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.

According to new KFF polling, in states with abortion bans, one in five (21%) women of reproductive age (18 to 49) and one in seven (14%) of all women say either they or someone they know has had difficulty accessing an abortion since the Supreme Court overturned Roe v. Wade.

The survey finds that among all women, including in states where abortion remains broadly legal or limited by gestational period, 8% say they or someone they know has had difficulty obtaining an abortion since the Court’s decision.

The survey also showed that majorities of women across states, including in those with abortion bans, think abortion should be legal in all or most cases and support a range of policies that protect abortion access.

Large majorities of women across the United States support protections for doctors who perform abortions as well as the right to travel for medical care and protections for access to abortions in the case of pregnancy-related emergencies such as miscarriages. Furthermore, at least two-thirds of women in states where abortion is banned (66%), limited (68%), or legal (74%) support a guaranteed federal right to an abortion.

There were variations in the level of support for different policies asked about in the survey, likely reflecting the underlying differences in political beliefs among women. For example, just under half of women in states where abortion is banned support establishing a federal 16-week ban on abortions (45%) compared to one-third (33%) of women in states where abortion is legal.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted online and by telephone from February 20-28, 2024, among a nationally representative sample of 1,316 U.S. adults, including 686 women and 380 women of reproductive age (ages 18 to 49). Interviews were conducted in English and in Spanish. The margin of sampling error is plus or minus five percentage points for the sample of women and seven percentage points for the sample of women ages 18 to 49. For results based on other subgroups, the margin of sampling error may be higher.

KFF Health News and Cox Media Group Television Stations announced today that they received the 2024 Goldsmith Awards’ inaugural Government Reporting Prize for their joint reporting in the series “Overpayment Outrage,” which exposed how the Social Security Administration routinely reduced or suspended monthly checks to take back funds to pay off large debts that were often created by its own miscalculation of people’s benefits.

The investigation revealed that more than two million people each year are hit with overpayments, including those least able to repay the debt, such as individuals who are poor, old, disabled, blind or who suffer from a chronic illness.

The reporting triggered congressional hearings, a “top-to-bottom” review by Social Security officials and increased Senate oversight. Commissioner Martin O’Malley also recently announced sweeping policy changes to stop what he called “clawback cruelty” and “grave injustices.”

The Shorenstein Center on Media, Politics and Public Policy at the Harvard Kennedy School honored KFF Health News and Cox Media Group at the Goldsmith Awards ceremony yesterday with the new prize, which recognizes reporting on how government and public policy implementation works, including how and why it can fail and how it can most effectively and efficiently solve problems.

“This series exposed the significant impact of these mistakes on millions of people, including those who had little to no ability to pay back the government, forcing some people to lose their homes, cars and savings,” said KFF President and CEO Drew Altman, who is the founding Publisher of KFF Health News. “This is why KFF reports on systemic issues like this through our news service—to reveal how people are affected by policy. ”

“We’re honored to receive this prestigious award because it reflects CMG’s commitment to local news and investigative journalism,” said Marian Pittman, CMG’s President of Content. “The team’s relentless efforts to uncover the truth behind complex government policies and their implementation has resulted in tangible changes within the SSA and will directly benefit millions of people impacted by overpayments.”

The series was reported by David Hilzenrath and Fred Clasen-Kelly of KFF Health News and Jodie Fleischer of Cox Media Group. A list of additional contributors is available here.

More on “Overpayment Outrage”

Each year the Social Security Administration (SSA) issues billions of dollars in overpayments to recipients whose incomes or other qualifying criteria have changed. Under federal law, the SSA is required to demand repayment of this money, treating it as a debt to the federal government. These clawbacks can happen even decades after the initial overpayments.

In “Overpayment Outrage,” Cox Media Group and KFF Health News examined the overpayment issue and the impacts clawbacks have on vulnerable people. They found that overpayments happen due to rules that are complex and hard to follow, inadequate SSA staffing, outdated limits on assets and lagged or otherwise inaccurate data on income and other beneficiary information. The reporting also laid out potential solutions to address the legislative, funding, and process failures that cause this systemic problem.

About the Reporting Partnership

KFF Health News and Cox Media Group television stations used FOIA requests, reports by the inspector general and SSA and interviews with agency employees, advocates for the disabled and dozens of beneficiaries to piece together the story. What emerged was evidence of a systemic problem in which the SSA routinely reduces or halts monthly benefit checks to reclaim billions of dollars in payments it sent to beneficiaries then later said they should not have received.

After they published the series, hundreds of disability beneficiaries came forward with troubling accounts, including that the government sent them overpayment notices without explanation and threatened to cut off their main source of income with little warning. The agency has since restored benefits to several of the beneficiaries featured in the reporting.

About KFF and KFF Health News

KFF is a nonprofit health policy research, polling and news organization. Our mission is to serve as a nonpartisan source of information for policymakers, the media, the health policy community and the public. KFF Health News is a national newsroom that produces in-depth and award-winning journalism about health issues and is one of the core operating programs at KFF. KFF Health News has been recognized repeatedly for its journalism, with awards honoring its investigative reports on the American health care system.

Other major KFF programs include Policy Analysis; KFF Polling and Survey Research; and KFF Social Impact Media, which conducts specialized public health information campaigns. A new program on Health Misinformation and Trust will be launched soon.

Note: For the latest data on the experiences of the five largest publicly traded companies, view our 2025 brief

At the start of the “unwinding” period, in April 2023, Medicaid enrollment peaked at 94.5 million, an increase of 23 million or 32% from before the pandemic. As of December 2023, Medicaid enrollment declined by more than 9% across states, a decline of over 9 million people. The Centers for Medicare and Medicaid Services (CMS) continues to highlight the role managed care organizations (MCOs) can play in helping people eligible for Medicaid use and keep their coverage, as nearly three-quarters of Medicaid beneficiaries are enrolled in a managed care plan. This brief takes a closer look at the five largest publicly traded companies (also referred to as “parent” firms) operating Medicaid MCOs, which account for half of Medicaid MCO enrollment nationally. This analysis presents the latest parent firm enrollment and financial data (through the end of CY 2023) as well as key takeaways from the firms’ unwinding experience. Information and data reported in this brief come from quarterly company earnings reports and calls, financial filings and other company materials as well as from national administrative data. Key takeaways include:

• Medicaid Enrollment. From March 2023 to December 2023, Medicaid enrollment declined by nearly 10% across the five firms, tracking the rate of decline seen nationally.
• Medicaid Revenue. Although firms saw a 10% decline in Medicaid enrollment as of the end of 2023, the firms that report Medicaid-specific revenue information reported year-over-year (2023 over 2022) growth in Medicaid revenue ranging from 3% to 18%.
• Unwinding Impacts. In earnings calls, firms have discussed the impacts of unwinding, including high procedural disenrollment rates of 70% or above and gaps in member coverage that can extend for several months. Several firms reported states have been making mid-cycle and retrospective rate adjustments to account for the impact of redeterminations on the average risk profile (or “acuity”) of members who remain enrolled.

Medicaid enrollment in the five largest publicly traded companies operating Medicaid MCOs

Five for-profit, publicly traded companies – Centene, Elevance (formerly Anthem), UnitedHealth Group, Molina and CVS Health – account for 50% of Medicaid MCO enrollment nationally (Figure 1). All five are ranked in the Fortune 500, and four are ranked in the top 100, with total revenues that ranged from $34 billion (Molina) to $372 billion (UnitedHealth Group) for 2023. Each company operates Medicaid MCOs in 14 or more states (Figure 2).

All five firms also operate in the commercial and Medicare markets (Figure 3); however, the distribution of membership across markets varies across firms. Two firms – Molina and Centene – have historically focused predominantly on the Medicaid market. Medicaid members accounted for over 90% of Molina’s overall medical membership and nearly 65% of Centene’s medical membership as of December 2023 (Figure 3). Since the start of unwinding, Medicaid membership as a share of total medical membership has declined for all five firms. The unwinding may be contributing to membership distribution shifts.

Combined Medicaid enrollment across the five firms decreased by 4.3 million or 9.8% from March 2023 to December 2023 (Figure 4). Similar to the enrollment decline experienced by the five parent firms, national data show total Medicaid/CHIP enrollment declined by more than 9% from March 2023 to December 2023. Changes in “net” enrollment reflect the people who are dropped from Medicaid as well as those who newly enroll, and those who re-enroll within a short timeframe following disenrollment, also known as “churn.” Changes in parent firm enrollment may reflect activity including firm acquisitions or sales and new or lost Medicaid contracts. Although Medicaid enrollment has declined across parent firms since the start of the unwinding, the three firms that report Medicaid-specific revenue information (UnitedHealth, Molina, and Centene) reported year-over-year (2023 over 2022) growth in Medicaid revenue (18%, 6%, and 3%, respectively). Molina reported the medical margin earned by the Medicaid segment was $3.0 billion in 2023 (medical margin = premium revenue – medical costs). Since enrollment declines escalated throughout 2023, it’s possible that the Medicaid revenue picture for these firms could get worse in the coming months. However, it’s also possible that insurers have been able to maintain Medicaid revenues in spite of enrollment declines in part through retrospective rate adjustments.

Impact of unwinding for the five largest publicly traded companies operating Medicaid MCOs

All five firms report monitoring the impact of unwinding, including disenrollment, “churn”, coverage transitions, gaps in coverage, and changes in member acuity. Key highlights from Q2 – Q4 2023 earnings calls include:

• Procedural Disenrollment. In earnings calls since the start of the unwinding, firms have reported procedural disenrollments make up a large percentage of their total disenrollments. Firms that provided estimates reported procedural disenrollment rates of 70% or above. Procedural disenrollments occur when an enrollee is unable to complete the renewal process. Elevance reported that disenrolled members are facing barriers to renewal, including awareness of the process and actions required to maintain coverage. In Q3 2023, Elevance reported that nearly 40% of their Medicaid members procedurally disenrolled were children/youth (under age 18). KFF tracking shows, overall, about 70% of disenrollments so far have been “procedural,” but the rate varies substantially across states. Many strategies are available to states to minimize procedural terminations, including temporary waivers that allow states to obtain updated enrollee contact information from MCOs, permit MCOs to assist enrollees in completing certain parts of renewal forms, and extend automatic reenrollment into an MCO plan from the standard 60 days up to 120 days.
• “Churn”. According to firm monitoring, some individuals who have been disenrolled are reenrolling in Medicaid coverage. Firms report continuing with outreach efforts to help people retain or regain their Medicaid coverage or find other affordable coverage. Of the firms that shared this information, Medicaid reenrollment rates ranged from 20-30%. Centene noted that CMS action requiring states to reinstate coverage due to systems issues has impacted reenrollment rates.
• Coverage Transitions. Firms are also monitoring transitions to coverage through the Affordable Care Act (ACA) Marketplace. All five firms offer a Marketplace plan in many states where they operate a Medicaid MCO, however, there may not be plan alignment if plans operate regionally. Centene reported 10-15% of members disenrolled from Medicaid transitioned to their Marketplace product. Other firms have not provided specific Marketplace transition rates/estimates but note one driver of Marketplace growth has been Medicaid redeterminations. Some individuals eligible for coverage in the Marketplace (which has higher income eligibility thresholds than Medicaid) qualify for plans with zero premiums; however, Medicaid may provide more comprehensive benefits and lower cost-sharing compared to Marketplace coverage. Recent data show that Marketplace signups have reached 21.3 million people, exceeding last year’s record high by another 5 million people. Medicaid unwinding is only one factor contributing to that growth – which is being driven in large part by enhanced premium subsidies – and a relatively small share of people disenrolled from Medicaid are transitioning to Marketplace or Basic Health Plan coverage.
• Gaps in Coverage. Some enrollees are experiencing gaps in coverage that, according to some firms, can extend for multiple months. This is consistent with a pre-pandemic analysis of national survey data that show two-thirds of enrollees experience a period of uninsurance in the 12 months following Medicaid disenrollment. In focus groups conducted by KFF in September 2023 with Medicaid enrollees who recently completed the renewal process, several participants who were disenrolled reported facing substantial out-of-pocket costs for medically necessary care during gaps in coverage. Focus group participants also reported needing one-on-one assistance from caseworkers and community-based organizations to help them regain Medicaid coverage.
• Member Acuity. In earnings calls, several firms reported states have been making mid-cycle and retrospective rate adjustments to account for the impact of redeterminations on average member acuity (i.e., health status, which can affect use of services and drugs). Although states may have built enrollment and acuity change assumptions into capitation rates (for 2023 and 2024), states and plans faced considerable uncertainty at the start of the unwinding–understanding that while membership losses would become immediately apparent, new utilization and acuity trends would take longer to discern. Prior to the start of unwinding, plans reported expecting the overall risk profile of members to increase, as they anticipated “stayers” would be sicker than “leavers.” At least one firm noted continued effects of risk corridors (where states and plans agree to share profit or losses) from earlier contract years, requiring plan payback.

Looking Ahead

As of December 2023 (timeframe for this analysis), states were nine months into the unwinding of the Medicaid continuous enrollment provision. It is highly uncertain what national Medicaid enrollment will be at the end of unwinding. Focus groups with enrollees revealed that while many have been able to successfully renew Medicaid coverage, many have been disenrolled due to confusion and barriers to completing the renewal process. While many individuals who are disenrolled may “churn” back to Medicaid or transition to other coverage, unwinding will likely contribute to increases in the number of people who are uninsured. People who are uninsured face more barriers to care, go without needed care, and may experience higher out of pocket costs and medical debt. Changes in the uninsured will depend on whether individuals who are no longer eligible and are disenrolled from Medicaid transition to other coverage, including employer plans and the Marketplace. Medicaid managed care plans have a financial interest in maintaining enrollment in Medicaid and facilitating transitions to the Marketplace (and other products). The five publicly traded firms that are the subject of this analysis account for about half of all Medicaid MCO enrollment nationally. Medicaid managed care plans can continue to assist state Medicaid agencies in communicating with enrollees, conducting outreach and renewal assistance, and in facilitating transitions to Marketplace coverage. Quarterly earnings reports and calls can provide further insight into the impact of the unwinding on Medicaid enrollees, including disenrollments, gaps in coverage and transitions to the Marketplace.

A third (33%) of LGBT adults say that a doctor or other health care provider treated them unfairly or with disrespect in the past three years – a rate twice as high as reported by people who don’t identify as LGBT (15%), a new KFF survey reveals. 

The shares who report unfair or disrespectful treatment are similar among LGBT adults across racial and ethnic groups, though Black and Hispanic LGBT adults are more likely than White LGBT adults to say that they experienced poor treatment specifically due to their race or ethnic background. 

In addition, LGBT adults are more likely than non-LGBT adults to report other negative experiences with a health care provider in the past three years, including a provider assuming something about them without asking (40% v. 17%), suggesting they personally were to blame for a health problem (32% v. 15%), or ignoring a direct request or question they asked (32% v. 14%).

“There is no good reason twice as many LGBT adults should be reporting being treated poorly by the health system compared to non-LGBT adults,” KFF President and CEO Drew Altman said. “Health professionals and health care institutions need to take a hard look at these data and themselves.” 

Substantial shares of LGBT adults report a recent negative experience with a provider that led to consequences, such as making them less likely to seek care (39%), leading them to switch providers (36%), or causing their health to get worse (24%).

Most LGBT adults (60%) say that they feel they have to be very careful about their appearance in order to be treated fairly and/or prepare themselves for insults when visiting a doctor or other health care provider.

This new report about LGBT experiences draws on data from KFF’s Survey on Racism, Discrimination, and Health, which examines those issues not only in health care but in other aspects of society, and their relationship to people’s health and well-being.

LGBT Adults More Likely to Experience Homelessness and Report Mental Health Challenges

The survey finds that 1 in 5 (22%) of LGBT adults say that they experienced homelessness at some point in their lives – twice the share among non-LGBT adults. At least a third of lower-income LBGT adults (39%) and Black LGBT adults (35%) say they experienced homelessness during their lives.

When asked to rate their own mental health, 39% of LGBT adults say it is “fair” or “poor.” This includes larger shares of younger LGBT adults (ages 18-29). Overall, about half (54%) of LGBT adults report feeling anxious either “always” or “often” in the past year, while a third report feeling lonely (33%) or depressed (32%) at least often. These rates are all about double the shares among non-LGBT adults.

LGBT adults who report experiencing some form of discrimination in their daily lives are more likely to report feeling lonely, depressed or anxious in the past year than those who rarely or never experience discrimination.

About four in ten (44%) LGBT adults say that they or a family member has ever experienced a severe mental health crisis that resulted in serious consequences such as homelessness, hospitalization, incarceration, self-harm or suicide – about twice the share of non-LGBT adults who report this (19%). Those with large support networks of family and friends are less likely to report such experiences compared to those with small support networks.

Nearly half of LGBT adults (46%) say there was at time in the past three years when they needed mental health services but didn’t get them, including two-thirds (68%) of LGBT adults who describe their mental health as “fair” or “poor.” Among those who received or tried to receive mental health care, roughly half say it was difficult to find a provider who could relate to their background and experience (51%), would take their health insurance (49%), or that they could afford (48%).

The KFF Survey on Racism, Discrimination and Health is a probability-based survey conducted online and via telephone with a total of 6,292 adults, including oversamples of Hispanic, Black, and Asian adults conducted June 6-August 7, 2023. Respondents were contacted via mail or telephone; and had the choice to complete the survey in English, Spanish, Chinese, Korean, or Vietnamese. Survey methodology was developed by KFF researchers in collaboration with SSRS, and SSRS managed sampling, data collection, weighting, and tabulation. The margin of sampling error is plus or minus seven percentage points for LGBT adults (n=521); and two percentage points for non-LGBT adults (n=5,771). LGBT adults are those who identify as lesbian, gay, bisexual, and/or transgender.