More than three years into the COVID-19 pandemic, about half (53%) the public says they would likely get an annual COVID-19 vaccine if offered similar to an annual flu shot, the latest KFF COVID-19 Vaccine Monitor finds. This includes about a third (32%) who would be “very likely” to do so.

The findings provide a window into the potential uptake of an annual COVID-19 vaccine, which the Food and Drug Administration has raised as a potential option to provide future protection from the virus. 

Larger shares of people who typically get an annual flu shot (76%) say they are likely to get an annual COVID-19 vaccine than those who don’t normally get a flu shot (26%).Not surprisingly, the vast majority (81%) of people who are already vaccinated and boosted against COVID-19 say they would be likely to get an annual shot. About four in 10 (42%) of those who have been vaccinated but not boosted say they would at least somewhat likely get an annual shot, while about three-quarters (73%) of those who are unvaccinated or only partially vaccinated say are “not at all likely” to get an annual shot.

COVID-Free?

Nearly a third (32%) of all adults nationally say they have never tested positive for COVID-19 or never thought they’ve had the virus, and the new survey examines their experiences.This never-had-it group includes nearly half (46%) of adults ages 65 and older, who generally had earlier access to the vaccines due to their high risks. A larger share of Democrats (36%) than Republicans (25%) say they’ve never gotten the COVID-19, while the shares are similar among those who were vaccinated (32%) and unvaccinated (29%).Almost two thirds (64%) of those in the never-had-it group attribute their success in avoiding the virus to being careful and taking precautions, more than twice the share that say they were lucky (29%). In comparison, few (6%) believe it is because COVID-19 isn’t really present in their area.

When asked to say in their own words the main reason why they think they haven’t gotten COVID-19, about a quarter (24%) cite avoiding crowds or staying home. Other reasons include having a good immune system and generally being healthy (14%), wearing masks (11%), being vaccinated (10%), and generally being careful and taking precautions (10%). A small share (6%) say they believe it was good luck. 

Other findings include:

• Nearly a quarter (23%) of adults say they’ve gotten the latest bivalent COVID-19 booster, which has been available since September. Similar shares say they have received an earlier booster shot (25%) or have gotten their initial course of vaccinations but no booster (25%). That leaves slightly more than a quarter (27%) who say that they are either partially vaccinated or not vaccinated at all.
• Half (49%) of adults say they’ve heard at least something about the Biden administration’s plan to end the COVID-19 public health emergency on May 11.
• Similar shares of the public say that the end of the public health emergency will have a positive (20%) or negative (21%) impact on them and their families, though most (59%) say that it will have no impact. Larger shares of Hispanic (33%) and Black (29%) adults, as well as those in low-income households (31%), say the emergency’s end will hurt them and their families.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted from March 14-23, 2023, online and by telephone among a nationally representative sample of 1,271 U.S. adults, in English and in Spanish. The margin of sampling error is plus or minus 3 percentage points for the full sample. For results based on other subgroups, the margin of sampling error may be higher.

The KFF COVID-19 Vaccine Monitor is an ongoing research project tracking the public’s attitudes and experiences with COVID-19 vaccinations. Using a combination of surveys and qualitative research, this project tracks the dynamic nature of public opinion as vaccine development and distribution unfold, including vaccine confidence and acceptance, information needs, trusted messengers and messages, as well as the public’s experiences with vaccination.

The Trump Administration aimed to reshape the Medicaid program by newly approving Section 1115 waivers that included work and reporting requirements as a condition of Medicaid eligibility. However, courts struck down many of these requirements and the Biden Administration withdrew these provisions in all states that had approvals. After these withdrawals, in April 2022 the Supreme Court dismissed pending appeals in cases that had found work requirement approvals unlawful. However, these provisions remain in place in Georgia, as a Federal District Court judge vacated the Administration’s rescission of work and premium requirements in the Georgia Pathways waiver. Additionally, other states have indicated they may pursue work requirement waivers in the future, and some Congressional Republicans have recently discussed a federal Medicaid work requirement. This Waiver Watch summarizes the recent history of work requirements, the current status of Georgia’s waiver, and key state and federal issues to watch.

What is the recent history and current status of work requirements in Medicaid?

In a departure from previous administrations, the Trump Administration approved Section 1115 waivers that conditioned Medicaid coverage on meeting work and reporting requirements, but the Biden Administration withdrew these approvals. Thirteen waivers with work requirements had been approved during the Trump administration. Following the Biden Administration’s withdrawals, in April 2022 the Supreme Court dismissed pending appeals in cases that had found work requirement approvals unlawful. The Supreme Court’s dismissal does not preclude future presidential administrations from approving new Section 1115 work requirements. To survive an expected legal challenge, the administrative record in any future approvals would likely have to support the conclusion that such waivers would further Medicaid program objectives.

As most Medicaid enrollees are already working or face barriers to work, work and reporting requirements may result in coverage loss among eligible enrollees without increasing employment. Prior to the pandemic, the majority (63%) of non-elderly adult Medicaid enrollees who did not qualify based on a disability were already working full- or part-time. Most who were not working would likely meet exemptions from work requirement policies (e.g., had an illness or disability or were attending school), leaving just 7% of these enrollees to whom work requirement policies could be directed. Although few Medicaid work and reporting requirements were ultimately implemented due to litigation, state withdrawals, and/or pauses during the COVID-19 pandemic, available implementation data from Arkansas suggests that these requirements were confusing to enrollees and result in substantial coverage loss, including among eligible individuals.

What is the status of Georgia’s waiver?

Although CMS withdrew the work and premium requirement components of Georgia’s waiver, these provisions remain in place after a federal judge vacated the CMS rescission. In December 2021, CMS rescinded work requirement and premium authorities that the Trump Administration had approved as part of a limited coverage expansion in Georgia’s waiver—an action that the state subsequently challenged in court. In August 2022, a Federal District Court judge issued a decision in favor of the state, vacating CMS’s rescission thus reinstating these provisions. Although CMS generally reserves the right to withdraw waiver authorities at any time, the judge found that its rescission of Georgia’s waiver provisions was arbitrary and capricious due to agency errors, including that it failed to weigh that the waiver would have increased Medicaid coverage. CMS did not appeal this decision. Georgia Governor Brian Kemp allocated $52 million in his proposed state fiscal year (FY) 2024 budget to implement the Georgia Pathways program beginning July 1, 2023.

Once implemented, Georgia’s waiver will expand eligibility to 100% of the federal poverty level (FPL), with initial and continued enrollment conditioned on meeting work and premium requirements. These and other provisions of the Georgia Pathways waiver, including additional eligibility and benefit restrictions, are summarized in more detail in Table 1. The work requirement would apply to enrollees below age 65, with “good cause exceptions” (for those who cannot fulfill the requirement in a given month due to a circumstance such as a family emergency) and “reasonable accommodations” (to enable individuals with disabilities to meet the requirement) available. The state originally estimated that the Georgia Pathways waiver would provide coverage to about 64,000 individuals—significantly less than the estimated 269,000 uninsured individuals in the Medicaid coverage gap (parents with incomes that exceed Medicaid eligibility levels but are below the FPL, plus childless adults with incomes below the FPL) who could be covered if Georgia adopted the ACA Medicaid expansion.

What are key issues to watch?

Looking ahead, key questions to watch will play out at the state and federal levels:

• How will implementation of the Georgia waiver go? It remains to be seen exactly how many currently uninsured individuals under 100% FPL will meet the work (as well as premium) requirements necessary to enroll in the new coverage program. Looking ahead, Section 1115 monitoring and evaluation requirements will require Georgia to track and report the number of enrollees who gain and maintain coverage.
• Will other states pursue work requirements? Several other states have indicated they may pursue work requirements, but unlike Georgia, these states have already adopted Medicaid expansion and would not be adding new coverage. In February 2023, Arkansas Governor Sarah Huckabee Sanders directed the state to submit a new work requirement waiver request with a proposed effective date of January 2024. In both Iowa and West Virginia (two states that did not previously pursue work requirement waivers), proposed state legislation would direct each state to seek waivers that include work requirements and to resubmit such requests periodically until approval. Finally, in March 2023, North Carolina Governor Roy Cooper signed a law that would direct the state to expand Medicaid (contingent on appropriations in the biennial budget), and to seek approval to apply a work requirement to this population if there is ever any indication that the federal government would approve such a waiver. Because these states all propose applying a work requirement to an existing Medicaid population rather than to a new coverage group as in Georgia, it is unclear if the rationale that the Federal District Court ruling used in Georgia would apply. While the Biden Administration does not believe work requirements further Medicaid objectives, a future presidential administration could revisit these waiver provisions. However, any future work requirements approved would likely face legal challenges.
• Will there be debate over federal legislation related to Medicaid work requirements? Ahead of federal budget debates, Congressional Republicans have indicated that they will rely on a budget outline that would require Medicaid enrollees to work, or look for work, in order to receive coverage (in addition to other Medicaid programmatic cuts); recently, Republican Speaker of the House Kevin McCarthy highlighted work requirements as a policy to reduce the debt limit. Previously, Republican attempts in 2017 to allow states to require work as a condition of Medicaid eligibility (as part of the ACA repeal and replace debate) were unsuccessful. While some policymakers favor work requirements as a policy, they are unlikely to result in significant savings or result in large increases in enrollee employment rates, since the vast majority of Medicaid enrollees are already working or would likely qualify for exemptions.

Introduction

The Africa Centers for Disease Control and Prevention (Africa CDC) works to build the capacity of public health institutions across Africa to strengthen the timeliness and effectiveness of public health responses. First envisioned a decade ago, the 2014 West African Ebola outbreak accelerated its creation and it was formally approved as a specialized technical entity of the African Union (AU) in 2016. While it originally operated as an arm of the AU, with the aim of establishing a new regionally owned and managed “public health order for Africa” it has grown in prominence and role including being recognized as helping to lead the African continent’s response to COVID-19. In 2022, the AU revised the foundational statute for Africa CDC to transform the institution from a specialized technical agency of the AU to an autonomous public health body. As the global community increasingly focuses on strengthening global health security in advance of future pandemics and health emergencies, there is growing recognition that Africa CDC occupies an especially strategic position with respect to pandemic preparedness and response.

This brief reviews the history of Africa CDC, describing its structure, funding and operations to date, including U.S. government engagement, as well as challenges and opportunities for the institution moving forward. It is based on analysis of the literature and interviews with experts.

Creation and Evolution of Africa CDC

While African leaders officially recognized the need for the creation of an Africa-wide public health agency in 2013, it was the 2014 West African Ebola outbreak that drove home this need and accelerated the process. After formal approval by the AU in 2016, Africa CDC was officially launched in January 2017. The Africa CDC’s founding statute declared that the agency would function as an organ of the African Union and like the AU, it is based in Addis Ababa. In early 2017, Cameroon-born Dr. John Nkengasong, a longtime public health official at the U.S. Centers for Disease Control and Prevention (CDC), was named the first head of Africa CDC. Nkengasong is cited by key informants as a driving force in Africa CDC’s launch and maturation.

AU member states have primary responsibility for public health activities within their borders. Much like the U.S. Centers for Disease Control and Prevention, Africa CDC plays a normative, coordinating and capacity-building role. This encompasses work in a number of areas, as directed by its founding statute, including early warning and response, pandemic preparedness and response, mapping hazards and risks, supporting emergency responses, promoting partnership and collaboration on health, harmonizing disease control and prevention policies, and building public health capacity (including field epidemiology and laboratory capacity). The founding statute directs Africa CDC to establish and work through regional collaborating centers representing the five major sub-regions on the continent: Central Africa, Eastern Africa, Northern Africa, Southern Africa, and Western Africa.

Africa CDC was minimally staffed at its outset, with U.S. CDC seconding two technical experts to work alongside Nkengasong to get the agency up and running. Its initial focus was in supporting the development of regional capacity for syndromic surveillance (i.e., monitoring of illnesses to provide early warning of disease spread). In recent years, as external funding has increased (see below) and the agency’s remit has expanded, staffing has substantially grown, with one key informant referring to the increase on staffing as “exponential.” With financing from China, Africa CDC now has a new headquarters in Addis Ababa which will include an emergency operations center, a data center, a laboratory, and other facilities.

The founding statute also directs Africa CDC to collaborate with the World Health Organization and other partners to enhance coordination and avoid overlap. Prior to the formal launch of Africa CDC, the African Union Commission and WHO executed a framework of collaboration to guide and inform the working relationship between Africa CDC and WHO, as the respective constituencies of the two organizations differ in some respects. Africa CDC’s geographic remit is more extensive than WHO’s, as several AU member states (including Djibouti, Somalia, Libya, Morocco, Sahwari Republic, and Tunisia) are not members of WHO’s AFRO region. Another difference is that while WHO’s African regional office works primarily through Ministers of Health, Africa CDC, as a body of the AU, has a direct line to, and ability to convene, African Heads of State.

Although created by the African Union, it was initially expected that the agency would operate somewhat independently of the AU bureaucracy. In practice, however, the AU often exercised close oversight and control over such functions as hiring, approval of travel and agency communications, which proved challenging to Africa CDC’s need for flexibility and rapid response to emerging health issues.  External support assisted the agency in gaining agility and capacity in the early years, including funding from the Bill & Melinda Gates Foundation to accelerate the hiring of key personnel and to support strategic planning. Africa CDC (with support from the U.S. CDC) also leveraged the hiring capacity of the African Field Epidemiology Network (AFENET), a non-profit network that works to build capacity for public health functions, to strengthen epidemiological capacity across the region. After COVID-19, there was a broad recognition of the need for greater autonomy at the agency, which led to the AU’s decision in 2022 to clarify and institutionalize the independent nature of Africa CDC.

After Nkengasong left in 2022, following his U.S. Senate confirmation as U.S. Ambassador-at-Large and global HIV/AIDS coordinator, Dr. Ahmed Ogwell Ouma, a Kenyan epidemiologist, served as acting director. In February 2023, African heads of state approved Dr. Jean Kaseya, a Congolese public health expert, to serve as the first Director General of the newly autonomous Africa CDC.

Africa CDC Operations

Africa CDC is governed by a 15-person board, consisting of 10 health ministers (two per each of the five regions), two representatives of the African Union Commission, two nominees of the Commission chair, and one regional health organization. The Board directs and approves the agency’s strategy, operations, budget, and other key governance activities. There is also a 25-person advisory council, which reports to/informs the Board and provides technical guidance to Africa CDC.

The agency uses a decentralized model that relies on the work and cooperation of national health institutions, which are incorporated in each AU member state. As noted above, Africa CDC has established five regional collaborating centers in Central Africa, Eastern Africa, Northern Africa, Southern Africa, and Western Africa, which it funds, intended to serve as hubs for the strengthening and coordination of Africa CDC’s surveillance, preparedness and emergency response activities and to enable sub-regional approaches to disease outbreaks and other public health priorities. The regional collaborating centers are in various stages of development, with some becoming fully operational only in 2021.

Building robust laboratory capacity across the region – a pillar of pandemic preparedness – has been a major area of work for Africa CDC. Informed by an early mapping exercise of laboratory capacity gaps in Africa, Africa CDC provided laboratory workforce training and capacity-building support focused on preventing and addressing antimicrobial resistance. Through its Regional Integrated Surveillance and Laboratory Network (RISLNET), Africa CDC is working to establish harmonized standards to improve quality control and facilitate the sharing and timely, strategic use of public health data. These efforts have helped close gaps in disease detection in the region and accelerated the steady strengthening of laboratory systems in Africa. While these lab-focused efforts ultimately rely on the laboratory systems and professionals in AU member states, Africa CDC has helped to train laboratory workers and create a coordinated, linked regional laboratory network.

The agency also works to establish public health norms, partnerships and coordination mechanisms. For example, in July 2022, Africa CDC called on all African countries centers to respond to future health emergencies. It also provides a platform for the development of regional public health policies, such as the Africa Medical Supplies Platform, created in 2020 which pools and shares health resources and commodities. Africa CDC also enters into strategic partnerships to benefit the region, such as its Memorandum of Understanding with FIND to increase access to diagnostic tools as well as its close working relationship with the African Society for Laboratory Medicine (ASLM).

U.S. Government Collaboration with Africa CDC

The U.S. Government played a foundational role in the early days of Africa CDC, facilitated by having Dr. Nkengasong as its first director, and continues to serve as a central technical partner for the organization. U.S. CDC entered a Memorandum of Understanding with Africa CDC in 2015 and the following year placed two senior staff at Africa CDC. Alongside Nkengasong, these staff served as the organization’s early nucleus. Expertise from the U.S. CDC helped shape and direct the creation of syndromic surveillance systems across the region. U.S. CDC also supported Africa CDC’s early efforts to develop a strategic public health plan for the region. While the U.S. CDC has provided much of the U.S. Government’s support for Africa CDC, other arms of the U.S. government, such as the Department of Defense (primarily via the Defense Threat Reduction Agency, DTRA), have also provided technical and financial support (more information below in the Funding section).

With its long history of delivering technical support to health systems in Africa, U.S. CDC has supported Africa CDC in strengthening the public health workforce, with a particular focus on creating a network of trained epidemiologists capable of addressing outbreaks that cross national borders. This close working relationship has enabled Africa CDC to leverage U.S. CDC’s existing investments in the region’s laboratory capacity, disease surveillance, and response preparedness. Using a cooperative agreement with the African Field Epidemiology Network, U.S. CDC hired 10 graduates of the epidemiology program to work at Africa CDC in its early years.

In March 2022, the U.S. Government renewed its partnership with Africa CDC by entering into a new Memorandum of Understanding. The MOU outlines several priority areas for engagement, including building the capacity of national health institutes and regional collaborating centers, especially with regard to surveillance, public health information exchange, early outbreak warning systems, and development of testing and diagnostics capacity. Strengthening the public health workforce is also prioritized as an area of collaboration under the new MOU. The U.S. Government has also pledged to support the purchase and distribution of key health commodities, to advance next-generation molecular sequencing capacity, and to aid in expanding vaccine manufacturing capacity in Africa.

Funding of Africa CDC

Although Africa CDC was initially created as an arm of the AU, informants indicate that the AU has provided only minimal direct funding to the agency, although it has covered the salary costs for certain personnel. This has meant that external donors have, to date, been the primary source of funding for Africa CDC, with contributions to the organization surging during the COVID-19 pandemic.

The U.S. government has provided in-kind support to Africa CDC since 2015, with annual support ranging from approximately $1 million to about $3 million. Financial support from the U.S. government has come from the U.S. CDC, with some additional funding from DTRA. Early funding from the U.S. CDC helped in organizational strategic planning, the hiring of field epidemiologists, and the hiring of technical and administrative staff. In 2018, the U.S. Government announced an initial $150 million in support to national health institutes in Africa. In 2020, the U.S. CDC joined together with the Bill & Melinda Gates Foundation, Microsoft, Illumina, and Oxford Nanopore Technologies to launch a $100 million Africa Pathogen Genomics Initiative to improve disease surveillance and emergency response.

China is another key government donor to the Africa CDC (specific funding amounts are not publicly available), including support for the construction of the new Africa CDC headquarters building in Addis Ababa. China, sometimes in concert with the U.S. CDC, has also provided in-kind health workforce training, national regulatory capacity-building, and support for laboratory systems across the region. The U.S. and China have in the past formally collaborated in supporting Africa CDC, reflected in a Memorandum of Understanding signed in 2016.

While a detailed budget is not available, a number of donors have provided funding to African CDC since the start of the pandemic to help with various aspects of COVID-19 response activities such as vaccine purchases and distribution, investments in public health workforce, laboratory strengthening, and a number of other areas (see Table 1). Major donors over this time period have included the MasterCard Foundation ($1.5 billion), the World Bank ($100 million), the Gates Foundation along with the US CDC and other partners ($100 million), the African Development Bank ($27.3 million), and the European Union (€10 million). Africa CDC has also leveraged other financial sources to advance its mission, such as using a financing facility established by the African Export-Import Bank to procure COVID-19 vaccines. Moving forward, Africa CDC is also a potential recipient of donor funds directed from the new Pandemic Fund housed at the World Bank, although it had as of February 2023, not been approved as one of the Fund’s “Implementing Entities” to which funds can be provided.

Africa CDC and its role in disease outbreaks, including COVID-19

Africa CDC plays prominent leadership and operational roles during outbreak response efforts on the African continent. For example, during the Ebola outbreak in the Democratic Republic of Congo (DRC) in 2018-2020, Africa CDC collaborated with the DRC government and WHO on contact tracing initiatives, laboratory services, and the training of thousands of healthcare workers and traditional healers – all in the context of a fragile security situation and under exacting political scrutiny.

The COVID-19 emergency accelerated the work of Africa CDC and raised its profile as a public health leader – regionally but also globally. With Africa CDC in place when COVID-19 emerged, the region was spared the need to invent mechanisms for collaboration and information-sharing in response to the pandemic.

Africa CDC helped catalyze an early, coordinated response to COVID-19. By February 2020, at a time when the U.S. Government was assuring Americans that COVID-19 posed little danger, Africa CDC spearheaded the creation of a joint continental strategy to respond to the pandemic, with 55 countries agreeing to harmonize their COVID-19 approaches and strategies. An Africa Task Force for Coronavirus (AFTCOR) was established in February 2020, meeting bi-weekly thereafter.

Africa CDC also served as a regional source of public health information on COVID-19, providing a central data hub for member-state reported data on cases, deaths, recoveries, tests and vaccination uptake, developing and disseminating issue briefs on important aspects of the COVID-19 pandemic and serving as a media information hub. It also tracked news and social media channels to identify and address vaccine-related disinformation and misinformation.

Africa’s laboratory capacity – a major focus of Africa CDC’s work prior to COVID-19 – has been cited as a key part of the COVID-19 response not only on the continent, supporting training of laboratory personnel, but also for providing early COVID data to the global community before other labs. Nigeria sequenced and broadly disseminated the first African SARS-CoV-2 genome, the Network for Genomic Surveillance South Africa discovered the Beta variant, and genome-sequencing efforts in Botswana and South Africa led to identification of the Omicron variant.

In addition, Africa CDC spearheaded the procurement of essential COVID-19 commodities for the continent. In the very early stages of the pandemic, when countries across the world were competing for personal protective equipment and ventilators, Africa CDC negotiated with regional airlines, whose planes were grounded at the time, to deliver scarce commodities to the region. In August 2020, Africa CDC joined with partners to establish the African Vaccine Acquisition Team (AVAT) to serve as a centralized purchasing agent for COVID-19 vaccines for the region. Through AVAT, the African Union made multiple purchases of COVID-19 vaccines for use across the region, including 110 million doses of the Moderna mRNA vaccine in 2021.

As the COVID-19 Vaccines Global Access (COVAX) initiative began delivering vaccines to African countries in 2021, Africa CDC helped countries in ensuring fair, equitable and timely allocation of vaccines. More recently, in 2022, it brokered an agreement with Pfizer for the purchase of the COVID-19 therapeutic Paxlovid.

Africa CDC also supported innovative means to deliver COVID-19 interventions and to address vaccine hesitation or misinformation. For example, Africa CDC launched the Partnership to Accelerate COVID-19 Testing in Africa (PACT), recruiting and training thousands of community health workers to provide community education and link people to COVID-19 testing and vaccination services and fielded a vaccine perception survey in 2020 to inform and guide vaccination campaigns.

Future Challenges and Opportunities for Africa CDC

It is an important moment of transition for Africa CDC as a new Director General takes the helm and the agency undergoes the process of becoming a fully autonomous organization after years of working within AU systems and oversight. Africa CDC has recently released its new strategic plan (for 2022-2026), which outlines the agency’s strategic objectives and goals as it looks ahead after helping to mount a continent-wide response to a historic pandemic.

Expert informants uniformly expressed admiration for the rapid progress that Africa CDC has made in building its capacity, elevating its profile, and influencing regional public health policies and practice. In particular, the Africa CDC has played a key role in raising the visibility of pandemic preparedness across the region and in marshalling high-level political support for public health measures. However, as indicated in the agency’s new strategic plan document and information provided by expert informants, a number of questions remain regarding how robustly staffed and supported certain functions of the Africa CDC are and how it can best fulfill the vision outlined in its founding charter. These include:

• Mobilizing sufficient and sustainable financing: Donor funding has been central to establishing and growing the Africa CDC. However, Africa CDC’s reliance on external financing carries risks with respect to sustainability, and it could be facing more restricted funding in the coming years, as COVID-19 response activities wind down and societal and political attention on public health preparedness wanes. Some have called for increased contributions from AU member states – though it is unclear how willing and able governments across the region are to provide more for the agency over the coming years – as well other potential funding sources such as a continent-wide tax on airline tickets, an idea proposed by the incoming Africa CDC Director General.
• Building capacity of key national and regional actors: Africa CDC is most able to be successful and implement its vision and strategy when it has strong partners and robust institutions at the national and regional levels, including effective national health systems. However, given the economic, societal, and budgetary effects of the pandemic and resulting constraints on public spending in many African countries, the investments and support for national and regional health institutions is uncertain in the coming years. In particular, informants pointed to the importance of building up stronger regional collaborating centers in partnership with Africa CDC, given that at present, the quality and capacity of these regional bodies varies considerably across the continent and some are still relatively nascent.
• Maintaining hard-won goodwill and support: According to informants, Africa CDC has generated extraordinary goodwill across the region and in a relatively short time has become a remarkably influential public health institution. Many report that effective leadership helped build this reputation and expand influence, along with the impact of it work, it responsiveness, and success in communication. With a new leader taking the helm and the public health response in the region entering a new phase, informants advised that the agency will face challenges in building on its past successes and navigating the next phase. These include successfully leveraging the capacities and lessons derived from the COVID-19 response to continue to build robust regional pandemic preparedness, maintaining good relations with the AU and political leaders across the region, recruiting high-quality staff, implementing a code of conduct to govern its operations, and building the systems for follow through on Africa CDC’s autonomous status.
• Strengthening transparency and accountability: The transparency of transnational mechanisms for global health and development is recognized as a growing global priority. While Africa CDC’s web portal provides a wealth of information on organizational activities, relevant news items, and some epidemiological information, the site does not make readily available details about other important aspects of the organization such as governance and funding. In fact, there is no public source to turn to for key Africa CDC organizational characteristics such as staff size, organizational charts, governing board minutes, budgets, and other areas. Similarly, while Africa CDC has articulated a number of goals and targets (such as providing 10 million COVID-19 tests in four months or recruiting and deploying 1 million community health workers for contact tracing), target and goal information remains limited and it is not clear whether stated goals have been met. Publicly available annual reports (through 2019) provide extensive information on outputs (e.g. number of laboratory professionals trained, strategic frameworks developed, public health staff deployed to address outbreaks) but less information on outcomes and impact. As it transitions to greater organizational autonomy, providing more accessible information about key aspects of its work could help diverse stakeholders understand and engage with the organization.
• Navigating difficult political issues: In its early years, Africa CDC has understandably focused on core technical activities and fundamental public health capacity gaps, and its work on pandemic response has generally avoided being politicized or generated protests and pushback from member countries. However, this could change over time over time. For example, the U.S. CDC, a model for Africa CDC, has experienced numerous political controversies for its work on diverse public health matters such as adolescent health, gun violence, contraception, and COVID-19 measures, with U.S. states having varied rules and approaches to many of these issues. It is possible Africa CDC could similarly face complicated political issues linked to public health over which its member states have differing opinions and regulations. For example, as several African countries have taken steps to establish their own national vaccine manufacturing capacity, with the aim of avoiding a repeat of vaccine shortages that challenged the regional COVID-19 response, Africa CDC has cautioned countries to go more slowly, warning against the potential of a glut in vaccine capacity while other commodity priorities, such as diagnostics, are less prioritized. More broadly, Africa CDC’s commitment to support the establishment of robust vaccine manufacturing capacity and to ensure regional access to essential health commodities, for example, could touch on matters of considerable international political dispute. The recent appointment of the new Africa CDC Director General led to complaints about a lack of transparency and politicization from some African countries. Other public matters, such as the optimal strategy for preventing and controlling HIV and other sexually transmitted diseases, are often the source of political disagreements. Maintaining political support amid expanding ambitions could mean increasingly navigating politically difficult issues.
• Clarifying and strengthening the relationship with WHO: Key informants observed that Africa CDC’s relationship with WHO’s Africa regional office (WHO AFRO) can be complicated, as the mandates of the two organizations have sometimes overlapped and it has not always been clear which has primary responsibility for certain activities or how their separate efforts integrate together. Informants indicated that over time, Africa CDC and WHO AFRO have developed a mostly productive working relationship that was bolstered during the COVID-19 response, with regular information sharing and coordination meetings held between the leaders of the two organizations over the course of the pandemic. Even so, Africa CDC and WHO AFRO differ in important ways, which has implications for their relationship going forward. While WHO is a global entity with regional representation via AFRO, Africa CDC is an African institution. While WHO works primarily at the level of Ministries of Health, Africa CDC derives authority through the AU from Heads of State. According to informants there is an opportunity for these two important institutions to strengthen their partnership and joint work going forward, though doing so will likely require communication and diplomacy on the part of leadership and continued attention to defining respective roles in order to avoid duplication and unnecessary friction.
• Sustaining and further strengthening the partnership with the U.S. Government: The Biden Administration has indicated that it regards Africa CDC as a key partner, as reflected by the updated Memorandum of Understanding between the agency and the U.S. government. The U.S. has also made clear its commitment to building robust pandemic preparedness capacity in low- and middle-income countries, through advocacy for and early funding of the Pandemic Fund at the World Bank and by the establishment at the State Department of a Bureau of Global Health Security and Diplomacy, along with its ongoing financial and technical support to global health security programs including many efforts in the African region. This alignment of interests and priorities offers potential avenues for building on and further strengthening U.S. support for the work of Africa CDC.

In this JAMA Forum column, KFF’s Larry Levitt examines the growing role of private insurance companies in public programs, including Medicare Advantage and Medicaid managed care, and the tradeoffs that result.

With a divided Congress expected to weigh spending cuts during its debt ceiling and budget debates, the latest KFF Health Tracking Poll finds that the public has broad concerns about Medicare’s sustainability for the future but mostly views the debate about Medicare cuts as largely politics.

About eight in 10 (81%) adults – including similar shares of Democrats, independents and Republicans – say they worry Medicare will not be able to provide the same level of benefits in the future as it provides to seniors today. Many (73%) believe changes need to be made to Medicare to keep it going. At the same time, a large majority (79%) says the back-and-forth between Republicans and Democrats about Medicare cuts is more about both sides playing politics, while one in five (19%) say the debate reflects actual policy plans.

Overall, about eight in 10 adults (81%) view Medicare positively, including similarly large majorities of Democrats, independents and Republicans. Three in four (76%) also view the Medicaid program favorably, including two-thirds of Republicans (65%). Most (69%) say that Medicaid is working well for the low-income people it covers, including similar shares across partisans.About two thirds (66%) of the public say they have a connection to the Medicaid program, either because they have been covered through Medicaid or because they have a child, family member or close friend who has. Republicans with a personal connection to Medicaid are more likely than those who lack such a connection to view the program favorably (70% v. 55%). 

In addition, most of the public view Medicaid primarily as a health insurance program (61%) rather than a welfare program (37%), though there are partisan differences.  Most Democrats (79%) and independents (60%) view Medicaid primarily as health insurance, while Republicans are narrowly more likely to view it as a welfare program (54% v. 45%). Among Republicans, those with a personal connection to Medicaid mostly view it as health care (55%), while those without such a connection mostly view it as welfare (73%).

Other findings include:

• Most of the public views the Affordable Care Act (ACA) favorably (62%), though with a big partisan divide. Most Republicans (70%) continue to hold unfavorable views of the law, while most Democrats (90%) have favorable views.
• About two-thirds (65%) of people living in the 10 states that have not approved the ACA’s Medicaid expansion want their state to do so to cover more low-income uninsured residents.

METHODOLOGYDesigned and analyzed by public opinion researchers at KFF, the survey was conducted from March 14-23, 2023, online and by telephone among a nationally representative sample of 1,271 U.S. adults, in English and in Spanish. The margin of sampling error is plus or minus 3 percentage points for the full sample. For results based on other subgroups, the margin of sampling error may be higher.

Key Facts

• In 2020, more than a quarter (28%) of people with HIV in the U.S. were estimated to be covered by Medicare, the federal health insurance program for people age 65 and older and for younger adults with long-term disabilities. Medicare covers a range of services that are important to people with and at risk for HIV, including prescription drugs, inpatient and outpatient care, and preventive services.
• The number of traditional Medicare beneficiaries with HIV has more than doubled since the 1990s, increasing from approximately 42,500 in 1997 to more than 100,000 in 2020. The total number of Medicare beneficiaries with HIV is likely substantially larger as this estimate does not include beneficiaries enrolled in Medicare Advantage plans. (Roughly half of all Medicare beneficiaries are enrolled in such a plan.)
• Medicare is the second largest source of federal financing for HIV care and treatment in the U.S., accounting for 39% of federal spending on care and treatment for people with HIV in FY2020.¹  Spending has increased over time due in large part to the introduction of the Part D prescription drug benefit in 2006, as well as an increase in the number of Medicare beneficiaries with HIV, and the rising cost of care and medication used by people with HIV.
• Compared to the traditional Medicare population overall, Medicare beneficiaries with HIV are disproportionately under age 65 (13% vs. 61%), male (45% vs. 75%), Black (8% vs. 39%), and Hispanic (6% vs. 12%). They are also more likely to originally qualify for Medicare based on disability rather than age (22% vs. 77%).

Overview

Medicare, the federal health insurance program for people age 65 and older and for younger adults with long-term disabilities, covers over 65 million people and plays in important role in delivering health coverage to people with HIV. In 2020, 28% of adults with HIV in the U.S. were estimated to be covered by Medicare, according to the Centers for Disease Control and Prevention’s Medical Monitoring Project, a nationally representative survey of adults with HIV. This includes both those in traditional Medicare and Medicare Advantage, which are private health plans, such as HMOs and PPOs, that cover all Medicare-covered benefits. Medicare covers inpatient and outpatient hospital services, physician services, and prescription drugs, among other services, that are important to people living with HIV, as well as prevention services, such as pre-exposure prophylaxis (PrEP) that are important to people at risk for HIV.

Medicare Beneficiaries with HIV

The profile of Medicare beneficiaries with HIV is different from that of Medicare beneficiaries overall. (Unless otherwise noted, findings described here are representative of traditional Medicare beneficiaries only and do not include beneficiaries enrolled in Medicare Advantage plans.^2 ,3 ):

• The number of traditional Medicare beneficiaries with HIV has more than doubled since the mid-1990s, rising from 42,500 in 1997 to 103,400 in 2020 (a 143% increase). The increase in the number of Medicare beneficiaries with HIV is due to several factors, including advancements in HIV treatment leading to longer lifespans for people with HIV as well as a steady number of new infections in the population overall. Despite this increase, Medicare beneficiaries with HIV make up less than half of one percent of the Medicare population.
• When compared to Medicare beneficiaries overall, beneficiaries living with HIV are disproportionately under age 65 (13% vs. 61%), male (45% vs. 75%), Black (8% vs. 39%), and Hispanic (6% vs. 12%). (Figure 1)

• A substantially larger share of Medicare beneficiaries with HIV are dually enrolled in both Medicare and Medicaid compared to Medicare beneficiaries overall (61% vs 18%). For low-income Medicare beneficiaries who qualify for Medicaid based on their income and resources, Medicaid provides assistance with Medicare premiums, and in many cases, cost sharing. Most dually enrolled beneficiaries are eligible for full Medicaid benefits, including long-term services and supports. Dually enrolled Medicare beneficiaries are among the most chronically ill and highest cost
• Relative to Medicare beneficiaries overall, beneficiaries with HIV have a higher prevalence of certain behavioral health conditions and other chronic diseases (Figure 2).
  • Nearly half (47%) of Medicare beneficiaries with HIV have a diagnosed mental health condition, compared to fewer than one-third (29%) of Medicare beneficiaries overall. One-third (33%) have a diagnosis of depression compared to one in five (19%) in the overall Medicare population. More than one in five Medicare beneficiaries with HIV have been diagnosed with a substance use disorder, four times the rate among beneficiaries overall (21% vs. 5% overall), including alcohol-use disorder (7% vs. 2% overall) and opioid use disorder (8% vs. 2% overall), and they are nearly three-times more likely to use tobacco products (28% vs. 9% overall). (All data not shown in chart.)
  • Fifteen percent (15%) of Medicare beneficiaries with HIV also have a viral hepatitis diagnosis (including hepatitis types A-E), compared to 1% of the overall Medicare population. While viral hepatitis remains a persistent comorbidity, the share of beneficiaries with both HIV and viral hepatitis has declined in recent years (down from 21% in 2015), likely due to the availability of curative treatment, such as Sovaldi, introduced in 2013. Beneficiaries with HIV have liver disorders at twice the rate of the overall Medicare population (11% vs. 5%), and about one in four (38%) have chronic kidney disease compared to a quarter (26%) of the overall Medicare population.
  • Even though Medicare beneficiaries with HIV are younger than Medicare beneficiaries overall, they experience other common comorbidities at similar rates to the overall Medicare population, including hyperlipidemia (47% vs. 48%) and hypertension (54% vs. 56%)

Medicare Eligibility for People with HIV

The three main pathways to Medicare eligibility for all individuals are based on age, disability status, and disease state, and in most cases require an individual to have sufficient work credits based on their own or family employment history (see Table 1).

As of 2020, nearly eight in ten (77%) HIV positive Medicare beneficiaries originally qualified for Medicare via a disability pathway, primarily as recipients of Social Security Disability Insurance (SSDI) (although some may have qualified due to end stage renal disease (ESRD) or amyotrophic lateral sclerosis (ALS)). By comparison, 22% of traditional Medicare beneficiaries overall originally qualified through these pathways, some of whom are now over the age of 65. Because the HIV population is aging due to effective HIV treatment, a growing share is qualifying for Medicare based on age, rising from 14% in 2015 to 23% in 2020.

Medicare Spending on People with HIV

In FY 2022, Medicare spending on people with HIV was estimated to total $11.3 billion (including both traditional Medicare and Medicare Advantage)⁴ , representing 39% of federal spending on HIV care (Figure 3), but just 1.2% all Medicare spending.⁵  With the introduction of the Part D prescription drug benefit in 2006, Medicare spending on HIV care substantially increased and for a period surpassed that of Medicaid. This is largely because the implementation of Part D shifted coverage of prescription drugs for dually enrolled beneficiaries.

Medicare spending on beneficiaries with HIV has increased over time, as the number of beneficiaries with HIV and the cost of medical care and antiretrovirals (ARVs) has grown. The following estimates reflect spending for beneficiaries in traditional Medicare enrollees only, because data on spending by type of service for beneficiaries in Medicare Advantage are not available.⁶ 

• Average per capita Medicare spending for beneficiaries with HIV increased 32% between 2013 and 2020 (from $42,423 to $55,791), compared to 18% for beneficiaries overall (not adjusted for inflation). In 2020, per capita spending on beneficiaries with HIV was 4 times higher than for beneficiaries overall ($13,456 compared to $55,791) (Figure 4).
• Nearly two-thirds (63%, or $35,303) of Medicare spending for beneficiaries with HIV in 2020 was for Part D prescription drugs. Between 2013 and 2020, average prescription drug spending for people with HIV increased 52%. While this is the same increase as for beneficiaries overall, absolute increase is still substantially higher for those with HIV. In 2020, average per capita Part D spending was 14-times higher for those with HIV than for Medicare beneficiaries overall (Figure 4).
• Medicare per capita spending on certain other medical services for beneficiaries with HIV is also higher than per capita spending among traditional Medicare beneficiaries overall, including for inpatient services, physician services, outpatient services, and skilled nursing facilities (see Figure 4).

Medicare Benefits

Medicare covers many health care services important to people living with, and at risk for, HIV, including hospital care, physician services, prescription drugs, and prevention services. Medicare benefits are organized and paid for in different ways and are separated into four parts (see Table 2).

Services that are particularly important for people with HIV include:

• Prescription drugs:
  • Part D: The addition of the Part D benefit to Medicare in 2006 marked an important change for beneficiaries, especially those with illnesses and chronic conditions treated with costly medications, including people with HIV. Part D plans are required to cover all approved antiretrovirals (ARVs), consistent with CMS guidelines and codified in law by the ACA, designating ARVs as one of the so-called “six protected drug classes.” Despite this coverage requirement, Part D enrollees face cost-sharing for these drugs, which can be expensive, but those who qualify for the Part D Low-Income Subsidy pay nominal cost-sharing amounts. The recently passed Inflation Reduction Act included several provisions to lower out-of-pocket spending under Part D, such as a cap on out-of-pocket drug spending that takes effect in 2024.
  • Part B: Some ARVs used to treat and prevent HIV are physician-administered injectables, which are covered under Part B. Drugs covered under Part B are subject to a 20% coinsurance requirement. Beneficiaries with supplemental coverage, such as Medicaid or Medigap, may not be responsible for the 20% coinsurance.
• Facial wasting (lipoatrophy) treatments: Since 2010, Medicare has covered FDA-approved facial wasting (lipoatrophy) treatments for beneficiaries who have experienced depression as result of facial lipoatrophy caused by antiretroviral drug use.
• HIV testing: In 2015, Medicare expanded access to HIV testing by covering an annual voluntary test for all beneficiaries between the ages of 15 and 65, regardless of perceived risk, without cost-sharing. Those under age 15 and over age 65 are also covered if they are at increased risk, which is defined to include anyone who asks for a test. Pregnant beneficiaries are also explicitly covered for HIV screening.
• Pre-exposure Prophylaxis (PrEP): For individuals who are higher risk for HIV, use of pre-exposure prophylaxis medication, or PrEP, is a highly effective option to prevent infection. ARVs used for PrEP are covered under both Medicare Part D for oral medications (Truvada, Descovy, and generics) and Part B for injectable physician-administered medications (Apretude).

Financial Assistance for Medicare Beneficiaries with HIV

Accessing benefits under Medicare can pose affordability challenges for some beneficiaries, particularly those with modest incomes. Medicare has relatively high cost-sharing requirements, no cap on out-of-pocket spending under traditional Medicare for services covered under Parts A and B, and does not cover all services that may be important for people with HIV, such as long-term services and supports and dental services. As a result, many beneficiaries, including those living with HIV, have various sources of supplemental coverage and/or benefit from certain financial assistance programs for people with low incomes.

• As noted earlier, Medicaid provides financial assistance to help pay Medicare premiums and, in many cases, cost sharing for low-income dually enrolled beneficiaries. For most dually-enrolled beneficiaries, Medicaid also covers benefits that Medicare does not, most notably long-term services and supports.
• Part D offers premium and cost-sharing assistance for beneficiaries with low incomes and modest assets through the Part D Low-Income Subsidy (LIS) program, including for 74% of Medicare Part D beneficiaries with HIV in 2020. The large share of Part D enrollees with HIV who qualify for LIS is likely due to the large share of beneficiaries with HIV who are dually enrolled in Medicare and Medicaid, who automatically receive the LIS.
• The Ryan White HIV/AIDS Program, the nation’s safety net program for people with HIV, can also assist eligible Medicare beneficiaries with HIV with health coverage expenses and provide support services not covered by Medicare, including for HIV and medical case management and subsistence services, among others. Medicare beneficiaries with HIV who also have Ryan White support, have higher rates of viral suppression than beneficiaries without Ryan White support (73% v. 58%). As of 2020, nearly all of the state-based AIDS Drug Assistance Programs (ADAPs), the drug and insurance component of the Ryan White Program, were assisting low- and moderate-income Medicare beneficiaries with HIV with at least some costs associated with HIV care and treatment, though direct help with premiums is challenging.⁷ 

Future Outlook

On August 16, 2022, President Biden signed the Inflation Reduction Act into law. The law included several provisions to address the high cost of prescription drugs for people with Medicare, in particular requiring the federal government to negotiate the price of certain high-cost drugs; requiring drug companies to pay rebates to the federal government if drug prices rise faster than inflation; and capping out-of-pocket drug spending for Medicare beneficiaries starting in 2024. The law also expanded eligibility for full benefits under the Medicare Part D LIS program. Given that people with HIV are disproportionately low income and the cost of ARVs is high, expanded eligibility for full LIS benefits along with the out-of-pocket relief from the out-of-pocket spending cap could be especially impactful for this population and could also limit costs for the Ryan White Program.

Additionally, the requirement for drug companies to pay rebates if prices rise faster than inflation for drugs used by Medicare beneficiaries could have implications for antiretroviral drug pricing. For example, a KFF analysis compared price changes for drugs covered by Medicare Part B (administered by physicians) and Part D (retail prescription drugs) between 2019 and 2020 to the inflation rate over the same period. The analysis found that Biktarvy, an antiretroviral which in 2022 accounted for 45% of the overall U.S. ARV market share, was among the top 25 drugs covered by Part D with the highest total gross spending and one of 23 drugs that had price increases greater than inflation in 2020, illustrating how ARV pricing could be impacted moving ahead.

Medicare, the second largest source of federal spending on care and treatment for people with HIV, will likely play an increasingly important role for these individuals as they age, due to treatment effectiveness and as new infections continue to occur. As such, it will be important to continue to monitor how changes in the Medicare program, and the other programs that serve them, could affect coverage and costs for people living with and at risk for HIV.

1. Calculation based on KFF review of Congressional Budget Justifications, other budget documents, and personal agency correspondence. ↩︎
2. This exclusion is because data on the chronic conditions of beneficiaries in Medicare Advantage plans is not available. ↩︎
3. Findings are based 2020 Medicare claims data from a 20% sample of Medicare beneficiaries from the Centers for Medicare & Medicaid Services Chronic Conditions Data Warehouse. ↩︎
4. Medicare spending estimate received via personal data request from CMS and is inclusive of those enrolled in both Traditional Medicare and Medicare Advantage. Amounts are pre-rebate. ↩︎
5. Calculation based on KFF review of Congressional Budget Justifications, other budget documents, and data request from CMS. ↩︎
6. Note that the drug spending levels described in this factsheet are pre-rebate spending amounts ↩︎
7. It is technically difficult for ADAPs to assist with premiums as those are deducted social security payments, and ADAPs cannot provide clients with cash reimbursements. ↩︎

Key Facts

• Medicaid is the largest source of insurance coverage for people with HIV in the United States, covering an estimated 40% of the nonelderly adults with HIV, compared to just 15% of the nonelderly adult population overall.
• Medicaid covers a broad range of services, many of which are important for people with and at risk for HIV, including prescription drugs, inpatient and outpatient care, and preventive services.
• Medicaid accounted for 45% of all federal HIV spending in FY22¹  and it is the largest source of public spending for HIV care in the U.S. In FY22, the federal government spent an estimated $13 billion on Medicaid services for people with HIV. Additionally, state Medicaid spending totaled an estimated $5.4 billion in FY22.²  Spending has increased over time, reflecting the growing numbers of enrollees with HIV and the rising cost of care and treatment.
• Medicaid enrollment among people with HIV has grown over time as people with HIV are living longer and new infections continue to occur. The expansion of the program under the Affordable Care Act (ACA) has also increased coverage for people with HIV.
• Medicaid enrollees with HIV are more likely to be male, dually eligible for Medicare, and to qualify based on disability, compared to enrollees overall.

Overview

Medicaid, the largest public health insurance program in the United States, covering health and long-term care services for 83.9 million low-income individuals, has played a critical role in HIV care since the HIV epidemic began. It is the single largest source of coverage for people with HIV in the U.S., and its role has grown over time as people with HIV are living longer, new infections continue to occur, and due to the program’s expansion under the Affordable Care Act (ACA) (see Figure 1).

Medicaid Beneficiaries with HIV

Medicaid is the largest source of insurance coverage for non-elderly adults with HIV, estimated to cover 40% of population, compared to just 15% of the nonelderly adult population overall. This number of people covered is higher today due in part to the ACA’s Medicaid expansion, which has been a key factor in recent gains among people with HIV. In addition, new HIV infections continue to occur and people with HIV are living longer, which also contributes to a growing population. While Medicaid is a significant source of coverage for enrollees with HIV, this group represents less than 1% of the overall Medicaid population.

The demographics of Medicaid enrollees with HIV vary significantly from the demographics of the Medicaid population overall:³ 

• Medicaid enrollees with HIV are more likely to be male (64% vs. 44%) and between the ages of 45-64 (50% vs. 17%) than the Medicaid population overall (data on race/ethnicity is not available due to data limitations).
• One-in-four (25%) are dually eligible for both Medicaid and Medicare, compared to 14% of the Medicaid population as a whole; dually eligible enrollees are among the most chronically ill enrollees and have the highest spending, with many having multiple chronic conditions and requiring long-term care.
• Enrollees with HIV also have a higher prevalence of certain co-morbidities. Nine percent (9%) have a hepatitis diagnosis compared to just 1% of the general Medicaid population, a decrease from 14% in 2013, potentially reflecting the impact of curative treatment for hepatitis C.
• Enrollees older than 18 with HIV also face significant mental health and substance use disorder comorbidities, including 46% who have such a diagnosis compared to 25% of all other Medicaid enrollees older than 18 (see Figure 2).

Medicaid Eligibility for People with HIV

Most Medicaid enrollees with HIV (41% in 2019) qualify for coverage through a disability pathway, compared to just 11% of the Medicaid population overall. The remaining share qualify through multiple other mandatory and optional pathways (see Table 1 for a discussion of pathways).

Prior to the ACA, to qualify for Medicaid an individual had to be both low income and “categorically eligible,” such as being a person with a disability or pregnant. This presented a “catch-22” for many low-income people with HIV who could not qualify for Medicaid until they were already quite sick and disabled, despite the fact that early access to treatment could help stave off disability and significantly improve health outcomes.

The ACA sought to fundamentally change this by requiring states to expand their Medicaid programs to nearly all individuals with incomes at or below 138% of poverty ($20,120 for an individual in 2023). However, a 2012 Supreme Court ruling on the constitutionality of the ACA effectively made expansion a state option. As of November 2022, 40 states including Washington, D.C. have adopted the ACA Medicaid expansion, where approximately two thirds (64%) of people with HIV live. Eleven states have not expanded their programs, where 36% of people with HIV live, most of whom are in Florida, Georgia, and Texas.

More recently, Congress passed emergency relief legislation during the COVID pandemic which lead to an increase in Medicaid enrollment overall (30.4% in the past two years) and likely among people with HIV as well. This provision will end on March 31, 2023. As a result, enrollment could decline if individuals are no longer eligible or face administrative barriers during renewal (see Figure 3).

Medicaid Spending on People with HIV

Medicaid is a means-tested entitlement program, jointly financed by the federal and state governments. In the traditional (non-expansion) program, the federal government matches state Medicaid spending at rates ranging from 56% to 85% (using a formula based on state per capita income). Under the ACA, the federal match for the expansion population began at 100% in 2014 and phased down to 90% in 2020 and thereafter. Additionally, the above mentioned COVID relief legislation provided states with an additional 6.2 percentage point federal match during the public health emergency, until amended by the FY23 Omnibus.

In FY 2022, federal Medicaid spending on HIV was estimated to total $13.0 billion and increasing from $5.5 billion in 2013.⁴  Medicaid spending on people with HIV accounted for an estimated 45% of all federal spending on HIV care and is the largest source of public financing for HIV care in the U.S, followed by Medicare (see Figure 4). Still, in FY 2022 federal Medicaid spending on HIV represents less than 2% of total federal Medicaid spending. In addition, the states’ share of Medicaid spending on HIV was estimated to be an additional $5.4 billion in FY 2022.⁵  Medicaid spending on HIV has increased over time, reflecting growing numbers of enrollees with HIV and the rising cost of care and treatment.

Average annual per capita spending on Medicaid fee-for-services enrollees with HIV was $13,725 in 2019, more than three times that of Medicaid enrollees overall ($3,087)⁶ .  In addition, Medicaid enrollees with HIV have different spending patterns than enrollees overall (see Figure 5), and spending on HIV treatment, due to the high cost of HIV medications, has an outsized impact on the program.⁷ 

While less than half of one percent of Medicaid enrollees have HIV, in 2019, spending on antiretrovirals, drugs used to treat and prevent HIV totaled $5 billion and accounted for 7% of gross Medicaid outpatient drug spending. Gross spending on antiretrovirals is disproportionate to their utilization and reflects the high cost of these drugs. In addition, another $1.2 billion was spent on treatment for hepatitis C. Both hepatitis C treatment and antiretrovirals are part of the antiviral drug class which is consistently the most costly drug group in the program.

Medicaid Benefits

Medicaid covers a broad range of benefits, many of which are important for people with and at risk for HIV (described below). Medicaid benefits are offered on a fee-for-service basis, through capitated managed care organizations (MCOs), or through a combination of these benefit designs. In fee-for-service programs, states pay providers for covered services delivered to enrollees and in managed care programs, states make a capitated payment to a managed care plan on behalf of each enrollee.

Recognizing the high cost of drugs, especially those used for treating certain conditions, such as HIV, some managed care states “carve-out” prescription drug benefits from these plans, instead using their fee-for-service program to deliver this benefit. In FY22, of the 41 states that deliver some care through MCOs, 6 (CA, ND, MO, WI, TN, WV) carve-out pharmacy benefits and 2 (MI and DC) specifically carve-out antiretrovirals used to treat HIV. In FY20, Maryland went from carving out antiretrovirals to carving them in.

States are permitted to require “nominal” cost-sharing by some groups of enrollees, although many states do not do so; other groups and services are exempt altogether. Generally, even in states with cost-sharing policies, enrollees are not denied services based on inability to pay, though they may be held liable for unpaid copayments.

While most states that have expanded their Medicaid programs have fully aligned the benefits in their traditional program with the benefits for the expansion population, there are technically different requirements between the two, with potential implications for HIV care and prevention.

Traditional Medicaid Programs

Under traditional Medicaid, states must cover certain mandatory services, specified in federal law, in order to receive federal matching funds, though they have some flexibility in determining the scope of services. They may also cover optional services. (See Table 2.)

In addition, traditional Medicaid programs also cover certain preventive services including ones that are important to people with HIV:

• Programs must cover “medically necessary” HIV testing (i.e. indicated due to risk) and may cover routine HIV testing (screening regardless of risk). In a 2021 survey, of 42 responding jurisdictions, 40 states and DC report covering routine HIV testing while just one state, Florida, reported covering  only “medically necessary” testing. Nine states did not respond, including 3 that reported covering only ‘medically necessary” testing in a prior survey (GA, NE, and SD)
• States must also cover pre-exposure prophylaxis (PrEP), the drug used to prevent HIV among those at increased risk.

Under the ACA, states are incentivized to cover a full suite of preventive services receiving an “A” or “B” rating from the United States Preventive Services Task Force (USPSTF), including routine HIV testing and PrEP, without cost-sharing through their traditional programs in exchange for a 1% increase in the federally matching rate for those services. As of November 2021, 16 states (CA, CO, DE, HI, KY, LA, MA, MT, NH, NJ, NV, NY, OH, OR, WA and WI) cover all USPSTF “A” and “B” graded these services under Sec. 4106 of the ACA.

Medicaid Expansion Programs

Most enrollees who gain access to Medicaid through the ACA expansion receive the same benefits as traditional enrollees because most states have elected to align their traditional and expansion programs. However, there are technical differences and expansion enrollees must receive services that fall into the ACA’s ten “essential health benefit” (EHB) categories, many of which are important for HIV care (see Table 3):

Benefits within these categories are largely defined through a state-based benchmarking process using a plan of the state’s choosing from federally mandated options or from an alternative plan through a waiver. Most states have used a waiver to select the traditional state Medicaid plan as the benchmark and align traditional and expansion benefits. Preventive services in expansion programs are unique in that they are specifically defined to include services receiving an “A” or “B” rating from USPSTF, including routine HIV screening and PrEP, which must be offered without cost-sharing.

Medicaid Health Homes

The ACA also gave states an option to provide Medicaid health home services to enrollees with chronic conditions (and receive a temporary enhanced federal match of 90% for the first two program years). Health homes encompass a range of services designed to help manage care for those who are chronically ill, such as comprehensive care management and care coordination. The law named several chronic conditions that could be targeted for health homes, and CMS considers others, including HIV, for states pursuing this option. As of March 2022, 34 health homes had approval in 19 states and DC. Among these, two states (WA, MI) included HIV among other qualifying conditions for enrollment into the health home and one state, Wisconsin, designed a health home specifically for enrollees with HIV/AIDS.

Waivers

States also have the ability to seek waivers from certain Medicaid requirements, such as Section 1115 Medicaid demonstration waivers to experiment with approaches to delivering benefits in ways that differ from what is allowed under statute and could impact people with HIV. Waivers can serve to both promote or restrict access to the program or certain services and proposals and approvals often reflect priorities and policy positions of states and the federal government. For example, Maine has an approved 1115 waiver for individuals with HIV/AIDS that allows for a limited package of “essential” services, including case management services that are not otherwise available under the state plan.  Recent waivers have also allowed states to purchase marketplace health plans for the expansion population, increase cost-sharing, provide additional benefits or offer benefits to new populations (e.g., substance use treatment, family planning, etc.), and transform how care is delivered or paid for.

States also have the option to apply for a “home and community-based services (HCBS)” waiver. Medicaid HCBS waiver authorities include Sec. 1915 (c) and Sec. 1115, both of which allow states to expand financial eligibility and offer HCBS to seniors and people with disabilities who would otherwise qualify for an institutional level of care. HCBS waivers have been important for people with HIV and are used by several states to serve this population. As of 2021, 5 states had an HCBS designed specifically for or inclusive of people with HIV, serving over ten thousand people with HIV.

In some cases, people with HIV may not have access to all the health services needed to stay healthy through Medicaid alone and rely on support  from other payers or programs, including the Medicare program for those who are dually eligible, and the Ryan White HIV/AIDS Program, the federal safety-net program for people with HIV who are uninsured and underinsured.

Future Outlook

As the single largest source of health coverage for people with HIV, Medicaid has played a significant role for this population since the HIV epidemic began and its role has continued to grow. In particular, many low-income people with HIV who could not previously qualify for Medicaid because they did not meet categorical eligibility criteria, such as disability, have gained access under the ACA. Going forward, it will be important to continue to assess the impact of Medicaid coverage on people with and at risk for HIV, particularly given that states are still electing to expand their programs, including through voter led ballot initiatives. At the same time, as continued eligibility through the COVID emergency relief legislation ends in April 2023, millions of people are expected to lose coverage which for those with and at risk for HIV could lead to treatment interruptions, threatening the therapeutic and preventive benefits of antiretrovirals.

1. Calculation based on KFF review of Congressional Budget Justifications, other budget documents, and personal agency correspondence. ↩︎
2. Data received via personal communication with CMS. Amounts are pre-rebate. ↩︎
3. Unless otherwise noted, findings are based on KFF analysis of 2019 Release 1 T-MSIS Transformed Medicaid Statistical Information System (T-MSIS). Medicaid enrollees with HIV in 2019 were identified using ICD-10 codes for HIV (B20, Z21, B97.53) and NDC codes for ARV utilization. ↩︎
4. Data received via personal communication with CMS. Amounts are pre-rebate. ↩︎
5. Data received via personal communication with CMS. ↩︎
6. The amount of drug spending described here represents the pre-rebate amount and actual program spending is likely substantially lower, but the negotiated discounts are proprietary and not publicly available. ↩︎
7. Categorical spending estimates for enrollees covered by managed care are unavailable due to data limitations. ↩︎

The high and growing cost of emergency department visits is of significant importance to consumers and policymakers, with recent policy changes including the No Surprises Act aiming to curb emergency department costs. Emergency department visits usually include a facility fee, or overhead charge, in addition to professional charges by the physicians or advanced practice practitioners providing care. It comes in addition to the costs for specific services the patient receives.

This analysis uses data from the Merative MarketScan Commercial Database, which captures claims from privately insured individuals with large employer health plans, to examine trends in emergency department facility fees . It finds that, on average, from 2004 to 2021, facility fees increased four times faster (531%) than professional fees (132%) for emergency department evaluation and management services.

The analysis is available through the Peterson-KFF Health System Tracker, an online information hub that monitors and assesses the performance of the U.S. health system.