Recommendations to Guide the 2005 Reauthorization of the Ryan White CARE Act

Ryan White Comprehensive AIDS Resources Emergency Act

The Ryan White CARE Act (RWCA) was enacted in 1990 in response to the growing number of HIV-positive individuals living in the U.S. The RWCA programs, administered by the Health Resources and Services Administration (HRSA), provide primary health care, pharmaceutical treatments, and support services for low-income people with HIV/AIDS. The RWCA provides services to over 500,000 HIV-positive individuals in all 50 states, the District of Columbia, Puerto Rico and the U.S. territories. The RWCA has been reauthorized and amended twice, in 1996 and 2000, and is up for reauthorization in September 2005. RWCA programs are funded at $2 billion in FY2005.

Need for RWCA Services

An estimated 950,000 people are living with HIV disease in the U.S. and at the end of 2002 over 384,906 of those people were living with AIDS. The RWCA is a social safety net program, designed to be the payer of last resort for HIV services. Some HIV-positive individuals rely on the RWCA to provide their entire medical and support services. However, even individuals who have private insurance often use the CARE Act to provide one or two of their services. RWCA funded clinics and support service organizations are much more likely than other HIV/AIDS care organizations to serve HIV-infected individuals who are poor (80% of users with annual incomes less than 300% of the federal poverty level or the FPL) and people of color (69%).²⁶

HIV-related care is prohibitively expensive for most HIV-positive individuals. Estimates for a year of HIV treatment are approximately $14,000. These costs more than double to $34,000 when an individual progresses to a full-blown AIDS diagnosis.²⁷ The RWCA expressly acts to alleviate some of the financial burdens placed on HIV-positive individuals and their families.

Unmet Need and Ethnic/Racial Disparities

Between 180,000 and 240,000 people living with HIV are unaware of their positive status. Furthermore, over 300,000 individuals living with HIV are not receiving HIV-related care. While ethnic and racial minorities make up just over 25% of the U.S. population, they represent 70% of all new AIDS cases, 69% of the estimated number of persons living with AIDS, and 69% of the estimated new HIV infections annually.^28,29 Being part of a minority group is also associated with less frequent and irregular outpatient care. Several studies have shown increased emergency room visits and hospitalizations and fewer outpatient care visits by minority patients with HIV than white patients with HIV.³⁰ Other studies show that many African Americans and Latinos received care less often, required hospitalization more frequently, and had less access to HIV/AIDS drugs than their white counterparts. Individuals lacking health insurance faced the same problems.³¹ Members of minority groups are also disproportionately uninsured or underinsured. Approximately 85% of African Americans with HIV do not have private insurance and therefore are more likely to depend on the public sector for medical care.³² Poor people living with HIV/AIDS depend tremendously on programs funded through the RWCA and other public providers of medical care such as Medicaid.

Ryan White CARE Act Federal Funding Streams

Title I

Title I provides funding for health care and supportive services to eligible metropolitan areas (EMAs) that report at least 2,000 AIDS cases during the previous five years and have a population of at least 500,000. There are 51 EMAs in 21 states, Puerto Rico, and the District of Columbia.

The Title I allocation is divided into two components:

• Fifty percent of allocations are awarded in formula grants based on the estimated number of people living with AIDS in the EMA over the most recent 10-year period; and

• Fifty percent of allocations are awarded in competitive supplemental grants based on demonstration of severe need and other criteria.

Minority AIDS Initiative (MAI)
Congress established the MAI in FY1999 as the result of the advocacy of the Congressional Black Caucus to address the disproportionate impact of HIV/AIDS among African Americans. In FY2000, Congress expanded the MAI to address the growing needs caused by the epidemic of other ethnic and racial minorities. The MAI was designed to focus special attention on solving a growing public health problem as well as to develop and improve the capacity of minority community-based organizations (CBOs) to more effectively serve their communities.

Title I receives MAI funds to expand medical and supportive service capacity in communities of color and expand peer treatment education that is both culturally and linguistically appropriate to individuals living with HIV/AIDS. The funds are allocated using the established Title I planning council processes to allow each EMA to respond to locally-determined needs.

Title II

Title II provides funding to states and territories to improve the quality, availability, and organization of health care and support services for individuals and families with HIV disease, and provides access to pharmaceuticals through the AIDS Drug Assistance Program (ADAP).

Title II Base
HRSA distributes base Title II funding to all 50 states, the District of Columbia and the eight territories (Puerto Rico, Guam, the Virgin Islands, American Samoa, Marshall Islands, North Mariana Islands, Republic of Palau, and the Federal States of Micronesia) using a formula based on each jurisdiction's non-EMA estimated living AIDS cases over the most recent 10-year period. Estimated living AIDS cases residing within an EMA are also included in the formula, but receive less money per case due to the existence of Title I. States with fewer than 90 living cases receive a minimum Title II base grant of $200,000, and states with over 90 living AIDS cases receive a minimum of $500,000. U.S. territories receive a minimum of $50,000. States with more than 1% of total AIDS cases reported in the United States during the previous two years must contribute a match with their own resources.

ADAP Earmark
The state AIDS Drug Assistance Program provides medications to low-income individuals with HIV disease, who have limited or no coverage from private insurance or Medicaid, in all 50 States, the District of Columbia, Puerto Rico, the Virgin Islands, Guam, the Marshall Islands, American Samoa and the Northern Marianas Islands. ADAP earmark awards are based on a formula using each jurisdiction's estimated living AIDS cases (EMA and non-EMA) over the most recent 10-year period.

ADAP Supplemental
Three percent of the ADAP earmark funds are set aside for grants to states with severe need that meet one of the following criteria: financial eligibility at or below 200% FPL, medical eligibility restrictions, limited formulary composition for antiretroviral medications, or limited formulary composition for the treatment of opportunistic infections. These funds are distributed to eligible states using the same living AIDS cases formula that determines state ADAP awards. States are required to provide a $1 match for each $4 of federal ADAP supplemental funding.

Emerging Communities
Title II also provides supplemental grants to states to support HIV services in emerging communities (EC) -- cities reporting between 500 and 1,999 estimated living AIDS cases in the most recent five years. Title II directs $10 million or 50% of new Title II base funding, whichever is greater, to emerging communities. The greater of 25% of EC funding or $5 million is allocated for tier one (1,000 to 1,999) EC awards, and the greater of 25% of EC base funding or $5 million is allocated for tier two (500-999) EC awards. The formula used may cause the number of ECs to change from year to year. For instance, in FY2001 there were 39 ECs, in FY2002 35 ECs, in FY2003 33 ECs, in FY2004 29 ECs, and in FY2005 28 ECs.

MAI
Title II receives funding via the MAI to increase minority participation in ADAPs and other HIV-related services. HRSA distributes the MAI awards by an estimated living AIDS case formula based on disease burden in minority populations.

Title III

Title III provides direct grants to over 425 community-based primary health clinics and public health providers in 49 states, Puerto Rico, the District of Columbia, the Virgin Islands, and the Federated States of Micronesia, and it is an important means for targeting HIV-related medical services to underserved communities of color and in rural areas. Title III services include HIV counseling and testing, medical evaluation and referral and outpatient clinical care. HRSA distributes Title III funds through competitive grants directed to service providers.

Early Intervention and Capacity Building Grants
Title III provides support directly to community-based providers for early intervention and primary care services for people with HIV/AIDS. Title III also provides funds for capacity building grants to help organizations develop, enhance or expand quality HIV/AIDS primary care services.

Planning Grants
Title III also funds planning grants, which help communities plan activities that will lead to a comprehensive continuum of outpatient HIV primary care services.

MAI
Title III MAI funds are distributed through both Early Intervention and Planning grants to health care providers with a history of serving communities of color to enhance their early intervention services capacity.

Title IV

Title IV provides access to comprehensive family-centered care for children, youth, women, and their families with or at risk for HIV, and access to research of potential clinical benefits. HRSA provides services to this population in 35 states, the District of Columbia, Puerto Rico, and the Virgin Islands.

HRSA administers Title IV funds through a competitive grant application process and directly funds 89 programs in three-year cycles, including 16 youth-focused programs. Title IV grantees include community and faith-based organizations, medical schools, children's hospitals, and state and community health departments.

MAI
Title IV MAI funds are distributed to Title IV grantees to deliver comprehensive, culturally competent and linguistically appropriate HIV care and support services to minority women, infants, and youth.

Part F: HIV/AIDS Education and Training Centers (AETCs)

AETCs support training for health care providers to counsel, diagnose, treat, and manage individuals with HIV infection and to help prevent high-risk behaviors that lead to infection. The AETC program consists of 10 regional programs and four national centers with a nationwide network of over 70 training sites serving all 50 states, Puerto Rico, the District of Columbia, and the six U.S. Pacific Jurisdictions. HRSA awards AETC funds through competitive bids.

MAI
AETCs receive funding via the MAI to increase the training capacity of centers to expand the number of community-based minority health care professionals with treatment expertise and knowledge about the most appropriate standards of HIV/AIDS-related treatments and medical care as developed by the U.S. Public Health Service.

Part F: Dental Reimbursement Program

This program provides support to 66 dental schools, postdoctoral dental education programs, and dental hygiene programs for care provided to persons with HIV/AIDS. HRSA reimburses these programs for the costs of providing oral health care to people with HIV/AIDS.

Special Projects of National Significance (SPNS)

SPNS support the development of innovative HIV/AIDS service delivery models that have potential for replication in other jurisdictions. The SPNS program is the research and development component of the CARE Act. SPNS is funded through a percentage tap on Title I, Title II base, Title III and Title IV of the CARE Act -- up to $25 million.

Community-Based Dental Partnership Program (CBDPP)

The CBDPP funds eligible dental schools, postdoctoral dental education programs, and dental hygiene programs to increase access to oral health care for unserved and underserved rural and urban HIV positive populations. CBDPP funds support 12 eligible entities in 11 states.