As a person living with HIV, I have come to quickly learn that many, if not all organizations that have anything to do with HIV & AIDS in existence do not have people with the lived experiences of being HIV positive on their boards. I keep thinking about the The Denver Principles, a list of demands that changed healthcare as we know it. The second recommendation “2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations....” comes to mind. When did we get away from  being the leaders of our own movement? Moreover, when did we drop the ball on HIV 101 in the Black community?

It is frightening to me that I had to explain to a man, a Black man, a straight Black man who is one year older than me (he is age 32) what HIV is and how it works. While I graciously explained and told him he could reach out to me in the future, I thought about those who look like me that work as service providers. They are forced to only focus on MSM or Men who have Sex with Men in their work of getting to ZERO. Many of the the coordinators, prevention specialists, and others who work on the community level are not in management and are Black. There are very few Black persons in management when it comes to organizations that provide care, on top of that, the ones (not all) who are in high level positions tend to come off as elitist and out of touch.

Even more problematic is that the majority are Gay/SGL men, which speaks to the lack of education in the heterosexual, Bisexual and Trans communities. Straight Black women and men are at peril, especially women, IF we are to truly get to ZERO in the black community why are we ONLY focusing on Gay black men. If our community organizations like churches and leaders won’t, why can’t we table in the areas ourselves? When will there be a movement to hold the federal government to the fire to create a tracking system that is more holistic and respectful to the Trans community? After all, why keep counting Transwomen as men, while ignoring Transmen completely?


The point is that those of us in the know have an opportunity to take positions of leadership and take it upon ourselves to educate those we know that are not getting properly educated. We more than just testing if the prevention methodology has not teeth...


“Nothing About Us Without Us!” (Latin: “Nihil de nobis, sine nobis”) is a slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy. This involves national, ethnic, disability-based, or other groups that are often thought to be marginalized from political, social, and economic opportunities.


For more on this topic and to continue reading about the Denver Principes in my related post on Strength in Numbers.