Has Our Zeal To Give People Hope Also Created Apathy?
October 8, 2006
By SUSAN CAMPBELL, Courant Staff Writer
When Freida Hunt was diagnosed as HIV-positive in the early `90s, she was devastated. She knew the human immunodeficiency virus causes AIDS, and she knew the path to the disease would not be pretty. Correctly, she foresaw long and multiple hospitalizations, significant weight loss and a life tied to pills.
And she knew she would be a pariah in some circles.
"They say, `Oh, she's got the chicken,'" said Hunt, formerly of Stamford. And then friends and relatives of people with HIV or AIDS typically take two giant steps back, although her family, she says, has been supportive. If infected family members are invited to gatherings, they are handed paper plates and plastic utensils, she says.
But she tells her story with hope. She's back to 225 pounds, up from her low of 89 pounds. She's enrolled in Trinity College's Gateway to the Humanities program for economically and educationally disadvantaged Hartford residents. At Peter's Retreat, the Hartford AIDS residence where she now lives, she says that HIV saved her life. It made her get off drugs, stay out of jail and start taking herself seriously.
That is one side of the way we perceive AIDS - triumph over a dread disease, a life rebuilt from ashes.
There is another side, though. Too often, if someone contracts the disease, the perception is that infection involves a little fatigue, maybe a pill a day, and not much more.
The truth is that the disease is deadly and awful and should be taken seriously, and attitudes have to change. In September, officials at the federal Centers for Disease Control and Prevention suggested that HIV testing become routine for 13- to 64-year-olds to help remove the stigma associated with the disease - and to prevent its spread.
If that seemed like overkill (what's so bad about a pill a day and a little fatigue and weight loss?), people in the prevention field say it's been too long in coming.
In Connecticut, 7,467 people have died of AIDS, according to the Kaiser Family Foundation. Nationally, the CDC says 529,113 people with AIDS have died through 2004.
"It went from hysteria to total complacency in 60 seconds, and we sort of jumped over the reality part of it, which is that people continue to get the disease, they continue to put themselves at risk for the disease, and their health fails, and people are dying," said John Merz, Connecticut AIDS Resource Coalition executive director. "There is no magic pill, and anyone who thinks it only happens in Africa is deluding themselves."
The Connecticut Department of Public Health estimates there are 20,000 cases of HIV in the state. Going by national estimates, 25 percent to 30 percent of those people are unaware of their disease, said Shawn M. Lang, CARC director of public policy. And the state ranks first, second and third, respectively, in AIDS cases among injecting drug users, women and Latinos in the country.
Activists worry that the disease is too easily dismissed by the rest of the population because of misperceptions about the virus' effects. In fact, last year, AIDS Healthcare Foundation launched an ad campaign - "HIV - Not Fabulous" - in reaction to what the foundation said was drug companies' minimizing the disease's seriousness by featuring healthy looking subjects in their advertisements.
The new ads include information on some of the physical symptoms associated with HIV and AIDS, including diarrhea, wasting syndrome and irregular body fat distribution known as lipodystrophy.
With a suppressed immune system, people with HIV/AIDS are susceptible to all kinds of other diseases. Barbara Good, who grew up in Hartford and now lives at Peter's Retreat, takes 22 pills every day.
"You have to be careful, very careful," she said.
"If you have any questions about the test, you should be tested," said Kevin Patraw, of Meriden, who is HIV-positive and living at Peter's Retreat as well. "You don't want to be spreading it to other people."
Hunt is adamant that she is living with HIV: "I am 40, and I don't have anything to show for it," she said. "This isn't just about taking a pill. It's about willing to live life on its own terms."
"We sort of created this ourselves," said Merz. "What we wanted to do is give people with AIDS a message of hope. It is still important to say to people, `You're living with HIV; you are not dying from it.' That's not the same message we want to give people who are not infected. We want to tell them, `It's no picnic.' The uninfected have seized upon the message of hope and claimed it for themselves."
"People can die of the side effects of their medication," said William Petrovsky, manager of outreach and education at AIDS Project Hartford, which is sponsoring an AIDS Walk on Saturday . "It's a double-edged sword, especially for people like me who've been on medication for a long time. The toxicity of these medications is great. Our livers get affected, our kidneys, our digestive systems, and they can cause heart failure."
Petrovsky was diagnosed in 1991, around the same time as basketball great Earvin "Magic" Johnson. And a robust-looking and physically active Johnson is part of the challenge of a mixed, complex message, said Petrovsky.
In fact, the public's cavalier attitude about the spread of HIV was chronicled in a disturbing 2003 documentary called "The Gift," which explores what filmmaker Louise Hogarth says is a subculture among people who either want to be infected (known as bug chasers) or people who want to infect (gift-givers). Being HIV positive, according to subjects interviewed by Hogarth, is akin to belonging to a special, desirable group.
And once infected, the disease removes the uncertainty of future sexual relations. Hogarth has said in other interviews that the phenomenon reflects how badly the public health messages have failed.
Whether bug chasers exist is heavily debated among researchers. For the rest of the culture, ignorance and complacency are big hurdles that public policy makers must overcome, Merz said.
"Most messages are complex," said Merz. "They take more than a 30-second spot to fully inform a person of the whole picture. People are seizing upon the little picture. People who have to take the pills should continue their lives, but folks who are sitting around not having to get this disease? This message is not for you."
Separating reality from hoped-for fiction presents a challenge to people in the field of AIDS prevention.
"It's been a surprise to me to hear suburban young people talking about AIDS," said Louise Kalemkerian, director of Bread & Roses HIV/AIDS programs at St. Luke's LifeWorks in Stamford. "They say they don't need to protect themselves, that if they get the disease, they can take a pill. That's really scary."
Said Kalemkerian, who is also an Episcopalian priest, "It hasn't been cured. And it is still a deadly disease because there is no cure. And even living with it requires vigilance and a lot of attention to one's health."
And effectively implementing the government's proposals for more testing, said Lang, will take more money for pre- and post-test counseling.
"It's great to identify people with HIV earlier on in their disease in terms of treatment success," said Lang. "However, without putting more money into treatment and prevention as part of these new guidelines, we are in for a big problem. Right now, programs can't meet the demand, health clinics are overwhelmed and there have been no real increases in state or federal dollars for these programs."
Reprinted with permission of the Hartford Courant.
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