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Among states with HIV reporting, the CDC has shown a continued rise
in HIV infection rates among African Americans.
Cognizant of this threat, the CBC has remained attentive to the
need to protect and expand the CBC AIDS Initiative.
Under the leadership of Rep. Donna Christian Christiansen (D-VI),
the CBC Health Brain Trust continues to work with grassroots activists and
representatives of community-based organizations to identify continuing
challenges of access, treatment, research and prevention in an effort to
formulate and implement a legislative response.
With the development of advanced drugs that prolong life, many in
the public have been lulled into believing that problem of HIV/AIDS has
been largely addressed. Unfortunately,
glaring holes remain in terms of access to medical treatment, housing, and
prevention services.
The Housing Opportunities for Persons With AIDS program (HOPWA),
administered by the U.S. Department of Housing and Urban Development
(HUD), is intended to provide temporary and permanent housing assistance
to people living with AIDS (PLWA) whose illness places them at risk for
homelessness due to the loss of income accompanying the inability to work.
Unfortunately, while the ideal of the HOPWA program is laudable its
scope of services falls far short of the need.
Only 49,000 people living with HIV/AIDS were served by HOPWA in
1999.
This is a small fraction of the 800,000 to 900,000 estimated
persons living with HIV and the 300,000 estimated persons living with AIDS
in the
U.S.
Out of the total number
assisted in 1999, 50 percent were white, forty-four percent were African
American, 12 percent were of Hispanic origin, and 6 percent were American
Indian/Alaskan native. The
limited scope of HOPWA means that housing slots are in limited supply and
that many are left on waiting lists or shut out entirely.
The program’s limitations complicates the lives of those its
supposed to help, many of whom face rising housing costs and limited
affordable housing options in the areas where they live.
Further, HUD does not have an adequate tracking mechanism to
determine what happens to those who do receive temporary payment
assistance after their 27 weeks of assistance has expired.
This limited and haphazard approach to providing housing assistance
increases the chances that those who the program is supposed to help,
particularly people of color, will fall through the cracks.
Because of their exclusion from private health insurance and
increased likelihood of living in poverty, African Americans with AIDS are
more likely to rely on the Medicaid program for health care assistance.
Indeed, Medicaid serves about 55 percent of all people living with
AIDS and up to 90 percent of all children with AIDS in the U.S.
Yet, the assistance Medicaid provides is deeply problematic because it
does not provide funding that would enable recipients to gain access to
the lifesaving treatment and drugs that prevent full-blown AIDS until an
individual can show financial need and prove that he or she has already
developed full-blown AIDS. The
problem with this backward approach is illustrated by a 1995 study in the
New England Journal of Medicine.
The study found that an HIV-infected individual’s likelihood of
progressing to full-blown status and dying from AIDS is not related to
demographic factors like race, income, or gender but is instead a function
of age, whether they had a low CD4 cell count (CD4 or t-cell counts
measure the weakness of immune system.
A count below 200 means that an individual has developed full-blown
AIDS) and were showing symptoms upon enrollment in the study.
The study concluded that higher AIDS death rates among African
Americans and women could more credibly be attributed to inadequate
medical care than to biological differences among groups.
In essence this study illustrates that when African Americans are
finally eligible for Medicaid, they have little chance of surviving the
disease for long. In essence,
while providing services only when a person living with AIDS is near death
may prove a cost-saving measure for federal and state Medicaid coffers,
the institutional biases it represents drive down the survival rates of
those African Americans forced to rely on Medicaid services.
Two additional studies illustrate the discriminatory nature of the
health care available to people of color.
A study published in the Archives of Internal Medicine found that
Medicaid patients treated for AIDS-related Pneumocystis Carinii Pneumonia
(PCP) were 75 percent more likely to die than those with private
insurance.
In addition, Medicaid patients, who are more likely to be African
American and injection drug users, were dramatically less likely to
receive the proper treatment for PCP or even to have their complication
diagnosed. Those Medicaid
patients who did receive proper treatment, received it later in their
hospital stay than those PLWA who were privately insured.
Findings from this study, have been corroborated by a more recent
study, conducted by the
Institute
of
Medicine
, which found that African Americans had higher death rates due to
pervasive discrimination that made them less likely to receive appropriate
AIDS treatments.
The AIDS Drug
Assistance Program is another public program designed to help PLWA
purchase expensive drug treatments that are the key to disease management
and prolonging life. In 1999,
40 percent of individuals receiving assistance from this program were
white, 31 percent were black and 24 percent were of Hispanic origin.
ADAP is a critical program but access to its services varies from
state to state. Because of the
high costs of AIDS drugs, many states cap enrollment in the program
creating waiting lists for drug assistance.
There is also significant differences in formulary coverage with
six states cap or restrict access to lifesaving protease inhibitors and
antiretroviral therapies.
In addition to the services provided by the Ryan White CARE Act,
HOPWA, Medicaid, and ADAP comprise the components of
America
’s system of care for PLWA. Evidence
from a variety of sources show that, for minorities with HIV and AIDS,
this system is a substandard “danger net” that denies them access to
early treatment and care and provides them with a poor quality of care
once they do receive assistance. The
disparate outcomes are indicative of larger systemic problems in the U.S.
health care system that grossly deny a majority of racial and ethnic
minorities access and it illustrates the disconnect between the unique
circumstances of minorities with HIV/AIDS and the culturally biased
policies that shape the HIV/AIDS infrastructure.
Since a diagnosis of HIV
means a certain early death for African Americans as compared to diagnosed
whites, the only way to stem higher mortality rates under the current
system is by preventing HIV infection in the first place.
Prevention efforts, however, have been hampered by a ban on federal
funding for needle exchange programs, by limited resources made available
for substance abuse treatment, and by the absence of a coordinated and
comprehensive national prevention program.
Absent universal health coverage, the
U.S.
should at least establish a national system of care for people diagnosed
with HIV/AIDS that standardizes treatment options and enables all persons
living with HIV and AIDS to access care early, thereby increasing their
chances for survival.
Obstacles to prevention
are also presented by factors internal to the African American community.
Despite advances in understanding about HIV transmission, many
African Americans continue to engage in risky behaviors and many black
leaders—particularly faith based and traditional leaders—maintain
biased attitudes about the epidemic and the people affected by it.
It is important to note that resistance to behavioral changes and
negative attitudes toward the disease are also widespread among other
racial and ethnic groups in the
U.S.
and abroad. The continued
prevalence of these factors, however, will hamper efforts to address the
AIDS epidemic in a constructive fashion.
While transformative leaders in the African American community have
done much to erase the stigma of AIDS,
increased involvement of pastors and other traditional leaders are still
needed. Indeed, it will take
nothing less than mass mobilization including widespread dissemination of
prevention information and individual empowerment to attain the level of
awareness that is needed to effectively combat the spread of AIDS.
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