Gary Fowler was diagnosed with AIDS and got a lesson in how strong the stigma against the disease could be in rural Morganfield, Kentucky - all at the same time.
“I was diagnosed in April, 1995,” Gary says. “I had to wait three weeks to get the results of my test. When they came in, the nurse told me I had AIDS over the phone. Then she scotch-taped the results of my test to the front of the doctor’s office so I could pick them up without coming in. They wouldn’t even see me, much less treat me.”
Fortunately, Gary had a sister who was a medical technologist, and she knew of a young doctor who had just moved to town. “He wasn’t afraid,” Gary says. “He took extremely good care of me.”
At the time of diagnosis, Gary’s T-cells were only 146 and his viral load was more than 100,000. Fortunately, Gary’s doctor was able to enroll him in a clinical trial of Crixivan, one of the very first protease inhibitors, which was being conducted at Vanderbilt University in Nashville, TN. Crixivan worked for him, and he’s only been on two different medical regimens for the past 11 years: Crixivan and Combivir for the first nine years, then Kaletra and Combivir.
Involvement in the clinical trial meant driving two-and-a-half hours to Nashville a couple times a month. “I thought I was going to have to move to Nashville,” Gary said. “But I found I had a secret support group right here. My dad is a retired Kentucky State Trooper who became a local city police officer and Assistant Chief of Police. My mom was a cashier at the grocery store. We lived in a real rural setting, and the last thing you’d expect to find here was support. But I found it in my family.”
“My dad was the first to step up to the plate. He said, ‘You’re my son and we’re going to take care of you.’ My sisters and brother learned about HIV and AIDS and educated their kids. My family has been like a rock ever since.”
When he was first diagnosed, Gary was told he had six months to a year to live.
“But once I got in the Vanderbilt study, I started getting healthier and healthier. I started thinking about finances. I had my degree in Social Services, but that’s not a career that pays very much. So I got my real estate license, and did very well in that field, which led me into mortgage banking. It paid well enough that I could keep up my insurance and pay $1,500 a month for my medications after the Vanderbilt Trial ran its course.”
About that same time, Gary found someone. “My first true long-term relationship. He was and remains HIV negative. We moved in together. That lasted eight years, was very supportive, and my viral load was undetectable throughout that time.”
That relationship was followed by one that led Gary to Ft. Lauderdale, Florida, lasted only a couple of years and ended “in disaster.”
“I came back home with just what I could drive with,” Gary says. “I was heartbroken, devastated. At the age of 35 I moved back in with my mother.”
Gary went to a local AIDS Service Organization called Matthew 25 for his care and, with time on his hands, began to do volunteer work for them.
“A couple of months after I got back, Matthew 25 got a CDC Prevention Grant,” Gary says. “All of a sudden they needed a manager with a degree in Social Work, knowledge of HIV, an outgoing personality… I was in the office printing out this job description, and it was a description of me! I put it on the administrator’s desk along with a copy of my resume.”
Gary got the job, and it’s been a perfect fit. Today he is Prevention Team Leader for Matthew 25, working with five other people to spread the word through 52 counties in Kentucky and 11 counties in Indiana.
“We’ve given safer sex kits to 21,000 people in over 30 locations,” Gary says. “We’ve done over 600 OraQuick HIV rapid tests. Last quarter our confirmed positive rate was 2.3% - the national average is .8% - so we know we’re reaching the right people. But we’re still dealing with providers here who say, ‘Oh no, it’s not in my back yard – even when we can prove it’s right next door to them.”
Gary’s viral load has been undetectable for the last year. “I’ve been lucky,” Gary says. “I’ve never really had any problems with side-effects from the drugs.” He’s working on his Master’s in Social Work.
When we asked Gary what he tells someone who is newly diagnosed he said: “Welcome to the family!”
“I had that situation last night with a young heterosexual female,” Gary said. “She was scared – very scared. I had to explain to her that it doesn’t have to be terminal. It’s a chronic disease now. Some people don’t even have to go on medications. For those who do, it can be as easy as taking a vitamin a day. She was afraid no one would want to touch her. Once we got past the ‘death sentence’ and the stigma, we worked hard on de-stressing.
There’s education of course, but we’ve got to be people first. The biggest thing is for them not to give up, not to throw their hands up. You can live with this thing.”
Gary is constantly taking training courses on HIV and AIDS and he’s active in a large number of local, statewide, and national advocacy and action groups. Gary remains single, independent and just bought a house.
“I’m totally open about who I am and what I do,” Gary says. “Eleven years after being told I had six months to live, I’m still here, I feel good – and I’m doing something!”
Copyright 2018, Positive Health Publications, Inc.
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