Facing The Stigma Of HIV And AIDS In Jacksonville

Jun 11, 2014

Many people may disregard AIDS as the terrifying epidemic of the 1980’s and 90's, but others say there is still a colossal problem with new infections.

During a period in 2011, Florida ranked second in the nation for newly reported HIV cases, and third for newly reported AIDS cases.

Today, Jacksonville is home to about 6,000 people living with HIV and since 2009 Jacksonville has bounced between fourth and fifth in the state for newly reported cases, with more than 300 people diagnosed each year.

Justin Bell is a Jacksonville resident who never thought he would be HIV positive, let alone have AIDS, but in 2007 he was diagnosed with the disease after being face-to-face with death in the emergency room.

“I had experienced some coughing and I just simply thought it was the flu, Bell said. “ It was the time of year for the flu.”

Minor symptoms occurred, he developed a sty on each eye and even a boil on his neck, but then Bell’s coughing became so severe that at work he would have to resort to the fetal position during coughing episodes.

Jacksonville advocate Justin Bellm who is HIV positive, picks up AIDS memorial blankets at Arlington Congregational Church for display at the next location.
Credit Lindsey Kilbride

“One day as my partner drove me to work, as I was no longer able to drive because of the coughing,” Bell said. “The coughing got out of control and I was unable to breath and he took me to the emergency room.”

Bell was sent home with a prescription for phenomena, but five days later he was back in the hospital almost completely unresponsive, it was then that Bell was diagnosed with AIDS.

“I was totally naive to HIV because I thought I led a quote unquote clean life,” Bell said.

Bell later discovered he contracted HIV during a medical procedure years earlier.

HIV is transmitted via blood and other bodily fluids. There are different ways is can be transmitted, such as mother to child, sharing needles, but most commonly during unprotected sex.

African Americans are disproportionately impacted representing 66 percent of Duval County’s newly reported HIV cases.

Dr. Max Wilson, program administrator for disease control at the Florida Department of Health in Duval County said one issue that Northeast Florida faces is late diagnosis.

“They’ve had HIV for a long time, haven’t been tested and becoming sick and are tested as part of the normal medical process maybe sometimes in the emergency room,” Wilson said. “The rates of late diagnosis in Jacksonville are somewhat higher than we find elsewhere in the state.”

Florida isn’t the only state in the South with alarming HIV rates. The Southeast region of the U.S. is one of the most affected areas in the nation. Donna Fuchs, executive director of the Northeast Florida AIDS Network, said seven out of the ten highest states with HIV infections are in the South.

Wilson said there is not one single explanation for elevated HIV infections in the South.

“Some of it has to do with the access to healthcare and preventative resources, Wilson said. “There are some real differences between the access to preventative primary care and other testing resources in the Southeast compared to the Northeast.

Another explanation is the barrier of a mindset in the South that causes people to fear getting tested.  

“We don’t have a collective culture that embraces the idea of preventative care of HIV and testing, Wilson said”

As director of the Northeast Florida AIDS Network, Fuchs has seen firsthand how the stigma of the South affects the HIV positive.

Credit Florida Department of Health

“Some people experience with their families that they don’t have to have anything to do with them anymore,” Fuchs said. “They’re not invited to family gatherings, they’re called names, they’re just told to go away, they disown them.”

Fuchs said she’s even seen people lose their jobs and be evicted once it was out that they were HIV positive.

Wilson and Fuchs both said HIV education in schools in one of the most important ways to prevent new infections.

“The key age for HIV education is pretty young.” Wilson said. “There is no point where it’s too soon to talk about safety and prevention.”

He said the Florida Department of Health is working with Duval schools to institute additional HIV and AIDS curriculum.

Jacksonville is also participating in the Centers for Disease Control’s High Impact Prevention Plan. The cities in the U.S. with the highest number of people living with HIV are awarded funding directed toward prevention and care.  Jacksonville’s plan emphasizes targeted testing, condom distribution and getting the HIV positive into care.  

As for Justin Bell, he is now an advocate for people living with HIV and AIDS. Working as the representative for the Northeast Florida chapter of the AIDS Memorial Quilt and as a representative for the Area Four Health Service Planning Council  for people living with HIV and AIDS, Bell has made it his mission to make sure no one ever feels the way he did when he was diagnosed.”

“I felt very lonely, I felt as if no one else could possibly understand what I was going through,” Bell said. “I think the big message is, let’s get out of our homes as a village, come together and talk about it. This is not a gay disease, this is not a white disease, this is not a black disease. It knows no color, it knows no background. This is everyone’s disease. “

You can follow Lindsey Kilbride on Twitter @LindsKilbride