The Ryan White HIV/AIDS Program: The Basics
- The Ryan White HIV/AIDS Program, first enacted in 1990, is the largest federal program designed specifically for people with HIV, serving over half of all those diagnosed.1,2 It is a discretionary, grant program dependent on annual appropriations from Congress”
- It is the nation’s safety net for people with HIV providing outpatient HIV care and treatment to those without health insurance and filling in gaps in coverage and cost for those with insurance.
- Most Ryan White clients are low-income, male, people of color, and sexual minorities.
- The program is the third largest source of federal funding for HIV care in the U.S., following Medicare and Medicaid. In FY20 it was funded at $2.5 billion which includes new funding for the federal “Ending the HIV Epidemic” initiative and supplemental funding related to the COVID-19 response.3 Funding is distributed to states/territories, cities, and HIV organizations in the form of grants.
- While the Affordable Care Act (ACA), has expanded coverage for many people with HIV, Ryan White continues to remain a critical component of the nation’s response to HIV, proving HIV care and treatment to those who remain uninsured and bolstering access for those with insurance.
The Ryan White HIV/AIDS Program (Ryan White), the largest federal program designed specifically for people with HIV in the United States, serves over half of those in the country diagnosed with the disease.4 First enacted in 1990, the Ryan White Program has played an increasingly significant role as the number of people living with HIV has grown over time and people with HIV are living longer. It provides outpatient care and support services to individuals and families affected by the disease, functioning as the “payer of last resort” by filling the gaps for those who have no other source of coverage or face coverage limits or cost barriers.
The program has been reauthorized by Congress four times since it was first created (1996, 2000, 2006, and 2009) and each reauthorization has made adjustments to the program. The current authorization lapsed in FY 2013, but the program has continued to be funded through the annual appropriations process as there is no “sunset” provision or end date attached to the legislation. The program is administered by the HIV/AIDS Bureau (HAB) at the Health Resources and Services Administration (HRSA) of the Department for Health and Human Services (HHS), and programs and services are delivered by grantees and sub-grantees at the state and local levels.
HRSA is one of the lead agencies in the federal government’s Ending the HIV Epidemic (EHE): A Plan for America initiative, launched in 2019, and the Ryan White Program is set to play a key role in efforts to reach the goal of reducing new HIV infections by 75% in five years and by 90% in ten years. The initiative includes new federal funding, some of which has been channeled to Ryan White.
In the early months of 2020, the U.S. was hit by the COVID-19 pandemic which dramatically impacted health, health coverage, and health access for all people. The Ryan White Program quickly pivoted to new ways of providing care, seeking to ensure that people with HIV were retained in care, even when the programs that serve them were strained. Recognizing the new stresses the pandemic might mean for Ryan White, Congress appropriated emergency supplemental funding for the program through the CARES Act
(See Table 1).
More than half a million people receive at least one medical, health, or related support service through the program in 2018, with many clients receiving multiple types of services:5
- Nearly two-thirds (61%) had incomes at or below the federal poverty level (FPL) (which in 2018 was $12,140 for a single person or $25,100 for a family of four); 29% had incomes between 101% and 250% FPL.
- One-fifth (20%) were uninsured, a decrease from 28% in 2013, prior to enactment of the major coverage provisions under the Affordable Care Act (ACA). Most clients (80%) have some form of insurance coverage: Medicaid is the most important payer for this group, covering 39%, of clients, including those dually eligible for Medicare. Other coverage includes: private insurance (18%), Medicare only (10%), and other sources (12%).
- Reflecting the demographics of HIV in the U.S., clients are largely male (72%), 27% are female and 2% are transgender. Half (50%) are between the ages 45 and 64 and over one-third (37%) are between 25-44. Smaller shares are under 25 (5%) or over 64 (8%). Most clients are people of color (74%), including 47% who are Black and 23% who are Hispanic. Just over one-quarter of clients (26%) are White. Half (50%) are gay or bisexual men.
Structure and Funding
The Ryan White Program is the third largest source of federal funding for HIV care in the U.S., after Medicare and Medicaid.6 Federal funding for the program, which is appropriated by Congress annually, began in FY1991 and increased significantly in the mid-1990s, primarily after the introduction of highly active antiretroviral therapy (HAART).7 For many years thereafter, funding continued to increase, but at slower rates, eventually leveling out and not keeping pace with inflation.8 However, new funding as part of the EHE Initiative ($70 million in FY 2020) marked the first significant increase to the program in many years.9 Additional funding was provided as part of one of the COVID-19 relief packages ($90 in FY2020).
The Ryan White HIV/AIDS Program is composed of “Parts,” each with a different purpose and funded as a separate line item through annual appropriations. Funding is provided to states and territories (Part B) cities (Part A), and to providers, community-based organizations (CBOs), and other institutions (Parts C, D, and F), in the form of grants. In recognition of the varying nature of the HIV epidemic, grantees are given broad discretion to design key aspects of their programs, such as specifying client eligibility levels and service priorities. However, there are requirements, including that grantees are required to spend 75% or more of funds on “core medical services” under Parts A through C10 and that all state AIDS Drug Assistance Programs (ADAPs) must have a minimum formulary for medications.11 (See Table 1 for a description of program parts and FY2020 funding levels).
|Table 1: Description of the Ryan White Program, by Part, FY20|
(Funding in Millions)
|Part A||$655.9||Funds provided to “eligible metropolitan areas” (EMAs), areas with 2,000+ reported AIDS cases over the past 5 years & “transitional grant areas” (TGAs), areas with 1,000-1,999 reported AIDS cases in the past 5 years. TGAs and EMAs must have a population of at least 50,000. Two-thirds of funds are distributed by formula based on area’s share of living HIV (non-AIDS and AIDS) cases and the remainder is distributed via competitive supplemental grants based on “demonstrated need.” EMAs must establish Planning Councils, local bodies tasked with assessing needs, developing HIV care delivery plans, and setting priorities for funding. Most TGAs are not required to have Planning Councils. Number of Grantees: 24 EMAs; 28 TGAs.|
|Part B||$1,315.0||Funds provided to states, Washington, D.C., and territories/associated jurisdictions. Grantees provide services directly, through sub-grantees and/or through Part B “Consortia” (associations set up to plan and deliver HIV care). Part B components include:
Number of grantees: 50 States, D.C., and 8 Territories/Associated Jurisdictions.
|ADAP (non-add)||$900.3||ADAP & ADAP Supplemental: Congress “earmarks” funds under Part B for ADAPs which provide medications and assists with costs related to insurance for people with HIV. ADAP supplemental grants (5% of earmark) available to states with “severe need”.|
|Part C||$201.1||Funds public and private organizations directly for:
Number of grantees: 348 EIS; 59 Capacity Development.
|Part D||$75.1||Funds public and private organizations to provide family-centered and community-based services to children, youth, and women living with HIV and their families, including outreach, prevention, primary and specialty medical care, and psychosocial services. Supports activities to improve access to clinical trials and research for these populations.
Number of grantees: 115.
|Part F||$33.6 (AETCs)/$13.1 (Dental)/$25 (SPNS)||Includes the following components:
|Ending the HIV Epidemic Initiative||$70.0||Dedicated funding to support the “Ending the HIV Epidemic (EHE)” initiative which aims to reduce HIV infections by 90% in ten years. Ryan White plays a key role in delivering care to people with HIV in the initiative and seen as the agency lead for the initiative’s “care pillar.”|
|CARES Act (COVID-19 relief) Funding for Ryan White||$90.0||Supplemental emergency funding provided to the program through the Coronavirus Aid, Relief, and Economic Security (CARES) Act, the 3rd legislative initiative to address the COVID-19 pandemic. Funding provided to supplement existing contracts, grants, and cooperative agreements under Program parts A, B, C, and D, and to AIDS Education and Training. Traditional requirements related to spending share dedicated to core medical services in Parts A, B, and C do not apply.|
Ryan White HIV/AIDS Program and Care Outcomes
While many clients have gained coverage under the ACA, Ryan White continues to play a critical role as a safety net provider for those who remain uninsured and filling gaps for clients with traditional insurance, including assisting with insurance affordability. Importantly, Ryan White support appears to make a significant difference in achieving sustained viral suppression. Viral suppression affords optimal health outcomes at the individual level and, because when an individual is virally suppressed they cannot transmit HIV, significant public health benefit.14 Overall, those with Ryan White support were significantly more likely to have sustained viral suppression compared to those without (68% v. 58%) and this pattern was observed across all coverage types (see Figure 2).15
First enacted as an emergency measure, the Ryan White program has grown to become a central component of HIV care in the U.S., playing a critical role in the lives of many low and moderate-income people with HIV. Looking ahead, there are several key issues facing the program that will be important to monitor, including:
- Future funding. As a federal grant program, funding is dependent on annual appropriations by Congress, and funding levels do not necessarily correspond to actual need (i.e. the number of people seeking services or the costs of services). As a result, historically not all states and communities have been able to meet the needs of their jurisdictions.
- Possible future program reauthorization and any impact on program structure and financing.
- Major changes to the ACA, including repeal and the impact of any changes on health coverage options for people with HIV and the Ryan White Program. In particular, if ACA era health programs are dismantled, lose their benefit design standards, or the nondiscrimination protections are weakened, it will be key to assess Ryan White’s ability to make-up for any coverage losses among people with HIV.
- Ryan White’s ongoing role in the EHE initiative, including future Congressional appropriations for EHE and the ability to address HIV in the face of the COVID-19 pandemic, among other factors.
- The ability to simultaneously address the COVID-19 and HIV epidemics. People with HIV need access to ongoing care and treatment to remain healthy and the ability to curb the HIV epidemic relies in part on improving rates of viral suppression among people with HIV. This must continue to happen at time when providers and systems that serve people with HIV, from the highest levels in federal government to the most local levels at community clinics, are facing great strain in the wake of the pandemic and when people with HIV are at particular risk for facing personal challenges which may make engaging in care difficult.
Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time.. November 2017. Available at: http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.
Ryan White HIV/AIDS Program Annual Client-Level Data Report 2018. December 2019. Available at: https://hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-client-level-data-report-2018.pdf
Kaiser Family Foundation analysis of FY20 HHS omnibus spending bill.
Ryan White HIV/AIDS Program Annual Client-Level Data Report 2018. December 2019. Available at: https://hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-client-level-data-report-2018.pdf.
Health Resources and Services Administration. Ryan White HIV/AIDS Program Annual Client-Level Data Report 2018. December 2019. Available at: https://hab.hrsa.gov/sites/default/files/hab/data/datareports/RWHAP-annual-client-level-data-report-2018.pdf
7 Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time. November 2017. Available at: http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.
8 KFF analysis of data provided by the Office of Management and Budget. See also: Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time. June 2016. Available at: http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.
9 KFF analysis of data provided by the Office of Management and Budget. See also: Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time. June 2016. Available at: http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.
10 Kaiser Family Foundation. The U.S. Ending the HIV Epidemic (EHE) Initiative: What You Need to Know. May 2020. Available at: https://www.kff.org/hivaids/issue-brief/the-u-s-ending-the-hiv-epidemic-ehe-initiative-what-you-need-to-know/
13 Grantees may be able to get waivers from this requirement.
14 Ryan White HIV/AIDS Treatment Modernization Act of 2006 (P.L. 109-415).
15 Kaiser Family Foundation. The U.S. Ending the HIV Epidemic (EHE) Initiative: What You Need to Know. May 15, 2020. Available at: https://www.kff.org/hivaids/issue-brief/the-u-s-ending-the-hiv-epidemic-ehe-initiative-what-you-need-to-know/.
16 Ryan White HIV/AIDS Treatment Extension Act of 2009 (P.L. 111-87).
17 CRS. The Ryan White HIV/AIDS Program; June 2011.
HHS. NIH. Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents Living with HIV. July 10, 2019. https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/whats-new-guidelines
Dawson, L. and Kates, J. Kaiser Family Foundation. Insurance Coverage and Viral Suppression Among People with HIV, 2018. September 2020. https://www.kff.org/hivaids/issue-brief/insurance-coverage-and-viral-suppression-among-people-with-hiv-2018/