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.
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.
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.
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.