Ryan White CARE Act

I'm Utsha Khatri.

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, was the first piece of comprehensive AIDS legislation created to provide funding for people living with AIDS (PWAs) to access care and treatment. Ryan White was a young, Caucasian hemophiliac who contracted HIV through a blood transfusion. He was diagnosed with AIDS at age thirteen and died six years later. Prior to the media’s coverage of the Ryan White story, it was widely held that HIV/AIDS only affected marginalized sectors of society namely homosexuals, intravenous drug users, and racial minorities. However, because of the widespread media attention given to the Ryan White story, the American people soon realized that this was not the case and that it could potentially infect anyone. When Ryan White’s story was put on the media agenda in 1985, it changed the meaning of HIV/AIDS for the media, the public and policymakers.

Political scientist Mark Donavan explains that this shift in public consciousness allowed policy-makers to formulate an AIDS policy that would deliver benefits to what were considered “deserving” target populations. When people with AIDS were considered to be social deviants and dependents, policy-makers could not defend the use of tax dollars to provide care and treatment to these populations. However, when Americans realized that the HIV/AIDS epidemic started affecting “innocent victims” (whose infection was not caused by their behavior), policy-makers were able to create programs to provide benefits to a “deserving” population. For this reason, Ryan White CARE Act bills passed both houses with overwhelming bipartisan support in 1990.

Donavan emphasizes that during the drafting of the legislation, lawmakers attempted to, “downplay the receipt of benefits of gays while emphasizing the benefits granted to positively constructed populations, most notably children,” During floor debates lawmakers told moving stories of people with AIDS to win over support for the bill. Of the 19 stories told on the Senate floor, only one story was that of a homosexual. Lawmakers needed to justify the act by ensuring each other and the public that the recipients of the benefits did in fact deserve it. Donavan describes the final version of the bill emphasized women and children as the “victims” of the epidemic and deemphasized the extent to which benefits would be delivered to negatively constructed groups. The bill did nonetheless provide benefits to populations with negative social constructions as well; however, to the public, the policy was directed towards helping populations with positive social constructions.

The Ryan White CARE Act was first passed in 1990 as Congress’ attempt to financially assist many urban public hospitals that had not been compensated for care they provided to AIDS patients. It was reauthorized in 1996, 2000 and most recently in 2006. The reauthorization in 2006 changed the acceptable use of Ryan White funds. The amendments emphasized providing funding to urban areas with the highest prevalence of AIDS, encouraged outreach and testing and required that 75% of funding be spent on “core medical services.” Core medical services include services such medications, outpatient and ambulatory medical services, mental health services, substance abuse services, hospice care, early intervention services and home health care. Ryan White funds are also used for support services, including transportation, respite care, outreach and language services.

The Ryan White program presents the third largest source of federal funding for HIV/AIDS care, after Medicaid and Medicare. Currently, it provides about $2.2 billion a year to fund over 2,500 organizations and provides some level of care to about 500,000 people living with HIV/AIDS. Unlike Medicaid and Medicare, it is not a health insurance program. It is a series of flexible grants given to cities, states, and other public and private nonprofit organizations to develop and operate systems that deliver health and support services to uninsured or underinsured individuals affected by HIV/AIDS. Though the CARE Act was originally designed to fill the gaps in financing care, it has now grown into a major source of funding essential to the operation of HIV/AIDS programs across the country. The reauthorization in 2006 extended the program for an additional three years. After September 30, 2009 further legislative action will be needed to provide continued federal funding.

It is important to recognize that the program by itself is not capable of improving access to HIV/AIDS care and treatment for the majority of the infected population. The CARE Act is a discretionary grant program that receives annual appropriations from Congress. Services are provided only as long as the finite funds last. Therefore, it is not able to meet the rising demands in services due to the growing number of people living with HIV/AIDS. Furthermore, CARE Act programs vary from region to region due to the flexibility given to organizations in formulating programs and services. The programs therefore do not provide a single, unified policy solution to a national problem. Rebecca Haag, Executive Director of the AIDS Action Council, while expressing appreciation for the 2006 reauthorization, stressed the need of more funding. As Haag described, “…this bill alone is not sufficient to ensure that life saving drugs and medical treatment is available to all who are infected. Appropriations have fallen far short over the last several years while the epidemic is growing with 40,000 new infections every year.”