Once an epidemic in the 80’s and early 90’s, HIV is no longer a death sentence. With proper treatment people are living long and healthy lives after their diagnosis.
But what is yet to change, for many, is the stigma and discrimination some are facing.
“Because you're Black or because you're living with HIV or because you're gay…and so they treat you in a certain manner. And sometimes that impacts people in terms of ‘I will never go back to that doctor's office,’” Lorenzo Robertson said.
Black people are disproportionately affected by HIV in South Florida, but it is not an issue that is unique to our region.
HIV Cases in South Florida
According to the Centers for Disease Control and Prevention, while Black people made up just 12% of the country’s population in 2020, they accounted for 42% of new recorded HIV cases.
The numbers in South Florida reflect this stark reality.
Florida has long topped the list for the number of new diagnoses. Data from the Florida Department of Health shows the state recorded 4,708 new cases in 2021 with nearly 40% of them coming from Broward and Miami-Dade Counties.
A look at who is being diagnosed shows us, in Broward County, there were 283 new cases among Non-Hispanic Blacks compared to 127 among Non-Hispanic Whites in 2021. While in Miami-Dade County, among Non-Hispanic Blacks, there were roughly four times more new recorded cases.
“How do we make sure that the tools are getting to the hands of the people who are most disproportionately impacted,” Dr. Sannisha Dale said.
Dr. Dale with the University of Miami researches how HIV intersects with different South Florida populations.
She says stigma is still a driving force behind the numbers we are seeing.
“In terms of accessing care, people taking care of their health, because people are being treated differently, shunned, and not being seen holistically as the wonderful people they are because of stigma,” Dale said.
She says there are other contributing factors including racism and structural issues.
“That then impacts access to housing, where you live, transportation, food insecurity, and money,” Dale said.
These issues can create barriers to getting tested, being diagnosed, and accessing medication.
The CDC points to one example, health coverage for the drug known as PrEP, a daily pill or bi-monthly shot that lowers a person’s chances of getting HIV.
According to the CDC, only 9% of black people who could benefit from the drug received a prescription in 2020, much lower than any other group.
“We ask people if they know about PrEP before us talking to them, 70% did not, these are predominantly Black neighborhoods,” Dale said.
Breaking the Stigma
There are several South Florida organizations and groups dedicated to heading up HIV prevention and awareness programs in South Florida.
“I had people around me who were living with HIV or were dying of AIDS complications,” Lorenzo Robertson said.
Robertson is the Executive Director of Ujima Men's Collective. The organization focuses on same gender loving men who educate, inform, and encourage other people in the community. The group also advocates for people living with HIV.
“We also do a lot of work to really address the inequities in terms of how HIV is impacting Black people and how we don't get a lot of the funding to do the services that are needed,” Robertson said.
Robertson started his advocacy work in the late 90’s while working at a homeless shelter and respite center.
“We had adults and children who were living with HIV. I was bringing volunteers in to work with the organization. That's when I learned how to be a tester, and I really got more involved in it from that perspective,” Robertson said.
From his own experience, he says diverse voices carrying the message of HIV awareness help to overcome cultural barriers.
“I think that when you have people who look like you and they're coming to talk to you about HIV, you may be more inclined to listen because this is a person who has some of the same familiarity as you…you can see yourself in that person and you're coming from similar or the same type of communities,” Robertson said.
Alecia Tramel-McIntyre is the founder of Positive People Network, Inc, an organization focused on ending the stigma around HIV by providing social activities for people living with HIV.
“The mission is a better quality of life for people living with HIV and AIDS to not be in isolation. Stigma. Fear to live and thrive,” Tramel-McIntyre said.
Tramel-McIntyre was diagnosed in 2000 and spreads her story of finding love after diagnosis with her husband Harold McIntyre.
“So it came about when I was trying to figure out a way to engage the community on love after diagnosis. Everybody seems to think once you're diagnosed, no one is going to want you… we found each other after diagnosis,” Tramel-McIntyre said.
The couple is known in the community as “Mr. and Mrs. HIV.” A title the couple does not back away from.
Harold says he intersected with HIV through drug use.
“I just shook my head. I didn't know what to do. I was killing myself already. And here it is, something came along that might kill me a little too fast,” Harold said.
Harold says he made lifestyle changes and years after diagnosis, he started treatment.
“It changed life for me because it made me become more aware of me and my partner, because I pay attention to what's going on and I pay attention to my wife,” he said.
Life after Diagnosis
Many advocates are sharing their personal stories in hopes of fighting back against stigma.
“I am a generational domestic violence survivor,” Shawn Tinsley shared with us. “My mother was abused by my father.”
She says when she ran away from her own abuser, she wound up running to a family friend.
“To run away from that, I ended up running into a family friend who actually raped me,” she said.
She says six months later she was diagnosed with HIV. A diagnosis she later shared with her family.
“I was handed paper cups in paper plates and plastic utensils and things like that. So, it kind of made me stay away from the family, you know, just to tend to myself and my daughter and my son at the time and just focus on us,” Tinsley said.
Tinsley says years later she started advocating for domestic violence victims and most recently started sharing her own journey with HIV.
“I am positive (for) 33 years. God has blessed me to be positive. And I have just turned 50. So when I turned 50…I gave in to be able to allow this to be a part of my testimony,” Tinsley said.
She now spreads a message of compassion and acceptance.
“I'm doing positive things and they can, too,” she said. “Yes, this is here, but it doesn't have to rule you and you don't have to be ashamed anymore.”
It’s a message Jamaal Starks is also sharing.
“Because of the stigma that always comes with HIV. Usually, people think death gloom… I'm like, no, no, no, no, baby. I'm thriving. I'm thriving in life,” Starks said.
Starks works with several local organizations including the local chapter of Impulse Group, an organization dedicated to building stronger and healthier communities for gay men.
He says after he was diagnosed, he shared this status with only a few close people.
“A lot of my family members or close friends were just very sad that I didn't feel comfortable enough to even tell them", he said. “I felt like if I told them, it would be a burden.”
Starks says forgiveness, compassion, and grace helped him move forward in his life and find acceptance.
“Because once you find grace and compassion within yourself, you'll find it for other people,” Starks said.
For Christopher Barnhill, he said his journey to forgiveness started by forgiving his family who kept his diagnosis a secret from him for 16 years.
“It would not have been easy for me. And so what they thought they were doing was protecting me…they didn't have the knowledge to educate or the money to really put me through the program that could really support me,” Barnhill said.
Barnhill says he learned of his diagnosis at a health fair while he was in high school. He says a family member later told him his mother passed away from AIDS-related complications.
He says he immediately started doing HIV awareness work.
“I've worked everywhere with young people. I worked in a prison, I worked in a hospital setting. I have worked with people like young gay Black men. I've worked with people who were over the age of 60. I've worked in so many areas of HIV work that I just knew that this is just like my life's work and my life's mission,” Barnhill said.
