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Wednesday, Oct. 7, 2009

AIDS Walk Wisconsin, 20 Years On

The battle against HIV turns a new page

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Medical treatments for HIV and AIDS have advanced to the point where patients are now leading longer, healthier lives than ever before, with some patients living more than 25 years after being diagnosed. The flip side of that good news is that with AIDS out of the headlines, young, at-risk populations may not be as informed about the disease as they need to be.

Bill Keeton of the AIDS Resource Center of Wisconsin said that AIDS prevention campaigns re-tailor their messages for each new generation, but it’s been particularly challenging to find a message that resonates with today’s youth.

“We’re finding that there’s a new generation that hasn’t lived through the HIV epidemic the way previous generations did,” Keeton said. “They didn’t see their friends die from the disease. So when you have young people looking at someone like Magic Johnson, who has lived with HIV for a very long time, and combine that with the notion of invincibility that young people have, you get a complacency.”

That complacency could cause increased transmission of the disease. For instance, the rate of HIV infections in young gay men declined steadily through the ’90s, but since 2000 the rate has increased a shocking 143% for gay men under age 30. That could be because more young people now believe they are not susceptible to the disease, even though AIDS is still a real threat.

“More than 6,800 people in the state are living with HIV, and there are about 400 new infections every year,” Keeton said. “HIV is out there, and there’s still no cure.”

That message will be stressed repeatedly this weekend when AIDS Resource Center of Wisconsin (ARCW) hosts its 20th annual AIDS Walk Wisconsin. This year the walk recruited as its honorary chair Justin Vernon, a Wisconsin songwriter who, as Bon Iver, released one of last year’s most acclaimed albums. Keeton hopes Vernon’s involvement will help ARCW’s message reach a younger crowd.

Beyond Prevention and Medical Treatment

ARCW pushes prevention on all fronts, from teaching abstinence education at private schools, to doing outreach at gay bars, to running a needle-exchange program. That exchange program has been particularly effective in Milwaukee, helping reduce the infection rate among injection drug users by 67% since it began 14 years ago.

But prevention is only a part of where the money raised at the AIDS Walk goes. ARCW also provides some of the country’s most comprehensive care for men and women with HIV and AIDS, offering not only medical treatment and support groups, but also dental and mental health clinics, social services, housing services, a 27-occupancy living shelter and one of the city’s busiest food pantries.

“ARCW has always adapted and evolved with the AIDS epidemic,” Keeton said. “In the beginning, a lot of patients were dying, and dying quickly. So a lot of what we did was help people die with dignity and get their affairs in order. As the disease evolved and people began to live longer with it, we realized these people need health care and dental care. We started a food pantry because, in the beginning of the epidemic, a lot of people diagnosed were single adults, and they couldn’t access food pantries because those pantries were for people with families.”

The dental clinic was needed because HIV often manifests itself through the mouth, and because HIV medications often cause dry mouth, making it painful for patients to swallow their food and medications. Similarly, the mental health clinic was added because many HIV patients also suffer from substance abuse, depression, anxiety or post-traumatic stress, all ailments that can hinder medication adherence.

“HIV unfortunately continues to be a disease that impacts many folks who are low income,” Keeton said. “So when you start looking at the disease and who it’s impacting, you also see that they’re suffering from a whole host of other issues, including poverty, unemployment and homelessness. You can be investing all you want on their medical treatment, but it’s not going to be nearly as successful if you’re not helping patients take care of these other issues as well.”

Living With AIDS

Maurice Jenkins, 46, is one of ARCW’s longest-served patients, having used the center for nearly two decades. Like many HIV patients, Jenkins had no idea how to cope with the virus when he was diagnosed 20 years ago. He was in shock after having been infected by a Michigan dentist who was later convicted of deliberately spreading the virus through contaminated Novocain needles.

“Even after I took the HIV test three times and it still came up positive, I thought, ‘This couldn’t be,’” Jenkins recalled. “Twenty years ago, the virus was a death sentence, period, but that was all I knew about it. I attended a couple support groups, but I didn’t ask any questions. I didn’t really know anything about HIV, and I didn’t want to know.”

Adding to Jenkins’ plight was the stigma around the virus, which was once stereotyped as exclusive to homosexuals. Jenkins was gay, but had not come out to his family and friends, so he kept the disease secret for four years, refusing to seek treatment.

“I didn’t have any desire to live,” Jenkins said. “For those first four years, I was drugging and drinking. I figured I might as well go out with a bang. Then came the fifth year, and I was still around.”

That’s when Jenkins began to seek medical treatment, but even then he struggled to keep up with his medication.

“It was a lot of pills,” Jenkins recalled. “I was probably taking 35 pills a day, so three times a day I’m taking handfuls of pills. It got too tiring, and there were too many side effects. If I had family or friends over, I didn’t want them to see any type of medication bottles around me, because they might ask me, ‘What is this for?’ So I’d hide it in my bed stand or my closet. There was still that stigma attached to HIV.”

Jenkins credits ARCW for teaching him to live with the disease, and giving him the resources he needed to save his life.

“I get my medical care there,” he said. “I also use the legal department to help me with my living will and power of attorney. I used to see a therapist there. I use the library, and I use the food pantry.”

It was only in the last year that Jenkins found a medical regiment that he could strictly adhere to, and it’s working. Jenkins’ T-cell count is now the highest it’s been since his HIV developed into AIDS in 1998.

“It was a struggle, but now I’m in the best health I’ve been in for 20 years,” Jenkins said, and he’s optimistic he’ll be able to stay that way. “I tell my son that maybe by the time I’m 70, 75, I’ll be ready to check out, but not until then,” he said. “I want to see grandkids first.”

Jenkins said that even though AIDS patients are living longer, he’s shocked by how casually some young people now treat the disease.

“I can remember when AIDS came out and it was as simple as, ‘If you get AIDS, you die,’” he said. “So people were using condoms out of fear. But these days some people think that living with AIDS is as simple as taking daily pills for high-blood pressure. One person even told me, ‘I can take a pill for the rest of my life.’”

Jenkins, who two years ago watched his partner of seven years succumb to the disease despite the medical advances, gave that man an earful.

“I told him, ‘You do not want this virus,’” Jenkins said. “It’s not just the physical toll it takes, but also the social one, and the mental one. It’s an expensive, difficult disease to manage. Nobody should have to go through it when it can be prevented.”

For more information on AIDS Walk Wisconsin, visit aidswalkwis.org.

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