuses specifically on changes in three national surveys that are representative of these efforts: the National Health Interview Survey (NHIS), the Medicare Current Beneficiary Survey (MCBS), and the National Crime Victimization Survey (NCVS). These surveys are central to the federal government’s efforts to understand the health and well-being of the U.S. population overall (NHIS) and people with Medicare (MCBS) and to understand people’s experiences with criminal victimization (NCVS), and had the potential to meaningfully expand the knowledge base in these areas as they relate to the nearly 14 million U.S. adults who identify as LGBT, and particularly the over 2 million adults who identify as transgender. Limiting SOGI data collection in these and other federal surveys moving forward will present challenges for understanding and assessing the needs and experiences of the LGBTQ population in the U.S.

Overview of Surveys Examined and Adoption of SOGI Metrics

The NHIS, MCBS, and NCVS offer unique opportunities to better understand the experiences of people’s health and well-being. While not the only federal sources that have historically collected SOGI data, these three surveys represent distinct and policy-relevant opportunities for the collection and use of LGBTQ data. The NHIS has included SOGI measures that enable analyses of broad population health measures, including insurance coverage patterns and overall health status. The MCBS could offer rare insight into LGBTQ older adults—a population that is typically difficult to sample due to its relatively small size (just 1.8% of adults over 65 identify as LGBT, but this share is likely to grow larger over time). SOGI data were only recently added to MCBS. Finally, the NCVS has provided SOGI data that is particularly valuable for examining experiences of violence and discrimination, areas where disparities between LGBTQ and non-LGBTQ people have been well documented.

The National Health Interview Survey (NHIS), administered by the National Center for Health Statistics within the U.S. Centers for Disease Control and Prevention, is the largest and oldest national health survey in the U.S. and collects information on a broad range of topics including demographics, socioeconomic factors, health status, health care access, and health coverage. NHIS data provides in depth information across the population, and its size allows for comparisons across groups, including LGBT people.

Questions about sexual orientation were added to NHIS in 2013 and questions related to gender identity were added to the survey in 2022 on an experimental basis to develop a methodology. On adding a sexual orientation variable to the survey (at the time referred to as sexual identity) HHS wrote, “The objective of asking a question on sexual identity in the NHIS is to fill the tremendous gap that exists regarding knowledge of general health behaviors, health status, and health care utilization of LGBT persons.”

The Medicare Current Beneficiary Survey (MCBS), administered by the Centers for Medicare & Medicaid Services (CMS), is the government’s long-running, comprehensive, nationally representative survey of people with Medicare. The MCBS includes questions about beneficiaries’ health care use, health status, cost and payment issues, demographic and housing characteristics, experiences with care, and other domains.

Questions about sexual orientation and gender identity were added to the survey in 2023 to provide the opportunity to gain new knowledge about LGBTQ older adults and people with disabilities covered by Medicare. According to CMS at the time, “Including sexual orientation and gender identity questions on the MCBS will provide nationally representative data on topics such as the accessibility and utilization of health care services by the Lesbian, Gay, Bisexual, and Transgender (LGBT) populations and the resulting health disparities that impact this community. … In no instance have we identified another source of data that would be an effective substitute for the MCBS.” CMS also added an item asking Medicare beneficiaries about their experiences with discrimination from health care providers based on eight demographic factors, including race, language or accent, gender or gender identity, sexual orientation, age, culture or religion, disability, and medical history. This measure, according to CMS, would allow the agency “to capture the most actionable and impactful information about health care experiences that directly influence health outcomes and will provide CMS with additional measures for assessing health equity and fair treatment for underserved populations.”

The National Crime Victimization Survey (NCVS), administered by the Bureau of Justice Statistics within the U.S. Department of Justice, provides nationally representative data on criminal victimization, including frequency, characteristics, and consequences. Data are collected on both crimes reported to the police and crimes not reported. Demographic data is also collected from respondents along with experiences with the criminal justice system.

Questions about sexual orientation and gender identity were added to the survey in 2016. The NCVS included questions asking respondents about their sexual orientation, sex assigned at birth, gender identity, and a clarifying question used when there was a conflict between a respondent’s reported sex assigned at birth and gender identity.¹ Two additional questions were asked among those who had been victimized about whether they believed it was due to “prejudice or bigotry” relating to gender identity or sexual orientation. In support of including these measures, DOJ wrote that they were “identified in other research as subgroups of interest to key stakeholders and, correlates to victimization. For example, sexual orientation and gender identity are recognized in the 2013 reauthorized Violence Against Women Act (VAWA). Additionally, the inclusion of these items will allow researchers to better understand the relationships between these variables and experiences with criminal victimization.”

Why Were SOGI Questions Added to Federal Surveys?

The inclusion of SOGI questions to federal surveys aligned with a range of efforts by the federal government to improve data collection related to sexual orientation and gender identity. Top of Form

The move to collect SOGI data within the federal government was recommended in a National Academies of Sciences Report: Understanding the Well-Being of LGBTQI+ Populations and received support from a number of researchers and advocates. Other activities that led to wider collection of this data include:

• Support in Healthy People 2010, 2020 and 2030 to increase collection of sexual orientation and gender identity data in population surveys.
• In 2016, the Office of Management and Budget (OMB) convened a Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys “to begin addressing the dearth of data for these populations and the issues surrounding methodological issues in collecting such data.”
• In 2022, pursuant to a Biden administration executive order, the OMB released a report on the best practices for sexual orientation and gender identity data collection in federal surveys.
• In 2023, the Biden administration developed a Federal Evidence Agenda on Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex (LGBTQI+) Equity, a “roadmap for opportunities for the Federal Government to continue to build evidence and leverage data to advance equity for LGBTQI+ people.”
• Efforts within NIH to “Encourage data collection related to SGM [sexual and gender minority] populations in research and the health research workforce.” (Note the webpage for the NIH Sexual & Gender Minority Research Office hasbeen removed under the Trump Administration, likely also a part of broad efforts to align with the Executive Order discussed here).

How SOGI Data Collected in NHIS, MCBS, and NCVS Has Been Used

NHIS

The NHIS data on gender identity and sexual orientation has been used to track insurance coverage among LGBTQ people, including by KFF. Additionally, NHIS SOGI measures have allowed researchers to explore population level disparities among sexual minorities including: examining substance use and sleep problems by sexual orientation and assessing food insecurity, mental health, and health care access, as well as experiences with intersectional disparities.

MCBS

SOGI questions were added to the MCBS in 2023 and were initially released to researchers with approved data use agreements who purchased an “early release” version of the 2023 MCBS Survey File in the fall of 2024 from CMS – about 9 months before the full year of 2023 MCBS Survey File data were made available in July 2025. As such, SOGI data collected in the MCBS have not yet been widely utilized by researchers. Additionally, KFF found that the number of Medicare beneficiaries who identified as transgender in the early release file (the only file to include this data) was too small to generate a reliable estimate. Without data on gender identity in future years, researchers will be unable to pool multiple years of data to produce a more robust sample, as is sometimes done in research with LGBTQ groups in other contexts when necessitated by limited sample sizes.

NCVS

NCVS data has been used to understand the victimization experiences of teens and adults, including LGBTQ people. NCVS has been used to provide representative estimates on transgender people’s experiences specifically. Research has examined the forms of violence experienced by gender identity and sexual orientation. Experiences of victimization among LGBT people have also been examined to assess intersecting factors such as age, race/ethnicity, and relationship to the assailant, alongside comparison to non-LGBT people.

Recent Changes to SOGI Data in Federal Surveys

The Trump administration’s January 2025 Executive Order (EO) 14168 on “gender ideology” required federal agencies to “remove all statements, policies, regulations, forms, communications, or other internal and external messages that promote or otherwise inculcate gender ideology.” With these actions, the Trump administration sought to promote a view of sex as a binary biological concept and to disavow the notion of gender identity – the internal sense and experience of being male, female, transgender, non-binary or something else. Operating under this directive, the federal government undertook an effort to remove gender-identity related content from federal surveys and modify certain content related to sexual orientation and sex in early 2025.

The federal agencies responsible for administering NHIS, MCBS, and NCVS specifically cited EO 14168 in their rationale when requesting changes from the Office of Management and Budget. The changes made to these variables in NHIS, MCBS, and NCVS are as follows (see Table 1 for full question wording, changes, and sources):  

NHIS

Modifications were made to the gender identity question but not the sexual orientation question. The specific changes include:

• removing a question asking about the respondent’s gender identity
• removing the follow-up question where a respondent who selected “something else” could provide a verbatim response to describe their gender identity in their own words

MCBS

Changes were made to the series of SOGI questions, including:

• removing a question asking about the respondent’s gender identity,
• removing a question asking respondents to report their sex assigned at birth on their original birth certificate and replacing it with a question asking the respondent to report their sex (without providing additional information on how to consider the question),
• removing “something else” as a response option to a question about the respondent’s sexual orientation,
• removing the follow-up question where a respondent who selected “something else” could provide a verbatim response to describe their sexual orientation in their own words, and
• removing a question related to the respondent’s experiences with unfair or insensitive treatment from health care providers based on several demographic factors, including their sexual orientation and their gender or gender identity.

NCVS

Modifications were made to most of the gender identity questions but not the sexual orientation questions, including:

• removing a question asking about the respondent’s gender identity,
• removing a question asking respondents to report the sex assigned at birth on their original birth certificate,
• removing a question seeking clarification related to gender identity (asked when sex assigned at birth and gender identity do not align),
• temporarily pausing and then reinstating a question related to whether respondents who had been victimized believed it was due to prejudice or bigotry relating to gender identity, and
• removing training material information on the above questions.

Implications of the Survey Changes

Deleting and modifying questions related to sexual orientation and gender identity from federal surveys will leave gaps in researchers’ ability to understand and analyze the experiences of LGBTQ people, including the challenges they face and their health problems; diminish the ability of policymakers to identify and address health discrimination and equity issues for the population; and limit the information available to health care provider trying to improve care for LGBTQ people and eliminate barriers to care. Limiting data collection related to LGBTQ people and experiences with violence and victimization may also lead to challenges with addressing unmet need in that area. As LGBTQ people face persistent disparate experiences with stigma, discrimination, and victimization, as well as health (including mental health) disparities, across the lifespan, losing access to this federal data is particularly notable.

Because transgender people make up a very small share of the U.S. population overall, it may be difficult for the private and nonprofit sectors to make up for the loss of data from large federal surveys in non-governmental nationally representative surveys, which rarely have a large enough sample size to be able to pull out the experiences of this group. National surveys, with large sample sizes, had started to fill some of that gap. The challenge is especially acute when trying to understand the experiences of a segment of the transgender community. For example, given that only a small share of older adults identifies as LGBTQ and an even smaller share identify as transgender, maintaining the gender identity variable in the MCBS would have provided an opportunity to understand the experiences of a population that would otherwise be very difficult and/or very costly to sample through traditional surveys.  

The Trump administration’s rolling back of data collection related to gender identity, and to some extent sexual orientation, marks a decline in the capacity of the federal government to measure the experiences of LGBTQ people. The full implications for data users, providers, policymakers, and communities will continue to unfold, and ongoing assessment could help clarify the effects of deleted or modified SOGI measures in federal surveys.

1. Asking about both biological sex assigned at birth and gender identity provides a method for identifying people who might identify as male or female rather than as transgender, but who were assigned a different sex on their original birth certificate. This two-step approach to measuring gender identity is a recommended best practice. ↩︎

Commercial health insurance markets remain highly concentrated across coverage types. However, the individual market, which consists mostly of the ACA Marketplaces, has attracted more insurers and witnessed greater insurer competition across a variety of measures since the implementation of the enhanced premium tax credits in 2021, according to a new Healthy System Tracker analysis.

For example, from 2020 to 2023, the average market share of the largest insurer in each state’s individual market declined from 60% to 53%, corresponding with enrollment growth in the ACA Marketplaces driven by the enhanced premium tax credits. By contrast, fully insured employer-sponsored health insurance markets have become less competitive in the past decade. The analysis presents 2013-2023 enrollment and market competition data for fully insured and individual plans both nationally and on a statewide basis.

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