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State Foster Care Officials Needlessly Stoke Fears of Life-Saving HIV
Care in Black Communities
Black Americans must
take charge of our own healthcare and demand the quality of treatment we deserve.
Recent news that at least seven states
failed to appoint independent advocates to monitor the care of hundreds of HIV-positive foster children they
enrolled
in clinical trials for AIDS drugs raises several critical concerns for the African American community. Many in our communities
are already skeptical of medical care in general and AIDS treatment in particular--a fact that leaves too many unwilling to
access treatments that may save their lives. The child welfare systems in the seven implicated states have needlessly stoked
such fears. By disregarding these foster children's medical rights and failing to
keep their families involved in their
lives, they turned an important success--getting the kids cutting-edge treatments that prolonged their lives--into yet
another
reason for Black America to distrust public health.
This latest healthcare controversy, however, also highlights
the reality that African Americans must become proactive in the fight for respectful and high-
quality care. We account
for half of all new HIV infections and can no longer afford to accept the artificial choice between avoiding the healthcare
system and being exploited by it. The lesson of the AIDS epidemic has been that communities can change how public health
interacts with them if they
demand the quality and respect they deserve.
Already, rumor has begun to outpace fact
in the foster care story. Here's what we now know: Federal rules stipulate that when child welfare systems enroll
foster
kids in studies that involve significant risk they must appoint an outside advocate to make decisions about the child's care.
According to several news
reports, most recently an in-depth Associated Press investigation, child welfare officials in
Colorado, Illinois, Louisiana, Maryland, New York, North
Carolina and Texas failed to do that. They enrolled positive
foster children in more than 48 different AIDS-related drug trials throughout the 1990s
without appointing independent
advocates for them. The majority of the children involved are believed to be Black or Latino.
A primary concern the
states' actions raise is far broader than HIV: Too many Black children are living as wards of the state rather than with their
families
or in their communities. Just under half of the nation's foster kids are African American. Too often, child welfare
systems unnecessarily remove poor,
Black children from their families and needlessly delay reunification--another byproduct
of the overaggressive "war on drugs". That means a range
of decisions about these young folks' lives are being made not
by family members--biological or otherwise--but by bureaucrats.
But the irony of the controversy is that the children
involved likely got far better care than many Black people living with HIV, of any age. The import
of African-American
participation in AIDS-drug trials has been lost in the press reports and growing community outrage surrounding this controversy.
African Americans participate in clinical trials in far fewer numbers than whites, both because of our distrust of the
medical system and because research
institutions fail to adequately invest in securing and facilitating our participation.
That's bad for everyone, because we don't learn how the drugs perform inside
the lives of the people who are most-affected
by the epidemic. But it's also bad for individuals. HIV is a crafty virus, constantly mutating to stay a step
ahead of
the medications doctors throw at it. And clinical trials often offer the sorts of cutting-edge treatments that keep you alive
even when the virus
has advanced in your body.
African Americans are missing out on these and other cutting-edge
medical treatments--even as we die at seven times the rate of positive whites--in no
small part because of our skepticism
about the healthcare system. Rampant conspiracy theories about AIDS and its treatment in Black neighborhoods
both grow
out of and intensify that skepticism, and betrayals like the one involving the foster care system needlessly make matters
worse. But
information is the best antidote to disrespect and exploitation in healthcare settings. As a community, we
must refuse to become distracted by conspiracy
theories and instead proactively engage the healthcare system. It's time
to stop hiding from the mistreatment healthcare providers and researchers may hand us and start demanding the sort of care
that we deserve from them.
About the Black AIDS Institute
The Black AIDS Institute is the only
HIV/AIDS think tank in the United States focused exclusively on Black people. The Institute's mission is to stop the AIDS
pandemic in Black communities by engaging and mobilizing Black institutions and individuals in efforts to confront HIV. The
Institute interprets
public and private sector HIV policies, conducts trainings, offers technical assistance, disseminates
information and provides advocacy from a uniquely
and unapologetically Black point of view.
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