The fight against HIV/AIDS…Why sitting at the table matters

After 30 years of the HIV pandemic, one might think that terms such as
“community collaboration” and “community participation” would be
commonplace among those fighting the disease.  But in many communities 
across the country, this is not the case.  In fact, the clock seems to
be rolling back to the early days, when the opinions and actions of a
small minority marginalized the voices of those who were most impacted
by the global pandemic.

Make no mistake: many people are indeed living longer with HIV disease
as a result of improved treatments. But with all of the dynamic shifts
in HIV treatment, prevention, and policy, it is especially
disheartening – and, we would say, dangerous – that women, Black gay
men, people of color, heterosexual men, transgender individuals and,
most notably, Black organizations still must fight to be heard by the
decision makers who develop, implement, and allocate funding for
HIV-related policies and programs.

We all know the statistics from the Centers for Disease Control.
Blacks represent approximately 14% of the US population, but accounted
for an estimated 44% of new HIV infections in 2009. Over the same
period, the rate of new HIV infections among Black women was 15 times
that of White women, and over 3 times the rate of Hispanic/Latina
women. At some point in their lives, approximately 1 in 16 Black men
will be diagnosed with HIV infection, many of whom will be Black gay
men, as will 1 in 32 Black women.

Furthermore, Latinos represented 16% of the population but accounted
for 20% of new HIV infections in 2009. In 2009, the estimated rate of
new HIV infections among Latinos was 2.5 times that for White men; for
Latinas, the rate was 4.5 times that for white women.

Black transgender women are more likely to become newly infected with
HIV and studies have shown that infection rates for transgender women
of all races range from 11.8% to 27.7%.

Given these statistics, why are there not more Blacks, Latino/as, or
transgender individuals involved in decision-making processes about
HIV-related policies and programs?  Does it even matter?  We contend
that the answer is a resounding “Yes!”

When the Philadelphia Health Department recently decided to cut much
of its HIV/AIDS prevention programs, organizations serving people of
color were hardest hit.  As a letter to the Philadelphia Health
Commissioner sent by the Black Gay Men’s Leadership Council indicated,
the decision failed to appreciate the cultural capital that
community-based organizations bring to the health milieu in order to
create change.  Had people from those communities been at the table,
perhaps a different decision might have been reached – especially one
without negative repercussions for those most affected.

There are, perhaps, many reasons why this marginalization occurs, but
the primary question remains “where are our voices?”  If we, decision
makers, communities members, elected/appointed officials,
organizations, individuals and communities are ever going to end this
disease we must revisit the issues of representation, inclusion and
parity among decision makers.  We must answer the question, “who is
not at the table, and if they are at the table are their voices being
heard and experiences being honored.”

However, we can’t arrive at the table empty-handed.  The National
Black Leadership Commission on AIDS (NBLCA), a partnership of more
than 25 national and local organizations, recommends the following as
part of a comprehensive strategy for reducing the transmission of
HIV/AIDS: expanding the availability of HIV testing; implementing a
national media outreach campaign focusing on people of color;
directing HIV prevention and testing activities to those at highest
risk; providing adequate funding, technical assistance, capacity
building, and infrastructure development to Black and other
minority-led organizations; prioritizing effective and evidence-based
programs and interventions; and combining prevention approaches.

As we commemorate National Black HIV/AIDS Day on February 7th, we
should remember that any significant, long-lasting progress that will
be made towards stemming the impact of this disease is intricately
tied to our ability to have seats at the decision-making table.

________________________________________________________________Michael Hinson is the Director of Policy and Programs for the International Federation of Black Prides in Washington, D.C. and directs its Act Against AIDS Leadership Initiative Project.


Lisa Fager Bediako is Project Director, Act Against AIDS Leadership Initiative for the Congressional Black Caucus Foundation, Inc.


The Act Against AIDS Leadership Initiative, is a $16 million, six-year partnership between CDC and 19 of nation’s leading civil rights and social justice organizations formed to conduct a wide range of communication, mobilization, action and educational activities among communities hardest hit by HIV/AIDS.

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