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AIDS no longer a death sentence, but the epidemic is far from over

Tom Menard has been HIV positive since least 1981. June 5th is 30th anniversary discovery virus thwould eventually become known

Tom Menard has been HIV positive since at least 1981. June 5th is the 30th anniversary of the discovery of the virus that would eventually become known as HIV. | Tom Cruze~Sun-Times

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A brief 30-year history of AIDS
Research focuses on vaccine to prevent infection
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Updated: September 24, 2011 12:21AM

On June 5, 1981, federal health officials issued a report about five young, gay men in Los Angeles struck with a rare form of pneumonia usually limited to people with failed immune systems.

It was the first formal mention of the disease now known as acquired immune deficiency syndrome, or AIDS.

Thirty years later, the virus that causes AIDS has infected more than 60 million people worldwide and killed nearly half that number, including more than 20,000 people in Illinois.

Infection with the human immunodeficiency virus, or HIV, is no longer the death sentence it once was, thanks to the availability of drugs to suppress it.

But with more than 56,000 new HIV infections in the United States each year, the AIDS epidemic is far from over. And despite better treatments, there is still no cure, and significant hurdles remain in eradicating the disease.

Tom Menard of Edgewater doesn’t just remember the first 30 years of AIDS. He survived them.

Menard, 52, has been HIV-positive since at least 1982. He is now vice president of operations for the AIDS Foundation of Chicago. And his survival is a sign of the remarkable medical advances made in the fight against AIDS.

Helped by a revolution in drugs

Menard was 22 and living in Hartford, Conn., when rumors started to swirl in 1981 about a mysterious illness affecting gay men who had visited New York. At first, people thought the disease was being spread by bacteria in the city’s gay bathhouses or by party drugs known as “poppers.”

“There was a lot of fear and, obviously, no knowledge at that point,” Menard said.

It wasn’t long before people he knew started getting sick. Attending funerals for friends and co-workers soon became a grim, weekly ritual.

Still, Menard didn’t worry much during the height of the epidemic about his own risk of contracting HIV because he had been in a monogamous relationship. Neither he nor his partner had developed symptoms by the late 1980s, so “we kind of figured, ‘OK, we’re out of the woods.’ ”

Things abruptly changed in 1991, when Menard came home from a trip to New Hampshire with what he thought was a heat rash on his back.

Then working at an AIDS organization in Rhode Island, he mentioned the rash to a co-worker.

“He looked down and said, ‘You’ve got shingles. You need to go and get tested,’ ” Menard recalled.

Shortly after, Menard learned that he was HIV-positive. His partner of 9 1/2 years wasn’t, meaning Menard had been infected before they started dating. The relationship fell apart.

Menard also learned that his T cell count — a measure of his immune system’s ability to fight infection — was dangerously low. He immediately began taking the drug AZT, which at the time of its approval by the U.S. Food and Drug Administration in 1987, was the first drug available to treat HIV infection.

But Menard, like many HIV patients in those days, knew AZT wasn’t the cure they were hoping for. It was only a way to delay the inevitable.

Every day, he took three doses of AZT every four hours and four or five additional pills to deal with the side-effects of the drug — a regimen that left him feeling drained and “loaded with chemicals.”

By 1992, AZT no longer worked well at keeping Menard’s infection in check. Within two years, his T cell count had dropped to 97 — meaning his immune system had all but shut down — and Menard, who is 5-feet-11, had dropped to just 137 pounds.

“There were days that all I could do was get up, throw up, go to work, come home, have dinner and go to bed, and that was probably for about a year or so,” he said.

The turning point came when a new class of drugs known as protease inhibitors started to hit the market in the mid 1990s. The use of these drugs in combination with older HIV medications in so-called “drug cocktails” revolutionized HIV treatment and brought Menard and countless others back from the brink of death.

“For most people who made it to that point, that was a real turning point in terms of health, but also in terms of hope,” Menard said.

New worries, but also hope

There are now more than 30 drugs available to suppress HIV and delay the virus’ progression to full-blown AIDS.

Following the arrival of the first drug cocktails, numbers of new infections and AIDS-related deaths in the United States began to fall for the first time.

By the mid-1990s, new HIV infections were being reported at just one-third the numbers from a decade earlier, according to the federal Centers for Disease Control and Prevention.

And the prognosis for a newly infected person in their 20s has gone from less than a year in the 1980s to 50 years or more with proper treatment.

Still, side-effects associated with HIV medication can be severe.

There is also growing concern about the long-term impact of HIV and the drugs used to treat it on the health of older survivors.

For instance, people with HIV are at increased risk for heart disease, even if they have no other risk factors.

“These are problems that now have to be addressed by HIV physicians as the population ages,” said Dr. Michael Gottlieb, lead author of the June 5 report on AIDS and an associate clinical professor of medicine at the David Geffen School of Medicine at UCLA.

Menard, so far, has avoided serious side-effects from his three-pills-a-day treatment regimen, and his T cell count has been normal for the past eight years.

Once convinced he would never live to see old age, Menard is now hopeful for even better treatments — and eventually a way to rid HIV infection from the body.

“My goal was always to just be there for the next treatment, to get through until there was something better and better. And in hopes that at some point, there is a cure,” he said. “I remain an optimist.”

Blacks remain especially hard-hit

Current treatments allow people with HIV to live longer, healthier lives. But HIV-positive Americans are finding it increasingly difficult to access these potentially life-saving medications as cash-strapped states make deep cuts to their AIDS drug-assistance programs.

In April, the state of Illinois tightened eligibility requirements for AIDS drug assistance, so people whose income is more than 300 percent of the federal poverty level no longer would be eligible to apply.

The change could limit the availability of HIV medication for 100 or more people a year who wouldn’t otherwise be able to afford treatment, the AIDS Foundation of Chicago estimates. A year’s worth of HIV medication can cost $18,000 or more, and about 30 percent of people with HIV are uninsured. There are also more than 8,000 Americans on waiting lists for drug assistance.

As AIDS turns 30, preventing new infections also remains a challenge, in large part because high-risk groups continue to understimate their risk of infection.

Every year, more than 56,000 new HIV infections and 18,000 AIDS-related deaths are reported nationwide. Today, more than 1 million Americans are living with HIV, though 20 percent don’t know it.

Gay men continue to account for more than half of new infections, and they are the only group in which the number of new infections is rising.

HIV also has devastated black communities. Blacks make up just 14 percent of the U.S. population but account for nearly half of people with HIV and 45 percent of new infections each year. Black women are 15 times more likely than white women to be infected by HIV, while black men have six times the infection rate of white men, according to the CDC.

These figures indicate that despite the public’s waning sense of urgency about AIDS, the global health crisis is far from over.

“The misconception is that it’s been 30 years, it’s a milestone, it’s over,” said Gottlieb. “But in fact, the HIV epidemic probably hasn’t even reached middle age.”

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