2. Overview of the Ryan White CARE Act
This chapter outlines the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, authorized in 1990, amended in 1996 and again in 2000. The chapter describes each Title and highlights the Health Resources and Services Agency's (HRSA) HIV/AIDS Bureau's (HAB) AIDS Drug Assistance Program (ADAP) as a component of Title II. Three attachments provide State-by-State funding levels:
On August 18, 1990, Congress enacted Public Law 101-381, The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. This legislation was reauthorized in May 1996 as Public Law 104-146, the Ryan White CARE Act Amendments of 1996 and reauthorized again in October 2000 as Public Law 106-345, the Ryan White CARE Act Amendments of 2000. The CARE Act represents the largest dollar investment made to date by the Federal government specifically for the provision of services for people living with HIV/AIDS disease (PLWH).
The CARE Act is intended to help communities and States increase the availability of primary health care and support services, in order to increase access to care for underserved populations, reduce utilization of more costly inpatient care, and improve the quality of life of those affected by the epidemic. Briefly, the Act directs assistance through the following channels:
The Health Resources and Services Administration's HIV/AIDS Bureau (HAB) has lead responsibility for the implementation of the CARE Act. Within HAB, the Division of Service Systems (DSS) administers Titles I, II, and the ADAP. The Division of Community-Based Programs (DCBP) administers Titles III and IV, and the HIV/AIDS Dental Reimbursement Program. The Division of Training and Technical Assistance (DTTA) administers the AETC Program and technical assistance (TA) activities for the HIV/AIDS Bureau. The Bureau's Office of Science and Epidemiology (OSE) administers the SPNS Program and manages evaluation studies and data collection/analysis (e.g., the CARE Act Data Report [CADR]).
This chart illustrates how the flow of CARE Act funds varies by Title.
The AIDS epidemic has caused tremendous human suffering and great loss. It has also produced many innovative and practical approaches to the management of HIV services and the delivery of care to PLWH. CARE Act funds have enabled many of these responses to be initiated and sustained. CARE Act programs provide for local control of planning and service delivery. Community-based planning bodies foster substantive involvement of PLWH in the planning of care delivery systems.
CARE Act programs have grown significantly since 1990. In Fiscal Year (FY) 1991, the first year of CARE Act funding, 16 of the largest metropolitan areas in the United States received a total of $86 million in Title I funding. By FY 2001, the tenth year of Ryan White CARE Act legislation, a total of 51 metropolitan areas received $604 million. Grants to States and Territories under Title II have increased from $77.5 million in FY 1991 to $911 million in FY 2001. This increase includes $589 million earmarked set-aside for the AIDS Drug Assistance Program, $11 million for Emerging Communities, and $7 million for the Minority AIDS Initiative. In FY 2001, Title III received $186 million and Title IV, $65 million in funding.
Overview of the Title II Program TOP
All States, the Commonwealth of Puerto Rico, the District of Columbia, and U.S. Territories are eligible to receive Title II grants. Title II grants are awarded to the State agency designated by the governor to administer Title II, usually the health department. These grants are awarded on a formula basis to provide health care and support services for PLWH/A. Title II of the CARE Act also requires the establishment of an ADAP. Section 2616 of the statute stipulates:
A State shall use a portion of the amounts provided to establish a program... to provide therapeutics to treat HIV disease or prevent serious deterioration of health arising from HIV disease in eligible individuals, including measures for the prevention and treatment of opportunistic infections.
To fulfill this obligation, States receive Federal funds earmarked specifically to support ADAPs. These drug assistance programs provide medications to low-income individuals with HIV disease who have limited or no coverage from private insurance or Medicaid.
Title II funds may be used to support a wide range of other services, including home- and community-based health care and support services; health insurance programs; pharmaceutical treatments through ADAP; and local consortia that assess needs and organize and deliver HIV services in consultation with service providers, and health and support services provided directly by the State. States can use a variety of service delivery mechanisms. Some States provide services directly, while others subcontract with local Title II HIV care consortia. A consortium is an association of public and nonprofit health care and support service providers and community-based organizations that plan, develop, and deliver services for PLWH/A.
A consortium must submit an application to the State assuring that it has done the following:
Title II grantees are also required to convene PLWH and representatives of other CARE Act grantees, providers, and public health agencies to develop a Statewide Coordinated Statement of Need (SCSN).
The RWCA Amendments of 2000 provided supplemental funding to States and Territories with Emerging Communities. Emerging Communities are defined as metropolitan areas reporting between 500 and 1999 AIDS cases in the most recent five years. In FY 2001, $11.5 million in supplemental funding was awarded under the Title II program to 39 Emerging Communities in 24 States. State ADAPs can seek to collaborate with Emerging Communities as an additional funding source to provide comprehensive medication therapies consistent with the PHS Treatment Guidelines to clients served.
The RWCA Amendments of 2000 provided funding for the Minority AIDS Initiative (MAI). These funds are to be used to initiate, modify, or expand educational and outreach services for disproportionately impacted communities of color to improve ADAP participation. In FY 2001, $7 million dollars in MAI funding was awarded.
States with more than one percent of the total U.S. AIDS cases reported during the previous two years must contribute their own resources to match the Federal grant, based on a yearly formula (see "State Matching Fund Requirements" in this manual). The Federal grant amount to States, the Commonwealth of Puerto Rico, the U.S. Virgin Islands, and the District of Columbia is determined by either applying a formula, or grantees awarding $200,000 if they have fewer than 90 estimated living AIDS cases, or $500,000 if the State has at least 90 estimated living AIDS cases. Previously, there was no minimum grant amount for U.S. Territories. However, the RWCA Reauthorization of 2000 provided a minimum of $50,000 for eligible Territories.
More than $4 billion in Title II funds have been awarded since FY 1991. The Federal government responded to the rapid growth in the number of ADAP clients and the corresponding rise in costs with an additional $219 million for ADAP in FYs 1996 and 1997. In FY 2001, ADAP received $589 million, bringing total ADAP funding to over $2 billion since 1991. The RWCA Reauthorization of 2000 required three percent of the ADAP earmark to be used for supplemental treatment drug grants to "severe need" States and Territories to increase access to therapeutics. In addition to the ADAP earmark, States may also use Title II formula funds to support their ADAP (see "DSS Program Policy Notice 97-04: ADAP: Eligibility and Formulary Parity and Uses of Funds").
Sources Used for This Chapter
HRSA, HAB, Division of Service Systems. Title II Manual. Rockville, MD: U.S. Department of Health and Human Services, 1999; revised 2002.
Attachment A: Ryan White CARE Act Title II Grant Awards: FY 1991 - FY 1996
Attachment B: Ryan White CARE Act Title II Grant Awards: FY 1997 - FY 1999
Attachment C: Ryan White CARE Act Title II Grant Awards: FY 2000 - FY 2002