Health Issues

A proposed federal rule issued this week would, if finalized, bring wide-ranging changes for the Affordable Care Act’s health insurance Marketplace, including a shorter open enrollment period in all states.

The Centers for Medicare & Medicaid Services (CMS) issued the proposed rule on March 10. A final rule would modify numerous regulations affecting consumers’ access to Marketplace coverage and financial assistance.

CMS projects that the proposed rule changes will result in between 750,000 and 2 million fewer Marketplace enrollees in 2026, compared to enrollment projections under existing Marketplace rules. ^{This is separate from the reduced enrollment that was already expected in 2026 due to the expiration of the American Rescue Plan’s subsidy enhancements at the end of 2025.}

Let’s take a look at some of the rule changes that could affect consumers’ costs and access to Marketplace coverage.

Open enrollment period would be shortened in all states

CMS has proposed that open enrollment should run from Nov. 1 through Dec. 15. in all states. The dates of open enrollment have varied over the years, but have most recently been set at Nov. 1 through Jan. 15 in most states.

In the past, HHS has given state-run exchanges the option to offer longer open enrollment periods. But the new proposal calls for the December 15 end date to apply to all exchanges.

As is already the case, the open enrollment period would apply both on-exchange and off-exchange.

In the 31 states that use HealthCare.gov, more than 17.1 million people enrolled in Marketplace coverage during the open enrollment period for 2025 coverage. ^{Of those, 16.6 million had completed their enrollments by Dec. 15. So the majority of enrollees do sign up by mid-December, in time to get full-year coverage for the coming year. Only about 529,000 people enrolled via HealthCare.gov between Dec. 16, 2024 and Jan. 15, 2025, accounting for about 3% of total enrollment.}

But if open enrollment ends on Dec. 15, absent a special enrollment period, an applicant or enrollee will no longer have an opportunity to pick a different plan after the start of the calendar year. This will make it particularly important for enrollees to pay close attention to communications they get from their plan and the Marketplace before and during open enrollment, to ensure that there are no unwelcome surprises regarding their coverage or premiums in January.

Rule would eliminate the low-income special enrollment period

For the last few years, there has been a year-round enrollment opportunity in most states in the form of a special enrollment period for people who are subsidy-eligible and have a household income that isn’t more than 150% of the federal poverty level (FPL). For a single adult in the continental United States, that’s an income of $22,590 in 2025.

The proposed rule would end this year-round enrollment opportunity. This change would apply nationwide, including in states that run their own exchanges.

Many other provisions of the proposed rule are slated to take effect for the 2026 or 2027 plan year. But the proposed rule calls for the low-income SEP to end almost immediately, on the effective date of the final rule.

In justifying the proposed rule, CMS noted that the year-round SEP for low-income enrollees was “one of the primary mechanisms” that contributed to the unauthorized enrollments that made headlines in 2024.

Rule would eliminate enrollees’ ability to auto-renew $0-premium coverage

Under current rules, if a Marketplace enrollee lets their plan auto-renew and is eligible for a subsidy that covers their entire premium, their after-subsidy premium can continue to be $0 in the coming year. (This isn’t always the case, as it also depends on how subsidy amounts change based on the cost of the second-lowest-cost Silver plan.)

Under the proposed rules, the Marketplace would have to reduce the person’s subsidy amount by $5/month, resulting in a $5/month after-subsidy premium for the enrollee. This premium would be imposed until the enrollee updates their information with the Marketplace so that an updated eligibility determination can be made.

This proposed rule would apply starting with the 2026 plan year in states that use HealthCare.gov, and starting with the 2027 plan year in states that run their own Marketplace platforms.

As a result of this proposed rule, people with fully subsidized plans who rely on auto-renewal and don’t update their Marketplace account by Dec. 15 would continue to have coverage as of January, but with an after-subsidy premium of $5/month.

(If and when the enrollee updates their eligibility with the Marketplace, they would qualify for the full amount of the subsidy based on their updated information. And if they would have qualified for a full subsidy, the $5/month could be recouped when they reconcile their premium tax credit on their tax return – as is always the case when an enrollee is owed additional premium tax credits).

CMS is also soliciting comments on whether the amount should be higher than $5, as well as whether auto-renewal should even continue to be possible for fully subsidized enrollees.

Previous analyses have found that when net premiums increase from zero to even a dollar or two per month, the result is a drop in enrollment.

Maximum out-of-pocket limits would increase for 2026 plans

Under current rules, 2026 Marketplace health plans would have maximum out-of-pocket (MOOP) limits as high as $10,150 for a single individual, and $20,300 for a family. Under the proposed rule, those limits would increase to $10,600 and $21,200, respectively.

This would also result in higher MOOPs for Silver plans with integrated cost-sharing reductions, as those values are based on reducing the standard MOOP by a set percentage.

The change would stem from a new methodology for indexing these amounts, reverting to a methodology that was briefly used under the first Trump administration.

If finalized, the MOOP for a single individual will rise from $9,200 in 2025 to $10,600 in 2026 – a 15% increase.

Rule would require additional documentation for enrollment and subsidy eligibility

HHS has proposed several rule changes that would require more documentation and verification to enroll in Marketplace coverage and qualify for financial assistance. They include:

Verification of SEP eligibility

Since 2023, the federally run Marketplace has only required pre-enrollment proof of SEP eligibility if the qualifying life event is the loss of other coverage. ^{The proposed rule would remove that limitation and allow pre-enrollment eligibility verification for any SEP.}

Further, it calls for all exchanges – including HealthCare.gov and state-run exchanges – to verify eligibility for at least 75% of new enrollees utilizing SEPs. The proposed rule notes that most exchanges would only need to require eligibility verification for their two most-used SEPs to meet this target.

Additional income verification

The new proposed rule would require more documentation to verify that some enrollees are eligible for Marketplace subsidies. If the Marketplace’s trusted data sources (IRS data, for example) indicate that an applicant’s household income is below the FPL but the person attests to an income of at least the FPL, the new proposed rule would require the Marketplace to generate a data matching inconsistency. These must be resolved ^{for the person to qualify for Marketplace subsidies.}

CMS has also proposed that if the Marketplace requests income data from the IRS and is told that it’s not available, the Marketplace cannot just rely on the applicant’s attested income. Instead, the Marketplace will need to use other trusted data sources to verify the applicant’s income, or the applicant will need to submit proof of income.

Shorter window to provide income documentation

The ACA provides applicants with a 90-day window to provide requested income verification documentation, and subsequent rules added an automatic 60-day extension, without the enrollee needing to request it. HHS has proposed removing that automatic extension.

• Allowing insurers to require people to pay past-due premiums before they can re-enroll in new coverage. This was previously required under rules that were finalized in 2017, ^{but a rule finalized in 2022 prohibited insurers from doing this.}
• Prohibiting DACA recipients from enrolling in Marketplace coverage nationwide, or receiving federal premium subsidies or cost-sharing reductions. (DACA recipients are already blocked from enrolling in Marketplace coverage in 19 states.)
• Cutting off an enrollee’s eligibility for advance premium tax credit (APTC) if they fail to reconcile the prior year’s APTC on their tax return. Current rules cut off APTC only after the person has failed to reconcile APTC for two consecutive years.
• Repealing the current auto-renewal protocol that allows the exchange to move an enrollee (who is eligible for cost-sharing reductions) from a Bronze plan to a Silver plan if one is available with the same provider network and product type, and with equal or lesser premiums after the premium subsidy is applied.
• Prohibiting individual and small group plans from covering “sex-trait modification” (gender-affirming care) as an essential health benefit (EHB). If a state mandates coverage of gender-affirming care, the state would have to defray the cost of that coverage. And if an insurer were to voluntarily cover gender-affirming care, it could not be as part of an EHB. This would ensure federal premium subsidies could not be used to offset the cost of that portion of the coverage.

Once the proposed rule is published in the Federal Register, there will be a 30-day window during which the public can submit comments, which will be taken into consideration before the rule is finalized.

Louise Norris is an individual health insurance broker who has been writing about health insurance and health reform since 2006. She has written dozens of opinions and educational pieces about the Affordable Care Act for healthinsurance.org.

Note: This piece was updated on March 14th to reflect the latest data from MedPAC.

The privatization of Medicare has been taking place without much public debate – a trend that has implications for the 68 million people covered by Medicare, health care providers, Medicare spending, and taxpayers. Since 2010, the share of Medicare beneficiaries receiving their Medicare benefits from private Medicare Advantage insurers has more than doubled (Figure 1). The Congressional Budget Office (CBO) projects nearly two-thirds of all Medicare beneficiaries will be in private plans by 2033, though data released in the early part of 2025 show enrollment growth in 2025 has been somewhat lower than CBO projected. The Trump administration has the opportunity to weigh in on the pace of growth in private Medicare Advantage enrollment and the future of traditional Medicare, which remains the source of coverage for close to half of the Medicare population.

Questions about Medicare Advantage are likely to come up at the forthcoming confirmation hearing of Dr. Mehmet Oz, President Trump’s nominee to head up the Centers for Medicare & Medicaid Services (CMS). In the past, Dr. Oz has promoted Medicare Advantage in co-authored papers, interviews and on his television show. His support for Medicare Advantage aligns with general preferences among Republicans to maximize the role of the private sector, including Medicare Advantage, over government-run public programs, such as traditional Medicare.

The growth in Medicare Advantage is due to a number of factors, but none may be greater than the appeal of potentially lower costs and extra benefits like dental coverage and debit cards, offered by Medicare Advantage plans and aggressively marketed by brokers and insurers. Insurers are required to offer extra benefits when they estimate that their costs for Medicare-covered (Part A and Part B) benefits will be lower than the maximum amount the government is willing to pay in an area. They are able to offer additional extra benefits, in part, due to a payment system that, on average, sets maximum payments well above the costs of similar people in traditional Medicare and adjusts payments for health status in a way that overestimates costs for Medicare Advantage enrollees.

According to MedPAC, an independent, non-partisan agency that advises Congress about Medicare payment, the federal government pays insurers 20% more for Medicare Advantage enrollees than it pays for similar people in traditional Medicare, at a cost of $84 billion in 2025. To put the $84 billion in context, that’s more than Medicare paid physicians under the physician fee schedule to treat traditional Medicare patients in 2024. The higher Medicare spending for Medicare Advantage enrollees results in $13 billion in higher Medicare Part B premiums paid by Medicare beneficiaries, including those who are not in Medicare Advantage.

To promote efficiencies and trim federal spending, the administration could, for example, make technical adjustments to the payment system through the annual rate notice that could have the effect of lowering payments to plans. To achieve further savings, the administration could work with Congress to adopt savings proposals, including those that have recently been advanced by the Paragon Health Institute. These include ending the quality bonus program that increases Medicare spending by nearly $12 billion a year or capping Medicare Advantage benchmarks at 100 percent of local traditional Medicare costs except in areas with low Medicare Advantage penetration. Such changes would achieve Medicare savings but could also make it less profitable for insurers and potentially slow growth or even reduce private plan enrollment.

Alternatively, the Trump administration could adopt policies to accelerate the pace of privatization, such as boosting payments to plans through the annual rate notice and adopting other policies to encourage more private plan enrollment. The administration could, for example, make it easier for insurers and brokers to market Medicare Advantage plans to attract new enrollees, by unwinding the requirement that all television ads be approved before they can be aired or easing the requirement that brokers provide certain information to beneficiaries before they can enroll them in a plan.

The administration could also advance policies to make Medicare Advantage the default enrollment option for new beneficiaries – an approach that would likely accelerate the pace of privatization, and potentially increase spending, all other things equal.

The transformation of Medicare into a marketplace of private plans raises a number of questions that are not being debated. Should the payment system for Medicare Advantage plans be modified, and if so, how and to what end? What should be the role of traditional Medicare nationwide and in rural areas, where fewer beneficiaries are enrolled in Medicare Advantage? Should traditional Medicare be strengthened, with additional benefits and an out-of-pocket cap, so beneficiaries have a meaningful choice when comparing Medicare coverage options? What more should be done to help beneficiaries understand the tradeoffs between traditional Medicare and Medicare Advantage including the potential for extra benefits and lower costs in Medicare Advantage versus challenges that may arise due to limited provider networks and prior authorization requirements?

It’s not yet clear whether the administration will promote policies that fast track the privatization of Medicare in a way that may increase federal spending, or focus more on achieving efficiencies and savings within Medicare Advantage. How this plays out will have implications for beneficiaries, health care providers and insurers, and is worthy of serious debate.

In this JAMA Health Forum column, KFF Executive Vice President Larry Levitt recalls the mid-1990s’ public backlash against Health Maintenance Organizations (commonly known as HMOs) – all of which preceded the recent outpouring of health insurance concerns – as well as how consumer protections against coverage restrictions have evolved and fallen short.

Promoting price transparency in health care is a policy approach with bi-partisan support in Congress and the public at large, and the first Trump administration finalized regulations that require group health plans and insurers to make detailed data with all their in-network payment rates available with the objective that such transparency would increase price competition and ultimately drive down health care costs.

This report documents how the vast troves of data reported in pursuit of those goals include misleading and unlikely prices, inconsistencies, and other oddities that pose significant challenges for researchers, industry and others seeking to make sense of the data.

The transparency regulations set out in significant detail the methods that payers should follow in reporting their rates, generating huge amounts of publicly available data since reporting began in 2022. The analysis, which relies on the extensive collection of this data downloaded and maintained by Turquoise Health, includes examples about each of the challenges identified and how they complicate efforts to use the data for its intended purposes.

The analysis is available through the Peterson-KFF Health System Tracker, an information hub dedicated to monitoring and assessing the performance of the U.S. health system.

Data sources used for Key Facts About Hospitals are listed below. Some figures pull from other sources, including prior KFF analyses and KFF State Health Facts, which include additional information about the data and methodology. Numbers have been rounded.

American Hospital Association (AHA) Annual Survey. Data from an annual survey of all hospitals in the United States and its associated areas. Non-federal psychiatric hospitals were defined to include psychiatric hospitals as well as hospitals that identified their hospital type as “substance use disorder” or “intellectual disabilities.”

American Medical Association (AMA) Physician Practice Benchmark Survey. As described by the AMA, the Physician Practice Benchmark Survey is a nationally representative survey of “post-residency physicians who provide at least 20 hours of patient care per week, are not employed by the federal government, and practice in one of the 50 states or [DC].”

Census Bureau delineation files. The Census Bureau delineation files map counties and county equivalents to metropolitan areas, micropolitan areas, and other regions. These files were used to group hospitals into metropolitan, micropolitan, and other areas. A metropolitan area is a county or group of counties that contains at least one urban area with a population of 50,000 or more people. A micropolitan area is a county or group of counties that contains at least one urban area with a population of at least 10,000 but less than 50,000. Urban and rural regions were defined as metropolitan and nonmetropolitan areas, respectively.

Census Bureau population estimates. We relied on annual population estimates for the 50 states and DC as of July 1 of a given year from the Census Bureau’s Population Estimates Program.

Healthcare Cost and Utilization Project (HCUP) National Inpatient Sample (NIS). The NIS is a sample that includes about 20% of all inpatient discharges from U.S. community hospitals (aside from rehabilitation and long-term care hospitals). It is nationally representative of non-federal short-term hospitals in the U.S. and is sponsored by the Agency for Healthcare Research and Quality. Primary diagnoses are grouped into clinical categories based on Clinical Classifications Software Refined (CCSR). The categories used for rankings are mutually exclusive; when a diagnosis falls under multiple clinical categories, the stay is assigned to a single category based on hierarchical guidelines.

KFF Health Care Debt Survey. The KFF Health Care Debt Survey is a nationally representative survey of U.S. adults that was conducted from February 25 through March 20, 2022.

Medical Expenditures Panel Survey (MEPS). MEPS is a nationally representative survey of the U.S. civilian non-institutionalized population that includes information about health care expenditures and sources of payment, among other things. The analysis of out-of-pocket spending relied on the MEPS Household Component (HC).

National Health Expenditures. These data are published annually by the Centers for Medicare & Medicaid Services and provide estimates of national spending on health care, by payer and by type of service.

Producer Price Index (PPI). These data come from the Bureau of Labor Statistics (BLS). As BLS notes, PPI indices measure “the average change over time in selling prices received by domestic producers of goods and services.” The health care PPIs reflect the reimbursement that providers receive for health care services. The Medicare, Medicaid, and private and other patient PPIs are mutually exclusive. The Medicare and Medicaid PPIs take account of private Medicare and Medicaid plans. The PPI may exclude supplemental payments that are paid to hospitals as a lump sum.

Quarterly Census of Wages and Employment (QCEW). These data also come from BLS. As BLS notes, the QCEW data provide a “quarterly count of employment and wages reported by employers covering more than 95 percent of U.S. jobs.” The QCEW includes workers covered by state unemployment insurance laws as well as federal workers covered by the Unemployment Compensation for Federal Employees (UCFE) program. Analyses of hospital and other employment relied on the average annual employment numbers reported by BLS. Industry subsector rankings were based on 3-digit NAICS codes. Employment for a given industry subsector and employer type were not included in totals when not disclosed by BLS.  

RAND Hospital Data. These data are a cleaned and processed version of annual cost reports that Medicare-certified hospitals are required to submit to the federal government. Cost reports include information about hospital characteristics, utilization, and finances. The RAND Hospital Data also crosswalk hospitals to health systems based on the Agency for Healthcare Research and Quality (AHRQ) Compendium of U.S. Health Systems.

For charity care analyses, missing charity care costs were recoded as $0 if the hospital reported total unreimbursed and uncompensated care costs. Hospitals were excluded if they had missing or negative operating expenses or charity care costs, outlier amounts of charity care as a percent of operating expenses (≥18.1%), or reporting periods less than or greater than one year. Cost report instructions indicate that hospitals should report amounts related to both charity care and uninsured discounts as part of their charity care costs. MedPAC has noted that current HCRIS calculations favor hospitals with higher markups, and it has recommended revisions that would put hospitals on more equal footing and reduce reported charity care costs on average.

RAND Price Transparency Study, Round 5.1. These data are based on commercial claims for employer-sponsored health insurance plan enrollees collected from participating self-insured employers and health plans as well as from all-payer claims databases (APCDs) from 12 states. Commercial-to-Medicare price ratios are based on the actual allowed amount from the claims and an estimate of the allowed amount had Medicare covered the same services. Ratios presented in key facts include facility claims for hospital inpatient and outpatient services but exclude associated professional claims (which are also available through the RAND study). Analyses of metropolitan areas exclude hospitals for which RAND did not disclose relevant data while state and national analyses include all hospitals in the RAND study.

Survey of Income and Program Participation (SIPP). SIPP is a nationally representative survey of the civilian noninstitutionalized population. Among other questions, SIPP asks individuals ages 15 and older about their medical debt. The analysis of medical debt further restricted the sample to adults ages 18 and older.

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Americans’ life expectancy is significantly lower than the average for people in other large, wealthy countries.

This analysis compares 2021 data about deaths in the U.S. and 11 other large, wealthy countries by age and cause to understand the primary drivers of the longevity gap between the U.S. and the comparable countries. It finds that the primary reasons for the gap in 2021 were chronic disease, COVID-19 and substance use disorders.

The analysis is available through the Peterson-KFF Health System Tracker, an information hub dedicated to monitoring and assessing the performance of the U.S. health system.

KFF’s January 2025 Prescription Drug Advertisements Poll looks at the public’s experiences with prescription drug advertisements. The poll measures the share of adults who report seeing such advertisements, as well as how these drug advertisements influence the care the public reports receiving from their doctor or health care provider.

Enhanced Affordable Care Act (ACA) subsidies were first made available as part of the American Rescue Plan Act in 2021 and were extended through the end of 2025 by the Inflation Reduction Act. The enhanced subsidies build on the ACA’s original tax credits by increasing the amount of premium assistance lower-income enrollees receive, and by making middle- and higher-income enrollees (with incomes over four times poverty) newly eligible for financial assistance to buy health insurance. These enhanced subsidies will expire at the end of this year unless Congress further extends them and President Trump signs it into law. In 2024, 56% of ACA Marketplace enrollees live Congressional Districts represented by Republicans and 76% of enrollees are in states won by President Trump in the 2024 election.

If the enhanced subsidies expire, monthly premium payments for the vast majority of Marketplace enrollees will increase sharply starting January 1, 2026. Among subsidized enrollees living in states that use Healthcare.gov (where data are available), premium payments would have been an average of 93% higher in 2024 without the enhanced tax credits. If these enhanced subsidies expire, the Congressional Budget Office (CBO) projects that there will be an average of 3.8 million more uninsured people each year. Unsubsidized premiums will also likely rise as healthier enrollees drop their coverage. While some state-based Marketplaces offer additional premium financial assistance for certain enrollees, the amount of and availability of these state subsidies would not be enough to fully replace the federal enhanced subsidies.

The interactive map below illustrates how much premium payments would rise without the enhanced subsidies, net of tax credits, at the congressional district level. The tool presents average net premium increases (for states that use Healthcare.gov, where data are available) and two hypothetical scenarios (in all states): one of an older couple who would lose subsidy eligibility due to their income exceeding four times poverty and another for a single individual with a $31,000 income (206% of poverty). A KFF calculator allows users to evaluate zip-code specific changes in premium payments with and without enhanced subsidies for other income and family scenarios.

Because enhanced tax credits decrease premium payments across the board for people receiving a tax credit, all subsidized Marketplace enrollees will experience increases in their monthly premium payments if the enhanced subsidies expire. However, how much each enrollee’s premium payment increases will vary widely and will depend on their family size, location, and income.

Average Increases in Premium Payments Among Subsidized ACA Enrollees

In some congressional districts, there is both a large share of the population enrolled in ACA Marketplace coverage and an expectation of very high average increases in premium payments without the enhanced tax credits. Among states that use Healthcare.gov (where average enhanced tax credit data are available), there are 39 congressional districts where at least 10% of the population is enrolled in the ACA Marketplaces and where 2024 average premium payments would have been double or more had it not been for the enhanced subsidies (Table 1). While these 39 districts are politically split (19 are represented by Democrats and 20 are represented by Republicans), these districts are mostly concentrated in a few red states. Twenty of these 39 districts are in Texas, 7 are in Florida, and 3 are in Georgia. These states are among those that have seen ACA Marketplace enrollment grow the most since the enhanced subsidies went into effect. Since 2020, ACA Marketplace enrollment has more than doubled in Florida and more than tripled in Texas and Georgia.

Increases in Premium Payments for An Older Couple on the “Subsidy Cliff”

The expiration of the enhanced premium tax credits would mean that people with incomes over four times the poverty level are no longer eligible for financial assistance. Prior to the availability of enhanced subsidies, ACA Marketplace premium assistance eligibility capped at 400% of poverty (which is $60,240 for a single person or $81,760 for a couple in 2025). If enhanced subsidies expire, Marketplace enrollees making just above 400% of poverty will encounter the “subsidy cliff” and would face the full price of a Marketplace plan. If the enhanced subsidies expire, a 60-year-old couple making $82,000 (401% of poverty) would see their premium payment for the benchmark silver plan, on average, at least double in the vast majority of congressional districts. The benchmark silver premium for a 60-year-old couple at this income would triple or more, on average, in 328 congressional districts.

Premium Increases for Lower-Income Enrollees

A 40-year-old Marketplace enrollee in the contiguous U.S. making $31,000 (206% of poverty) would see monthly premium payments in 2025 rise by $95 (a 165% increase) from $58 to $153. (Alaska and Hawaii have different poverty guidelines). Nationally, there are 75 congressional districts where at least 10% of the population is enrolled in the Marketplace. For a 40-year-old making $31,000, premium payments would at least double on average in all 75 districts. 62 of these districts are in Florida, Georgia and Texas. 38 of these 62 districts are represented by Republicans while 24 are represented by Democrats.

Under the enhanced phase out caps, Marketplace enrollees with incomes up to 150% of poverty currently pay zero (or near zero) dollars for a benchmark silver plan. Should the enhanced subsidies expire, enrollees in this income group will be on the hook for some of the cost of their premiums if they want to keep a silver plan. Before the enhanced subsidies went into effect, Marketplace enrollees at this income group paid about 2-4% of their income for a benchmark plan. A sizeable portion of the Marketplace population benefits from zero dollar premiums, with 42% of HealthCare.gov enrollees in 2024 paying nothing for Marketplace coverage (up from 14% of HealthCare.gov enrollees in 2021).

On Friday January 31, 2025, several federal government datasets went offline. The datasets taken down included some widely used, large-scale national health surveys, indices, and data dashboards that inform research, policy making, and media coverage about health care and public health. For example, several Centers for Disease Control and Prevention (CDC) surveys and datasets were offline Friday and Saturday, with messages simply saying the page “was not found.” The homepage of the United States Census displayed an error message, but data.census.gov – where many datasets can be downloaded – was functioning.

By Sunday February 2, 2025, some of the landing pages started to come back online – now with a warning message: “CDC’s website is being modified to comply with President Trump’s Executive Orders,” suggesting there could be future changes. In some cases, survey data files are back online and appear to be intact, but the survey documentation (questionnaires and codebooks), which researchers use to analyze the data files, remained offline. Some related reports also remained offline. It is not yet clear whether all the datasets and their documentation that went offline will come back or remain online, and if they do, what changes, if any, will be made. It also remains to be seen what changes may be made to future data collection efforts.

The removal or modification of these data sources appears to be in response to executive orders issued by President Trump on his first day in office outlining the administration’s perspectives and approach to sex and gender and on racial equity and diversity equity and inclusion (DEI), as well as a pause on foreign assistance. An Office of Personnel Management (OPM) memorandum on the first EO directed departments and agencies to “take down all outward facing media (websites, social media accounts, etc.) that inculcate or promote gender ideology” and “withdraw any final or pending documents, directives, orders, regulations, materials, forms, communications, statements, and plans that inculcate or promote gender ideology.” Another OPM memorandum similarly directed departments and agencies to “Take down all outward facing media (websites, social media accounts, etc.) of DEIA offices”. None of these executive orders nor the OPM memos specifically mention datasets or survey data.

Federal surveys play a key role in the health surveillance system, which helps direct initiatives to address some of the most pressing health conditions and problems facing the country. For example, one of the affected datasets is CDC’s Behavioral Risk Factor Surveillance System (BRFSS), which is one of the most widely used national health surveys and has been ongoing for about 40 years. Datafiles for all years were temporarily offline and as of this writing have been reposted, but without questionnaires or codebooks. BRFSS is described on one federal website as a source of state-level “information about health risk behaviors, preventive health practices, and health care access primarily related to chronic disease and injury.” The survey has been used for decades to inform policymakers, the media, and the public on a wide range of health topics, such as obesity rates, access to breast cancer screenings, vaccination rates, and the share of people with pre-existing conditions. With sampling in every state, BRFSS data are particularly helpful for understanding health issues in low-population states and rural areas.

In reviewing KFF’s archives of the BRFSS core questionnaire, it did not include detailed questions about sexual orientation or gender identity. However, in recent years, BRFSS offered an optional module on sexual orientation and gender identity, which was implemented in most states. This supplemental data has been used by KFF to show that adults who identify as transgender are more likely than cisgender adults to be uninsured, experience depression, and report being in poor health. At the time of this writing, the BRFSS data file is back online and appears to be intact, including the question about gender identity, though the survey documentation is not online.

Another of the datasets taken offline was CDC’s Youth Risk Behavior Survey (YRBS), which, since 1990, has tracked high school students’ behaviors that can influence health and social outcomes, like smoking, drug and alcohol use, and dietary and exercise habits. Like BRFSS, the landing page and associated materials were offline but, as of the time of this writing, have returned without questionnaires or codebooks. This survey is particularly useful because it asks questions to teenagers directly, rather than surveying their parents, who may be unable or unwilling to answer questions accurately. KFF analysis of YRBS data has shown that large shares of teenagers experience persistent sadness and hopelessness, and that teenage girls experienced a sharp rise in suicidal ideation during the pandemic. Recently, the YRBS has asked respondents about their sexual orientation and gender identity, and the data has been used to highlight substantial mental health disparities among LGBTQ+ high school students, compared to their non-LGBTQ+ peers.

Several of the other datasets taken down (at least temporarily) relate to HIV/AIDS in the U.S. as well as global health efforts around the world in low and middle-income countries, including but not limited to:

• CDC AtlasPlus: an interactive database with about 15 years of surveillance data for HIV, viral hepatitis, STD, and TB, as well as data on the social determinants of health. (Data pertaining to the Ryan White HIV/AIDS Program also remain offline as of this writing, including reports and databases.)
• PEPFAR Data Dashboards: PEPFAR, the U.S. global HIV/AIDS Program’s comprehensive, up-to-date online data portal of program budgets and expenditures by country and service category, among other variables.
• Demographic and Health Surveys (DHS) databases: an ongoing set of nationally representative household surveys with population, health, HIV, and nutrition data from more than 90 countries, data downloads.
• Foreignassitance.gov: The U.S. government’s website with all foreign assistance data by country, budget, expenditure, program, going back more than two decades and created to increase aid transparency (this website is now back online).

Other federal dashboards and indices were also offline, at least temporarily, including but not limited to: Area Health Resource Files (a resource of data on health professionals, hospitals, and economic indicators), CDC’s Social Vulnerability Index (Census-based socioeconomic data used for disaster planning, response and recovery), and the Environmental Justice Index (Census tract-level data used to identify populations facing negative environmental, social and health factors).

While not the focus of this brief, other health information intended for the public has also been removed or changed, which could have implications for access to and receipt of services and other interventions.

Between 2019 and 2022, the U.S. experienced a sharper decline and a slower rebound in life expectancy than peer countries, on average, due to increased mortality and premature death rates in the U.S. from the COVID-19 pandemic. Updated life expectancy estimates in this chart collection show that in 2023, life expectancy in the U.S. returned to pre-pandemic levels, but remains lower than that of comparable countries.

This chart collection examines how life expectancy in the U.S. compares to that of other similarly large and wealthy countries in the Organisation for Economic Co-operation and Development (OECD). The countries included in the comparison are Australia, Austria, Belgium, Canada, France, Germany, Japan, Netherlands, Sweden, Switzerland, and the United Kingdom.

The analysis is available through the Peterson-KFF Health System Tracker, an information hub dedicated to monitoring and assessing the performance of the U.S. health system.