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Action = Life

Your Guide to the New Ryan White CARE Act

January 2001

Overview and History

Throughout much of 2000, the HIV community was focused on the reauthorization of the Ryan White CARE Act. This piece of federal legislation serves as the cornerstone of the HIV-specific system of care and treatment in the United States. The CARE Act was originally adopted by the U.S. Congress in 1990, and reauthorized in 1996. In late October of 2000, the CARE Act was again reauthorized for another five years.

The CARE Act, which stands for Comprehensive AIDS Resources Emergency Act, was named to honor the memory of early AIDS-advocate Ryan White. Its original intent has not changed much through the past two reauthorizations. It is the only disease-specific federal act, and was created due to the severe lack of funding for AIDS-related services throughout the 1980s. The CARE Act is designed to fund state and local governments, and affiliated nonprofit agencies, so they are able to provide a vast array of essential medical and social services to low income people who are HIV positive.

The reason we have a CARE Act is a result of the fear and discrimination that was so widespread in the first decade of the epidemic. Because so many existing health care providers and social service agencies refused to see people with AIDS, a grassroots network of non-profit agencies developed within specific communities. Likewise, due to the high medical costs associated with AIDS, most local public health systems were concerned that they would be bankrupted without a new source of funding. With the development of the CARE Act, these struggling community-based organizations and public clinics finally were able to provide the level of care needed.

This history of how services were developed, as well as the role of the CARE Act, is important to keep in mind when looking at the CARE Act today. The CARE Act is designed to provide comprehensive services in very diverse communities with widely disparate needs and resources. Due to this core value of the Act, services are not provided in the same way across the country. Currently, there are five portions or Titles, that make up the CARE Act. These Titles were developed to address the unique needs of urban areas, state health departments, poor and disenfranchised people, and specific affected communities and populations.

The CARE Act was also shaped to support areas hardest hit by the epidemic. This often led to high levels of funding and development of services in areas such as New York, Chicago, San Francisco and Los Angeles. As the epidemic has moved geographically, the federal resources were often slow to follow.

The reauthorized CARE Act will attempt to level this disparity without disrupting established services where the need is still severe. The primary changes that affected all Titles include a focus on the important of medical providers adhering to the most recent US Public Health Service guidelines; greater coordination with Medicaid and Children's Health Programs; a focus on providing for early intervention programs for people recently diagnosed with HIV; and guaranteeing that supportive services such as housing, case management and educational programs are linked specifically to assist people in receiving adequate medical care.

Reauthorization Title by Title

Title I

Title I funds urban services in what are known as Eligible Metropolitan Areas (EMA). Atlanta is one such EMA. Over the next five years, EMAs will need to develop services targeted at individuals who are not currently receiving care and for youth between the ages of 13 to 24. The amount of funding each EMA receives will be based on a new formula and will eventually be based on reported HIV cases, rather than on cumulative numbers of AIDS cases as it is now. No EMA will lose more than 3% of its funding from the previous year, however, funding will shift in this new formula so that smaller cities such as Atlanta and Denver are likely to receive larger increases.

Local planning councils will still determine decisions regarding what types of services will be funded and how they will be evaluated and provided. These planning councils have always ensured local control over these vast amounts of federal funds, but the make up of planning councils will change dramatically. Membership of the planning councils will need to include agencies that provide HIV prevention services, homeless services providers and individuals who are knowledgeable about inmates.

In what is perhaps the most dramatic change, beginning this next year, at least one third of planning council members must be people who are HIV positive, receive services funded by the Ryan White CARE Act, and who are not board members, paid staff or paid consultants to agencies funded with Ryan White funds. In the coming months, there will a big push in areas such as Atlanta to recruit new people to assist with making the important decisions required by planning council membership.

Title II

These are funds used to support the programs of state health departments, and includes the funding for the AIDS Drug Assistance Program (ADAP) and the Insurance Continuation Program (ICP). Many of the requirements of serving new populations and following established guidelines for medical care will apply to Title II, just as in Title I. Funding will also change by providing a higher minimum level of money for all states, and by providing funding for areas who have increasing numbers of AIDS cases, but are not able to meet the requirements for funding under Title I.

Specific funds will be made available for states to implement or enhance their partner notification programs and to develop programs for mandatory testing of newborns. While there are certainly valid reasons to encourage partner notification and to educate women on the need for HIV testing as part of their prenatal care, it will be important for advocates to monitor the implementation of these programs to guarantee that the basic rights of people living with HIV/AIDS are respected.

Title III

Funds provided under Title III are directed to specific nonprofit agencies that provide care to hard-to-reach populations, such as the homeless in both rural and urban settings. Over the next five years, these providers will also be expected to include partner notification programs. There will also be an emphasis on funding rural programs and building the capacity of service providers in underserved communities.

Title IV

This title has been completely reorganized to include services previously provided under Part F. Title IV funds will still be used to fund services targeted at women, children and families, but will now also include funding for AIDS Education and Training Centers (EATC) and the Dental Reimbursement program. EATCs, which provide a variety of training on HIV issues for professionals and service providers, will be required to create specific guidelines on how to care for HIV-positive women that focuses on prenatal and gynecological care. The Dental Reimbursement program will expand the definition of eligible programs to encourage greater cooperation between dental and dental hygiene schools and community-based dentists in a hope of expanding services to people with HIV.

Thanks for CAREing

To have this important piece of legislation reauthorized in such an unsettling political environment is proof of what our community can accomplish when we work together. National organizations such as the Cities Advocating Emergency AIDS Relief (CAEAR) Coalition, the National Minority AIDS Council, AIDS Action Council and the Human Rights Campaign, and local agencies from around the country joined forces to have the Ryan White CARE Act reauthorized in a way so that it's original intent and philosophy are intact.

AIDS Survival Project would specifically like to acknowledge the work of individuals such as Jacque Muther, Tony Braswell, David Reznik and Jeff Cheek; the organizational efforts of AID Atlanta, Grady IDP, Project Open Hand and HIV Dent; and the participation of thousands of people living with HIV and their supporters in guaranteeing that Ryan White will be around to provide essential services for the foreseeable future.

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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
See Also
Purpose of the CARE Act
Guiding Principles for CARE Act Programs
More on the Ryan White CARE Act