Unsettling re-emergence of 'gay cancer'

[Jody]

Unsettling re-emergence of 'gay cancer'
Sabin Russell, Chronicle Medical Writer
Friday, October 12, 2007

San Francisco doctors have reported a cluster among gay men of unusual cases of Kaposi's sarcoma, the cancer-like skin disease whose disfiguring purple lesions were a terrifying signature of a bygone era of the AIDS epidemic.
All 15 patients under treatment for the condition are long-term survivors of HIV whose infections are firmly under control with antiviral drugs. So far, none of them appears to be in any danger.
The new cases of Kaposi's sarcoma have not been aggressive, invasive or lethal - the way the disease behaved in patients with uncontrolled HIV during the 1980s.
Still, the lesions are unsightly, difficult to treat and raise uncomfortable questions about what weaknesses might lurk in the immune systems of thousands of aging survivors of the epidemic.
The re-emergence of this classic AIDS illness in these outwardly healthy patients is an unsettling echo from the past and a warning that this 26-year-old plague still has the capacity to surprise.
"This could either be the canary in the coal mine, or it could just be a collection of rare events that will continue to occur when people are given what appears to be effective treatment," said Dr. Jeffrey Martin, a San Francisco General Hospital epidemiologist and Kaposi's sarcoma expert.
Kaposi's sarcoma was one of the first visible manifestations of the HIV epidemic. At the time, it was popularly known as "gay cancer." About 80 percent of early AIDS patients suffered from it, and when it migrated to the lungs, lymph nodes and throat, many died.
With the widespread use of combinations of antiviral drugs beginning in 1995, however, the lesions disappeared, and AIDS-related Kaposi's sarcoma has seldom been seen in the United States except among impoverished patients whose HIV is untreated.
Today, the disease is still rampant in Africa, where only one in four people who need AIDS drugs to survive has access to them. "KS is the most common malignancy among adults in sub-Saharan Africa," said Martin, who travels to the region frequently.
So it was highly unusual, and a little spooky, when the KS cases among long-term HIV survivors in San Francisco began to stack up in the past three years.
"I'm of an age to remember when, if a purple lesion showed up on your face, it meant you were going to die," said Matt, a 42-year-old San Francisco man who has controlled his HIV infection since 1995.
Matt, who asked that his last name not be used, said he was startled three years ago when a pea-sized purple spot appeared on his waist. Before long, he had a dozen lesions, including two on his face. "It was extremely scary," he said. "I got something out of the blue and totally unexpected."
The nodules on his skin were not painful or itchy, but they were embarrassing. Mostly, they generated fear.
Matt acknowledged that Kaposi's sarcoma bears a stigma as a visible mark of AIDS that is still difficult to overcome. Treatments have caused most of the lesions to fade. Some were removed like warts by freezing with liquid nitrogen; others responded to direct injections of chemotherapy drugs.
Always conscious about his appearance, Matt said he dreaded the prospect of Kaposi's sarcoma when he was first diagnosed with HIV, and was relieved in those early years that he never came down with it. He was stunned to see the lesions appear so much later. "It was jarring," he said. "I never thought I would have to face this."
Although Matt's anxiety eased as time went by, and his KS remained stable, he could not help reliving some of the darker days of the AIDS epidemic. "I've had the experience of people saying, 'What's that on your face?' " he said. "It is like something out of the movie, 'Philadelphia.' I'd thought those days were over."
Most of the new Kaposi's sarcoma patients are in their 40s and 50s and have been living with HIV for nearly two decades. Their lives were spared by the introduction of antiviral drug combinations in the mid-1990s. Their HIV is suppressed below the level of detection in standard tests, and they have plenty of infection-fighting white blood cells.
"The normal treatment for KS among HIV patients is to treat the virus and boost the immune system. But in these patients, their immune system is already boosted," said Dr. Toby Maurer, chief of dermatology at San Francisco General Hospital.
Maurer and colleagues revealed a cluster of nine cases of Kaposi's sarcoma in a brief letter published in the Sept. 27 issue of the New England Journal of Medicine. The patients described in the report were diagnosed from November 2004 through January 2006.
The total number of cases has since grown to 15, with several more suspected but not confirmed, Maurer said. Since she published her letter in the prestigious medical journal, more reports have come her way. "Every day, I am getting stories from around the world," she said.
These new cases are more of a nuisance than a threat to life. They resemble the Kaposi's sarcoma cases first described in medical textbooks in the 19th century. The patches of purple skin - caused by a proliferation of blood vessel growth - are painless and have not spread to internal organs. It's a kind of Kaposi's sarcoma that is relatively common in countries surrounding the Mediterranean, with one exception: Classic KS is a disease of old men, but the average age of Maurer's patients is 51.
Columbia University researchers proved in 1994 that Kaposi's sarcoma is caused by a herpes virus, dubbed HHV-8. Both the rampant AIDS-related Kaposi's sarcoma, and the more benign Mediterranean variety, are caused by the same virus. In the case of uncontrolled HIV infection, the Kaposi's sarcoma virus takes off because the patient's immune system is destroyed. In the case of the Mediterranean men, their immune system is simply old.
"This is an infection of 70-year-old guys, and I'm seeing it at 50. What does it mean?" Maurer asked.
"The big question," she added, is that if the HHV-8 virus can't be controlled, does that mean other things won't be controlled in these patients, as their immune system ages? That's why we are following this very closely."
Dr. Marcus Conant was a dermatologist catering to a gay clientele in the early 1980s when the first cases of deadly Kaposi's sarcoma began to appear. Since then, he built one of the largest private AIDS practices in the nation. After the arrival of effective AIDS drugs, KS cases plummeted, but he has seen about a dozen of these mild cases among patients who have their HIV under control. None has developed the fulminant Kaposi's sarcoma that killed so many during the 1980s and early 1990s.
"I believe some other virus, or infection, is stimulating HHV-8 to replicate," he said.
An eyewitness to the epidemic since its earliest days, Conant is not alarmed by the new Kaposi's sarcoma cases. "This is nothing like what we saw 25 years ago," he said.
Kaposi's sarcoma
Frequently asked questions about Kaposi's sarcoma
What is Kaposi's sarcoma?
It is a cancer-like skin disease that is triggered by a virus, which causes blood vessels to grow out of control. Patients develop purple spots on their skin.
Is it dangerous?
It can be. Until AIDS drugs became effective in the mid-1990s, Kaposi's sarcoma was a major killer of people infected with HIV. It is still the leading malignancy in sub-Saharan Africa, where most people with AIDS have no access to drugs. But historically, KS was a skin tumor found mostly in old men in the Mediterranean region. They didn't die of it.
Why did the AIDS drugs help?
The drugs lower the level of HIV in the bloodstream and boost the number of infection-fighting white blood cells that naturally control HHV-8, the virus that causes Kaposi's sarcoma.
What's different about these new KS cases?
They are occurring in gay men who have been controlling their HIV with antiviral drugs for years. It also appears to be a milder form of Kaposi's sarcoma, like the kind that affected the old men.
Why is this happening?
Doctors are trying to figure that out. It could be that some other virus is triggering an outbreak of latent HHV-8 infection, much as stress can trigger a cold sore. It could be that as treated AIDS patients age, their immune systems weaken faster.
How worrisome is this?
There are only 15 confirmed cases in San Francisco, and none of these patients appear to be in danger. It is nevertheless unsettling for something unpredictable to occur among vulnerable AIDS patients, and it dredges up memories of the terrible toll Kaposi's sarcoma once took.

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[Tim Horn]

Hi Jody...

We actually have another thread about this in the Research News forum (although that's probably not the best place for it):

http://forums.poz.com/index.php?topic=15955.0

If it's okay by you, I'm going to lock this and encourage everyone interested i this subject to check out the other thread (which includes a link to the most recent S.F. Chronicle article).

Cheers,

Tim