Pittsburgh man with AIDS 'slipped through cracks'


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When the first World AIDS Day took place a quarter of a century ago, the AIDS epidemic was in full roar. Ryan White was a household name. Gay men, women and minorities were dying every day, ravaging once vibrant LGBT neighborhoods in New York, San Francisco and other urban areas. Dentists were starting to wear latex gloves to protect themselves from infection. References to safe sex, Kaposi's sarcoma and HIV were all over the news.

On Sunday, World AIDS Day marks its 25th anniversary in a much quieter atmosphere, one full of cautious optimism, even talk of a battle nearly won, according to a new report by The One Campaign, a global anti-AIDS group founded by the rock singer Bono.

If more people are treated and infections reduced at current rates, "we will achieve the beginning of the end of AIDS by 2015," the report says.

To that, Geoffrey Joslin would say, "Really?"

In February, Mr. Joslin, 48, of Uptown was diagnosed with full-blown AIDS, after two years of chronic colds, pneumonia, fatigue, sweats, weight loss and a stroke, and then, after his mother noticed a strange growth behind his ear -- lesions, the telltale symptoms of Kaposi's Sarcoma.

Except that his symptoms told no tale -- at least not to any of the doctors Mr. Joslin saw at health care clinics, offices and hospitals throughout the region over two years. They were baffled, he says.

After his stroke in September 2011, doctors did blood tests and found possible signs of leukemia, but other tests came back negative.

A year later, when Mr. Joslin went to a walk-in clinic for his lesions -- the same kind that appeared on actor Tom Hanks in the role of a lawyer in the 1993 movie "Philadelphia" who was improperly fired by his law firm because he had AIDS -- the doctor shrugged and recommended he see a dermatologist. The dermatologist was dumbfounded, and told him to have a biopsy.

An oncologist, who he found through a social worker, arranged for a biopsy in December 2012, which found no evidence of cancer.

"But the pathologist had some concerns and did some other testing," he said, and he finally got his diagnosis in February.

At one point while he was hospitalized, "a doctor would parade in all of his residents to have a look at me, the mystery case," said Mr. Joslin, who is now being treated by experts in infectious diseases at UPMC's Falk Clinic, which put him on an aggressive course of drugs. Still, the disease has severely weakened his immune system and in October caused partial temporary blindness in one eye.

When Mr. Joslin, originally of Meadville, was younger and living in Michigan, he got tested for HIV every year after New Year's Day with a group of friends as an annual ritual. But when he moved to Pittsburgh five years ago to take a job in marketing research, Mr. Joslin lost touch with them and stopped getting tested.

"I was probably busy with a new life. I was healthy, and I thought, 'Why bother, I rarely got sick.' "

But when Mr. Joslin did become seriously ill, "I slipped through about six doctors' fingers," he said. "I made countless trips to doctors with chronic bronchitis, pneumonia, thrush. I never hid any of my symptoms. In retrospect you can go back and think of a lot of things I did wrong, but I also think that the symptoms that health professionals looked for in the 1980s and 1990s have basically disappeared."

Mr. Joslin's story may be unusual, but is he an outlier or does he signify a larger problem?

The number of new HIV cases has leveled off in Pennsylvania -- from an annual high of 2,998, according to the state Department of Health, to 1,461 today. Nationally, though, unprotected sex among gay men is on the rise, according to the Centers for Disease Control and Prevention.

There could be many reasons for this: many young men have never seen anyone with AIDS, and being tested positive for HIV is no longer a death sentence, thanks to the development of breakthrough drugs in 1998 that allow people to live long and healthy lives. These days, stories about AIDS rarely appear in the media, except when they're about Africa, where the disease continues to be a scourge.

So are today's generation of health care professionals less likely to recognize the signs of HIV or AIDS?

Not necessarily, said Anthony Silvestre, longtime head of the Pitt Men's Study, which has been following 3,000 men since 1984 who have HIV to measure the epidemiology, virology, immunology and pathology of the disease.

If anything, he noted, the CDC recently issued a directive calling on HIV testing as a part of a routine annual physical.

"Many physicians and staff in the ERs are taking this directive seriously and are indeed testing," Dr. Silvestre said, but "like anything else, there's going to be a lag."

Plus, "it's a matter of money. Do we put our resources to where there are reservoirs of the disease -- there's lots of HIV among runaway kids and sex workers on the streets. Do we focus on reaching out to them and getting them tested or on the general population?"

Alan Jones, a testing counselor at the Pittsburgh Aids Task Force, nonetheless senses a complacency on the part of health care professionals.

"I have people come in, especially women, and they'll say to me, 'I asked my gynecologist or family doctor if I should have the HIV test, and they didn't think I needed one.' "

It might be about cost, "but given that most people are not going to disclose their lifestyle to doctors, it seems to me that if a patient is even asking that question, it's interesting that they don't recommend it."

World AIDS Day will be marked Sunday in Pittsburgh with an interfaith service at East Liberty Presbyterian Church at 4 p.m., followed by a rally at noon Monday at Highmark headquarters at Fifth Avenue Place, Downtown, and an ecumenical service at Heinz Chapel at 7:30 p.m.

Mr. Joslin was originally on the planning committee for the anniversary, but now he's focused on getting his illness under control. It grieves him to see "how much awareness has declined in the younger generation, who see people who are HIV positive and think, it's no big deal."

Even so, the response by his doctors -- all well-meaning people, he said, who just didn't have a clue -- has prompted him to speak out. "I just want to get my story out there. I can't be the only one who has fallen through the cracks in the system."

Mackenzie Carpenter: mcarpenter@post-gazette.com, 412-263-1949 or on Twitter @MackenziePG.


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