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Today : 03/12/2008  
AIDS stigma lingers after 25 years
Other website - 00:00' 21/06/2006 (GMT+7)
Tucsonan exemplifies disease's new face

It no longer means certain, gruesome death. We can now live long, productive, almost normal lives with it.

But after a quarter-century battling one of the greatest of all human plagues, AIDS remains a disease of failure and stigma, those who live with it say.

"This is a story of failure, of total failure in so many ways you can't end up anywhere but pessimistic about it," said Dr. Fritz Bredeek, an infectious-disease physician at Special Immunology Associates, the largest HIV/AIDS practice in Southern Arizona.

"There has been total failure to prevent it, total failure to test everyone, total failure to find a cure or a vaccine," he said. "Globally, there is huge misery because of it — a great, new human plague."

The numbers tell the terrible tale. Twenty-five million dead of AIDS worldwide, another 40 million living with it, and most unaware, ensuring its further rampant spread. Half a million dead in this country, a million living with it, and nearly a third don't know it — again meaning it will continue to spread and kill. Every year, 40,000 new cases surface in this country, and 15,000 Americans die of it.

It was 25 years ago this month that those first terrifying images — of emaciated, cadaverous, dying men, pocked with ugly lesions, ravaged by strange infections, flanked by baffled doctors — flashed around the world, scaring an entire planet.

The "gay plague," "the gay cancer" — those were the first labels we stuck on this medical monster of almost medieval cruelty that came out of nowhere.

"Nobody knew what it was," said Dr. Kevin Carmichael, chief physician at Special Immunology, part of the El Rio Community Health Center. He's devoted his 25-year career to treating the human immunodeficiency virus.

"It's clear there were people dying of AIDS before those first reports in 1981, but we just hadn't put it all together — not until there was a cluster of cases."

The first clusters in this country struck mostly among gay men living a fairly bacchanalian lifestyle that set the stage for viral chaos. Soon joined by intravenous-drug users, these first sufferers of acquired immune deficiency syndrome were marginalized people hit by the horrific double-whammy of fatal disease and severe social stigma that lingers even today.

"I went through denial, shame and had thoughts about not wanting to live," said Georgeannie Llamas, a Tucson mother of five and a former Army interpreter and medic, who found out in 1997 that she carried this virus.

Though HIV was well-understood and under some control by that time, Llamas found herself shunned by friends and members of her church. Numb with shock and shame, she withdrew, while her children heard their mother called a whore and a drug addict.

"I had to come to terms with the people who weeded me out of their life because I'm HIV-positive," said Llamas, who believes she was infected during a rape years ago and now volunteers with a local AIDS service agency. "But I've finally come to terms with it and accepted it, because I have to. This is my life."

Llamas is part of the new, increasingly female face of AIDS in this country; the disease now also afflicts many who are poor and members of minority groups. In Arizona, HIV infection rates among Hispanics have more than doubled in the past decade — from one of every seven cases around 1990 to one in three now.

"One group we are seeing much more is Hispanic women — not considered a high-risk group," Bredeek said. "These are women who have been married once or twice who never knew their husbands had sex outside of the marriage."

But perhaps the most famous face of AIDS in this country is that of the vibrant, healthy ex-NBA superstar Magic Johnson, now in his 15th year with the virus and showing no sign of it.

Now a spectacularly successful business mogul, Johnson symbolizes what many say is the only true success scored against this scourge — the development of effective antiviral drugs that changed HIV from a death sentence to a manageable, survivable chronic disease.

Testing positive in 1991 while still healthy, Johnson survived on the first drug capable of slowing HIV — the antiviral AZT, approved just a few years prior. But in 1996 came the medical revolution that got thousands up and out of their deathbeds — the triple-drug "cocktail" known as highly active anti-retroviral therapy, now the standard of HIV care in the developed world.

"Like everyone else, I figured it was two years and I'm out of here. I was scared to death," said Keith Collins, a Tucsonan who learned he had AIDS in 1986.

"I think I've been on every drug that's come out," said Collins, now 52, and feeling well except for ongoing fatigue. "I was one of the lucky ones. I have the life I never thought I'd have. But I had to adjust — to the idea of having a future."

Even so, battling HIV is no walk in the park. The drugs, a lifelong regimen, cause debilitating, sometimes intolerable, side effects, and often fail after several years as patients develop resistance to them.

But in testing right now — on Tucson patients and nationwide — are two entirely new classes of HIV drugs, expected on the market in about a year.

"These are for patients who have gone through all the drugs and failed everything else — there's nothing for them," Bredeek said. "We're seeing them respond superbly to the new drugs. This is giving us a lot of hope."

But that's pretty much where the HIV success story ends. Scientists are admitting now that there's almost no hope of finding a vaccine, due to the devilish complexity of this virus, and certainly no cure.

So, what's really upsetting doctors now is that nearly a third of all HIV-infected Americans are walking around unaware and untreated.

"Everybody should be tested for HIV, as a part of routine medical care — when you go to the ER, when you get an annual physical. We need to remove the barriers preventing that," said Carmichael, referring to the law in Arizona, and most states, that requires anyone tested for HIV to sign a special consent form.

Sounds eminently sensible. But the tragic, ongoing truth of AIDS is that routine, universal testing remains dangerous, due to the terrible stigma that still dogs this disease, say those who work with lives ravaged by it.

"The more that get tested, the better; no one disputes that," said Scott Blades, executive director of the Tucson Interfaith HIV/AIDS Network.

"But getting rid of special consent? No. You have to realize people still lose their housing, still lose their jobs, if their HIV status is disclosed. People are still afraid to tell their families, their friends, their employers, and rightly so. There's too much discrimination.

"We're not there yet."

Services and testing

l Southern Arizona AIDS Foundation: 628-7223 or www.saaf.org

l Tucson Interfaith HIV/AIDS Network: 299-6647 or www.tihan.org

l Pima County Health Department HIV counseling and testing: 624-8272 or www.pimahealth.org/disease.htm

National HIV Testing Day

l When: Tuesday, June 27, 8 a.m. to 8 p.m.

l Where: Southern Arizona AIDS Foundation, 375 S. Euclid Ave.

l Testing will be on a walk-in basis. All are welcome.

HIV/AIDS by the numbers United States:

l 500,000 known deaths

l 1 million currently infected

l 40,000 new cases each year

Arizona:

l 5,400 known deaths

l 10,196 currently infected

l 635 new cases in 2004

Pima County:

l Total deaths unknown

l 1,900 currently infected

l 113 new cases in 2004

Arizona AIDS mortality rates:

l 1981-1993: 56%

l 1994: 41%

l 1995: 35%

l 1996: 23% (when lifesaving drug therapy became available)

l 1997: 16%

l 1998: 18%

l 1999: 15%

l 2000: 15%

l 2001: 10.5%

l 2002: 9.5%

l 2003: 7.8%

l 2004: 5%


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