AIDS at 30: despite medical advances and advocacy, living with AIDS remains a struggle

Nov 30, 2012 · Features · By Elizabeth Bate

Alcina Wong

Looking at Ryan Nagy, you couldn’t tell. He goes to class, he volunteers, he is an average student at Conestoga College. Nagy, 32, is studying tech foundations with an aim towards getting an architecture degree. If you pay attention closely, maybe you’ll notice Nagy doesn’t get sick as often as everyone else, seemingly immune to the colds that sweep the halls every year. But that’s the thing about HIV, it infects indiscriminately and you can never tell who’s positive. That’s a lesson Nagy is all to familiar with.

Nagy contracted the illness in about 2007 when a boyfriend lied about his status. “I thought by asking my partner I was doing my part and I would be safe. I thought, because it was law, he would have to tell me,” he said.

A heavy drug user at the time of his infection, Nagy received his first positive diagnosis from a rapid test in 2008. Unable to complete blood draw testing because nurses couldn’t find a healthy enough vein, Nagy didn’t get full confirmation until an arrest in 2009.

“HIV is hard,” he confessed. “It was hard when I first found out. It was very hard. The mental tape in my head was ‘I’m going to die, I’m going to die. My life was over.’”

HIV 101

The mechanics of HIV can be complex, but put simply, the virus replicates in a person’s system, causing a decrease in CD4 count. CD4 is the part of the immune system that helps to ward off infection. At the time of Nagy’s arrest, his viral load was high, measured at over 1.6 million copies of the virus per 15ml of blood, and his CD4 count was low, just above 200. Any CD4 count below 200 is considered to be AIDS, while anything above is HIV. Now Nagy’s viral load is undetectable at less than 40 per milliliter with a CD4 count of over 600. Compare that to a healthy person’s CD4 count of about 500, and one can understand why Nagy may seem impervious to flu season.

“The medications do work,” he explained.

Nagy has never known HIV without the drugs as they are today, but this kind of treatment hasn’t been around that long.

“HIV has been around for 30 years, but the good treatment has only been around for 10 or 15 years,” Nagy said. “I was in the drug scene, and everybody kept saying ‘It’s no big deal, it’s no big deal, you take a pill, and you can live a healthy life.’ I’m going to continue taking [the medication] and hope to lead a healthy life.”

Nagy’s so-called cocktail is actually only one pill, called Atripla. It’s three medications in one pill. In order for the pill to maintain its effectiveness, Nagy has to take it at the same time every day and maintain a healthy lifestyle, full of nutritious food and exercise, otherwise he could develop a resistance to the drug. Resistance can be a problem among those with HIV who still participate in unhealthy activities. Those who have developed a resistance to certain drugs can even pass on their resistance to those that don’t have it through sexual intercourse.

“A lot of people on drugs and drinking miss their doses or are unhealthy,” he revealed. “I do worry about resistance, but I don’t lose sleep over it. I think it’s years and years away.”

Now recovered from the drug and alcohol abuse, Nagy is working hard to stay healthy, but staying positive can be the toughest battle.

What about support?

“HIV doesn’t define me, at least I don’t let it,” said Nagy, but it can be hard, a word that doesn’t seem to adequately define the experience.

“The virus can be controlled. But the emotions, the stigma, the isolation… There’s people with 30 years of having it, and they’ve been alone for 30 years,” he said. “I don’t want to be on disability, I don’t want to just sit at home I want to be productive and have a normal life.”

Nagy says the only place where he can truly find support and comfort in this area is ACCKWA, the AIDS Committee of Cambridge, Kitchener, Waterloo and Area. The only support group for the area, the organization serves more than 100 people every month, providing financial, medical, and emotional support to those with HIV and their families. With just 11 on staff, ACCKWA is always looking for more help. Nagy says that’s why he continues to volunteer.

“Not all of us just want to take, take, take. By getting us talking and out volunteering it helps with confidence and self-esteem.”

Raised in a homophobic environment, feeling isolated and alone, Nagy initially turned to drugs to deal with the feelings of self-loathing that accompanied his homosexuality. Now, with the help of ACKWA, he feels more secure about himself. More than just a place to get counselling or financial support,  the organization does everything from help with groceries and medications to handing out bus tickets. Nagy sometimes goes there just for a hug.

“I can’t just go to my family, because they’re uncomfortable with me being gay,” he confided. “[ACCKWA is] just amazing.”

When asked if he would consider moving to Toronto, or another larger area that offers more support services, Nagy says he really doesn’t think about it.

“I love being here. My family’s here, so I really love being here,” he responded.

Even with all the support ACCKWA offers, a positive HIV diagnosis can mean a life of loneliness and fear. Of the more than 100 clients ACCKWA serves, only six or seven are willing to speak to the community about the disease because of the stigma that still surrounds it.

Nagy hasn’t tried to have a relationship since being diagnosed. “I don’t try to date or anything because it’s hard. I know that boyfriend, if he’d told me the truth, I wouldn’t have slept with him,” he says of his ex-partner.

Nagy says the medication helps with the disease, but it can’t help with the rejection. “The moment I disclose is the moment I get rejected.”

HIV at 30

People are still shocked when Nagy tells them about his illness. Some have thought they can catch the disease by sharing the same sink or toilet. Nagy doesn’t mind answering open, honest questions and likes to help dispel the myths that surround HIV, but he is upset by the bigotry and hate that still exists surrounding the disease, even after all this time.

When Nagy talks at high schools, he tries to keep the information current and interesting.

“Talking about condoms, talking about HIV is getting outdated, because they’re like ‘We’ve heard this already,’” he said. Instead Nagy talks about his experience. “I thought by asking that guy I was doing my part. It’s so cliché because people always say, ‘Oh I thought it would never happen to me’ because everybody thinks that. Nobody wants HIV.”

Nagy knows that it’s hard for those without HIV to comprehend how having the disease can change your life.

“It’s not normal, and it never will be. That’s hard for some people to wrap their heads around. They may be able to relate, but they’ll never understand.” Leading up to the 30th anniversary of World AIDS Day on Dec. 1, Nagy hopes everyone will become more educated about the disease and their own status.

“Always wear protection, get tested, spread the message.”

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