In a new brief, KFF examines how the Comstock Act, an 1873 anti-vice law banning the mailing of obscene matter and articles, could be used by an anti-abortion presidential administration to sharply restrict the availability of abortion nationwide. 

The Biden Administration’s Department of Justice has said the Comstock Act should not be interpreted literally with respect to abortion and has not enforced it. However, a future administration opposed to abortion rights could interpret the law differently, potentially criminalizing the distribution of abortion medications and other materials used to provide abortion care throughout the county—including in states where abortion is currently legal and protected.

While the presumed Republican nominee, Donald Trump, has not spoken publicly about the Comstock Act, leading anti-abortion and conservative organizations that support Trump’s candidacy have urged its enforcement. Further, in the recent oral arguments at the Supreme Court regarding the FDA’s regulation of mifepristone, two of the Justices signaled their support for the enforcement of the 150-year-old anti-obscenity law.

Some members of Congress who support abortion rights are pushing to repeal the Comstock Act, but discussions are in the early stages and repeal is unlikely in a closely divided Congress. Abortion has emerged as a key issue in the 2024 election, and the Comstock Act may be part of the debate.

Read the brief for more information and context about these issues.

Key Takeaways

• The Comstock Act – an 1873 anti-vice law banning the mailing of obscene matter and articles used to produce abortion – could be used by a future presidential administration opposed to abortion rights to sharply restrict abortion nationwide. A literal interpretation of the Act could potentially also apply to materials used to produce all abortions, not just medication abortions; would not have exceptions; and could affect other medical care, such as miscarriage management.
• The Biden Administration’s Department of Justice has determined the Comstock Act only applies when the sender intends for the material or drug to be used for an illegal abortion, and because there are legal uses of abortion drugs in every state including to save the life of the pregnant person, there is no way to determine the intent of the sender. This interpretation, however, is not binding on future administrations.
• Anti-abortion organizations have asked federal courts to interpret the Comstock Act as a ban on the mailing and distribution of mifepristone– one of two drugs in the medication abortion regimen. While former President Trump has not publicly endorsed the enforcement of the Comstock Act, enforcement of the law has been outlined as a strategy recommended by conservative and anti-abortion leadership and may emerge as a key issue in the 2024 presidential election.
• The current law has been revised by Congress three times since it was passed, and prior efforts to remove the abortion references from the law have failed to garner sufficient legislative support. There are renewed efforts in the current Congress to repeal the law, but they face long odds given the current composition of the Congress.

Introduction

Abortion looms large in the 2024 presidential election with 1 in 8 voters saying abortion is most important to their vote. While Congress is unlikely to pass any abortion laws either protecting or restricting abortion, there is already a dormant law on the books that a future administration might seek to enforce. The Comstock Act – an 1873 anti-vice law banning the mailing and receiving of obscene matter, as well as articles used to produce abortions – could be used to sharply restrict abortion nationwide. In the aftermath of the Supreme Court’s Dobbs decision, anti-abortion activists have argued in federal court that the Comstock Act prohibits the mailing of the medication abortion pill, mifepristone, directly to patients, as well as the general distribution of the medication to physicians, hospitals, and pharmacies. A handful of cities and counties have passed local ordinances requiring their residents to comply with Comstock, making it unlawful to mail and/or receive abortion medications and “abortion related paraphernalia.” A literal interpretation of the 1873 law would have a far-reaching impact on the availability of abortion nationwide.

The Biden Administration’s Department of Justice (DOJ) maintains that this law should not be interpreted literally and therefore has not enforced it. However, the DOJ of an administration that is hostile to abortion, as is the presumed Republican candidate Donald Trump, may interpret the Comstock Act differently and choose to prosecute those who send or receive materials distributed for abortion care. In the recent oral argument for a case involving the FDA’s approval and regulation of the abortion drug mifepristone, Justices Alito and Thomas signaled that they would likely uphold the enforcement of the Comstock Act inviting future attention by the Courts. 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.

What Are the Origins of the Comstock Act?

In 1873 – at the behest of anti-vice crusader, Anthony Comstock – Congress enacted a law banning the interstate mailing and receiving of “obscene, lewd, or lascivious” writings, or “any article or thing designed or intended for the prevention of conception or procuring an abortion.” In 1909, Congress enacted a similar law banning the use of express company or common carrier (such as FedEx or UPS) to mail “any drug, medicine, article, or thing designed, adapted, or intended for preventing conception or producing abortion, or for any indecent or immoral use.” These laws came to be known collectively as the Comstock Act. The scope of what constituted obscene or lewd material was far broader at the time, and in the late 1800s and early 1900s, the Comstock Act was used to prosecute a wide array of violations. These ranged from intent to mail magazines that detailed birth control methods, to the mailing of condoms and medical textbooks with illustrations of human anatomy, and even the mailing of letters discussing dating among unmarried people.

Over the last century, the application and enforcement of the Comstock Act has changed drastically and it has not been applied to the mailing of abortion materials in the last fifty years. In the 1930s, federal appeals courts ruled that the Act did not apply to the mailing of contraceptive materials if their intended use was not illegal. Federal court rulings throughout the years also limited the reach of the obscenity provisions. In 1930, a federal appeals court ruled that sex education materials did not inherently violate the Comstock Act and two Supreme Court rulings – one from 1957 and another from 1971 – narrowed the scope of material that is considered obscene, limiting the reach of the Act.

Congress has only amended the U.S. Code in a way that meaningfully affects these sections few times over the years. Following the landmark Supreme Court ruling in Griswold v. Connecticut (1965), Congress removed the references to contraception from the Comstock laws in 1971. In 1996, Section 1462 was extended to prohibit the sending of obscene materials through the internet. That same year – and in three subsequent years (1997, 1999, and 2001) – lawmakers introduced bills to remove the abortion language from the Comstock Act, but these proposed laws never made it out of committee or received a floor vote.

Although the reach of the Comstock Act has been severely limited since its enactment, most of the original act remains in the United States Code as Sections 1461 and 1462 of Title 18. Section 1461 declares as nonmailable matter:

“Every article or thing designed, adapted, or intended for producing abortion, or for any indecent or immoral use; and

Every article, instrument, substance, drug, medicine, or thing which is advertised or described in a manner calculated to lead another to use or apply it for producing abortion, or any indecent or immoral purpose . . .”

Section 1462 prohibits express companies or other common carriers from sending “any drug, medicine, article or thing designed, adapted, or intended for producing abortion.”

How Has the Biden Administration Approached Enforcement Post-Dobbs?

Although violations of most federal crimes are under the purview of the Department of Justice and its agencies, the U.S. Postal Service (USPS) also has partial authority to enforce the law. Due to its involvement in enforcing the Act, after the Supreme Court released its opinion in Dobbs, the General Counsel of the USPS asked the DOJ to address whether the Comstock Act criminalizes the mailing of mifepristone, one of the two medications used in the medication abortion regimen.

In response, the DOJ released a slip opinion, concluding that 18 U.S.C. § §1461 and 1462 – the Comstock Act – “does not prohibit the mailing, or delivery or receipt by mail, of mifepristone or misoprostol where the sender lacks the intent that the recipient of the drugs will use them unlawfully.” In support of its opinion, the DOJ cites federal appeals courts’ decisions from 1930s cases regarding the mailing of condoms and other articles that may be used as contraceptives, and information about contraceptives. In these cases, the courts held that these items had legal uses under state law and the mailing of these items is not illegal if the sender does not intend for them to be used unlawfully.

Additionally, the DOJ notes that because this more limited construction of the Comstock Act came long before the Supreme Court’s decisions in Griswold (1965) and Roe (1973) – the latter of which recognized a constitutional right to abortion – it is not dependent on the Court’s “recognition of constitutional rights regarding the prevention or termination of pregnancy.” In other words, the Court’s reversal of Roe does not change the applicability of Comstock, because appeals courts had been interpreting it in a much more limited fashion before the Court recognized a right to abortion.

Anti-Abortion Advocates’ Recent Reliance on the Comstock Act to Attempt to Limit Access to Abortion

Alliance for Hippocratic Medicine v. FDA

Among other claims they make about FDA’s approval of mifepristone, plaintiffs in this case argue that the FDA violated the Comstock Act when it approved the medication and its distribution, and when it modified the rules to prescribe and dispense, removing the in-person dispensing requirement and allowing mifepristone to be mailed directly to patients. Danco – the manufacturer of Mifeprex, the original brand of mifepristone that was approved in 2000 – and the FDA argues that the Biden DOJ’s interpretation of Comstock is correct, and that the mailing of mifepristone is not illegal if the sender did not intend for the medication to be used illegally. Neither the District Court for the Northern District of Texas, where this case originated, nor the Fifth Circuit Court, ruled on the Comstock arguments in the case. The Supreme Court heard oral arguments on March 26, 2024, and while it seems the court may hold that the plaintiff doctors and organizations do not have legal standing, Justices Alito and Thomas raised questions about the applicability of the Comstock Act. Justice Alito asked Solicitor General Prelogar, representing the FDA, why the FDA had not contended with the law in its decisions on expanding access to mifepristone through the mail. “This is a prominent provision. It’s not some obscure subsection of a complicated, obscure law,” Justice Alito said. “Everybody in this field knew about it.” Justice Thomas asked the lawyer representing Danco, the manufacturer, how she responds to an argument that mailing mifepristone and advertising it would violate the Comstock Act. These Justices seemed to be signaling that they would uphold enforcement of the Comstock Act if a future administration prosecutes the distribution and mailing of mifepristone and a challenge is brought to the Supreme Court.

2023 REMS and Letter from Attorneys General about Mailing Mifepristone

After the 2023 change to the Mifepristone Risk Evaluation Mitigation Strategies (REMS), which allowed certified pharmacies to dispense Mifepristone, and the subsequent announcements from Walgreens and CVS that they would dispense the medication through their pharmacies in states where abortion is legal, the Attorneys General from 20 different states sent a letter to Walgreens and CVS executives stating that federal law – through the Comstock Act – criminalizes the mailing of medication abortion. Federal crimes are under the purview of the federal government through its law enforcement agencies. Despite this, the letter from the Attorneys General argues that they have the ability to enforce the Comstock Act. In making this argument, they rely on the Racketeer Influenced and Corrupt Organizations Act (RICO). RICO’s definition for racketeering activity includes a reference to the obscenity provisions of 18 U.S.C. §§1461-1465 – the section of the U.S. Code that contains the Comstock Act. RICO itself contains civil remedies, which allow persons injured in their business or property by a violation of the Act to sue in federal district court. The Attorneys General argue that this civil remedy provision in the law would allow them to bring a civil action against anyone who violates their interpretation of the Comstock Act.

The Comstock Act has never been used to prosecute someone for mailing or distributing mifepristone. Further, it does not appear that the provisions that pertain to abortion in the Comstock Act are applicable under RICO, since RICO’s definition of racketeering specifically refers to the “obscene matter” provisions of the Comstock Act. And, the civil remedies are for persons injured by a violation of RICO, but it is unclear how the mailing of mifepristone would injure the business or property of a state. Still, this letter got considerable media attention. Walgreens and CVS have now begun to stock mifepristone in a handful of states and have indicated that they plan to expand to other states where it is permissible. This effectively limits the availability of the drug to states where abortion is not banned and where there is no state law limiting the dispensing of the drug in a pharmacy setting.

City and County Ordinances

Since November 2022, five cities – one in Illinois and four in New Mexico – and three counties – all in New Mexico – have passed ordinances requiring their residents to comply with 18 U.S.C. § § 1461 and 1462, which they are interpreting as criminalizing the shipping and/or receiving of abortion medications and “abortion related paraphernalia.” These ordinances are unlike older ordinances banning abortion within city or county limits, because they purport to enforce federal law and, thus, per their defenders, take precedence over state law protecting the right to abortion.

The Heritage Foundation Project 2025

The Heritage Foundation, a conservative think tank, has released its vision for 2025, Mandate for Leadership, which “represents the work of more than 350 leading conservatives and outlines a vision of conservative success at each federal agency during the next administration.” This blueprint includes a “Campaign to Enforce the Criminal Prohibitions in 18 U.S.C.  §§ 1461 and 1462 [The Comstock Act] Against Provider and Distributors of Abortion Pills that Use the Mail.”

Could the Comstock Act Be Used to Restrict Abortion Access Nationally?

A future administration that is hostile to abortion rights may interpret the Comstock Act differently than the Biden Administration and could choose to prosecute those who send or receive materials used to cause abortions. Although many of the arguments presented by anti-abortion advocates focus on the mailing and distribution of mifepristone, a literal interpretation of the Comstock Act would implicate more than just this medication. It could also bar the distribution of misoprostol – the other drug used in the medication abortion regimen – and materials used in procedural abortions, such as dilators and suction catheters, and even gloves and speculums. This broad interpretation could also affect the distribution of medications that jeopardize pregnancies, even when they have other uses, such as methotrexate. A literal interpretation of the Comstock Act would criminalize sending and receiving shipments of any materials necessary to provide any kind of abortion care without exceptions, although it would be practically impossible to enforce.

An interpretation of the Comstock Act that bans the distribution of abortion medications and medical tools would also carry heavy implications for miscarriage management and other obstetric and gynecologic care, limiting clinicians’ ability to manage these conditions and thus pose additional threats to the health of pregnant people. Medical treatment for miscarriage management is often the same as abortion care, and the same kinds of materials that are used to provide abortion are also used to provide other obstetric and gynecologic care. A literal reading of the Comstock Act would criminalize the mailing of materials that can be used to provide abortion care without differentiating or accounting for whether these materials will be – or are intended to be – used to provide abortions. This means that if a medication, article, or material can be used to provide abortion care, mailing it will be illegal regardless of the intent of the sender or the recipient.

Since a literal application of the Comstock Act would have adverse effects on medical care well beyond abortion or pregnancy, and be nearly impossible to enforce, a future administration hostile to abortion may opt to enforce the Comstock Act selectively. The Project 2025 conservatives have proposed that the next DOJ enforce the Comstock Act by criminalizing the distribution of mifepristone or misoprostol or targeting enforcement on the distributors of abortion-related materials and abortion providers, with impacts in every state.

Alternatively, a future administration could take an even more limited approach to restrict distribution and focus on the FDA’s actions. Even if the Supreme Court were to dismiss the challenges to FDA’s rules allowing for mifepristone to be mailed directly to patients, an anti-abortion administration may try to revoke this FDA policy and once again only permit doctors to dispense the drugs in-person to patients, citing it is a violation of the Comstock Act to mail the drug. Recent data suggests that 16% of abortions are medication abortions provided via telehealth where the drugs are mailed directly to patients following a telehealth consultation.

On the Horizon

Abortion has emerged as a key issue in the 2024 presidential election, just as it has been in key state races since the Supreme Court overturned Roe v. Wade. The Biden Administration’s DOJ’s opinion on the Comstock Act is not binding on future administrations. There is currently interest among abortion rights legislators in Congress to repeal the Comstock Act, but discussions are in the early stages and repeal is unlikely in a closely divided Congress. Unless the U.S. Supreme Court rules definitively on the applicability of the Comstock Act as it pertains to mailing materials used for abortions – or Congress amends the U.S. Code – a subsequent DOJ may interpret the law differently and seek to prosecute violations. While former President Donald Trump indicated that he supports allowing states to make the decisions about abortion availability, his campaign has not issued any statements pertaining to the Comstock Act or its enforcement. However, leading anti-abortion and conservative organizations that support Trump’s candidacy have endorsed enforcement of the Comstock Act, also referred to as 18 U.S.C. §§1461 and 1462, in their blueprint for the 2025 presidential transition. While all eyes were on the Supreme Court before the Dobbs decision, the next president could take administrative actions to limit abortion access throughout the country, including in states where abortion is currently legal and protected.

Employer- and union-sponsored retiree health benefits have served as an important source of supplemental coverage for people on Medicare. Retiree health plans have helped fill the gaps in Medicare’s benefit design by filling in some or all of Medicare’s deductibles and cost-sharing requirements and offering benefits that are not covered by traditional Medicare, such as dental and vision and a cap on out-of-pocket spending.

For the past 25 years, KFF has tracked trends in employer-sponsored coverage, including retiree health benefits. KFF’s 2023 employer survey shows a drop in the share of large employers (with 200 or more employees) offering health benefits to their retirees from 29% in 2020 to 21% in 2023, down from 66% in 1988. Among large employers that still offer retiree health benefits to Medicare-age retirees, KFF’s survey reveals a substantial rise in the share doing so through Medicare Advantage plans in recent years. Today, about 5 million Medicare-age retirees get their Medicare and supplemental retiree benefits from a group Medicare Advantage plan, according to KFF’s separate analysis of Medicare Advantage enrollment data.

This data note analyzes five national surveys to assess trends in retiree health coverage among people ages 65 and older (Figure 1). These five surveys produce somewhat different estimates of retiree health coverage, but together paint a clear picture: the share of Medicare-age adults with employer- or union-sponsored retiree health coverage has been shrinking and appears to be on the way to extinction.

Estimates of the share of people ages 65 and older with retiree health benefits in 2022 vary across the five surveys, ranging from 21% (American Community Survey) to 12% (National Health Interview Survey). These differences are likely due to variations in sample size, differences in question wording, skip patterns and sample population (See Methods). As with the estimates for 2022, the trend lines also vary. For example, the American Community Survey shows the share declining from 31% in 2008, while the National Health Interview Survey shows the share declining from 22% in 2008 that year.

Retiree health benefits appear to be heading toward extinction for a number of reasons. The rise in health care costs has put pressure on employers to make tradeoffs between providing benefits to active workers versus retirees, accelerating this trend. Union membership has steadily declined over the past few decades, easing the pressure on employers to provide retiree benefits. And the demand for retiree benefits may be less intense than it once was because Medicare benefits have improved somewhat over the years, with the prescription drug benefit that was added in 2006 and the offer of some extra benefits for beneficiaries who choose to enroll in a Medicare Advantage plan.

The erosion of retiree health coverage, given the high cost of health care and the modest incomes and assets of a large share of the Medicare population, heightens the importance of Medicare coverage decisions for retiring boomers and their spouses, and the importance of addressing the challenges facing Medicare’s future. Across each of these national surveys, retiree benefits seem to be going, going and may soon be gone.

Methods

This data note is based on an analysis of five national surveys. The analysis of the Current Population Survey cannot be trended to years prior to 2013 due to improvements made by the U.S. Census Bureau to the Health Insurance Questionnaire of the Current Population Survey between 2012 and 2013. This analysis does not include data from the Medicare Current Beneficiary Survey due to methodological changes that are likely to impact coverage assignment and trends.

Differences reported in the paper and in the figure denote statistical significance at the 5% level relative to 2022, except for SIPP, HRS, and the pre-redesigned CPS segment (starting in 2005), which are relative to 2021, 2020, and 2012, respectively. The numbers displayed show the percent of retired people ages 65 and older who are holding employer-sponsored insurance (ESI) from any source, except for those in the ACS, which depicts the percent of people ages 65 and older not in the labor force who are holding ESI from any source.

All surveys provide annual estimates, except for SIPP, which provides data monthly; all depicted SIPP data are from September of the given year. HRS data are provided every two years (even-numbered years).

Nearly a quarter (23%) of adults who say they were disenrolled from Medicaid since early 2023 report being uninsured now, finds a new KFF national survey examining how the unwinding affected enrollees. 

Overall, 19% of adults who had Medicaid prior to the start of unwinding say they were disenrolled at some point in the past year. Of this group, a large majority (70%) were left at least temporarily uninsured, while 30% already had another form of health coverage in place.

About half (47%) of those disenrolled say they subsequently re-enrolled in Medicaid, and more than a quarter (28%) now have another form of coverage—either through an employer, Medicare, the Affordable Care Act’s marketplace or health care for members of the military.

The survey examines adults who had Medicaid coverage in early 2023, just before states resumed eligibility checks and disenrollments after pandemic-era protections ended. Medicaid enrollees can be disenrolled for several reasons, including because they are no longer eligible or because they did not complete the renewal process due to paperwork issues, a late submission or other reasons.

About a third (35%) who tried to renew their coverage describe the process as difficult, and nearly half (48%) describe it as at least somewhat stressful. A majority (56%) of those disenrolled say they skipped or delayed care or prescriptions while attempting to renew their Medicaid coverage.

Among all adults who had Medicaid prior to the start of the unwinding, the vast majority (83%) retained their coverage or re-enrolled, while 8% are now uninsured and another 8% have other health insurance. The share who are now uninsured is larger in states that have not expanded Medicaid (17%) than in states that have (6%).

Across the United States, about 1 in 3 Medicaid enrollees have not yet completed their renewal process. KFF analysis shows considerable variation by state policies, which could affect the percent who have retained Medicaid, found other coverage or been left uninsured by the end of the unwinding.

Other findings from the survey include:

• At least three-quarters of those enrollees who now have other insurance or are uninsured say they are worried about affording the cost of health care services (76% and 78%, respectively), while fewer than half (47%) of enrollees who still have Medicaid express this concern. Among those who are now uninsured, more than half (54%) have not gotten another form of health insurance because of the cost.
• Two-thirds (64%) of adults who had Medicaid coverage prior to the start of unwinding took action to renew it. Among those who tried to re-enroll, 58% experienced at least one problem during the process, most commonly long phone wait times (44%).
• About 3 in 10 say gathering and submitting documents (29%) and figuring out what documents were needed to complete enrollment (28%) were very or somewhat difficult.
• Adults living in states that have not expanded Medicaid are more likely than those in expansion states to say they were asked to provide proof of residency when renewing their coverage.
• About a quarter (28%) of enrollees got help with their Medicaid renewal process during the unwinding, while an additional 17% wanted assistance but did not get it.
• About three-quarters (77%) of adults who were enrolled prior to the start of unwinding rate their experience with Medicaid as “excellent” (34%) or “good” (43%). About one in four give Medicaid a negative rating of either “fair” (19%) or “poor” (4%).

About the Medicaid Unwinding and KFF’s Survey

During the COVID-19 pandemic, states kept people continuously enrolled in Medicaid in exchange for enhanced federal funding. With the end of continuous enrollment on March 31, 2023, states are required to complete an eligibility renewal for all Medicaid and CHIP enrollees—a process commonly referred to as “unwinding.” KFF tracking shows that 20.1 million people (21%) have been disenrolled from Medicaid and 43.6 million people (46%) have had their coverage renewed since the unwinding began.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted between February 15 and March 11, 2024, online and by telephone, among a representative sample of 1,227 U.S. adults who had Medicaid coverage in early 2023—prior to the start of unwinding on April 1st. Interviews were conducted in English and in Spanish. The margin of sampling error is plus or minus 4 percentage points. The report describes U.S. adults’ experiences with Medicaid renewals, disenrollments and coverage transitions or losses during the unwinding.

Black immigrants are a growing share of the country’s population and make up 8% of all immigrants. Nearly half (47%) of Black immigrants in the U.S. are from the Caribbean, while about four in ten (43%) are from sub-Saharan Africa, with smaller shares coming from South America and Europe (3% from both regions). Most Black immigrants are U.S. citizens (68%), while one in five (21%) has a valid visa or green card and about one in ten (8%) is likely undocumented. Like immigrants overall, Black immigrants come to the U.S. seeking more opportunities for themselves and their children, and most report improved educational opportunities, employment, and financial situations as a result of moving to the U.S. However, Black immigrants report disproportionate levels of unfair treatment and discrimination in their workplaces, communities, and when seeking health care, reflecting the intersectional impacts of racism and anti-immigrant sentiment. Below are five key facts about their experiences, drawing on the 2023 KFF/LA Times Survey of Immigrants, with its sample size of 3,358 immigrant adults (18 and older), including 274 Black immigrant adults.

Three in four (76%) Black immigrants are working, and most say their situations are improved as a result of coming to the U.S.

Like immigrants overall, the primary reasons Black immigrants say they came to the U.S. are for better economic and job opportunities (87%), better educational opportunities (81%), and a better future for their children (80%), and most say that moving to the U.S. has made them better off in terms of educational opportunities for themselves and their children (85%), their financial situation (74%), and their employment situation (74%). About two thirds (65%) also say they are better off in terms of their safety (Figure 1).

Black immigrants face disproportionate financial challenges, including in paying for health care.

About four in ten (44%) Black immigrants have lower incomes (household income less than $40,000 per year), reflecting that most employed Black immigrants are working for hourly pay (69%). Reflecting these lower incomes, half (50%) of Black immigrants say they or someone in their household had trouble paying for at least one basic necessity in the past 12 months, including rent/mortgage, food, health, health care, or utilities or other bills, about twice the share of White (27%) and Asian immigrants (20%) who say the same (Figure 2). Specifically, three in ten (30%) Black immigrants report that their household had problems paying for health care in the past 12 months compared to about one in six White immigrants (17%) and about one in eight Asian immigrants (12%).

Most (56%) employed Black immigrants say they have faced at least one form of discrimination or unfair treatment at work asked about in the survey.

A majority of employed Black immigrants (56%) report experiencing at least one type of discrimination or form of unfair treatment at work, similar to the share of employed Hispanic immigrants who report this (55%), and higher than the shares of employed Asian (44%) and White immigrants (31%) who report the same. Among employed Black immigrants, about half (47%) say they were given fewer opportunities for promotions or raises than people born in the U.S., three in ten (31%) say they were paid less than people born in the U.S. for doing the same job, a quarter (25%) say that they had worse shifts or less control over their work hours or than people born in the U.S., and about one in five say they were not paid for all of the hours that they worked or not given overtime pay (22%) or were harassed or threatened by someone at their place of work because they were an immigrant (22%) (Figure 3). Beyond experiences with mistreatment, about one in three (34%) Black immigrants with less than a college education say they are overqualified for their job, saying that they have more skills and education than the job requires, with this share rising to about half (53%) of those with a college degree or higher.

Black immigrants report disproportionate levels of unfair treatment in social and police interactions.

Most (55%) Black immigrants say they have experienced worse treatment than people born in the U.S. in at least one of the following places: a store or restaurant, in interactions with the police, or when buying or renting a home, higher than the shares who report this among Hispanic (42%), Asian (36%), or White immigrants (22%). Specifically, about four in ten (38%) Black immigrants report experiencing worse treatment in police interactions, about a third (35%) report this in a store or restaurant, and about a quarter (26%) report worse treatment when buying or renting a home (Figure 4). Moreover, roughly one in three (34%) Black immigrants say they have been criticized for speaking a language other than English, and about four in ten (45%) say they have been told they should “go back to where you came from,” higher than the share of Hispanic (34%), Asian (32%), or White (25%) immigrants who report this experience.

Among those who have received health care in the U.S., Black immigrants are more likely than other immigrant groups to report being treated unfairly by a health care provider.

About four in ten (38%) Black immigrants who have received or tried to receive health care in the U.S. report being treated differently or unfairly by a health care provider, higher than the shares of Hispanic (28%), Asian (21%), and White immigrants (18%) who say this. The share of Black immigrants who report unfair treatment by a health care provider includes about a quarter (25%) who say they were treated unfairly because of their race, ethnic background, or skin color, 23% who say they were mistreated because of their health insurance or ability to pay, and about one in six (16%) who say that they were treated differently due to their accent or ability to speak English (Figure 5).

This analysis was updated on May 22, 2024 to clarify the description of the data gaps that remain with respect to spending on supplemental benefits.The Centers for Medicare and Medicaid Services (CMS) has recently taken actions to increase transparency in Medicare Advantage, the private plan alternative to traditional Medicare that now provides Medicare coverage to more than half of all eligible Medicare beneficiaries. In particular, the agency has clarified and expanded reporting requirements for Medicare Advantage insurers pertaining to use of supplemental benefits that may be available to researchers and others upon request within a few years. In addition, CMS is requiring Medicare Advantage insurers to post summary data on the timeliness and use of prior authorization on their own websites beginning in 2026.

Payments to Medicare Advantage insurers are both higher and growing faster than spending in traditional Medicare. In 2024, MedPAC estimates that the Medicare program will spend 22% more per Medicare Advantage enrollee ($83 billion) than for similar beneficiaries in traditional Medicare. Despite the higher payments, researchers have found few differences between Medicare Advantage and traditional Medicare in beneficiary experience, affordability, service utilization, and quality. Additionally, though recent CMS actions aim to increase transparency in Medicare Advantage, substantial data gaps remain that limit the ability of policymakers and researchers to conduct oversight and assess the program’s performance, and for Medicare beneficiaries to compare Medicare Advantage plans offered in their area. For example, Medicare Advantage insurers are not required to report prior authorization requests, denials, and appeals by type of service, for specific plans within a contract, or reasons for prior authorization denials. They are also not required to report to CMS complete information on denied claims for inpatient, physician and other services already delivered to enrollees. Other information is collected by CMS, but not published, including out-of-pocket spending by Medicare Advantage enrollees, and the characteristics of enrollees who switch Medicare Advantage plans or disenroll to get coverage under traditional Medicare. Some of this information would also be useful to Medicare beneficiaries when choosing among the large number of plans offered in their area. CMS recently put out a Request for Information (RFI) seeking input on additional Medicare Advantage data that could further improve program oversight and beneficiary decision making.

In this brief, we describe new CMS data reporting requirements and identify remaining gaps (Table 1). We also discuss the implications for program oversight and beneficiary decision making and provide illustrative questions that cannot be answered because of the lack of data. In general, the data gaps described below apply to all types of Medicare Advantage plans, including those available for individual enrollment, special needs plans (SNPs), and group plans sponsored by employers and unions.

New Data Reporting Requirements

CMS is now collecting additional data on use and spending of supplemental benefits, such as dental, vision, and hearing.

The vast majority of Medicare Advantage enrollees are in plans that offer some coverage of dental, vision and hearing services, as well as other supplemental benefits that are not otherwise covered under traditional Medicare. While KFF’s prior work documents substantial variation in the scope and generosity of supplemental benefits offered, historically, there has been no information available to describe how many enrollees actually use these benefits, the specific items or services they receive, or associated out-of-pocket spending. Further, there has been no information to assess whether use and spending varies across subgroups of beneficiaries.

In recent years, per enrollee Medicare payments to Medicare Advantage insurers that pay for these benefits have increased rapidly. In the last five years, these payments, also referred to as rebates, have more than doubled, rising from $1,140 per enrollee in 2018 to over $2,300 per enrollee in 2024. To assist in answering questions about how these benefits are being used, CMS has taken several actions.

First, CMS recently reinstated detailed medical loss ratio reporting requirements and is also now requiring spending data for specific categories of supplemental benefits to be reported, beginning with the 2023 plan year. This additional information will be useful in understanding spending by Medicare Advantage plans on specific categories of extra benefits. However, since the data are reported at the contract level, it will not be possible to examine how spending varies across plans that offer different combinations of extra benefits.

Second, CMS issued new requirements for more data collection related to supplemental benefits for plan year 2024. These data include: the unit of utilization used by the plan when measuring utilization (e.g., admissions, visits, procedures, trips, purchases); the number of enrollees eligible for the benefit; the number of enrollees who used the benefit at least once as well as total instances of utilization; the total net amount incurred by the plan to offer the benefit; and the total out-of-pocket-cost per utilization for enrollees. CMS also published a memo in February 2024 describing system changes and supplemental instructions to assist plans in reporting data on the use of supplemental benefits to the Medicare Advantage Encounter Data System.

This descriptive information will make it possible in the future to assess the extent to which these benefits are being used by Medicare Advantage enrollees, and whether use of supplemental benefits varies by beneficiary characteristics (e.g., race/ethnicity or health status), plan type (e.g., SNPs, group plans or individually sold plans), or region. This data may also be used to assess whether supplemental benefits are helping to address health disparities by filling specific social or medical needs, such as transportation, and whether the benefits are being targeted to those with the greatest needs. Some analysis of out-of-pocket spending may also be feasible. Though CMS will have some of this information available as early as 2025, it is not clear when the data will be available to researchers and other interested parties.

Despite the new requirements, data gaps will remain. For example, it will be difficult to determine the total out-of-pocket spending for certain categories of extra benefits, such as dental coverage, since it will not be possible to determine what combination of reported services (i.e., dental exams, cleanings, x-rays, etc) enrollees used in a given year. Additionally, for other categories of extra benefits (i.e., over-the-counter allowances) it will not be possible to determine how spending varies across the range of items or services covered by the plan, since only aggregate spending by category of extra benefit, rather than detailed spending data for different types of transactions will be available.

Questions about supplemental benefits that cannot be answered with new reporting requirements because data are not reported or published:

• How much do Medicare Advantage enrollees spend each year out-of-pocket on extra benefits?
• Do insurers deny claims for certain types of extra benefits more than others?
• How often are requests for prior authorization for services covered as a supplemental benefit denied?

Medicare Advantage insurers will be required to publish some data on the timeliness of prior authorization decisions and use of prior authorization.

Health insurers use prior authorization to both contain spending and prevent enrollees from receiving unnecessary or low-value services. Virtually all Medicare Advantage enrollees are in a plan that requires prior authorization for some services. Generally, higher cost services, such as Part B drugs (e.g., chemotherapy) and inpatient hospital stays, are more likely than lower cost services to be subject to prior authorization. Even supplemental benefits, such as hearing tests and transportation, are often subject to prior authorization requirements.

A prior KFF analysis found that over 35 million prior authorization requests were submitted to Medicare Advantage insurers in 2021, with over 2 million of those requests fully or partially denied. Just 11% of denials were appealed, though 82% of those appeals were at least in part successful.

CMS recently finalized three rules with provisions pertaining to the use of prior authorization – one clarifying the coverage criteria Medicare Advantage plans can use when making prior authorization determinations, a second intended to improve the timeliness and transparency of prior authorization decisions, and a third that will require plans to evaluate the effect of prior authorization policies on people with certain social risk factors.

Among other changes, the second rule shortens the timeframe within which Medicare Advantage insurers are required to respond to prior authorization requests. Beginning in 2026, the rule also requires Medicare Advantage insurers to publish the average timeframe for prior authorization decisions on their websites. However, policymakers, researchers, or other parties will have to go to each insurer’s website to collect the information instead of having access to this data in a single file. Additionally, there is no requirement that Medicare Advantage insurers provide any information about how long appeals decisions take.

Further, the data that will be publicly reported will be at an “organization” level and is not required to include the length of time by type of service or for people with specific conditions. This information could be helpful in understanding variation in the average response time. For example, people with diabetes might be interested in not just knowing whether they will need annual approval of their diabetes supplies, but also how long they can expect that authorization to take based on the plan in which they enroll.

In addition to data on the timeliness of prior authorization decisions, the second rule also requires plans to post on their websites certain prior authorization information (excluding for drugs) beginning in 2026, including all items and services that require prior authorization, as well as the share of prior authorization requests that were approved, denied, and approved after appeal. It is unclear how helpful these new requirements will be for either policymakers, researchers or other parties who wish to compare these measures across plans. These new requirements duplicate information plans currently report to CMS and that has historically been made available as a public use file at the contract level, though starting with plan year 2022 data, access to these data will require a data use agreement and carry a fee.

The reporting requirements in the rule thus do not expand the information that is available, and in some ways are less useful because people who do not get access to the data from CMS will have to go to individual plan websites.

Moreover, Medicare Advantage insurers are still not required to report prior authorization requests, denials, and appeals by type of service, enrollee characteristics, or for specific plans within a contract to CMS, as described in the section below.

Questions about the timeliness of prior authorization determinations that cannot be answered because data are not reported:

• How does the response rate vary for prior authorization requests across different types of services?
• Does the timeliness of prior authorization decisions vary across plan types?
• How timely are appeal decisions?

Ongoing Data Gaps: Data not Reported to CMS

Medicare Advantage insurers are not required to report prior authorization requests, denials, and appeals by type of service, enrollee characteristics, or for specific plans within a contract to CMS.

As mentioned above, CMS is requiring Medicare Advantage insurers to post some information on the timeliness of prior authorization decisions and use of prior authorization on their websites. Even with the changes in the recent CMS rules, there are still no data to document the number of prior authorization requests, denials, and appeals by type of service. In the rule, CMS stated they were not requiring data at the service level because they “have concerns about data overload, patient understanding, and usability of the data. For example, reporting at the specialty level and service level could be overwhelming because of the volume of information presented.” It is therefore not possible to assess whether prior authorization requests for certain types of services are denied more often by some plans than others, or whether prior authorization requests tend to be denied more for some types of services than others. While the more detailed information could be overwhelming for beneficiaries, it would still be useful for policymakers engaging in oversight.

Additionally, the aggregate-level data that CMS is requiring Medicare Advantage plans to post on their websites will only be available at the contract, rather than plan level. Contracts can include multiple types of Medicare Advantage plans, sometimes combining those available for individual purchase with SNPs and employer-sponsored plans. For example, most D-SNP enrollees (81%) are in plans that are in a contract with other Medicare plan types, and most contracts include at least three plans. CMS stated in the rule that they were keeping data at the contract level because a “consistent approach of contract-level reporting in the MA program will give consumers useful information while limiting plan burden.” However, by aggregating data in this way, it is not possible to assess variations in prior authorization practices across plans within a contract, including across plans that serve different populations. For example, if CMS required Medicare Advantage insurers to report prior authorization requests and denials at the plan level, beneficiaries could compare across the plan options of the same type (e.g., plans available for individual purchase) in their county.

Insurers are also not required to report prior authorization data by demographic characteristics of Medicare Advantage enrollees, such as race/ethnicity, sex, age, or diagnosed health conditions. Without such data, it is not possible to assess whether prior authorization requirements have a disproportionate impact on certain subpopulations of enrollees, which could affect access to care, out-of-pocket costs, and health outcomes.

The lack of data about the services for which prior authorization is requested and the decisions made by plans also make it difficult to assess whether Medicare Advantage insurers are complying with CMS requirements to cover all Medicare Part A and Part B services. The Health and Human Services Office of the Inspector General (OIG) requested detailed information for a sample of denials from Medicare Advantage insurers, and found that the insurers may be using prior authorization to deny requests for services covered under traditional Medicare. While CMS recently clarified this requirement through rulemaking, without plan-level data, by type of service, it will not be possible to determine whether plans are complying.

Further, plans do not report the extent to which providers in their network may be exempt from prior authorization requirements, for example as part of “gold-carding” programs that waive requirements for providers with a history of complying with the insurer’s prior authorization policies. Medicare beneficiaries might find it helpful to consider how broadly prior authorization requirements apply across providers when choosing among plans.

Questions about the impact of prior authorization decisions that cannot be answered because data are not reported:

• For what services are prior authorization requests made most often?
• What services have the highest prior authorization denial rates?
• Are people with certain health conditions subject to more prior authorization requirements and how do denials vary by diagnoses?
• How do prior authorization request denials vary by demographic characteristics of Medicare Advantage enrollees?
• Which insurers receive the most prior authorization requests and how do denials and appeals vary across insurers and plans?
• What share of providers are exempt from prior authorization requirements, what services do they provide, and what are the characteristics of their patients?
• Are some groups of Medicare Advantage enrollees more likely to appeal prior authorization denials than others?

Medicare Advantage insurers do not report the reasons for prior authorization denials to CMS.

While Medicare Advantage insurers are required to provide enrollees and providers with an explanation when denying a prior authorization request, CMS does not collect this information. Requests may be denied because a provider did not submit the necessary documentation, because the plan has determined the service is not medically necessary, or because the plan imposes other requirements for coverage (such as trying a more basic service first). This information would be helpful in understanding the potential effect recent actions to improve the prior authorization process. For example, if most denials of prior authorization requests are because the service was not deemed medically necessary, efforts to increase transparency of the coverage criteria, such as those recently included in a final rule, may be more likely to have an impact.

Questions about the reasons for prior authorization denials that cannot be answered because data are not reported:

• What share of prior authorization denials are attributed to medical necessity compared to other reasons, such as insufficient documentation or requiring a more basic service first?
• What types of services are more likely to have prior authorization requests denied due to medical necessity?
• Do certain insurers attribute denials of prior authorization requests to medical necessity more often than others?
• Are Black Medicare Advantage enrollees more likely to have a prior authorization request denied because of medical necessity than White Medicare Advantage enrollees?
• Are Medicare Advantage enrollees with certain health conditions more likely to have a prior authorization request denied because of medical necessity than other Medicare Advantage enrollees?

Medicare Advantage insurers do not report complete data on denied claims for services that have already been delivered.

The Medicare Advantage encounter data do not have a field to definitively identify claims for which payment was denied. This contrasts with claims data for traditional Medicare. In a recent study, the Office of the Inspector General (OIG) concluded that the lack of this information makes it challenging or impossible to conduct oversight, including fraud investigations.

Medicare Advantage insurers also submit contract-level data on the number of payment requests by certain providers and whether those requests were approved or denied. These data exclude most requests for payment for services delivered by contract providers and do not include a reason for the denial, information about the type of service delivered, or the characteristics of the enrollees affected. Without this information it is not possible to determine how often Medicare Advantage insurers deny claims for services that have already been delivered, or to assess how denials vary across different dimensions.

Enhancing the Medicare Advantage encounter data and other information on payment requests submitted by Medicare Advantage insurers could help CMS and other policymakers conduct oversight. Additionally, this information may be helpful to beneficiaries who wish to assess the potential burden associated with ensuring services are paid for when choosing between plans.

Questions on payment denials that cannot be answered because data are not reported:

• How often do Medicare Advantage insurers deny payments for Medicare-covered services?
• Which types of services are most often denied after they have been delivered?
• What are the main reasons payments are denied and does that vary across plans and insurers?
• Which insurers deny claims after services have been delivered most often?
• How do denial rates vary across demographic characteristics of Medicare Advantage enrollees?
• Are payment denials more common among Medicare Advantage enrollees with certain health conditions than others?

Medicare Advantage insurers do not report benefit and cost sharing information for employer/union sponsored plans.

About 5.4 million Medicare beneficiaries are enrolled in a group Medicare Advantage plan through a former employer or union. For group plans, the employer or union contracts with a Medicare Advantage insurer and Medicare pays a fixed, risk-adjusted payment per enrollee each month. The plan must cover all services covered under Part A and Part B of Medicare and may also provide supplemental benefits.

CMS requires Medicare Advantage insurers to submit information related to benefits, including cost sharing and the value of supplemental benefits, as well as anticipated gains/losses, as part of the annual bidding process for most plans they intend to offer in an upcoming plan year. However, because employer and union sponsored group plans are exempt from bidding, CMS does not collect this information. Thus, it is not possible to assess how benefits and cost sharing compare for those enrolled in a group plan versus those enrolled in a plan that is generally available for individual purchase or a special needs plan. Additionally, analyses of margins by plan type, such as those published annually by the Medicare Payment Advisory Commission (MedPAC), cannot separately consider employer and union sponsored plans.

Medicare pays more for enrollees in Medicare Advantage plans, including group plans sponsored by employers and unions, than for traditional Medicare beneficiaries. In addition, employer plans have their payments increased more on average under the quality bonus program (QBP) than other types of plans, with total spending for group plans under the QBP totaling at least $2.5 billion in 2023. Additional data are necessary to assess the value this higher spending provides to enrollees in these plans.

Questions about employer and union retiree plan benefits that cannot be answered because data are not reported:

• What supplemental benefits are offered by employer and union sponsored plans?
• How do benefit and cost sharing requirements vary across employer and union sponsored plans?
• How does the value of common supplemental benefits, such as dental, vision, and hearing, compare between employer and union sponsored plans versus individually available or special needs plans?
• Are margins for employer and union sponsored plans similar to margins for other types of Medicare Advantage plans?

Ongoing Data Gaps: Data That are Collected by CMS, but not Made Publicly Available

CMS does not publish detailed out-of-pocket liability and other payment information submitted by Medicare Advantage plans.

Medicare beneficiaries may be drawn to Medicare Advantage because of the potential for lower out-of-pocket spending, particularly compared to traditional Medicare without a supplemental insurance policy. MedPAC estimates that 39% of rebate dollars paid to Medicare Advantage insurers, or an average of $75 per enrollee per month, go toward reducing cost sharing. Additionally, unlike traditional Medicare, Medicare Advantage plans are required to have an annual out-of-pocket limit. However, little is known about actual out-of-pocket spending by Medicare Advantage enrollees. While out-of-pocket costs are estimated for each Medicare Advantage plan’s enrollees using information in the plan benefit package, these estimates rely on utilization patterns for traditional Medicare beneficiaries and are not reconciled with actual spending by a plan’s enrollees.

CMS does require Medicare Advantage insurers to submit detailed encounter data that includes information about the services enrollees use and their diagnosed health conditions, as well as payment information. Based on a review of data submission requirements, it is unclear what information is reported, the level of detail of the payment information, or the extent to which reported data are accurate and complete. For example, it is not possible to determine how often Medicare Advantage insurers submit information about out-of-pocket liability. In addition, since providers in capitated arrangements or staff models do not receive a payment per service, information about payments to these providers for specific services is unlikely to be included in encounter data.

There is little transparency about both payments to providers and out-of-pocket liability because publicly available Medicare Advantage encounter data do not include information on either. Current regulations state that CMS may release data “subject to the aggregation of dollar amounts reported for the associated encounter to protect commercially sensitive data.” While this regulation may limit the level of detailed information CMS can release on payments to providers at the service level, it does not prohibit publishing any payment information. Further, it is not clear to what extent plans are required to report, or why CMS does not publish information on out-of-pocket liability. Plan-specific information about enrollee liability, which typically reflects out-of-pocket spending, and Medicaid spending for people dually eligible for Medicare and Medicaid, would help beneficiaries compare actual out-of-pocket liability both across plans and compared to traditional Medicare. It could additionally illuminate how cost-burdens vary across subgroups of Medicare Advantage enrollees, including those with particular health conditions, such as diabetes, heart disease, or cancer.

Medicare Advantage plans vary substantially in their cost-sharing structures. For many types of services, it is difficult to determine what enrollees are required to pay out of pocket, because cost sharing takes the form of coinsurance and the prices paid to providers are not reported. While current regulations may prevent CMS from publishing the prices Medicare Advantage insurers pay providers, CMS could provide information on the actual amounts for which enrollees were liable. This would be useful in examining the implications of the variation in cost-sharing structures.

Making available more detailed information about provider payments would inform our understanding of how Medicare Advantage insurers allocate resources across types of health care services, and how that compares to traditional Medicare. Medicare Advantage offers the promise of coordinated care that focuses on delivering high-value interventions before serious health care conditions develop. However, it is difficult to assess the extent to which plans incur expenditures, for example, for care coordination or preventive care, or whether they are more oriented toward reducing unnecessary and duplicative services.

Questions about out-of-pocket liability and other Medicare Advantage spending that cannot be answer because data are not published:

• How much spending are Medicare Advantage enrollees liable for across specific services, such as skilled nursing facility stays, MRIs, or chemotherapy?
• Does average out-of-pocket liability vary across plans or insurers?
• Do dual-eligible beneficiaries in special needs plans (SNPs) have higher or lower out-of-pocket liability than dual-eligible beneficiaries in non-SNPs? How does this vary across states and what might be the impact on state Medicaid spending?
• What share of Medicare Advantage enrollees reach their annual out-of-pocket limit each year?
• Do Medicare Advantage plans typically pay more, less or about the same as traditional Medicare for various services?
• How does spending by Medicare Advantage insurers on preventive services compare to traditional Medicare spending on these same services?

CMS does not publish the names of employers/unions that receive Medicare payments to provide Medicare Advantage group plans to retirees.

Employers are increasingly turning to Medicare Advantage to provide retiree health coverage. Often, retirees have no choice but to receive their retiree health benefits through a Medicare Advantage plan. If they are unhappy with the plan, they could opt for different coverage, but would have to give up their benefits, the value of which was arguably part of their compensation while working.

CMS collects the name and address of the employers who provide retiree coverage through Medicare Advantage plans, but does not publish it because it considers this information to be proprietary. Combined with the lack of information about plan benefits and cost sharing, not having information on which employers are offering retiree benefits through a Medicare Advantage plan makes it difficult to assess the implications for affected beneficiaries.

Questions about sponsors of employer and union retiree plans that cannot be answered because data are not published:

• What industries use Medicare Advantage to provide retiree health coverage most often?
• How do rebates, which fund supplemental benefits, vary across types of employers, including state and local governments?
• How is spending under the quality bonus program distributed across different types of employers?

CMS does not include characteristics of people who disenrolled from Medicare Advantage in published disenrollment data.

A relatively small share of beneficiaries in Medicare Advantage disenroll from their Medicare Advantage plan and switch to traditional Medicare, though the rates are higher for some groups, including people dually eligible for Medicare and Medicaid and those in their last year of life. Somewhat larger shares of Medicare Advantage enrollees do disenroll from their plan and switch to another Medicare Advantage plan. While there is a contract-level composite measures for reasons for disenrollment, the data do not include characteristics of people who disenrolled. Adding information about the race/ethnicity, age, dual status, and long-term care facility residence could help promote health equity by providing the information to assess whether disenrollment is higher for certain groups, and whether the reason for disenrollment varies.

Questions about disenrollment from Medicare Advantage that cannot be answered because data are not published:

• Do Black Medicare Advantage enrollees switch plans or disenroll for different reasons than White Medicare Advantage enrollees?
• Are dual eligible beneficiaries more or less likely to switch plans or disenroll from Medicare Advantage because of problems with coverage of doctors and hospitals?
• Do Medicare Advantage enrollees in poorer health switch plans or disenroll more often because of problems getting the plan to provide and pay for needed care?

Rates of long COVID have begun to flatten. About 1 in 10 adults with COVID have reported having long COVID since rates fell in 2023, according to a KFF analysis of the latest data from the Centers for Disease Control and Prevention. If the rate continues to hold steady, new forms of prevention or treatment may be important to achieve future reductions in long COVID.

As of March 2024, 7% of all adults (17 million people) reported that they have long COVID. Among the 60% of adults who reported ever having had COVID, roughly 3 in 10 reported having long COVID at some point and about 1 in 10 reported currently having it. The ongoing gap between the two long COVID rates indicates that people are continuing to recover, even as rates stabilize.

Long COVID rates are highest among adults who are transgender or who have disabilities. Among the 17 million currently affected, 79% report having any activity limitations, and 25% report that long COVID limits their activities a lot. These limitations can lead to employment and material hardships, with 4 in 10 reporting food insecurity, 2 in 10 reporting difficulty paying rent or mortgage, and 1 in 10 reporting that they had to stop working for a period of time. 

People with long COVID also report greater challenges accessing and affording health care. As COVID is treated more and more as another respiratory virus, this group could face greater barriers to health care going forward.

The U.S. Supreme Court is considering jointly two cases, Loper Bright Enterprises v. Raimondo and Relentless, Inc. v. Department of Commerce, that could affect the impact of federal regulations in implementing laws passed by Congress. Although these cases are focused on regulations pertaining to the fishing industry, the court’s decision could have significant implications for numerous other policy areas, including for regulations related to patient and consumer protections in health care. This brief discusses the longstanding legal doctrine being challenged, called Chevron deference, and includes examples of what could be at stake for health care consumers should federal courts no longer use this doctrine to address litigation related to federal health regulations. The focus here is on patient and consumer protection regulation, but overturning the Chevron deference would have implications in all areas of health care.

What is Chevron deference?

Chevron deference is a legal framework, or test, derived from the 1984 U.S. Supreme Court case Chevron U.S.A. Inc. v. Natural Resources Defense Council, Inc. that found that when an aspect of a federal law is determined to be ambiguous as written, and a federal agency issues a final regulation (typically after public notice and comment) that addresses the ambiguity, courts should defer to this agency regulation. Only where a court thinks the regulation is a not a “reasonable interpretation” of the law can it change or overrule it. Essentially, when federal agency regulations are challenged in federal court as an improper interpretation of a statute, courts have traditionally deferred to the agency interpretation unless they find that the interpretation is arbitrary or not consistent with the statute.

In applying this “deference” to agency regulations, courts usually have two decisions to make: whether the language in a law is actually ambiguous (Step 1), and, if the court agrees that the language is ambiguous, whether the regulation is a reasonable interpretation of the law (Step 2).

Although the U.S. Supreme Court in recent years rarely relies on the Chevron doctrine and has not done so since 2016, it is applied frequently by lower courts, including in the Loper and Relentless cases.

What is the case currently before the U.S. Supreme Court and when will it be decided?

The plaintiffs in the cases currently before the Supreme Court argue that federal agencies overstepped their authority in issuing a rule that the plaintiffs claim would negatively affect their businesses. The case does not deal with health care, but rather with a federal rule that requires commercial fishing vessels to pay for professional observers to monitor certain activities. Nevertheless, the Supreme Court is now poised to decide whether to end the use of Chevron deference in reviewing regulations, or significantly narrow its application. Oral argument took place on January 17, 2024, and the Court should issue a decision by the end of the term (usually in June).

Proponents of maintaining the Chevron framework argue that federal agencies are tasked with administrative interpretation and implementation of laws because of their subject matter expertise, use of data to inform decision making, and understanding of the relevant policy nuances. For example, the Federal Food, Drug, and Cosmetic Act authorizes the U.S. Food and Drug Administration (FDA) to regulate prescription and non-prescription drugs and ensure that they are safe and effective. Without Chevron, they argue, agencies would be hindered from carrying out their responsibilities, and policies that should be based on facts and science may end up being determined by courts and Congress, who lack the requisite subject matter expertise. Furthermore, some academics assert that federal agencies are more politically accountable for their actions than the federal judiciary and that legal doctrine such as Chevron reduce partisan judicial decision-making.

Opponents of Chevron deference argue that policies should not be made by government bureaucrats, who are not elected and not accountable to the public in the same way that members of Congress are, and that delegation of regulatory authority to federal agencies undermines legislative powers. They also argue that administrations can change as frequently as every four years and so can the regulations they issue, which can create confusion for industries and the public; allowing courts more leeway to interpret laws could result in more regulatory stability. Opponents point to the Environmental Protection Agency’s (EPA) changing and reversing of regulations related to power plant carbon emissions as an example of regulatory instability and its impact on these industries. Additionally, opponents assert that application of Chevron deference undermines the constitutional separation of powers.

What is the significance of the case to health policy?

A decision to roll back Chevron deference could impact regulations for policy areas as broad as the environment, workplace conditions, finance, and technology. When it comes to health policy, regulations govern everything from Medicaid and Medicare payment rates for hospitals and other providers, to drug price negotiations, pandemic response, pharmaceutical regulation, and insurance coverage of mental health services.

The ability of federal regulators to interpret unclear aspects of a statute through formal agency regulations has been a key tool to implement legislation passed by Congress and give effect to federal consumer protections. Regulators are required to provide informed and expert rationale for any agency interpretation. Health care and health care financing arrangements are highly specialized and rely on study and expertise to address these issues. In addition, the notice and comment rulemaking process means regulators have to consider financial and scientific impacts from a range of stakeholders. Furthermore, as facts and circumstances change, new discoveries are made, or emergencies (like COVID) arise, agencies have the ability to update regulations in order to effectively implement legislation previously passed by Congress.

Without Chevron deference, agencies will still be able to issue these interpreting regulations, but courts won’t have to accept agency expertise when deciding whether an agency interpretation is consistent with the law. Courts can instead decide for themselves the best approach, shifting more policy decisions to the courts.

What are the potential implications of overturning Chevron?

Overturning Chevron deference could have cascading effects starting with the likelihood that more agency regulations will be overturned by courts. Court decisions to overturn regulations will provide increasing incentive by litigants to challenge any and all regulations in court. The ultimate result is a chilling effect on the issuance of federal regulations needed to implement key federal consumer protections. Below we discuss these implications with examples of how they may affect patients.

More agency regulations could be overturned. First, eliminating Chevron would increase the chance of an agency rule being vacated, which could have a significant impact on consumer protections, including existing Affordable Care Act (ACA) rules that have been in effect for some time, as well as federal rules to implement health plan and provider transparency and out-of-network billing protections.

Over the past fourteen years, the U.S. Department of Health and Human Services (HHS) and other agencies have issued a long list of regulations to stand up the health insurance Marketplaces, and design and fix the process and rules for receiving premium tax credits. Annually, HHS issues its Notice of Benefit and Payment Parameters that includes updates to requirements and interpretations of items not clear or not specifically addressed in the ACA statute. For example, the annual notice specifies the out-of-pocket maximum in insurance plans for the coming year and often includes technical updates to risk adjustment and network adequacy standards. If Chevron deference is eliminated, courts won’t have to give any weight to these interpretations, possibly disrupting consumer expectations about access to Marketplace coverage and financial assistance.

Eliminating Chevron deference could also impact final regulations in such areas as the ACA’s requirement that all non-grandfathered health plans cover a range of clinically-recommended preventive health services, without patient cost sharing. These coverage requirements have been the subject of multiple legal challenges, including the pending Fifth Circuit case Braidwood Management v. Becerra. Should this provision of the ACA survive this constitutional challenge, it could still be the subject of a legal challenge alleging that decisions about what services should be included as preventive care go beyond what Congress intended. If successful, the challenge could strike down preventive service coverage requirements including medications to prevent HIV (PrEP) and breast cancer, statins to prevent heart disease, and lung cancer screening. Loss of these coverage requirements would make such coverage voluntary, leaving potentially millions of people vulnerable to costs for these services. Particularly if Chevron is overturned, it could hamstring agency efforts to implement new or updated clinical guidance from the expert bodies it relies upon in determining the most up-to-date standards of clinically appropriate preventive health care.

Another example of an agency regulation that could be overturned is the limitation on the duration and renewability of short-term, limited duration health plans (STLDs). Designed for people who experience a temporary gap in health insurance coverage, STLDs typically offer fewer covered benefits and consumer protections compared to plans that meet Affordable Care Act (ACA) standards. For these reasons, STLDs have lower premiums than ACA-compliant plans but expose enrollees to more financial risk should they get sick or injured. For more information on STLD plans, see Understanding Short-Term Limited Duration Health Insurance.

An agency regulation issued in 2018 during the Trump administration expanded the permitted coverage duration to up to 12 months with renewability for up to an additional 24 months. The Chevron framework was invoked by a District Court judge presiding over a legal challenge to these changes, concluding with a ruling in favor of the federal agency. Another agency regulation issued in 2024 during the Biden administration rolls back that expansion and limits STLD coverage to three months plus a one-month extension. Should the new agency regulation be challenged in court without Chevron deference, it could be left to the judge to interpret the definition of an STLD plan from the Public Health Service Act, which excludes STLD plans from the definition of individual health insurance coverage but does not define them. The result in this case could be a ruling against the agency, unlike in the previous challenge.

Overturning regulations could provide more incentive for litigants to challenge agency regulations, resulting in more federal litigation crowding court dockets. The judicial landscape that governs the health care industry—already crowded with Affordable Care Act and now Inflation Reduction Act litigation related to new authority to negotiate drug prices in Medicare—could become even more chaotic, potentially resulting in unresolved legal issues and judicial backlog. This reduces access to these courts for everyone, including patients seeking redress for any number of federal protections.

Some argue that the power of federal rulemaking is already being diminished in favor of litigation and judicial interpretation. Even if Chevron is not overturned, there are other legal frameworks such as the major questions doctrine, the nondelegation doctrine, and others that courts currently use to assess agency rulemaking. Nevertheless, Chevron still affects decisions in significant ways in the lower federal courts, and its absence could make agency regulation less meaningful. Most health-related cases do not make their way to the U.S. Supreme Court, including many cases involving the Employee Retirement Income Security Act (ERISA), the law that governs health care coverage access for most Americans with employer-sponsored benefits.

This could lead to a chilling effect on the issuance of agency regulations. In instances where agencies are not specifically required by statute to issue regulations, agencies may decline to issue any regulation. This could create a vacuum, leaving ambiguities in federal policy. Expertise in science, technology, economics, and other fields, as well as the work of regulators to evaluate and create needed data to monitor business and technological advances would be undermined. For health care, emerging issues in artificial intelligence (AI) and the availability of blockbuster drugs and gene therapies create new public policy issues that Congress never anticipated. From clinical appropriateness to medical necessity, to consumer protections in alternative reimbursement arrangements, there are wide-ranging issues that call for rigorous and objective analysis that agencies may be best positioned to do.

One instructive example involves how AI can be used in the administration of health insurance claims. As the use of automated systems to improve speed and efficiency in the exchange of data to make coverage decisions increases, using AI and other automated processes to make final clinical and coverage decisions will raise issues going forward. Recent litigation challenging the use of AI and other automated processes in claims review points to an issue ripe for agency oversight and review. In the case of employer-sponsored insurance, for example, AI could not have been anticipated when Congress wrote ERISA requirements in 1974 to require that employer-sponsored plans provide a “full and fair review by the appropriate named fiduciary” of a claim denial, and that plans act “solely, exclusively, and prudently in the interests of plan participants.” If agencies decline to fill in the gaps to interpret these terms for the 21st century, all stakeholders will be left without a roadmap for how to comply with these requirements. The Centers for Medicare & Medicaid Services (CMS), in its oversight of Medicare Advantage, has recently weighed in informally on the use of AI in coverage decisions, indicating the salience of this issue (see CMS’s FAQ question 2).

Agency reticence to issue regulations also eliminates the opportunity for public comment on proposed agency rules that could inform agencies about industry, consumer, provider, and other stakeholder concerns, including the development of safe harbors for insurers and employer-sponsored health plans which have been a common feature of federal regulation, particularly in ERISA and tax regulations that affect health benefits. Without regulations, agencies would be left to focus on enforcement of statutes as written, often with a lack of clarity for what is considered a violation.

If Chevron deference is eliminated, Congress and the courts, rather than subject matter experts, would be left to outline the intricacies of laws for which they may not have expertise, perhaps reducing the role of facts and science in policymaking. As concerns mount about the proliferation of misinformation in health care, the impact of the coming court decision on agency rulemaking will be important to monitor. In an era of declining confidence in facts and expertise, approximately two-thirds of U.S. adults still have at least a fair amount of trust that federal agencies including the Centers for Disease Control and Prevention (CDC) (67%) and the FDA (65%) make the right recommendations when it comes to health issues. 

In March 2024, the Centers for Disease Control and Prevention (CDC) updated its recommendations for how people can protect themselves and their communities from respiratory viruses, including COVID-19. Following the lead of some state governments and other countries, the updated recommendations do not instruct people with COVID-19 to isolate after testing positive, in effect treating COVID more like the flu. The new CDC guidance brings a unified approach to the risks from respiratory viruses and reflects the nation’s progress against severe illness from COVID-19. However, as the nation moves further from the COVID-19 pandemic, rates of long COVID remain steady and 7% of all adults—roughly 17 million people—reported currently having long COVID in March 2024. The latest data show that rates of long COVID have remained relatively consistent for the last year, suggesting they may persist indefinitely unless new forms of prevention or treatment are discovered.

This issue brief describes the most recent trends in how many people have long COVID, rates of activity limitations among people with long COVID, and which groups have the highest rates of long COVID.

Among the 60% of U.S. adults who have had COVID, roughly 3 in 10 report having long COVID at some point and roughly 1 in 10 report having long COVID now (Figure 1). When the CDC first started asking about long COVID on the Household Pulse Survey, over one third of adults who had COVID reported having had long COVID. That percentage decreased through October 2023 but rose again in February 2024, nearing three in ten. At any point in time, a smaller percentage of adults currently have long COVID. Since December 2022, in any given month, roughly 10% of adults who have had COVID report having long COVID. The gap between the percent of adults who have long COVID now and the percent who ever have highlights that people are recovering.

An estimated 17 million adults currently have long COVID. There are roughly 250 million adults in the U.S. population, 43 million of whom report ever having had long COVID and 27 million of whom report having had it in the past but not having it currently. Those numbers are on par with the number of people who have cancer (17 million in 2020) and almost as many as the number with coronary artery disease (over 20 million in 2023). Those numbers are all based on self-reported data from the Household Pulse Survey, as reported by the CDC. The Pulse survey is an experimental survey providing information about how the COVID pandemic is affecting households from social and economic perspectives. Its primary advantage is the short turn-around time, but the data may not meet all Census Bureau quality standards. The percentage of people who self-report having had COVID in the survey may differ from rates of COVID from other data sources.

Among adults with long COVID, 79% report having any activity limitations from long COVID and 25% report that long COVID limits their activities “a lot” (Figure 2). The Pulse survey asks adults who report having long COVID whether it limits their day-to-day activities “a lot,” “a little,” or “not at all,” and characterizes the “a lot” responses as “significant.” Most people report activity limitations, but only one in four report long COVID limits their activities a lot. These numbers have changed little since the Pulse survey first started asking about activity limitations in September 2022. It is uncertain how well Pulse respondents represent all U.S. adults. On the one hand, it may be difficult for people with severe limitations to respond to the survey, so the survey may undercount with severe limitations. On the other hand, people who experience long COVID and especially, limitations from long COVID, may be more likely to respond to the survey, so the survey may overcount people those with activity limitations. Understanding the severity of limitations and whether they are permanent is relevant to the uncertainty surrounding how long COVID will affect employment and social engagement. Research has shown lower employment rates among adults with long COVID and although there is still uncertainty about the magnitude of the effects, recent work suggests that the net reduction in the labor force stemming from long COVID is equivalent to about one million workers.

Long COVID is most common among adults who are transgender or who have disabilities, groups that already experience greater difficulties in accessing health care (Figure 3). KFF’s analysis of earlier data on long COVID found higher rates of long COVID among adults who were Hispanic or Latino and those with lower levels of education, which raised questions as to whether long COVID would exacerbate existing disparities in health and employment. As more time has passed—and most adults in the U.S. have now contracted the virus at least once—rates of long COVID show less variation across groups based on race, ethnicity, and educational attainment, although people who are Asian and Black have lower rates of long COVID than those who are White and those who are Hispanic or Latino; and women have higher rates of long COVID than men. There are two groups with notably higher rates of long COVID than others, which include:

• People who are transgender (11% of whom have long COVID), and
• Adults with disabilities (12% of whom have long COVID).

People who are transgender and those with disabilities already face barriers accessing health care—which may contribute to their higher rates of long COVID—but higher rates of long COVID among such groups may also exacerbate such barriers.

Looking ahead, 5% to 10% of adults in the U.S. may continue to experience long COVID at any point in time, but research to improve diagnosis and treatment moves slowly. Although rates of long COVID have stabilized, the 17 million adults with long COVID may experience many employment and material hardships with 4 in 10 reporting food insecurity, 2 in 10 reporting difficulty paying rent or mortgage, and 1 in 10 reporting that they had to stop working for a period of time because of their symptoms. Patients testified about their challenges at a Senate Committee on Health, Education, Labor & Pensions hearing in January 2024, along with leading doctors researching long COVID. The witnesses called for additional federal funding to improve the diagnosis and treatment of long COVID but currently, most federal funding goes through the RECOVER initiative, which has been criticized for the way money was spent and the lack of meaningful breakthroughs. As of spring 2023, the federal government had spent $1 billion on the RECOVER initiative and still not signed up a single patient to test any treatments. In February 2024, the Biden Administration dedicated an additional $515 million to the same project. Despite challenges to the RECOVER initiative, researchers recently announced that they are closer to understanding the causes of long COVID, which may allow for improved ways to test for and treat it.

As society moves beyond the pandemic and COVID is increasingly treated as another respiratory virus, groups that are disproportionately more affected by long COVID, may find existing challenges accessing health care to be exacerbated. People with long COVID report statistically higher rates of challenges in accessing and affording health care. The groups with the highest rates of long COVID—adults who are transgender and those with disabilities—also have greater challenges accessing health care even without long COVID and experience higher rates of discrimination by providers. For example, a KFF/Washington Post survey of trans adults found that they had significant issues accessing health care, with nearly half reporting that it was difficult to find a health care provider with whom they could get an appointment with quickly and about half reporting that affordable health care was difficult to find. Beyond difficulties access care, trans adults reported multifaceted discrimination with 17% reporting that they had been denied health care from a provider because of their gender identify. People with disabilities also experience higher rates of discrimination and challenges accessing timely and comprehensive health care, which spurred the National Institutes of Health to designate people with disabilities as a population with health disparities for research purposes in September 2023. Such challenges likely contribute to higher rates of long COVID among adults who are transgender or have disabilities, but also exacerbate the challenges patients experience.