HIV activist

Harold Scott of Lebanon, who was diagnosed with HIV 30 years ago, spends a lot of time raising awareness and support for people with the disease.

One Lebanon resident continues a mission he started nearly 30 years ago — to raise awareness and fight against the stigma of HIV and AIDS. 

Harold “Scottie” Scott, 57, chose to share his story of contracting HIV in hopes of raising awareness about the virus, dispelling myths about those living with HIV and AIDS and providing some guidance and hope for those who find themselves in a similar situation as he did several decades ago. 

Scott grew up on his family farm in Jackson County, and has lived in Lebanon for about 10 years.

He describes his infection as a “homegrown” case. 

“That means I became infected where I was. It wasn’t uncommon then for people to leave to a big city like San Francisco, New York or something, get infected and then, basically, return home to die,” he said. “At that time, there wasn’t a lot of treatment options, so once you got sick, that was basically it.”

Scott began a relationship with an older partner in 1989 and discussed the topic of AIDS and protection. The relationship lasted about three months from late 1989 to early 1990.

“I had seen something about it in the news on TV, but it was in large cities, and what I saw was people sick and dying in big cities like San Francisco, especially among gay men. It was showing the death side of it,” Scott said. “It wasn’t something — a bit naive on my part — that seemed to be happening in the rural areas.”

Scott was hospitalized in March 1990 for about three days with a severe ear infection and flu-like symptoms. However, the doctor could not find a cause for the health issues. 

“Looking back, it was the infection taking over my body and doing its thing,” he said. 

He was sent to an oncologist in Nashville under the assumption he had leukemia. During testing, it was discovered that his platelet count was off the charts and the doctor suggested an HIV test. 

Scott was at work Oct. 24, 1991 around 11 a.m. when he received the call from the doctor. 

“He said, ‘Your HIV test is positive. You have five, maybe seven, months to live. I suggest you find a doctor who will treat you,’ ” he said. “The room started to look like a blur.”

“No one had ever done it”

Scott said he went into a dark place after the diagnosis, but he eventually got help from Tennessee Health Department counselor Barbara Burchett, and joined a local HIV/AIDS support group. 

He met his caregiver Dr. Stephan Raffanti, now with Vanderbilt University Medical Center, and took his first dose of AZT (the only HIV medication available at the time) on Christmas Eve 1991. 

“The first night I went to the support group happened to be the night (NBA player Earvin ‘Magic’ Johnson) made his announcement about his HIV status. I remember getting ready to go the meeting and breaking news came on with Magic making his announcement,” he said. 

Scott said through the support group, he began to understand the disease and how it affected different people, discover ways to cope with HIV and build meaningful relationships with others like himself.

One of those friends inspired Scott to go public about his HIV status and put rural areas on notice about the disease and misconceptions around it. 

“No one had ever done it in that area,” said Scott, although the first diagnosed case of HIV in the Upper Cumberland area was in 1981, about 10 years before his own diagnosis. 

Scott went public with his HIV status on World AIDS Day — Dec. 1, 1994. 

“It was like I was looking at my life through someone else’s eyes,” Scott said. “I had the spotlight on me because I went public with my status and, at times, it looked like I was looking at someone else’s life but my own.”

The journey continues 

Scott has chaired the Upper Cumberland Regional Ryan White HIV/AIDS Education and Awareness Committee, contributed online to Healthline HIV Awareness and The Body, and traveled across the country for speaking engagements about HIV and Aids. 

“I find that, especially going into schools and that type of setting, it makes a greater impact on someone when they can see someone living with HIV, especially me being from a rural area,” Scott said. 

Scott also heads the Vanderbilt Wilson County Hospital auxiliary volunteer group. He has volunteered there since 2011. 

“Most everybody there knows about me and, for the most part, I’ve gotten a lot of support,” Scott said. “I wish there were more people open like me, but I understand why some people can’t or won’t because you still have your job and family to think about.”

Scott also praised the HIV and AIDS services offered at Vanderbilt University Medical Center, spearheaded by his Raffanti, his longtime personal medical caregiver. 

The Vanderbilt Comprehensive Care Clinic provides services for people living with HIV, including medical evaluation and follow-up care; case management; access to screening and clinical trials and nutrition advice.

“It’s something you learn to live with and try to manage the best way you can,” Scott said. “For me, it has become more of a mental thing than it used to be.”

Recommended for you