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Living with HIV
People testing positive strive to stay positive
Wednesday, November 26, 2008
Started an AIDS ministry

Branden Dudek came back to Pittsburgh to die.

Mr. Dudek, 27, and his partner, 30-year-old Aaryn Harrison, moved to the city from San Francisco after both were diagnosed with HIV. Mr. Dudek has AIDS as well.

The Lawrenceville couple survives on a regimen of antiretroviral drugs and constant doctor's care. Despite continuing health problems and social challenges, they carry on.

"I came here to die, but I'm alive," Mr. Dudek said.

As World AIDS Day approaches on Dec. 1, efforts pick up to raise awareness of the debilitating and still often fatal disease. In southwestern Pennsylvania more than 1,200 people are estimated to be living with HIV, the virus that causes AIDS. People who have HIV can now live longer due to medications, but the numbers are going up as well, because more people become infected with HIV than die from the disease each year.

Many people may not know that the life-saving treatments can come with significant side effects. On top of sometimes-fragile physical health, HIV-positive people also say social stigma makes life difficult.

To find out just what living with HIV is like for people in Pittsburgh, we talked to people, from all walks of life, who shared their stories.

Raising awareness

Mr. Dudek and Mr. Harrison have had their lives radically changed by HIV. Neither can be fully employed, but they work as AIDS activists, striving to find peers who are also living with HIV and build a strong social support network -- as they saw in San Francisco.

"It's a different culture there," Mr. Dudek said, "We moved here ... I thought there were no people here with AIDS. Then we started meeting people, finding they had AIDS."

Both men credit their survival to the help available at the Positive Health Clinic at Allegheny General Hospital, North Side. Mr. Dudek, who had cancer brought on by the virus, has had chemotherapy and pleurodesis. Mr. Harrison said his medical care includes doctor's visits, blood tests, and $25,000 in medications. Health challenges include chronic fatigue, depression, infections and diarrhea.

Mr. Dudek said he hopes more people speak up about their HIV status:

"There are many more HIV-positive people in Pittsburgh than anyone realizes. There is no reason to be so closeted and hidden."

Mr. Harrison urges people who have HIV to take advantage of support services that exist in the city. He, too, tells people to be open about their health status: "You'd be surprised at who will support you."

He added, "The community needs to open their minds and realize there are people living with HIV. They should offer support and not gossip ..."

He said he would tell people "not to be afraid to have relationships with the positive. Be smart, use protection, educate yourself."

20-year survivor

Clifford Maxwell, 58, of Wilkinsburg, is a longtime HIV patient and admits that though he has tested positive since 1988, he no longer takes any medications for the virus. He said he had been forced to take the early AZT drug therapy, but he had so many "devastating side effects," including a swollen tongue, he decided not to continue.

It was during his eight years in and out of prison on drug charges that he was coerced into taking medications. But now, as an advocate, he said he doesn't discourage others.

"It's a personal disease; health issues must be addressed," he said, "For some reason, I'm a non-progresser. It's mostly unusual. I've never been in the hospital." He also has hepatitis C, a viral infection that attacks the liver. It's not usually spread through sexual contact, but through shared needles and blood transfusions.

He said he is concerned about the lack of programs in the county to educate people about HIV and AIDS, particularly jail inmates. With a 33-year history of drug addiction, now clean for five years, he mentors former inmates re-entering the community and is a volunteer for the Southwestern Pennsylvania AIDS Planning Coalition.

Employed as manager of a Clairton clothing boutique, Mr. Maxwell said he sees people are still afraid of HIV and AIDS -- and that's hindering progress.

"Stigma generates fear. It goes back to the '80s. the whole country was afraid; doctors were afraid," he said. When he told people he had HIV, he saw a change in their faces.

"Twenty years later, it's the same thing," he said. "It makes me stumble. Imagine what it's like for a newly diagnosed person, trying to come to grips with having HIV."

He tells them, "My life is not dictated by my disease or any one aspect of who I am."

An AIDS ministry

New infections are preventable. But despite efforts of education and prevention throughout the region, newly diagnosed cases of HIV are on the increase among some groups, particularly young black men.

Focusing his ministry in the Pittsburgh community, the Rev. Terry Fluker said World AIDS Day reminds people that "HIV has not gone away and that there are many things still to be done."

Mr. Fluker, 48, of Homewood, said he built an AIDS ministry for people living with HIV as part of his Love Ministry Outreach Victors. He's had HIV since the early '90s, but now lives a celibate, drug-free life. He has two sons.

"HIV has been a blessing," he said. "My story is a testimony and has turned to an HIV/AIDS ministry.

"It's important that the church take a stand to raise awareness and teach prevention. ... and for Pittsburgh AIDS service organizations to design programs geared toward black gay men."

He said he tells people who are at risk of getting HIV how important it is for them to change their behavior. His advice to them: Limit your partners, get tested and get into treatment if you are HIV positive.

For teenagers at risk, he recommends ABC: Abstinence, Be faithful and Condoms prevent.

A woman's story

Sheila Taylor, 45, of the North Side, works as an advocate for HIV/AIDS at the East Liberty Family Health Care Center. She was diagnosed with HIV 10 years ago, with a son and daughter at home. She had her youngest daughter seven years ago.

"I don't let someone's opinion of me affect me. I pretty much like who I am. ... It didn't dawn on me not to tell anyone. I told my mother, my sister, my best friend and my daughter." As a vivacious black woman, "I get those looks anyway," she said. She's determined to be open about being HIV-positive: "I can sense [the stigma], but I don't care. I have enough friends ... I tell you at the beginning."

She says her 7-year-old, who tests negative for HIV, plays with children who are growing up with the virus and feels no special concern. In fact, Ms. Taylor sees a greater good in her experience:

"God didn't let this happen to us, for us; it's for other people ... To tell you the truth, I don't even regret I have the virus. I have met so many other wonderful people, and we've done so many wonderful things."

As with Mr. Dudek and Mr. Harrison, Ms. Taylor is in a support group. "We talk about living with AIDS," she said. "We start off with 'How did your day go? How are your meds working?' "

Mr. Harrison said when they organized their group, it was in a social setting, with a "staying positive" theme. He pointed out that every group can have its own character.

Mr. Fluker said the stigma comes from a lifestyle associated with AIDS. "We are trying to address that. We are living healthy with HIV and AIDS. We are healthy, beautiful people."

Educating people about the facts of HIV is key to dispelling the stigma and the fear.

Ms. Taylor pointed out a real cause for fear is that people with HIV are much more susceptible to getting sick from others -- because of a compromised immune system -- than anyone is likely to get germs from them.

"I get sick," she said. "I can't hang out at hospitals, I can catch stuff. I can't give it to you. I have to protect myself."

She said young black men need to learn how to take care of their own health, as well. "You're young. You think, 'It's not going to happen to me.' " Pointing to herself, she said, "This face, here is what HIV looks like."

The stigma doesn't affect her personal life. Her boyfriend is HIV-negative, but tells others that he's not concerned about catching HIV: "That's her problem," she said he tells others.

Agreeing, Mr. Harrison said, "They're the ones with the problem. I'm fine with it. Are you OK with it?"

It took another woman 11 years to tell her mother. She is one of the people isolated with their secret.

She's married, 40 years old, but because of the virus, has no children. She leads an otherwise conventional life in a rural township in Butler County. Her story includes a day 12 years ago when she found her soon-to-be husband supported her after she tested positive for both types of HIV. At first, with a swollen gland for a year, she was told she had cancer. Then, after learning she had HIV-1 and HIV-2 (which progress at different rates), she said, "They told me no one has both. There are no studies done on both. They don't know and they don't care."

She has undergone several medication regimens, but despite living a full life with steady employment, said her biggest challenge remains health care. Apathy and ignorance are her worst enemies. She's seen it at work and in her church. Her priest balked at giving her the Communion wafer directly on her tongue, after she had confided in him. That is not a way HIV is transmitted.

Anyone can be an HIV carrier. Yet, health care professionals often don't use gloves when handling her blood work until she tells them they should.

She lamented, too, the lack of information on how women with HIV can safely have children. When she tried to conceive a baby through artificial insemination, she said she was told at the clinic: "What gives you a right to have a baby?"

She urges others who may be at risk for HIV: "Get tested."

To reach the Staying Positive support group mentioned by Aaryn Harrison and Branden Dudek, write to stayingpositivepgh@gmail.com.>.

Jill Daly can be reached at jdaly@post-gazette.com or 412-263-1596.
First published on November 26, 2008 at 12:00 am