The disease has receded from the spotlight, but the HIV infection continues to spread -- and invade the lives of Philadelphians.
“Taking care of yourself and living with HIV is a full-time job,” says Burns from ActionAIDS. “It’s still not an easy disease to have.”
Physicians agree that while newer antiretrovirals are less toxic than those developed at the beginning of what’s known as the HAART (Highly Active Antiretroviral Therapy) era, managing the virus remains a struggle.
“Better drugs are coming along, and now we have as easy as one regimen, three drugs in one tablet, and we’ll have more of those single-tablet regimens coming out,” says Ondercin. “But there are still side effects.”
Adds Powers, “Sometimes the meds’ side effects are as bad as the disease itself.”
Johns’ doctor says physicians can now mix and match 25 FDA-approved drugs to offer even patients harboring resistant virus virtually countless options, although he cautions that AIDS has become “a manageable disease that requires a lot of management.”
That’s something Johns can attest to.
“I would never choose this,” he says. “I have cancer. I take chemo. I have to take pills every day. A lot of days I feel like shit. I didn’t want HIV; I definitely wasn’t down. Thank God I’m tough. But it isn’t easy.”
Nor is it always smooth sailing for former ActionAIDS board member Dawna Edwards whose bright red-hued ’do gives her a sassy look. She’s been living with HIV for two decades. The 42-year-old North Philly native, now living in Germantown, learned she had the virus in perhaps the most agonizing way—by being told she’d passed it to her baby. Edwards’ son Joshua became ill two months after his 1989 birth, so she took him to St. Christopher’s Hospital for Children, then at Fifth and Lehigh.
“He wasn’t gaining weight, and he had a huge stomach but you could still see his ribs,” Edwards recalls while sitting in an ActionAIDS conference room. At St. Christopher’s, doctors conducted a battery of tests on Joshua before one of them approached Edwards and harrumphed. “Well, your son has AIDS and you probably have it too,’” and walked away.
“He didn’t have the greatest bedside manner,” she remembers wryly. Edwards, who also has a 22-year-old HIV-negative daughter named Amber, is certain she got HIV from Joshua’s father, a man she hasn’t seen since Joshua was 2. She’s also certain the man knew he had HIV before passing it to her.
“He and his mother used to tell me he had a blood condition, that’s why he took so much medication,” she says. “I felt hurt, betrayed, I wanted to fight, I wanted to hurt him.” Joshua died of AIDS five years ago. He was 15.
Edwards’ personal HIV trip has been a rollercoaster ride. In the early years she tired of having to take handfuls of pills at various times of day to the point where she stopped altogether. Today she gives herself twice-daily thigh injections but only has to take two pills. Although she suffers from unpredictable face and body rashes that her doctor treats with a steroid, she carries 150 pounds on her 5 foot 9 frame and says she has as much energy as she did before getting the virus.
She uses it to volunteer at Siloam, a ministry at 12th and Spring Garden streets, where she offers spiritual support to HIV-positive people and encourages young people to use condoms.
“I hand them out all over the place,” she says. “I run around a lot.”
Edwards says that she sometimes hears things that startle her.
“Years ago you had the horrible pictures of people with open sores and wasting away and everything,” she says. “But now you might see someone who has HIV and weighs 250 pounds and does everything everybody else does. So you hear people talking about it like it’s not really serious anymore.”
Edwards says she often hears young people, particularly in African-American neighborhoods wax nonchalant. “I constantly hear them say, ‘If I get it, it ain’t no thing,’” she says. “They say, ‘If I get it I’ll just go to the doctor and get a pill. I’ll be fine.’”
Although she’s never been stricken with any of AIDS’ hallmark opportunistic infections (OIs), Edwards got a scary reminder of the disease’s seriousness two years ago when she suddenly took ill, her weight plummeting to 105 and her T-cell count dropping to a mere 20 (uninfected adults typically maintain between 800 and 1,200 T-cells, the critical white blood cells HIV kills, per cubic milliliter of blood).
The African-American woman in the photo looks about 60, maybe 65. Her graying hair in a tidy bun, she wears a neat blue and white silk dress with a bow at the neckline. She tilts her head and gives a melancholy half-smile for the camera. Above her head are the words "I Never Asked. I Wish I Did." Inside the brochure this sweet-looking lady tells her story. She'd been widowed. She began dating a longtime friend. They never discussed sexual history, and because of her age, birth control wasn't an issue. Now she has HIV. It seems strange, even freakish, but it's all too common. HIV/AIDS is the No. 1 killer of black American women between 25 and 34. But the fastest growing segment of HIV incidence is among black women in their 50s and 60s. Grandma has AIDS. Women get together to discuss many different things. We talk about family, we talk about politics, we gossip endlessly. But when it comes to talking about HIV/AIDS and the simple things we can do to prevent it, our mouths are shut. Philadelphia-specific HIV statistics are grave. Averages here are higher than the rest of the nation, especially among women. Philadelphia's response is appropriately targeted, with some of the...
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PW's Summer Guide 2014