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

@font-face { font-family: “Times New Roman”; }p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0in 0in 0.0001pt; font-size: 12pt; font-family: “Times New Roman”; }table.MsoNormalTable { font-size: 10pt; font-family: “Times New Roman”; }div.Section1 { page: Section1; }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 percent of the US population, but accounted

for an estimated 44 percent 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 percent of the population but accounted

for 20 percent 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 percent to 27.7 percent.

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 commemorated National Black HIV/AIDS Day, 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.

formed to conduct a wide range of communication, mobilization, action and educational activities among communities hardest hit by HIV/AIDS.

-Special to the NNPA from the Act Against AIDS Leadership Initiative

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