Even though the rate of new HIV diagnoses is declining nationwide, Jacksonville’s is on the rise. And African-Americans are most likely to be infected.
In particular, black women in Northeast Florida are almost 7.3 times more likely to contract HIV than white women, according to the Florida Department of Health.
But one Jacksonville advocate is on a mission to close that gap — starting with young girls.
Marion Merritt doesn’t mince words when it comes to reproductive health. For more than a decade, she has led conversations on safe sex and HIV prevention for black girls.
Agape Curtis, now a University of North Florida sophomore, was just 5-years-old when she joined the group back in 2005.
“It was uncomfortable at first, but over time, you know, I got to see the benefits of it,” she said. “These are things I actually need to know about”
Curtis named the group the Princess Club. She said the group would go horseback riding or roller skating, along with having talks about reproductive health — talks she wasn’t having at home or at school. She stayed in the group until she was 15.
“A lot of people look at this as taboo in a way and it shouldn’t be taboo at all because it’s natural, you know,” she said. “These are things that we experience as human beings and we need to learn about these things at a young age.”
At first the girls would giggle, Merritt said, but they would soon be able to have mature conversations.
“They can tell you how to get the virus, how to keep from getting the virus. And that was the most important thing to me,” she said.
The longtime advocate wasn’t always this outspoken. Merritt was diagnosed with the virus in the mid-90s, and lived in the shadows for years.
“I didn’t want to tell my family because I was embarrassed. That’s what society made you feel like. Having the various ‘you’re just terrible, that’s just shameful.’”
Merritt said she would hide her medication and sometimes even toss it in the trash. That’s a common problem, said Dr. Mobeen Rathore, who is the head of Jacksonville’s UF Center for HIV/AIDS Research.
“For many years, there was still a lot of stigma. There still is. I think people not wanting to get tested, people not wanting to stay in care,” he said.
HIV prevention has come a long way, Rathore said. The rate of transmission from mother to child is now less than 1 percent, thanks in part to a 2005 Florida law that made testing pregnant women routine.
“HIV infection should be dealt with like any other disease,” according to Rathore. “It should not be a judgement on somebody.”
But Merritt said a strong stigma remains in her community. African-Americans in Northeast Florida make up 20 percent of the population, but about 63% of new HIV infections. It took her 11 years to tell her family about her diagnosis. She did so after she found a support system at the nonprofit Northeast Florida AIDS Network, where she was working until 2014.
That’s where she jumped at the opportunity to mentor girls.
“I ended up with a bunch of little girls and it was the best thing that ever happened to me because I could teach them about sex, I could teach them about their body parts,” she said.
Merritt said many original Princess Club girls were the children of friends, and now she’s reaching out to strangers, who aren’t as open to the idea. But she isn’t ready to give up.
”I will tell you this, it won’t end until I am gone,” she said.
Merritt hopes her next group of kids includes both girls and boys.