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The Ryan White Program

The Ryan White Program, the single largest federal program designed specifically for people with HIV in the United States, is estimated to reach more than half a million people with HIV each year.1, 2  First enacted in 1990, it has played an increasingly critical role as the number of people living with HIV has grown over time and the needs of this population have become more complex as people are living longer with the disease.  The program provides 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.

Federal Ryan White funding, which must be appropriated by Congress each year, is provided to cities, states and territories,3 providers, and other organizations.  Administered by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (DHHS), it is the third largest source of federal funding for HIV care in the U.S., after Medicare and Medicaid (see Figure 1).4, 5  In addition to federal funding, some states and localities also provide funding to their Ryan White programs (including through certain state matching funds requirements).

federal-funding-for-hivaids-care-by-program-HIVAIDS-0313

Figure 1: Federal Funding for HIV/AIDS Care by Program, FY 2012

The program has been reauthorized by Congress four times since first created (1996, 2000, 2006, and 2009), and is currently authorized through FY 2013.2, 6, 7, 8, 9  Each reauthorization has made adjustments to the program.  Most recently, for example, the 2009 reauthorization included provisions designed to strengthen Ryan White’s role in helping identify individuals who are HIV positive and not yet diagnosed, including a requirement that the Secretary of DHHS establish a new national HIV testing goal of 5,000,000 tests per year to be met by Ryan White and other federal programs.8, 10   It also increased Ryan White funding authorization levels, dependent upon annual appropriations, and extended the period under which grantees were required to move from code- to name-based reporting of HIV data, among other changes.8

Ryan White Program Clients

HRSA estimates that more than half a million people receive at least one medical, health, or related support service through Ryan White each year; many clients receive services from multiple parts of Ryan White.1  In 2010:11

  • Six in 10 (59%) clients had incomes at or below the federal poverty level (FPL); an additional 19% had incomes between 101% and 200% FPL.12
  • Three in 10 (30%) clients were uninsured but most (70%) are underinsured, covered by Medicaid, Medicare, private insurance, and other sources, but face limits in their coverage or need help with costs.12, 13
  • Clients are largely male (68%); between the ages 45 and 64 (48%); and people of color (72%).12
  • Four in 10 (39%) clients were gay and bisexual men.14

Ryan White Parts, Grantees, & Structure

The Ryan White Program consists of several “Parts” (see Figure 2).  Eligible entities apply for funding by Part, and include states, cities, directly-funded public and private providers, community-based organizations (CBOs), and other institutions.  Most funding is provided to states (57% in FY 2012) followed by cities (28%), and the remainder directly to organizations.1, 13  Much of the funding provided to states and cities is in turn channeled to local providers.  CBOs make up the largest single group of Ryan White-funded entities serving clients (42% in 2010).12

Figure 2: Ryan White Program by Part, Funding & Grantees1, 13, 15
Part FY 2012 (in millions) Number of Grantees
$ %
Part A $666.1 28% 24 EMAs; 28 TGAs
Part B $1,360.8 57% 59 States/Territories;
16 ECs
    ADAP (non-add) $933.3 59 States/Territories
Part C $215.1 9% 357 Grantees
Part D $77.2 3% 114 Grantees
Part F AETC $34.5 1% 5 National, 11 Regional Centers
Part F Dental $13.5 1% 56 Reimbursement;
12 Community Partnership
Part F SPNS $25.0 1% 87 Grantees
TOTAL $2,392.2 100%

In recognition of the varying and changing nature of the HIV epidemic, Ryan White grantees are given broad discretion to design many aspects of their programs, such as specifying client eligibility levels and service priorities. However, the 2006 reauthorization added new grantee requirements, including a requirement that 75% or more of funds be spent on “core medical services” under Parts A through C and that all state AIDS Drug Assistance Programs (ADAPs) have a minimum formulary for medications.7, 16  It also changed the way in which federal funds are allocated to Parts A and B, now based on both living HIV (non-AIDS) and living AIDS case counts (previously, it was only based on living AIDS cases).  HIV (non-AIDS) case counts are only permitted from states that have name-based HIV reporting systems; states with code-based systems can receive an exemption, and were allowed a grace period, extended for three more years by the 2009 reauthorization, to complete their transition to names, but their counts are reduced for funding purposes in the interim.8, 10   The program’s parts are:

  • Part A: Funds provided to “eligible metropolitan areas” (EMAs), those with a cumulative total of more than 2,000 reported AIDS cases over the most recent five-year period, and “transitional grant areas” (TGAs), those with 1,000-1,999 cumulative reported AIDS cases.  Two thirds of funds are distributed by formula based on an area’s share of living HIV (non-AIDS) and living AIDS cases; the remainder is distributed via competitive, supplemental grants based on “demonstrated need.”  EMAs must establish Planning Councils, local bodies tasked with assessing needs, developing a plan for the delivery of HIV care, and setting priorities for funding.  TGAs are not required to have Planning Councils (unless they are “grandfathered” EMAs17).
  • Part B: Funds provided to all 50 States, the District of Columbia, Puerto Rico, Guam, the U.S. Virgin Islands, and five territories and associated jurisdictions.  States provide services directly, through sub-grantees, and/or through Part B “Consortia” (associations set up to plan for and deliver HIV care).  Part B components include:
    • Base & Supplemental: Funds distributed by formula to states based on state’s share of living HIV (non-AIDS) and living AIDS cases, weighted to reflect the presence or absence of EMAs/TGAs.  Part B “supplemental” grants are available for states with “demonstrated need.
    • ADAP & ADAP Supplemental: Congress “earmarks” funds under Part B for ADAPs which provide medications to people with HIV.  ADAP supplemental grants are available to states with “severe need” (5% of earmark reserved for this purpose).
    • Emerging Communities (ECs): A portion of Part B base funds is set aside for grants to metropolitan areas that do not yet qualify as EMAs or TGAs, but have 500-999 cumulative reported AIDS cases over the most recent 5 years.  All funding is distributed via formula using living HIV/AIDS cases from all eligible ECs.
  • Part C: Public and private organizations are funded directly for:
    • Early Intervention Services (EIS): to provide comprehensive primary health care to people with HIV, including services to people newly diagnosed with HIV, such as HIV testing, case management, and risk reduction counseling.
    • Capacity Development & Planning Grants: to support organizations in planning for service delivery and building capacity to provide services.
  • Part D: Public and private organizations are funded directly 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. Part D also supports activities to improve access to clinical trials and research for these populations.
  • Part F: Includes the following components:
    • AIDS Education and Training Centers (AETCs): National and regional centers that provide education and training for health care providers who treat people with HIV;
    • Dental Programs: Includes the “Dental Reimbursement Program,” which reimburses dental schools/dental care providers and the “Community-Based Dental Partnership Program,” which funds programs to increase access to dental care for people with HIV and educate providers;
    • Minority AIDS Initiative (MAI): The MAI, created in 1998 in response to growing concern about the impact of HIV on racial and ethnic minorities in the U.S., provides funding across several DHHS agencies/programs, including Ryan White, to strengthen organizational capacity and expand HIV-related services in minority communities.  The Ryan White component of the MAI was codified in the 2006 reauthorization and the 2009 reauthorization required HRSA to develop a formula for awarding MAI grants under Parts A and B.8, 10
    • Special Projects of National Significance (SPNS): Funded through “set-asides” of general federal Public Health Service evaluation funding, separately from the amount appropriated by Congress for Ryan White, SPNS projects address emerging needs of clients and assist in developing a standard electronic client information data system.

Ryan White Funding

Federal funding for the Ryan White Program began in FY 1991 and increased significantly in the mid-1990s, primarily after the introduction of highly active antiretroviral therapy (HAART).  It has continued to increase but at a slower rate, with most increases targeted to ADAPs.1, 4, 18, 19

federal-funding-for-the-ryan-white-program-HIVAIDS-0313

Figure 3: Federal Funding for the Ryan White Program, FY 1991-2012

Future Outlook and Challenges

The Ryan White Program, first enacted as an emergency measure, has grown to become a main part of the fabric of HIV care in the U.S., playing a critical role in the lives of low-income people with HIV who have little or no access through other sources.  As a federal grant program, its funding depends on annual appropriations by Congress, and funding levels do not necessarily correspond to the number of people who need services or the actual costs of services.  As a result, not all states and communities can meet all needs in their jurisdictions.  In addition, as payer of last resort, the Ryan White care system is sensitive to the capacity of and changes in the larger fiscal environment and health system. Recent economic conditions have meant increased demands on Ryan White at a time when resources have been constrained and, as a result, some states have instituted cost-containment measures, such as waiting lists for ADAPs.20, 21  In response, the U.S. government has provided emergency funding to reduce pressure on Ryan White/ADAPs.

Additionally, two developments have altered the HIV/AIDS policy landscape and have implications for Ryan White that are not yet clear—the passage of national health care reform and the release of the first National HIV/AIDS Strategy for the country.22, 23  While the role of Ryan White in light of these developments will likely evolve, the program will continue to be critical for people with HIV.

Endnotes
  1. HRSA. Justification of Estimates for Appropriations Committees, FY 2013.

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  2. HRSA. The Ryan White HIV/AIDS Program Progress Report 2012: Ahead of the Curve; 2012.

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  3. The term “state” used in this fact sheet includes territories and associated jurisdictions.

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  4. KFF. U.S. Federal Funding for HIV/AIDS: The President’s FY 2013 Budget Request; February 2012.

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  5. KFF analysis of data from OMB; 2012.

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  6. For legislative history, see: http://hab.hrsa.gov/livinghistory/timeline/ legislation_hist.htm.

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  7. Ryan White HIV/AIDS Treatment Modernization Act of 2006 (P.L. 109-415).

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  8. Ryan White HIV/AIDS Treatment Extension Act of 2009 (P.L. 111-87).

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  9. KFF. The Ryan White CARE Act: A Side-by-Side Comparison of Prior Law to the Newly Reauthorized CARE Act; December 2006.

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  10. CRS. The Ryan White HIV/AIDS Program; June 2011.

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  11. Client demographics are based on duplicated client counts.

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  12. HRSA. The Ryan White HIV/AIDS Program: 2010 State Profiles. See: http://hab.hrsa.gov/stateprofiles/index.htm. 

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  13. HRSA. Presentation: The Ryan White HIV/AIDS Program: Providing the Health Care Safety Net for People Living with HIV/AIDS (PLWHA); December 10, 2012.

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  14. HRSA. The Ryan White HIV/AIDS Program Population Fact Sheet: Men Who Have Sex with Men; August 2012.

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  15. HRSA. Personal Communication; January 2013.

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  16. “Core medical services” include outpatient and ambulatory health services, medications, oral health care, early intervention services, home- and community-based services, mental health services, and case management, among others.

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  17. Grandfathered EMAs are those that move from EMA to TGA status, based on reported AIDS cases.

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  18. HRSA. Justification of Estimates for Appropriations Committees, FY 2009-FY 2011.

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  19. HRSA. Personal Communication; October 2011.

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  20. NASTAD. National ADAP Monitoring Project Annual Report: Module One; 2013.

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  21. NASTAD. ADAP Watch. See: http://nastad.org/. 

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  22. KFF. The Affordable Care Act, the Supreme Court, and HIV: What are the Implications? 2012.

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  23. White House. National HIV/AIDS Strategy for the United States; July 2010.

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