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.”