Text to the Speech:
12/1/2014 – World AIDS Day Speech – Rochester, NY | Bruce E. Smail, Executive Director | The MOCHA Center, Inc.
- 1.1 million people are living with HIV in the USA — I am 1 of the 1.1 million.
- In 2012, 3,316 new HIV diagnoses in New York — 42.0% Black, 30.7% Hispanic, 20.3%White — 42% look like me
- In the State of New York, I am the only black man openly living with HIV serving as an Executive Director/CEO of an HIV/AIDS organization.
- In this country, I am only aware of one other Black man living with HIV/AIDS serving as Executive Director/CEO of an HIV/AIDS organization — I am sure our numbers are less than a dozen.
- I run one of the two remaining black HIV/AIDS organizations founded by and for Black & Latino gay men in the state of New York.
- What is wrong with this picture?
- Are we valuing the voices of Black Men Living with HIV in this epidemic?
- Who is represented at the Leadership of HIV/AIDS Organizations?
- Who is included and excluded in the original End of the Epidemic Task Force in the State of New York — While I was asked 2 weeks ago to serve on the Task Force, this was after much advocacy and highlighting the omission.
- At events like this — World AIDS Day — why is my voice the only voice representing People Living with HIV/AIDS?
Today, World AIDS Day, is a significant moment to pause and reflect on the many lives lost to AIDS, the many men and women living with HIV and AIDS, and our collective struggle to end the AIDS Pandemic.
I am a black, Caribbean, bisexual, HIV positive man leading an HIV/AIDS organization in Rochester and Buffalo New York. February 10, 2003, I had my first reactive test which led to my HIV diagnosis. Since that point, I was open about my status and have had opportunities to lead two organizations serving largely Black & Latino communities — The Virgin Islands Community AIDS Resource & Education in St. Croix and the MOCHA Center in Western NY.
In December 2013, I decided to begin medication using the once a day anti-retroviral drug – Stribild. In less than 30 days, I was undetectable and my t-cell jumped to over a 1,000. At my last lab work in November, the viral load was undetectable and the CD4 was 898.This decision was based on conversations with top biomedical researchers as well as my primary care physician. The deciding factor for me was the newer research about untreated HIV causing inflammation to other organs in the body. My t-cells were at 700 and viral load was around 1,000 — so this was not an absolute necessary step and one in which I waited over 11 years. We must find new ways of helping PLWH understand the latest research and the risks involved in delayed treatment.
Whether we look locally, in the state of NY, or nationally, the pandemic has always disproportionately impacted communities of color. This is not new news. For people like me, Black and engaged sexually with men, we are impacted with the highest new cases and the highest numbers of people living with HIV/AIDS. This isn’t about culture rather there are many social determinants that impact the health disparities of communities of color — yes HIV/AIDS – but also most other health issues.
We as New Yorkers as well as citizens of this country need to take on a collective responsibility of ending the epidemic. No longer can we assume HIV/AIDS does not touch our lives. We all have family, friends, and colleagues that are sexual and in many cases are having unprotected sex. The risk of HIV is closer to home than you may think.
Are we having the real conversations with folks? If unprotected sex is real in our communities, why is this discussion so taboo? We need to have honest conversations and focus on harm reduction at the very least. We need to create honest dialogues around risks, viral suppression vs unknown viral status, and PrEP vs unprotected sex.
We also need to be sure that People of Color, Living with HIV/AIDS are at the table in discussions, policy development, and decisions regarding the end of the epidemic. If viral suppression is key to this end — People Living with HIV/AIDS must have a voice at the table.
As I end my comments, I ask you to remember this one thing –are People of Color Living with HIV/AIDS represented at your decision tables and/or events? If we are disproportionally affected, our voices are essential in helping us reach the End of the Epidemic. The core of the End of Epidemic is based on PLWHA being in care and virally suppressed. If you look around your table or at your event and we are not represented or have a central voice —- Then You Have Not Done Your Part to End the Epidemic!!! True allies create space for the silenced voices to be heard —- they don’t speak on their behalf!