Harold “Scottie” Scott. Photo by John Russell
On Dec. 1, 1994, Harold “Scottie” Scott took a leap of faith and gave the keynote speech at a World AIDS Day awareness event in Cookeville, Tennessee. What began the day as a quiet diagnosis of HIV was soon brought to life on all the local television stations and splashed across the front page of the Cookeville newspaper.
He had become the person he’d been hoping to find the entire three years since his 1991 diagnosis — someone who was brave enough to become the “rural face” of HIV, which in the early ‘90s was thought of only as a concern for major cities.
Scott’s inspiration to publicize his HIV-positive status followed the death of a friend he’d met through a local HIV support group — a group he partially credits for saving his life when his situation seemed hopeless.
Because HIV wasn’t discussed in rural areas like Scott’s hometown of Gainesboro, Tennessee, all he knew about the disease was what he’d seen on TV — people dying due to a lack of treatment options.
“At that time, no one in rural areas had publicly announced that they were living with HIV. There was a lot of stigma attached,” said Scott, volunteer auxiliary president for Vanderbilt Wilson County Hospital. “We talked about how we wished someone would be brave enough to step out of the shadows.”
Now, 25 years after his public announcement, Scott’s mission remains the same: to educate others on the history of HIV, dispel myths and break down the longstanding stigma.
Scott first noticed his symptoms in the spring of 1991 when tiny pin-sized spots appeared on his upper body and arms. A few months later, he drove to a walk-in clinic in Cookeville, where the doctor expressed concern of leukemia and sent him to a Nashville oncologist.
The oncologist tested Scott for leukemia but also asked if he’d engaged in any behavior that could put him at risk for HIV. Scott mentioned a relationship that took place in 1989 but noted that his then-partner said he had been tested for HIV and the results were negative. Scott had also been tested in 1988 with negative results.
“I was naïve and felt that because the partner told me he had been tested, everything was fine,” recalled Scott. Still, he agreed to an HIV test.
A week later, Scott was at work when his manager notified him of an urgent phone call.
“It was the doctor I’d seen the week prior. He immediately said, ‘Your HIV test has come back positive. You have five, maybe seven, years to live. I suggest you find a doctor that will treat you,’” said Scott, who was 27.
“That was it — he just left me hanging. No referrals, no advice. So, there I was with this diagnosis, and I didn’t know what to do or where to turn. It’s like the room began to turn in slow motion.”
Because HIV wasn’t discussed in rural areas like Scott’s hometown of Gainesboro, Tennessee, all he knew about the disease was what he’d seen on TV — people dying due to a lack of treatment options.
Within a few days, Scott became involved with the Cookeville support group after seeing an ad in a local newspaper. From there, he was connected with Stephen Raffanti, MD, MPH, professor of Medicine at Vanderbilt University Medical Center and director of the Vanderbilt Comprehensive Care Clinic, which was established in 1994 as a medical home for patients with HIV. Prior to the clinic’s inception, Raffanti saw patients at the Lentz Public Health Center.
“The first time I met Dr. Raffanti, he reached out with a handshake and actually gave me a hug, and I thought, ‘This fellow is going to be pretty good,’” said Scott, who has been a patient of Raffanti’s ever since. “He was so compassionate. He had an office full of patients, but he took the time to sit down with me and explain what we were going to do. He gave me the option of my input into what my treatment plan would be. We developed a really good relationship.”
Scott has shared his experience in schools and with civic groups across the upper Cumberland area for decades. He also uses his experience as a patient to fuel his part-time volunteer work at Vanderbilt Wilson County Hospital, where he has served for nine years as a helpful guide and listening ear for others who may be anxious about their situation.
Scott made the 170-mile round-trip drive to Nashville once a week for treatment, since none of the doctors near his home treated HIV. He began taking the only HIV treatment available in 1991, which was a drug also used to treat cancer. The overwhelming side effects made adherence challenging.
“Dr. Raffanti kept telling me, ‘There are new things coming down the pipeline. If we can keep you healthy enough until another drug hits the market, then we’ll have more options.’ That’s what I kept in the back of my mind,” said Scott.
In 1996, the first effective antiretroviral drugs for HIV became available, and expanded treatment options began to turn the tide from HIV being a death sentence to a serious, but manageable, disease.
Today, more than 30 drugs exist to treat the disease at different stages. The virus Scott once thought would end his life is now at an undetectable level in his body.
Though many were supportive of Scott’s decision to make his journey public, the road wasn’t always smooth.
“I had people tell me that I deserved to die,” said Scott. “It was a scary time, but it’s something I’m glad I did, because it was like the weight of the world lifted off me, and I think it made a big difference.”
Scott has shared his experience in schools and with civic groups across the upper Cumberland area for decades. He also uses his experience as a patient to fuel his part-time volunteer work at Vanderbilt Wilson County Hospital, where he has served for nine years as a helpful guide and listening ear for others who may be anxious about their situation.
“I try to greet them and make them feel as much at ease as I can. I know from my own experience what a difference it makes to have a smiling face there to guide you through the process,” said Scott, who once dreamed of becoming a nurse.
“Although I didn’t go into nursing, I still feel like what I’m doing is a part of their health care.”
As he continues the journey that began nearly 30 years ago, his outlook is fueled by his personal mantra, found in the signature of his emails: “With each new day comes opportunities, survival and the ability to dream beyond any obstacle that may come my way.”
World AIDS Day is observed every year on Dec. 1. For more information about the Vanderbilt Comprehensive Care Clinic and VUMC’s other HIV resources, visit vanderbilthealth.com/comprehensivecare.
