In the very beginning, when nobody knew anything, everyone was afraid. It was 1986 and Kevin had just been diagnosed as HIV-positive. Many of his friends were dying from AIDS.
“I went to visit my friend Larry in a hospital, who had pneumocystis [a form of pneumonia],” Kevin recalled. “He was at the very end of the corridor and the rooms on either side of him and across the hall were all empty. When I went to visit him I had to put on a mask, a gown, gloves and booties. And then I went into the room and he was in an oxygen tent.”
Larry was dealing with increasing dementia and didn’t recognize Kevin, covered as he was in a protective hospital uniform.
“I couldn’t touch him,” Kevin added. “There are so many things that happen when somebody is at the end of their life . . . that was the scenario and I couldn’t touch him. And the reason there were empty rooms on either side of his room was because they isolated him.”
More than 25 years later, with much more known about the epidemic, the fear has subsided but the stigma still persists, Kevin said.
Dec. 1 marks the 24th annual World AIDS Day. Kevin is supported by the AIDS Support Group of Cape Cod, which serves 430 clients across the Cape and the Islands and roughly 20 clients on the Vineyard. Through the AIDS group, a doctor specializing in autoimmune diseases like AIDS and Hepatitis C visits the Island on a monthly basis.
Executive director for the group Joe Carleo said the organization’s mission has evolved into one of prevention as much as caring for patients. World AIDS Day has taken on a similar mission. By 2015, the world AIDS community hopes to get to the magic number of zero. Prevention is key to achieving that goal, he said.
“The theme of World AIDS Day is zero new infections, zero discrimination, zero aids-related deaths,” Mr. Carleo said. “It’s a very hopeful message.”
In a 2000 interview with the Gazette, Kevin talked candidly about living with HIV. He was 48 years old, at a crossroads and uncertain if he would be able to maintain a healthy lifestyle, both physically and emotionally, on the Island. At the time, Kevin chose not to use his real name. During an interview on Tuesday morning, he reflected on that choice and whether to give his name for this article.
“I thought about it and I want to stay with Kevin because when everything is said and done, stigma always wins,” he said. “It always wins.”
“Here’s the thing,” he continued. “Now we know what causes people to be infected and the information is out there. At the very beginning it was innocent ignorance, now it’s no longer innocent.”
Kevin originally moved to the Island from Oklahoma several years after his diagnosis. He volunteers whenever possible and finds comfort in his Island home. His view on life is infectious.
“What I’ve learned to do over the last 26 years is to not take it personally, because honestly, it has nothing to do with me,” he said with a smile. “If you get stuck on the little stuff, then you stay with the little stuff.”
Kevin took out a folder containing all of his HIV information — blood work, prescriptions, literature — and pointed to his CD4 count lab work, which counts his T-cells.
“Everybody who is HIV positive or who has AIDS goes by what their CD4 count is,” he said. “Doctors don’t like us to use that, but we still do. It can get technical and hard to grasp. The CD4 count always tells me where my immune system is.”
The blood work is only documented back to 1999. Kevin was asymptomatic for 13 years but then his love for seafood became problematic, he became reactive to being in the sun, small cuts wouldn’t heal and his immune system began to deteriorate.
“I knew something was wrong,” he said, and he began taking the necessary drugs.
Since then, Kevin’s CD4 count has been stable and his symptoms have subsided. These days he takes Atripila, a medicine he’s been on since 2004. It’s recently been linked to nerve damage and early dementia.
But the news hasn’t phased Kevin.
“I’ve never been worried about anything,” he said.
“There’s a joke that I like,” he continued. “Sometimes I wonder why I like it, but here it is. The doctor says to the patient, I have good news and bad news. And the patient says, well for goodness sake give me the good news. The doctor says, well you have 24 hours to live. The patient says, that’s the good news? What’s the bad news? The doctor says, I forgot to call you yesterday.”
“And the reason I like that is because we don’t know, nobody knows,” Kevin said. “I live for the moment.”
Kevin uses the state health insurance plan MassHealth. Without it, the medicine he takes would not be available.
“I’m extremely thankful because I’m here,” he said. “I do as many things as I’m able to do in order to give back.”
He paused, remembering friends who died.
“My friends didn’t have this opportunity, they didn’t have it,” he said. “I’m very grateful. I can’t tell everybody this because they might not understand, so I do what I can.”
He continued: “I volunteer wherever I can. I go pick up mail for someone who’s shut in. If someone has breast cancer I offer to do their laundry. I help with the food pantry, I have for years. I have a favorite charity I give to anonymously.”
And he is full of hope for the future.
“Back in the day there was Patient Number One who infected everyone, now there’s a Patient Number One with whom the AIDS virus has been eradicated,” he said. “Along with that there will be a patient number two, and three and four and five.”
In the meantime, “we have to listen to the hopeless to find out how we can give back and that’s how I do it,” Kevin said. “I give back to those who don’t see the silver lining and should.”