You’d never know it by looking at the fit, handsome activist and model today, but it was only a few years ago that Simba Say lay dying in a hospital bed. He was so close to death, he said his last goodbyes to his parents and prepared to meet his maker.
He was raised in a devoutly Christian home, and faith has always played an important role in his life. Coming out gay to his very religious family was difficult. Still, when he received a positive diagnosis in 2013, Say wouldn’t start treatment until he shared the news with them. The only problem was he initially couldn’t bring himself to have that conversation with his family.
“Weeks went by before I actually decided to sit my mom and dad down, and even before I went to see a specialist,” Say shared in a video for A Million Reasons to Love (AMR2L.com), a nonprofit he founded that raises funds for LGBTQ- and HIV-related organizations throughout the U.S. “And that’s where things got very interesting for me in this whole process.”
After talking with his parents, Say chose not to see an HIV specialist, who would have prescribed the highly effective antiretroviral therapy that is now a universal treatment for those living with HIV. Instead, he says he was seduced into trying a nontraditional, non-Western-medicine approach that promised to “cure” him of HIV. It didn’t. Meanwhile, his health continued to fail, and Say continued to wrestle with his relationships with God, family, and depression.
As for “trying alternative treatments — don’t,” Say advises bluntly. “I have been there, and I understand that when emotions are high, intelligence is low. Don’t let the stigmas of HIV define your path with treatment. When diagnosed, I instantly fell victim to my own mind. The echoes of stigmas rooted in faith and government, stigmas rooted in the LGBT community itself, stigmas rooted in the South — I quickly let take control. I let the fear of others define me as ‘dirty’ [and] take away everything that was beautiful about myself. So much that it almost took my life.”
He recalls ending up in the hospital when “my CD4 count had dropped into the low 50s… and I had a viral load of over 2.2 million,” in addition to being diagnosed with Kaposi sarcoma, an AIDS-related skin cancer — all signs that his HIV had progressed to stage 3.
With his physical and mental health both rapidly spiraling downward, Say was feeling desperate. He turned to the church of his childhood. “Even though I’d run from the church — because of my sexuality, because of the fear of judgment — I ran back,” he explains. “Running back unfortunately introduced me to a very dark side of religion.”
After reaching out to the church for help, Say was convinced to see religious-based “healers” in San Antonio, Texas, an experience he describes in retrospect as “horrific.”
Fortunately, Say was eventually able to escape his oppressive situation, get counseling, and finally find appropriate medical care. Today, the out gay, poz working model, entrepreneur, and activist is happy to report he’s in great health and his viral load has been suppressed to undetectable levels. That means he’s no longer able to transmit the virus to others, something Say is proud to share with the world.
Getting the facts out about HIV, including that undectable equals untransmittable (U=U), is a huge part of why Say is going public with his own story. He says despite how far we’ve come, there’s still a lot of stigma and misinformation out there, and the media can still get it wrong.
He says that although reactions have been very positive and supportive, “there have been some unfortunate experiences — such as a reporter stating that I am contagious and can spread it others, yet I am undetectable.” Though he feels that the reporter wasn’t being intentionally offensive, Say says after witnessing a poz acquaintance’s reaction to the story, he was inspired to do more.
“[He] is not public at all about it and he doesn’t even try to date because of the stigmas still prevalent in the LGBT community. Seeing his reaction of pain and anger to those few statements she made helped me realize I needed to do better at raising the level of awareness on where HIV is today.” And with A Million Reasons to Love, he’s doing just that.