As Congress considers reauthorizing the President’s Emergency Plan for AIDS Relief (PEPFAR) for a fourth time, a new KFF Policy Watch details key facts about the program and top issues related to its authorization and funding. Created in 2003 as the U.S. government’s signature global health effort in the fight against HIV, PEPFAR is broadly regarded as one of the most successful programs in global health history, with the U.S. government reporting tens of millions of lives saved over the past 20 years. However, the reauthorization comes in a period of heightened debate over the federal budget in a divided Congress.

The Policy Watch asks and answers frequently asked, fundamental questions about PEPFAR’s reauthorization, including:

•    Will PEPFAR end without reauthorization?

•    Are there any provisions of the program that would end without reauthorization?

•    Is PEPFAR reauthorization required for the program to receive continued funding?

•    What are some issues to consider for PEPFAR’s future, and are these affected by reauthorization?

Read “PEPFAR Reauthorization 2023: Key Issues” and access a variety of resources about the program in our PEPFAR Policy Resource Hub

This year, Congress will consider reauthorization of the President’s Emergency Plan for AIDS Relief (PEPFAR), which was created in 2003 as the U.S. government’s signature global health effort in the fight against HIV. This would be PEPFAR’s fourth reauthorization. The program is broadly regarded as one of the most successful programs in global health history, with the U.S. government reporting tens of millions of lives saved over the past 20 years. Our analyses have also found positive spillover effects associated with the program beyond HIV, such as large, significant reductions in both maternal and child mortality and significant increases in some childhood immunization rates. At the same time, with a divided Congress, there are likely to be heightened disagreements over funding levels across the federal budget, potentially tied to the need to raise the debt ceiling later this year.

Following are fast facts about the program and top issues related to PEPFAR’s authorization and funding.

What are authorization and reauthorization bills, and what is their connection with appropriations bills?

Established by House and Senate rules, the two-step process of authorization/appropriations supports the linkages between the authorizing and appropriating committees of each chamber:

• Authorization legislation establishes programs, policies, and organizational, oversight, and reporting requirements. It is also “intended to provide guidance to appropriators as to a general amount and under what conditions funding might be provided to an agency or program” before appropriations may be made. It may have time-limited provisions, including for funding.
• Reauthorization legislation allows existing law for programs and policies to be adapted to current circumstances, such as adding or updating reporting requirements, increasing oversight, and extending or modifying time-limited provisions.
• Appropriations legislation provides budget authority, allowing funding for an agency or program.

For foreign assistance specifically – including global health assistance – this two-step process is also required by law. Still, this requirement is often waived by Congress since it has not passed comprehensive foreign assistance authorization legislation since 1985. (Some instances of limited authorization legislation for specific programs, including global health programs such as PEPFAR, exist, but these are less frequent occurrences than the use of waivers for the process.) Thus, absent an authorization or reauthorization bill, an appropriations bill can have the effect of authorizing the creation of a new program when providing funding for a specific activity for the first time and/or authorizing the continued operation of an existing program by providing continued funding for its activities.

When was PEPFAR created, and how many times has it been reauthorized?

President George W. Bush called for the creation of a new U.S. global HIV program in his State of the Union address on January 28, 2003, and Congress passed authorizing legislation just four months later on May 23, 2003. This legislation established the program, its structure – including creating a new position of U.S. Global AIDS Coordinator at the Department of State, with the rank of Ambassador – and initial funding authorization levels. Since then, PEPFAR has been reauthorized three times (see Table 1).

Will PEPFAR end without reauthorization?

No. PEPFAR operates largely under permanent authorities of U.S. law that allow for ongoing funding and the continuation of the major structures of the program, such as the Office of the Global AIDS Coordinator at the Department of State as well as the position of Global AIDS Coordinator, U.S. participation in the Global Fund, and annual reporting on PEPFAR efforts. Absent a reauthorization, the PEPFAR program would continue, provided funds are appropriated. There are, however, some requirements that are time-bound and would “sunset” if a reauthorization bill is not passed (Congress could, for example, simply extend the dates of these time-bound provisions in a reauthorization bill) or if Congress does not address them through another legislative vehicle. Specifically, there are seven requirements that would end after FY 2023, and one that would end after FY 2024, if not addressed. Of these, two relate to how HIV funding is allocated, four specify requirements related to the U.S. contribution to the Global Fund, and two address reporting or oversight (see Table 2).

Is PEPFAR reauthorization required for the program to receive continued funding?

No. Under current legislative rules, Congress can continue to appropriate funding for the program each year. As mentioned above, typically, reauthorization and appropriation bills work hand-in-hand, though there are exceptions, such as authorized programs that do not have a current funding authorization but for which funding is effectively authorized when it is appropriated (as has been the case for PEPFAR since FY 2014). At the same time, the House of Representatives recently passed a rules package for the 118th Congress that requires authorization and oversight plans for House committees, which may signal heightened oversight as well as more visibility around, and potential discussion of, the practice of appropriating funding to programs without a current funding authorization.

Does a funding authorization signal a required level of funding?

When included in an authorization or reauthorization bill, a funding authorization may indicate congressional intent to appropriate funding at certain levels, but Congress is not required to appropriate the level of funding that is authorized for a discretionary program. Ultimately, Congress may appropriate more funding than authorized in some instances, while it may appropriate less in others. This happened during PEPFAR’s first five-year authorization, FY 2004 – FY 2008, when more was appropriated than the $15 billion initially authorized ($19.8 billion was appropriated). The reverse happened during the its second period, FY 2009 – FY 2013, when less was appropriated than the $48 billion authorized (just under $37.2 billion was provided).

A funding reauthorization in PEPFAR for an area (e.g., bilateral HIV) or purpose (e.g., U.S. contribution to the Global Fund) may be a specific funding amount – either as an exact amount that indicates Congress wants that amount directed to this, as a floor that indicates Congress wants at least this amount directed to this, a ceiling that indicates Congress wants no more than this amount directed to this – or more general, stating “such sums as necessary” are authorized for this (this amount may be within an overall funding authorization level or may be standalone).

What are some issues to consider for PEPFAR’s future and are these affected by reauthorization?

Regardless of what happens with reauthorization, there are several discussions underway and questions about PEPFAR’s future that are not dependent on the program’s reauthorization (though Congress could choose to address them that way). Among others, these include discussions about PEPFAR’s role in pandemic preparedness and response, particularly given its work to address COVID-19 in PEPFAR countries and the numerous global challenges ahead for shoring up pandemic preparedness more generally. Indeed, in December 2022, the Secretary of State announced plans for a new Bureau of Global Health Security and Diplomacy that would bring together the functions of several Coordinators and offices, including PEPFAR’s Office of the U.S. Global AIDS Coordinator and Global Health Diplomacy and the Coordinator for Global COVID-19 Response and Health Security. The Bureau would be led by the Department of State official who is already dual-hatted as the U.S. Global AIDS Coordinator and the U.S. Special Representative for Health Diplomacy, currently Dr. John Nkengasong. There are also broader questions about how PEPFAR, and other vertical disease programs (those focused on single diseases), can best contribute to making health systems stronger and more sustainable at the country level; how, with what has largely been flat funding, the program can make further gains in the HIV response; and how best to promote equity, particularly regarding key and other vulnerable populations.

President Biden released the FY 2024 President’s Budget Request on March 9, 2023. The request includes discretionary funding for U.S. global health programs at the State Department, the U.S. Agency for International Development (USAID), the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NIH). Funding provided to the State Department and USAID through the Global Health Programs (GHP) account, which represents the bulk of global health assistance, totals $10.9 billion, an increase of $367 million above the FY 2023 enacted level. Most of the increase is for global health security (GHS), which totals $1.2 billion (an increase of $345 million above the FY 2023 enacted level) and includes $500 million for the Pandemic Fund. Funding also increased for family planning and reproductive health (FP/RH), Gavi, and the Health Reserve Fund, but is lower for bilateral HIV, tuberculosis (TB), and malaria. The FY 2024 request also includes new dedicated funding for the Global Health Worker Initiative. Funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), maternal and child health (MCH), nutrition, vulnerable children, and neglected tropical diseases remained flat. See the table below for additional detail on global health funding in the FY 2024 request (downloadable tables here). See the KFF budget tracker for details on historical annual appropriations for global health programs.

Resources:

• White House, Office of Management and Budget (OMB), President’s Budget for FY 2024
• State Department, FY 2024 International Affairs Budget

Editor’s Note: This brief was updated on March 10, 2023 to reflect recent price announcements by Moderna and the release of the President’s FY 2024 budget request.

The federal government has spent more than $30 billion¹  on COVID-19 vaccines, including the new bivalent boosters, incentivizing their development, guaranteeing a market, and ensuring that these vaccines would be provided free of charge to the U.S. population. However, last year, the Biden Administration announced that it no longer had funding, absent further Congressional action, to make additional purchases and it began preparing for the transition of COVID-19 vaccines to the commercial market. This means that manufacturers will be negotiating prices directly with insurers and purchasers, not just the federal government, and prices are expected to rise. Elsewhere, we have analyzed the implications of commercialization for access to and coverage of COVID-19 vaccines, finding that most, but not all, people will still have free access. Still, the cost of purchasing vaccines for the population is likely to rise on a per dose basis, though the extent to which it affects total health spending is dependent on vaccine uptake and any negotiated discounts, among other factors.

Here, we illustrate the potential total cost of Pfizer and Moderna COVID-19 vaccines, based on their publicly-announced expected prices, once they enter the U.S. commercial market. Specifically, we compare the average price paid by the federal government for the COVID-19 bivalent boosters to the estimated average commercial prices that have been suggested by manufacturers, and calculate an overall cost for purchasing vaccines for the adult population (ages 18 and older) across different scenarios of vaccine uptake (we only estimate costs for purchasing a single vaccine dose under different population uptake scenarios though it is possible that additional boosters will be needed on an annual or some other regular basis). While four COVID-19 vaccines have been authorized or approved for use in the United States, we focus our analysis only on Pfizer and Moderna vaccines, which account for almost all doses administered in the U.S. (97% as of March 2² ) and approximately 80% of all federal funding spent on COVID-19 vaccines.

The federal government has so far purchased 1.2 billion doses of Pfizer and Moderna COVID-19 vaccines combined, at a cost of $25.3 billion, or a weighted average purchase price of $20.69 per dose. In mid-2020, months before any COVID-19 vaccine was yet authorized or had even completed clinical trials, the federal government purchased an initial 200 million vaccine doses from Pfizer and Moderna (100 million each), at a price of $19.50 per dose and $15.25 per dose, respectively. This guaranteed an advance market for these vaccines, should they prove safe and effective and receive emergency use authorization (EUA) from the Food and Drug Administration (FDA), as each did in December 2020. In total, the federal government has made six different bulk purchases from Pfizer, totaling 655 million doses, and five bulk purchases from Moderna, totaling 566 million doses, for a total of 1.2 billion doses. Subsequent federal government purchases were made at a higher price per dose, with a weighted average across these purchases of $20.69. (See Figure 1 below and Tables in Appendix.)

The federal price paid per dose has generally increased over time, with the highest price paid for the most recent bivalent, or updated, boosters. The most expensive price per dose paid by the government was for the recent purchase of bivalent booster doses from each manufacturer, including 105 million doses at $30.48 per dose from Pfizer and 66 million doses at $26.36 per dose from Moderna (or a weighted average price per dose of $28.89). This represented a 56% increase in the price per dose for Pfizer, compared to the initial Pfizer purchase price, and a 73% increase for Moderna. In total, the U.S. has purchased 171 million doses of the bivalent booster at a cost of $4.9 billion.

While the commercial prices for COVID-19 vaccines are not yet known, both Pfizer and Moderna have signaled likely ranges that are three to four times greater than the pre-purchased federal price for the bivalent booster. In a recent investor call, Pfizer indicated that it expected a commercial price per dose for its vaccine to be between $110 and $130. Moderna has also suggested the same range. This range is 4 to almost 5 times greater than the weighted average price per dose paid by the federal government for Moderna and Pfizer bivalent doses ($28.90).

In the unlikely outer bound scenario in which all adults were to receive a vaccine at the announced expected commercial prices, it could cost between $28.4 billion and $33.5 billion to purchase enough vaccine doses for the U.S. adult population for a one-year period (258 million doses). The lower end of this cost range ($28.4 billion for 258 million doses) is several billion higher than what the federal government has spent for more than four times as many Pfizer and Moderna doses to date ($25.3 billion for 1.2 billion doses). See Figure 2.

Even under much lower vaccine uptake scenarios (e.g., 50% of adults getting a booster), the total cost to purchase COVID vaccines at the commercial price would still exceed the cost of purchasing enough vaccines for everyone at the federal bivalent booster price. Under a scenario where half of the adult population is vaccinated for COVID-19 at the announced commercial prices-per-dose, the total cost (ranging from $14.2 billion to $16.8 billion) still greatly exceeds the cost of purchasing vaccines for all adults at the average federal bivalent price ($7.5 billion). Although all adults are recommended to get the Omicron booster, a 50% uptake rate would be similar to that of the annual flu vaccine. If only a quarter of the adult population were to be boosted at the commercial price per dose, the total cost could range from $7.1 billion to $8.4 billion. The low end of that range is slightly lower than the cost of vaccinating all adults at the federal price. Current take-up of the Omicron booster – at 19.6% of all adults as of March 2– is even lower, though these boosters only became available last September and there are continuing efforts to encourage people to get boosted. KFF’s latest COVID-19 vaccine monitor survey found that just under a third of adults who had not yet had an updated booster said they planned to get one as soon as they could.

While most people will still be able to get COVID-19 vaccines for free, these costs will be borne by both public and private vaccine payers. As we have described in an earlier analysis, most people with health insurance will still be able to get COVID-19 vaccines, including boosters, for free even after the federally purchased supplies are depleted. But these costs will still be borne by public and private payers. In addition, the cost estimates we provide above are only for the vaccine doses themselves; there is also the cost of vaccine administration which could range from about $25 to $40 per dose, as well as a potential physician visit fee. For insured people, these costs would be covered by the insurer, as they are currently. Thus far, about four in ten adults who have received an updated booster dose are over age 65 and likely covered by Medicare, while the remaining two thirds are likely primarily covered by either Medicaid or private insurance. As older adults are more likely to opt for booster shots, a disproportionate share of the total national spending may be borne by the Medicare program. (For most preventive vaccines, Medicare pays 95% of the average wholesale price, which is often referred to as the “list” price, but we do not account for this potential modest discount in our cost illustrations above.) For private insurers and their enrollees, these costs are expected to have an upward effect on premiums. Our recent analysis of 2023 premium filings from ACA Marketplace insurers found that some insurers say the end to federal purchasing could have a small upward effect on premiums next year. These costs could continue to push premiums upward in future years as well, particularly if private insurers under-estimated the cost of the vaccine dose before Pfizer and Moderna’s price announcements.

For the uninsured and underinsured – who will not have guaranteed access to free COVID-19 vaccines – the commercial price could discourage vaccination. The suggested average price for COVID-19 vaccines after commercialization ($110 to $130 per dose) is significantly higher than the commercial price for the annual flu vaccine ($18 to 30 per dose), and could be a cost barrier for the uninsured and underinsured, who have no guaranteed mechanism for receiving COVID-19 (or any) vaccines once federal supplies are depleted. This includes people with private insurance in grandfathered or short-term limited duration health plans, as these are not subject to the Affordable Care Act’s requirement to provide recommended vaccines with no out-of-pocket cost. These individuals could have to pay all or some of the cost of the vaccine and associated physician appointments or administration fees. To provide enough COVID-19 vaccines for the 23.4 million uninsured adults in the U.S. at commercial prices for a one-year period excluding administration costs would cost between $2.6 billion and $3 billion; at the average federal price paid for the bivalent booster, it would cost $677 million. (The total cost would be higher if extended to the under-insured). To address the lack of guaranteed access to vaccines for uninsured adults, in last year’s budget request, the Biden administration proposed creating a new “Vaccines for Adults” (VFA) program to provide uninsured adults with access to all ACIP-recommended vaccines, including COVID-19 vaccines, at no cost, although Congress did not act on that proposal. The administration has once again included the proposal in its FY 2024 budget request. In addition, both Moderna and Pfizer have indicated that they will use patient assistance programs to provide free COVID-19 vaccines to the uninsured and underinsured but details on those programs are not yet available.

Discussion

On a per-dose basis, the cost to continue to vaccinate adults in the U.S. against COVID-19 after federally purchased doses are depleted is likely to be significantly higher than the costs borne in the past by the federal government. Here, we find that the commercial price ranges announced by Moderna and Pfizer are four to almost five times greater than the pre-purchased federal price for the bivalent booster, resulting in comparatively high total costs even if, for example, only half the population were to get boosted. At the same time, it is important to note that even at higher spending levels driven by commercial pricing, COVID-19 vaccination is likely to be cost-effective compared to not vaccinating, given the effectiveness of these vaccines at preventing hospitalizations and deaths.

While most consumers with public and private insurance will be protected from having to pay directly for vaccine costs, those who are uninsured and underinsured may face cost barriers when the federally-purchased vaccine doses are depleted. In addition, as private payers take on more of the cost of vaccinations and boosters, this could have a small upward effect on health insurance premiums.

Many of the factors that will influence the future commercial market and the exact price of COVID-19 vaccine doses are hard to predict at this point. Here, we illustrated the cost of a purchasing a single vaccine dose under different population uptake scenarios, but it’s possible that doses could be needed more frequently if new variants arrive, or less frequently if the pandemic wanes. Costs will also depend greatly on the number of people that elect to be vaccinated, and booster uptake is low so far. Ultimately, the price for future doses is hard to know, and they could be higher than those implied by companies so far if new formulations are developed, or could come down if discounts are negotiated. Still, insurers and public programs will not have much leverage since they are generally required to cover all ACIP recommended COVID vaccines with no patient out-of-pocket cost. Without advanced purchases or guarantees by the federal government, it’s also possible that future supply may not always match demand, which would have unpredictable consequences for the price and availability of vaccines in the U.S.

Appendix

*bivalent booster

Sources: KFF analysis of data from:

• https://www.medicalcountermeasures.gov/app/barda/coronavirus/covid19.aspx
• https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-announce-agreement-us-government-600
• https://www.medicalcountermeasures.gov/newsroom/2020/pfizer/
• https://www.defense.gov/News/Releases/Release/Article/2455698/trump-administration-purchases-additional-100-million-doses-of-covid-19-investi/
• https://www.medicalcountermeasures.gov/newsroom/2020/pfizer-1/
• https://www.medicalcountermeasures.gov/newsroom/2021/covid19purchases/
• https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-provide-us-government-additional-200
• https://www.pfizer.com/news/press-release/press-release-detail/pfizer-and-biontech-provide-us-government-additional-50
• https://www.hhs.gov/about/news/2022/06/29/biden-harris-administration-secures-105-million-doses-of-pfizers-latest-covid-19-vaccine-for-fall-vaccination-campaign.html

*bivalent booster

Sources: KFF analysis of data from:

• https://www.medicalcountermeasures.gov/app/barda/coronavirus/covid19.aspx
• https://www.medicalcountermeasures.gov/newsroom/2020/modernamanufacturing
• https://investors.modernatx.com/news/news-details/2020/Moderna-Announces-Supply-Agreement-with-U.S.-Government-for-Initial-100-Million-Doses-of-mRNA-Vaccine-Against-COVID-19-mRNA-1273/default.aspx
• https://www.medicalcountermeasures.gov/newsroom/2020/moderna/
• https://investors.modernatx.com/news/news-details/2020/U.S.-Government-Exercises-1st-Option-for-Additional-100-Million-Doses-of-Modernas-COVID-19-Vaccine-Candidate/default.aspx
• https://www.medicalcountermeasures.gov/newsroom/2021/covid19purchases/
• https://investors.modernatx.com/news/news-details/2021/U.S.-Government-Purchases-Additional-100-Million-Doses-of-Modernas-COVID-19-Vaccine/default.aspx
• https://investors.modernatx.com/news/news-details/2021/U.S.-Government-Purchases-Additional-200-Million-Doses-of-Modernas-COVID-19-Vaccine/default.aspx
• https://www.hhs.gov/about/news/2022/07/29/biden-harris-administration-secures-66-million-doses-modernas-variant-specific-covid-19-vaccine-booster-for-potential-use-in-fall-winter-2022.html

Source: KFF analysis

Sources: KFF analysis of data from:

• https://public3.pagefreezer.com/browse/HHS%20%E2%80%93%C2%A0About%20News/20-01-2021T12:29/https://www.hhs.gov/about/news/2020/07/31/hhs-dod-partner-sanofi-gsk-commercial-scale-manufacturing-demonstration-project-produce-millions-covid-19-investigational-vaccine-doses.html
• https://public3.pagefreezer.com/browse/HHS%20%E2%80%93%C2%A0About%20News/20-01-2021T12:29/https://www.hhs.gov/about/news/2020/08/05/hhs-dod-collaborate-with-johnson-and-johnson-to-produce-millions-of-covid-19-investigational-vaccine-doses.html
• https://public3.pagefreezer.com/browse/HHS%20%E2%80%93%C2%A0About%20News/20-01-2021T12:29/https://www.hhs.gov/about/news/2020/05/21/trump-administration-accelerates-astrazeneca-covid-19-vaccine-to-be-available-beginning-in-october.html
• https://public3.pagefreezer.com/browse/HHS%20%E2%80%93%C2%A0About%20News/20-01-2021T12:29/https://www.hhs.gov/about/news/2020/07/07/hhs-dod-collaborate-novavax-produce-millions-covid-19-investigational-vaccine-doses-commercial-scale-manufacturing-demonstration-projects.html

1. This includes vaccines that have been authorized for use in the United States (vaccines from Pfizer, Moderna, J&J, and Novavax) as well as others that either did not make it past the clinical trial phase or for which manufacturers have not sought authorization (vaccines from Merck/IAVI, Sanofi/GlaxoSmithKline and Astra-Zeneca). ↩︎
2. Analysis of data from the CDC’s COVID-19 Data Tracker: https://covid.cdc.gov/covid-data-tracker/#vaccinations_vacc-people-booster-percent-pop5. ↩︎

Since the beginning of the COVID-19 pandemic, states have kept people continuously enrolled in Medicaid in exchange for enhanced federal funding. Largely due to these changes, KFF estimates that Medicaid enrollment will increase to 95 million, an increase of over 30% from enrollment in February 2020. The Medicaid continuous enrollment provision will end on March 31, 2023, and states will then begin disenrolling people who are no longer eligible or who are unable to complete the renewal process even if they remain eligible. We have estimated that Medicaid enrollment could drop by 5 to 14 million people over the coming year as states unwind continuous enrollment. As states prepare for the end of the continuous enrollment provision, a survey from December 2022 found that 62 percent of adults in Medicaid-enrolled families were not aware of upcoming renewals.

To help inform the implementation of the unwinding of the continuous enrollment provision, we conducted 5 virtual focus groups in late January and early February, shortly after federal legislation set an end date for the continuous enrollment provision. Groups included 39 adults who self-identified as having Medicaid coverage for themselves or had children enrolled in Medicaid across 12 states to learn about their experiences with Medicaid, awareness of the end of the continuous enrollment provision, experiences applying for and renewing coverage, and accessing care. We also explored the challenges they might face if they were to lose Medicaid coverage. Participants included a mix of adults by gender, race/ethnicity, age, length of time enrolled on Medicaid, and work and family status. Two groups were conducted in Spanish. KFF worked with PerryUndem Research/Communication to conduct the focus groups. Individuals who were able to participate in our groups needed to know that they were enrolled in Medicaid coverage, have two hours of time, a quiet space, a computer, and internet. These characteristics alone may not fully represent many Medicaid enrollees, so findings may not be generalizable to the entire Medicaid population. See Appendix Table 1 for demographic details about the participants. Key findings from our groups include the following:

• Many participants experienced worsening health and financial stability during the pandemic, but Medicaid was important in helping them access needed health care that was affordable.
• Awareness that Medicaid coverage had been protected during the pandemic was limited and most were not aware that disenrollments could start in April.
• All said that they would try to renew Medicaid coverage and participants said they want to hear about what to expect through multiple communication modalities and from different sources to ensure they would not miss an opportunity to renew coverage.
• Many participants were worried about losing Medicaid coverage because it would have negative implications for their health and finances. While some worried that they may no longer be eligible due to a change in income, many individuals worried about losing coverage even if their economic circumstance did not change. Under normal operations, people who are no longer eligible are disenrolled from Medicaid; however, a large number of people could be disenrolled in the coming year because of the continuous enrollment provision that has been in effect. Most said they would look for other coverage if they were no longer eligible for Medicaid, but expressed concerns that other coverage would not be affordable.

Key Themes

Experience with Medicaid and the Pandemic

Participants said Medicaid enables them to access health care services and medications for themselves and their children. Those with serious chronic health conditions and other health and mental health needs said having Medicaid means they can get medications and regular doctor’s visits to manage their conditions. In some cases, they say Medicaid coverage has meant access to life-saving treatments, surgeries and therapy services. While some participants noted problems accessing certain services, including dental care, most said Medicaid covers the services they need. Parents in the groups especially valued being able to access preventive and primary care, treatment for more serious conditions, and mental and behavioral health services for their children. A common theme expressed by participants was the peace of mind from knowing that they can get the care they need without having to worry about how they will pay for it. Several participants described getting Medicaid when they became pregnant and the importance of the coverage during their pregnancies and once their children were born.

Because I have a chronic disease, which is diabetes, and I have to go [to the doctor] every six months. Sometimes, with regular insurance, you have to pay a copay, and now, Medicaid pays for it. I take advantage of that. – 56-year-old, Hispanic male (Spanish-speaking), Arizona

I mean [Medi-Cal] does cover a lot, you know. I have to take a lot of medication now so, all my medications are covered, all my doctor visits. Before when I was uninsured, I didn’t even bother going to the doctor. So, once I went, I found out all these things that were wrong with me. So, it definitely helped. – 32-year-old, Asian male, California

It’s for my kids, obviously, but my son has asthma. It’s really important to me that he has insurance. He’s had two asthma attacks, where I’ve had to take him to urgent care, or to the emergency room at the hospital. I didn’t have to worry about how I was going to pay for that visit or all the services that they were going to provide. – 50-year-old, Hispanic female, Tennessee

In recent years, many participants had ongoing health and financial challenges, some of which were exacerbated during the pandemic. The pandemic was hard for many participants. Several lost jobs early in the pandemic and while some managed to find other full-time work, others were cobbling together part-time gig work or still not working. Many got sick with COVID-19; some said they had lingering side effects and one person reported developing long-COVID. Recent inflation pressures were adding to financial concerns for some participants. Several said buying food and paying for normal expenses has gotten harder and some were forced to move because they could no longer afford their rent. These health and financial challenges made affordable coverage through Medicaid even more valued than prior to the pandemic for a number of enrollees.

I’m customer service, I work with the general public and a lot of people in San Diego do take public transportation, so I have to be out there and on top of that, I ended up getting COVID. So that kind of screwed everything. I have COVID long haul now, so now my hours are all depending on how my body feels…sometimes I get 40 hours, sometimes I get 15, 20 hours. I don’t have set hours anymore because now with COVID it just, my income goes up and down. – 51-year-old, Hispanic male, California

Gig work just means that it’s penny to penny, paycheck to paycheck if you will. And like somebody mentioned earlier, you know, one week you’ve got 40 hours of work, the next week you have 20… can’t plan well. And so having the security of the Medicaid is everything. – 39-year-old, White female, Oregon

I don’t know, I have gotten into therapy over the last year and a half or so and I don’t know that I would be doing as well overall if I hadn’t and I wouldn’t be able to afford therapy or all the handful of medications I take every morning, if not for this [Medicaid]…- 42-year-old, White male, Michigan

Knowledge of the Continuous Enrollment Provision

Among focus group participants, awareness that Medicaid coverage had been protected during the pandemic was limited. Some states seem to have done a better job of communicating that coverage was being continued because of the pandemic, including Arizona, California, Colorado, and Texas, where some participants reported receiving notices saying their coverage had been renewed because of the pandemic. At the same time, other participants in these states and in other states claimed not to know about the provision, and most were unaware disenrollments would resume soon.

[I learned I had been automatically renewed] by a letter that I received. It was around November, saying that they renewed me again without me doing anything because of COVID, based on what they said in the letter. – 56-year-old, Hispanic male (Spanish-speaking), Arizona

It was in my portal, and they also sent me a letter in the mail to let me know that my kids had another year of Medicaid due to COVID-19. – 35-year-old, Hispanic female (Spanish-speaking), Texas

I was not informed of that by the State of Michigan. Seems like they, seems like it would, that should be something that could come out in one of the many letters they send. –  42-year-old, White male, Michigan

I think it’s [continuous enrollment] a good thing just because the cost of insurance. I mean if you have regular insurance nowadays you have the deductibles, you have, there’s still a lot of out-of-pocket costs and everything costs so much now that pharmaceuticals are going sky high. –  63-year-old, Black female, Arizona

Although most participants did not know that disenrollments in their states could begin as early as April 1, 2023, all said they would seek to renew their coverage although some were worried that they are at risk of losing coverage, especially as inflation concerns and health issues persist. All participants wanted to keep their coverage and planned to take steps to renew. While most participants had not heard that their states would be resuming disenrollments soon, some reported receiving a notice with this information or seeing it in their online account. Several participants who had changed jobs, gotten promotions, or increased their hours were worried they might lose coverage. Some were worried about losing coverage even if nothing changed in their economic circumstances. Many said they would seek help in trying to retain coverage if needed, from local assistance organizations, the local Medicaid/social service office, or from friends and family.

It’s kind of caught me off guard a little bit. I haven’t received any notice about [the end of continuous enrollment] so, uh, at least now I know like, I need to get my documents together. I haven’t heard about it and I haven’t received any notification from Medicaid at all. – 36-year-old, White female, Ohio

Every time I go to my account with my information, everything is written there. Before you log in, the whole message is there. How after March 31st, you’ll need to reapply or renew your benefits – 31-year-old, Hispanic female, Texas

The only reason I’ve been able to stay on Medicaid is because of this [continuous enrollment provision]. And I think I make like a thousand dollars over the limit for being qualified, but like I said, I’m paycheck-to-paycheck regardless, so I’m actually really concerned about not qualifying once this happens. – 32-year-old, White female, Oregon

I mean honestly my concern is just not totally understanding exactly what will disqualify me, so it would be nice to know more about that…nothing has really changed, but I still don’t trust it. – 39-year-old, White female, Oregon

Communicating with Medicaid

Most participants said they choose to receive communication from the Medicaid agency in multiple ways, including mail, email, text, and through their online accounts, so they do not miss important information about their coverage. Regardless of the preferred method for receiving information, most participants expressed concern about not wanting to miss information from Medicaid. Some participants said they prefer email, but others said their inbox was so full they worried important information would get lost. Participants in some states said they receive text messages and reminders; however, rules about text messaging vary by state. Similarly, participants in some states said they could receive notices through their online accounts but not everyone said they had that option. Even if participants preferred receiving notices and information through their online accounts, they also wanted to receive renewal reminders through other modes in case they forgot to check their accounts.

I have all of that [email, text, mail communications] because you just have to be aware now because…they don’t care if you didn’t get it. If you missed it, that’s it, you’re done you got to redo it all over again. – 34-year-old, Hispanic female, Arizona

For me, [communication] by email [is best]. But at the same time, it makes me wonder if maybe I might not get some mail that’s important…You get it once or twice a year, but it’s crucial information, and I wouldn’t want to not get that information. – 45-year-old, Hispanic male (Spanish-speaking), California

While many participants said Medicaid notices are clear and understandable, others found communications confusing, and some said they do not read the whole document. Most participants said they always read the Medicaid notices because they generally contain important information about their coverage. However, some participants admitted that sometimes they do not read all of the notices, in some cases because they felt the information was duplicative and unnecessary. Most participants said the notices clearly described any actions they needed to take and provided deadlines for renewing coverage or scheduling appointments. Some participants said they felt like they got conflicting information through their notices and providers or caseworkers and had to call the agency to help sort things out. Spanish speaking participants said they were able to get notices in Spanish, though some said they preferred to get the notices in English because some of the terminology used in the Spanish translations was unfamiliar to them.

Yeah, the [Medicaid notices are] clear. When you apply, they give you the information in whatever language you want to receive them in, so for me, they’re clear. – 39-year-old, Hispanic female (Spanish-speaking), Colorado

I have received some [notices] in the mail and the envelopes is bigger than a normal envelope and in black and bold letters it says your Texas Benefits. So, I normally open those right away. And I’ve never had any issues understanding what directions, you know, they’re trying to give me, or if I need to do anything. Because usually if I have to send something back, they’ll send me an e-mail with the link. – 50-year-old, Hispanic female, Texas

Sometimes you get the notices you’re told on the phone, for example, you’re approved everything’s done, you don’t need anything, we’ve got everything we need. Then you get a notice in the mail that oh, I need all of these things that they just told you didn’t need. So now you’re confused…it is like kind of in circles…And then you call, you’ve got to wait a billion hours on the phone to get somebody through, then they don’t know what you’re talking about. – 34-year-old, Hispanic female, Arizona

As far as Spanish, I think they use a term very rigidly, not how someone would normally speak it or understand it. That’s why people who understand it easily in English maybe won’t understand it [in Spanish]. – 35-year-old, Hispanic male (Spanish-speaking), Missouri

Participants had mixed experiences with calling the Medicaid agency. Participants may call the Medicaid agency to discuss issues with current coverage or about renewals. Some participants reported very long wait times calling Medicaid while others said they were only on hold for just a few minutes, and a participant in Arizona said wait times had gotten better recently. Those who faced long wait times described the calls as stressful. Prior to the pandemic, when calls were related to renewal of coverage participants said they were nearly always able to get this issue resolved, although sometimes the calls took several hours. However, participants seemed to have less success getting questions about participating providers or how to access certain services answered.

So, I was on hold with the Ohio Medicaid office for four hours trying to get verified for mine and my husband’s Medicaid. Yeah it took me four hours to get through to talk to someone. – 36-year-old, White female, Ohio

Despite broad-based efforts in many states to conduct outreach, most participants said they had not been asked by their Medicaid agency to update their contact information to prepare for the unwinding of the continuous enrollment provision. While some participants said they had recently updated their contact information after moving, only a handful said they had received a message from their state asking them to do so. Among those who had updated their information recently, they described the process as straightforward. Some updated their information through their online account, while others called the Medicaid agency to provide the information. They also noted the importance of updating their contact information with their managed care organization (MCO) or primary care physician, which they did as a separate step.

In the letters that they send me, reminder letters, they always remind me when I make a change. The same when you call on the phone, they ask if you’ve changed your address, phone number, or email. Because those are the three ways that they contact you. If there’s any changes, you can do it over the phone, and they’ll change it for you right away. – 50-year-old, Hispanic female (Spanish-speaking), Tennessee

It was fairly easy [to update contact information]. I just went through the app and did it and then I had to go through all of the PCP… or I had to go through PCP and everybody else and updated it. It took a minute, but I got it done. – 35-year-old, Hispanic female, Michigan

When it comes to communications about the unwinding of the continuous enrollment provision, participants said they want to hear about what to expect through multiple communication modalities and from different sources. Given the significance of the potential impending changes to their coverage, participants wanted states to communicate directly about the changes in many ways, using mail, email, text, and though their online accounts—the same ways in which participants receive regular notices. Because these changes are so significant, several also said they would like a personal phone call telling them what to expect. When asked specifically about using text messages, some people said they thought it was a good way to communicate, while others worried about fraud and that some people might ignore the message. Participants stressed the importance of making sure people understand the urgency of the information. They wanted the information to clearly indicate what actions people need to take and when and they wanted it early enough that they would have time to take the necessary steps to renew their coverage. Beyond communications from the Medicaid agency, participants also wanted to hear information from their doctors, from the media, and through social media. Some mentioned advertising on billboards, buses, and other places where people would likely see the information.

I think that besides mail, e-mail also, but bold, the March 31st should be in bold, I mean it should be, something that really stands out to let you know, this isn’t just the standard mail that you get, this is really serious or important to pay attention to it. – 63-year-old, Black female, Arizona

A text message, if it’s something more informative in general for all people, I think a text message would be the easiest, and in a way that most or almost all people would learn about it. – 39-year-old, Hispanic female (Spanish-speaking), Colorado

I don’t think text message because it’s a really public thing. As opposed to email, which is something a little more private. The same thing with social media. I think that’s a bad idea. – 20-year-old, Hispanic female, (Spanish-speaking), New Jersey

I would say get it to the doctors, the PCPs themselves and have a general service message from them saying, hey, if you have any customers that are under these government funded programs… to go ahead and tell them specifically. – 39-year-old, White male, Arizona

Applying for and Renewing Medicaid

Many participants had applied for Medicaid online and described the process as easy. For most participants, the online application was easy to complete and did not take a long time. But some, particularly those who were applying based on disability, had to provide what they described as a lot of paperwork and experienced delays in having coverage approved. Many states have integrated the Medicaid application with other social service benefits, such as SNAP and TANF. A couple of participants said they were able to apply for Medicaid and SNAP at the same time and one participant said she got Medicaid when she applied for unemployment benefits during the pandemic.

I have been enrolled since June of this past year, when I was laid off from a job. But I recall the process being fairly, fairly easy actually to get coverage. – 29-year-old, Hispanic male, Oregon

I applied when I found out I was pregnant last year around May, and the process was very easy, I applied online and they contacted me pretty quickly and they sent out everything. – 21-year-old, Black female, Michigan

It’s never been hard for me to fill out an application or anything because the process is easy. Now, everything is online. – 50-year-old, Hispanic female, Tennessee

The process for applying for both me and my husband was extreme. Like they wanted so much paperwork and it took us about two months to finally get qualified for it. – 36-year-old, White female, Ohio

Participants described a range of experiences renewing their Medicaid coverage, but many said the process was simple, particularly during the past few years. While states have not been able to disenroll people from Medicaid, many states have been continuing to process renewals during the continuous enrollment period using ex parte (verifying eligibility through data matches) and through more traditional renewal processes. Many participants said their coverage had been auto-renewed—they described receiving a notice from the state saying their coverage had been renewed for another 12 months—while others described receiving a renewal packet or form in the mail or a notice to complete the renewal form online to maintain their coverage. Still others reported having to submit documentation to the state to confirm continued eligibility. Variation in participant experiences could be due to different renewal policies across states but could also result from different requirements depending on a person’s eligibility pathway. For participants who had to take steps to complete the renewal process, most said they received notices in advance of their renewal date giving them enough time to complete the forms. At least one person noted that if they didn’t respond to the initial notice, the state would usually follow up within another notice or renewal packet. Some who have had Medicaid for a longer time said the process to renew coverage has gotten easier over time.

Every year they sent me something before to sign, and it stated that for renewal, we just want you to go over the details and make sure nothing changed, or if something changed write it down and they have me just sign on paper. And then a couple years after that I started just getting auto renewal notices where they just sent you a piece of mail saying, oh you’ve been renewed and your MediCal is active through the next year. – 32-year-old, Asian male, California

[Medicaid] sent me the form at the beginning of December, and they give you a month. It said, “You have to fill out this form if there have been changes in your household.” I filled out the form, and it gave a deadline. I put the name and everything, and I sent it back. – 39-year-old, Hispanic female (Spanish-speaking), Colorado

When I had Medicaid for the first time…you had to go there, physically, to the office once a year, turn in all your paperwork, and not be missing anything…Recently, for me, it’s been a drastic change because everything is online…I find it super easy, compared to how it was in the past. – 46-year-old, Hispanic male (Spanish speaking), Florida

In managing renewals pre-pandemic, some participants shared that there was a time when they did not receive the renewal packets or notices sent through the mail and either lost coverage for a period of time or nearly lost coverage before renewing. In some cases, participants knew their coverage was about to lapse and contacted their case worker or called the Medicaid agency to complete the renewal over the phone or to request that the renewal information be resent. Other participants said they did not realize their coverage had been terminated until they went to the doctor’s office or hospital. Although participants in these groups did not experience adverse health effects during the gap in coverage, they described feeling stressed and anxious while they tried to get their coverage reinstated.

They’re supposed to send you the renewal packet at least one month in advance to give you time to fill all that out…Unfortunately, the packet never came through, I had to request a new packet, I missed my window. I ended up almost losing my health insurance until I asked my caseworker who…got me the renewal packet, a different one, and the new appointment date and requested an emergency appointment to renew, because just lapsing even a couple of days without insurance can be scary. – 51-year-old, Hispanic male, California

Risks and Challenges Tied to Potentially Losing Medicaid

If they no longer qualified for Medicaid, participants said they would look for coverage through the Marketplaces or possibly from their employer, but affordability was an overriding concern. Most were aware of the health insurance Marketplaces and said they would search for coverage there. Awareness of how to apply for coverage through the Marketplace was fairly high; however, many who previously had Marketplace coverage recounted having difficulty affording premiums and deductibles, even when they had more stable employment. Participants may not have been aware that they might be eligible for zero premium subsidies in the Marketplace since those enhanced subsidies became available in 2021 after many participants had already gained Medicaid coverage. Some said they could potentially obtain insurance through an employer, but worried premiums would not be affordable. Several said they would become uninsured, and some parents said they would forego coverage for themselves but would make sure they could get other coverage for their children. All participants expressed concern over the disruption that losing Medicaid would cause. Even if they could find affordable insurance, they worried about having to find new doctors, particularly for their children.

Yeah, I’d go [to the Marketplace] there to see what plan, and if the price would work for me each month, whether I can afford it. – 56-year-old, Hispanic male (Spanish-speaking), Arizona

I might just have to go through my job’s insurance program they have [if I lose Medicaid]. It’s super expensive but I probably wouldn’t even get insurance for myself. I would just get it for my kids. I just worry about my kids first. – 37-year-old, Hispanic male, Texas

I don’t think [there are other options]. I think when you lose Medicaid, there won’t be anything similar. I think there would be some type of coverage, but it would definitely be at a cost and not with the same coverage as Medicaid. – 39-year-old, Hispanic female (Spanish-speaking), Colorado

I feel like with the cost of everything going up, we’re just breaking even with paying rent and buying groceries. If we were to lose the Medicaid coverage and have to go back to the healthcare Marketplace and have to pay for medical needs, maybe we’ll cover our rent but we’re not going to be able to buy the same groceries. We’re going to have to stretch everything out. We’re not going to have a lot of personal money. It would definitely affect us. – 36-year-old, White female, Ohio

I’d have to go back to what I did before Medicaid. [Being uninsured] is difficult because me and everybody else go to the same free place to get help. So, there’s a long waiting list to get resources and things like that. You’re not guaranteed anything. At least with Medicaid you’re guaranteed you can get medical help. – 60-year-old, White female, Mississippi

Losing Medicaid would pose significant challenges for participants that they said would affect their health as well as their finances. Many participants are managing serious health issues for themselves, their spouses, or their children and losing Medicaid coverage would disrupt their access to care and ability to manage their conditions. They used terms like “terrifying” and “devastating” to describe how they would feel if they no longer had Medicaid. Participants also noted that losing coverage right now, with inflation still relatively high, would create additional financial burdens as they are already struggling to pay current expenses and would have a hard time affording new costs for health insurance. While some worried that they may no longer be eligible due to a change in income, many individuals worried about losing coverage even if their economic circumstance did not change as disenrollments resume for all enrollees over the next 12 to 14 months.

I think it’d affect [me] in every way. Mentally because, obviously, losing a low-cost service and paying for something as costly as private insurance would affect you emotionally, financially. It’s really important right now to have that type of service like Medicaid. – 34-year-old, Hispanic male, Missouri

My baby has to be constantly going in for her checkups. She’s a little baby that’s seen every two months for her shots and everything. I worry because, if she didn’t have Medicaid, maybe I could refrain from going to the doctor. But her shots are a must, so just thinking that she won’t have insurance is something that worries me. – 39-year-old, Hispanic female (Spanish-speaking), Colorado

If it wasn’t for Medicaid, I wouldn’t be able to get the medication I need to function…I mean just to be able to get out of bed and spend time with family, be able to leave the house, I mean it is so important. And I’m scared for all these people because if they lose their Medicaid nine times out of ten, they’re going to be out there without insurance. – 51-year-old, Hispanic female, Texas

[When] my daughter was young we did not have insurance at all. I was a waitress and a single mom, and it was terrifying that I knew every time she got sick, I didn’t have money to take her to the doctor, so I just had to take her into the ER and just get a bill that I knew was going to go to collections because I couldn’t pay it….To being able to be on Medicaid where it’s like okay, you’re sick you need to go to the doctor, let’s go. It goes from this feeling of being like a burden on society and not feeling like you deserve even medical care, to feeling like, ‘Oh I’m a valid human being who I deserve to be able to receive care in this country that we’re in.’– 44-year-old, Black female, Oregon

He [her son] has surgery coming up, but then he also sees a behavioralist, he has childhood anxiety and some other things going on that we have been seeing her for a year, but we’re just really starting to dig in and get things figured out. So, he would lose all of that I feel like because even if I got something through the Marketplace, I don’t know that I would be able to afford to pay copays for all of his visits, because those would add up too. So, yeah it’s just terrifying. It would be devastating. – 39-year-old, White female, Oregon

Looking Ahead

After a three-year pause, states will resume Medicaid disenrollments beginning April 1. All current Medicaid enrollees will undergo a redetermination over the next 12 to 14 months, and unlike during the past three years, enrollees could be disenrolled if they are no longer eligible or if they do not complete the renewal process. While there are federal rules and guidelines about enrollment and renewal processes, how Medicaid enrollees will be affected will vary across states because of differences in renewal polices, outreach and communication strategies, and in the capacity of staff to handle the volume of renewals. State policy choices and how those policies are implemented will be important factors in how many still eligible enrollees are able to retain Medicaid or transition to other sources of coverage if they are not still eligible for Medicaid.

The lack of awareness that Medicaid coverage had been protected during the pandemic and that disenrollments could start in April suggests enhanced communication efforts from states, providers, and community-based organizations using multiple modes may be important. While participants in our focus groups were generally aware of the need to renew their coverage and intended to act in response to a renewal notice, continued state efforts to increase ex parte renewal (automatic renewals using available data) rates and to simplify the process when individuals need to take action to renew their coverage can help promote continuity of coverage for those who remain eligible for Medicaid. States can also adopt strategies to help those who are no longer eligible for Medicaid transition to other coverage options. However, some states may be concerned about the administrative resources required, as well as the costs associated with continued elevated Medicaid enrollment.

Although knowledge among participants about the availability of Marketplace coverage was high, concerns about the affordability of that coverage may prevent people from exploring their options, even though enhanced subsidies have made ACA coverage more affordable. Facilitating account transfers to the Marketplace for people whose Medicaid coverage is terminated and providing information on the availability of enhanced Marketplace subsidies could help increase the number of people who enroll in Marketplace coverage and avoid becoming uninsured.

Appendix

Access to medication abortion has emerged as a central issue following the Dobbs decision overturning Roe v. Wade. There is ongoing litigation in four federal cases about the FDA’s approval and regulation of mifepristone, one of the two drugs used in medication abortion. Mifepristone, approved by the FDA in 2000, has a long record of safety and effectiveness and has been used by more than 5 million people in the United States.

In the most watched case, Alliance for Hippocratic Medicine v. U.S. Food and Drug Administration, the court could rule to invalidate the FDAs 23-year-old approval of mifepristone or potentially limit the distribution of this drug for abortion, even in states where abortion remains legal. The ruling could also limit the availability of misoprostol, the other drug used in the medication abortion regimen. While these cases focus on abortion, the outcome of the litigation could have broader impact on the FDA’s future authority to regulate a wide range of other drugs.

In advance of the decision, we’re sharing key KFF resources that explain the medication abortion landscape related to what’s at stake and how women could be affected.

The Availability and Use of Medication Abortion 

Examine medication abortion, how it is used and regulated, the role of the drug in self-managed abortions, and an analysis of the intersection of federal and state regulations affecting its provision and coverage.

Key Facts on Abortion in the United States

Answer key questions about abortion in the United States.

State Health Facts

Get up-to-date and easy-to-use health data for all 50 states, the District of Columbia, and the United States. The Women’s Health category includes indicators for abortion.

State Profiles for Women’s Health

Explore the latest national and state-specific data and policies on women’s health, including abortion policies.

KFF Health Tracking Poll: Early 2023 Update On Public Awareness On Abortion and Emergency Contraception

Study the results of our February KFF Health Tracking Poll, which found widespread public confusion about the medication abortion pill and whether abortion is legal at the state level.

Abortion Bans May Limit Essential Medications for Women with Chronic Conditions

Explore an analysis about the use of methotrexate and misoprostol; the majority of those who use these drugs are women who are not pregnant but have diagnoses for other chronic conditions and rely on these medications to manage their health.

Abortion in the U.S. Dashboard

Review a variety of resources about abortion in the United Sates and track state abortion policies and litigation following the overturning of Roe v. Wade. 

Trust in public health officials declined over the course of the pandemic, particularly among Republicans. Over the course of the pandemic, KFF polling has found a decline in trust of public health officials – most notably among Republicans. In 2022, majorities of Democrats continued to say they have at least a fair amount of trust in the CDC, the FDA, and Dr. Fauci, while less than half of Republicans had the same level of trust in public officials as they did at the beginning of the pandemic.

Confusion and belief in misinformation about COVID-19 is common. Misinformation about health care topics is nothing new, but social media, the polarization of news sources, and the pace of scientific development on COVID-19 all contributed to an environment that made it easier than ever for misinformation and deliberate disinformation to spread. In late 2021, nearly eight in ten adults said they had heard at least one of eight different false statements about COVID-19 and that they believed it to be true or were unsure if it was true or false. Unvaccinated adults were more likely to report believing COVID misinformation than those who are vaccinated.

Early gaps in COVID-19 vaccination rates between Black, Hispanic, and White adults were largely eliminated by the end of 2021. When COVID-19 vaccines first became publicly available in early 2021, Black and Hispanic adults were less likely than White adults to report being vaccinated. This gap reflected both difference in vaccine access, such as not having paid time off work to get vaccinated or not having a trusted place to get the vaccine, as well as concerns and questions about vaccine safety and side effects. Over time, as public health officials and community groups worked to provide access and offer answers to people’s questions, this gap narrowed and eventually closed. Recent surveys find that the share of Black and Hispanic adults who report being vaccinated is roughly equal to the share among White adults. In fact, the share of White adults who say they will “definitely not” get vaccinated has been higher than the shares among Black and Hispanic adults in most recent polls.

Partisanship played a strong role in self-reported public health behaviors. Since the beginning of the pandemic, KFF COVID-19 Vaccine Monitor surveys have found a strong relationship between partisanship and people’s willingness to take preventive actions to protect themselves and others from COVID-19. Democrats have been consistently more likely than Republicans to report wearing masks, social distancing, and getting vaccinated for COVID-19. Immunocompromised people, regardless of partisanship, are also among the groups most likely to report taking precautions.

The COVID-19 pandemic has had broad impacts beyond health. The pandemic has taken a heavy toll on adults and children over the last three years. Whether it comes to their education, work, finances, mental or physical health, many – regardless of race, ethnicity and income – have reported feeling the negative effects of the pandemic. Parents are particularly likely to say their children have been negatively affected, with more than six in ten saying the pandemic has had a negative effect on their children’s education and nearly as many saying the same about their children’s mental health. About half of all adults say that the pandemic has had a negative effect on their own mental health, while four in ten say the same about their physical health and their financial situation.

As we pass the three-year mark since the World Health Organization characterized the COVID-19 pandemic on March 11, 2020, data from the U.S. show that cases and deaths have remained relatively low through the second half of 2022, over 8 in 10 people (81%) had received at least one COVID-19 vaccination dose as of February 23, 2023, while only 17% of people ages five and older had received an updated bivalent booster dose. Over the course of the pandemic, racial disparities in cases and deaths have widened during variant surges and narrowed when cases and deaths fall. However, overall, Black, Hispanic, and American Indian and Alaska Native (AIAN) people have borne the heaviest health impacts of the pandemic, particularly when adjusting data to account for differences in age by race and ethnicity. While Black and Hispanic people were less likely than their White counterparts to receive a vaccine during the initial phases of the vaccination rollout, the disparities in the share that have received at least one COVID-19 vaccination dose have narrowed over time and reversed for Hispanic people. Despite this progress, a vaccination gap persists for Black people and Black and Hispanic people are about half as likely as their White counterparts to have received an updated bivalent booster dose.

This data note presents an update on the status of COVID-19 cases and deaths by race and ethnicity as of December 2022 and vaccinations by race/ethnicity as of February 2023, based on federal data reported by the Centers for Disease Control and Prevention (CDC).

What is the status of COVID-19 cases and deaths by race/ethnicity?

Racial disparities in COVID-19 cases and deaths have widened and narrowed over the course of the pandemic, but when data are adjusted to account for differences in age by race/ethnicity, they show that AIAN, Black, and Hispanic people have had higher rates of infection and death than White people over most of the course of the pandemic. 

Early in the pandemic, there were large racial disparities in COVID-19 cases. Disparities narrowed when overall infection rates fell. However, during the surge associated with the Omicron variant in Winter 2022, disparities in cases once again widened with Hispanic (4,404.9 per 100,000), AIAN (4,148.6 per 100,000), Black (3,029.4 per 100,000) people having higher age-adjusted infection rates than Asian (2,873.4 per 100,000) and White people (2,826.4 per 100,000) as of January 2022 (Figure 1). Following that surge, infection rates fell in Spring 2022 and disparities once again narrowed. During Summer 2022, there was a slight rise in infection rates with higher age-adjusted infection rates for Hispanic, AIAN, Black, and Asian people compared to White people. Between Fall/Winter 2022, infection rates fell across groups, but as of December 2022, the age-adjusted COVID-19 infection rates were highest for Hispanic people (488 per 100,000) and AIAN people (440 per 100,000). White and Asian people had the lowest infection rates at 313 per 100,000 and 329 per 100,000, respectively.

While death rates for most groups of color were substantially higher compared with White people early in the pandemic, since late Summer 2020, there have been some periods when death rates for White people have been higher than or similar to some groups of color. However, age-adjusted data show that AIAN, Black, and Hispanic people have had higher rates of death compared with White people over most of the pandemic and particularly during surges. For example, as of January 2022, amid the Omicron surge, age-adjusted death rates were higher for Black (37.6 per 100,000), AIAN (34.8 per 100,000), and Hispanic people (30.0 per 100,000) compared with White people (23.5 per 100,000) (Figure 1). Following that surge, disparities narrowed when death rates fell. As of December 2022, age-adjusted death rates were similar across groups at 4.4 per 100,00 for White people, 3.8 per 100,000 for AIAN people, 3.7 per 100,000 for Black people, 3.5 per 100,000 for Hispanic people, and 3.2 per 100,000 for Asian.

Despite these fluctuations in patterns of cases and deaths by race and ethnicity over time, total cumulative age-adjusted data show that AIAN and Hispanic people have had higher risk for COVID-19 infection and AIAN, Hispanic, and Black people have had higher risk for COVID-19 deaths compared with White people. As of December 28, 2022, cumulative age-adjusted data showed that AIAN and Hispanic people were about 1.5 times as likely to be infected with COVID-19 compared with White people (Figure 2). AIAN people were twice as likely as White people to die from COVID-19, and death rates for Hispanic and Black people were 1.7. and 1.6 times higher than White people, respectively. AIAN, Black, and Hispanic people also have had increased risk of hospitalization due to COVID-19 compared with White people.

What are COVID-19 vaccination and booster patterns by race/ethnicity?

While disparities in the uptake of at least one COVID-19 vaccination dose have narrowed over time and have been reversed for Hispanic people, they persist for Black people. KFF analysis shows that at both the federal and state level, there were large gaps in vaccination for Black and Hispanic people in the initial phases of the vaccination rollout, which narrowed over time and eventually reversed for Hispanic people. Despite this progress, a vaccination gap persists for Black people. According to the CDC, over 8 in 10 people (81%) had received at least one COVID-19 vaccination dose as of February 23, 2023, and race/ethnicity was known for 76% of people who had received at least one dose. Based on those with known race/ethnicity, about half (51%) of Black people had received at least one dose compared with 57% of White people, roughly two-thirds (67%) of Hispanic people, and over seven in ten Native Hawaiian and other Pacific Islander (NHOPI) (71%), Asian (73%), and AIAN (78%) people (Figure 3).

Overall, few people have received the updated bivalent booster vaccine dose, and Black and Hispanic people are about half as likely as White people to have received this booster so far. The updated bivalent boosters protect against both the original virus that causes COVID-19 and the BA.4 and BA.5 Omicron variants. These boosters became available for people ages 12 years and older on September 2, 2022, and for people ages 5-11 years old on October 12, 2022. The CDC recommends that people ages 5 years and older receive one bivalent booster at least 2 months after their last COVID-19 vaccine dose. The CDC reports that, overall, 17% of people over age five have received the updated bivalent booster vaccine dose as of February 23, 2023, with race/ethnicity data available for 90% of recipients. Based on those with known race/ethnicity, 21% of eligible Asian people had received a bivalent booster dose, higher than the rate for White people (16%). Rates were slightly lower for eligible AIAN (14%) and NHOPI (11%) people, while eligible Black (9%) and Hispanic 8%) people were about half as likely as their White counterparts to have received the bivalent booster dose (Figure 3).

Discussion

While disparities in cases and deaths have widened and narrowed over the course of the pandemic, age-adjusted data show that AIAN, Black, and Hispanic people have had higher rates of cases and death compared with White people over most of the course of the pandemic and that they have experienced overall higher rates of infection, hospitalization, and death.

Data point to significantly increased risks of COVID-19 illness and death for people who remain unvaccinated or have not received an updated bivalent booster dose. During the initial vaccine rollout, Black and Hispanic people were less likely to receive vaccines than their White counterparts. However, disparities in the uptake of at least one COVID-19 vaccination dose have narrowed over time and reversed for Hispanic people, though they persist for Black people. Despite this progress in initial vaccination uptake, overall uptake of the updated bivalent booster dose has been slow so far, and eligible Black and Hispanic people have been about half as likely to have received an updated booster than their White counterparts.

Overall, these data show that although the pandemic has contributed to growing awareness and focus on addressing racial disparities, they persist, reflecting the underlying structural inequities that drive them. The findings highlight the importance of a continued focus on equity and efforts to address inequities that leave people of color at increased risk for exposure, illness, and death as well as to close gaps in access to health care, as COVID-19 recovery continues.

On March 11, 2020, the World Health Organization (WHO) first characterized COVID-19 as a “pandemic,” stating, “We have rung the alarm bell loud and clear.” As we mark three years since then, here are 10 key data points that illuminate the challenges, and progress, made to date. All data provided are as of Feb. 28, 2023, unless otherwise noted.

1,095

The number of days elapsed between March 11, 2020, to March 11, 2023

March 11, 2023 marks 1,095 days since WHO first characterized COVID-19 as a pandemic.  Even prior to that date, on January 30, 2020, the WHO had already declared COVID-19 to be a “Public Health Emergency of International Concern” (PHEIC)  and the U.S. government declared COVID-19 to be a “Public Health Emergency” (PHE) on Jan. 31, 2020. The U.S. PHE has been renewed every 90 days since, although the Biden administration recently announced that the PHE will end on May 11, 2023.

6,859,093

Global number of COVID-19 deaths to date*

Since the pandemic began, there have been almost 7 million reported COVID-19 deaths worldwide. This is likely an underestimate, as many COVID deaths have gone unreported and uncounted. Estimates using excess death calculations place the true toll at closer to 15 to 20 million, or even more.

1,115,637

U.S. number of COVD-19 deaths to date

Since the start of the pandemic, more than 1.1 million of all reported COVID-19 deaths have been in the United States.

758,390,564

Global number of COVID-19 cases to date

There have been more than three-quarters of a billion confirmed COVID-19 cases to date, likely a fraction of the true number of SARS-CoV-2 infections, the virus that causes COVID. An accurate and up-to-date picture of where and how much the virus is transmitting has been challenging given limited testing, imperfect surveillance and reporting systems, and other factors.

103,268,408

U.S. number of COVID-19 Cases to date

More than a hundred million COVID-19 cases have been reported in the U.S. to date.

71%

Share of global population vaccinated against COVID-19

Overall, seven in 10 people worldwide have received at least one dose of a COVID-19 vaccine, and 65% have been fully vaccinated. However, much smaller shares have received a booster shot. In low-income countries, fewer than three out of 10 people have received at least one dose of a vaccine.  More information on vaccine coverage is available here.

81.2%

Share of U.S. population vaccinated against COVID-19

As of February 23, about 8 in 10 people in the U.S. have received at least one vaccine dose and 69.3% have been fully vaccinated against COVID-19, but the share who have received the updated booster, among those eligible, remains quite low, at just 17.2%.

671,582,379

Total number of vaccine doses administered in the U.S.

In the two years since COVID-19 vaccines have become widely available, over 671 million doses have been administered in the U.S., for a population that stands at approximately 330 million.

683,700,000

Number of vaccine doses delivered by the U.S. government for global use

In 2021, the U.S. government pledged to donate over 1 billion doses of COVID-19 vaccines to countries in need. As of February 2023, the U.S. had delivered over 680 million of these doses, and is the largest government donor to COVID-19 vaccination efforts.  The difference between total vaccines pledged and those delivered largely reflects increasing supply and falling demand for COVID-19 vaccinations globally.

Five

Number of named variants of concern

SARS-CoV-2 evolves and changes as it spreads over time, which has sometimes given rise to new “variants of concern”, or genetic changes in the virus with potentially harmful implications for public health. Since the original version of the virus emerged, WHO has identified 5 different variants of concern: Alpha, Beta, Gamma, Delta, and Omicron (the dominant global variant now in circulation).

*Case and death numbers used here are based on reports, and do not account for undercounts including in countries with very large populations, such as India and China.