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A leap from oddity to epidemic

"In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died ..."_ Morbidity and Mortality

Weekly Report, June 5, 1981

The age of AIDS officially began 10 years ago, on June 5, 1981, when the Centers for Disease Control published a short, dry report on an outbreak of Pneumocystis carinii pneumonia among five gay men in Los Angeles. The rare disease had previously been seen only in cancer patients with suppressed immune systems.

The agency placed it on the second page of its Morbidity and Mortality Weekly Report, after a paper on dengue in the Caribbean.

Now AIDS has spread its shadow around the globe. By the year 2000, the World Health Organization recently calculated, some 40-million people will be infected with the AIDS virus. A million Americans are thought to carry the virus, and more than 106,000 have died from it.

We now know that some of the infected may live virtually without symptoms for more than a decade before developing AIDS. So it is obvious that the AIDS epidemic really began in the United States in the late 1960s or early 1970s, spread primarily by sexual intercourse, the sharing of needles by intravenous drug users and the use of virus-contaminated blood products.

While they once had keen hopes of bringing the disease quickly under control, researchers say they are settling in for the long haul, expecting the battle against AIDS to occupy the rest of their working lives. And advocates for people with AIDS say they are trying to decide where to focus their energies and how to maintain the nation's flagging interest in the dread disease.

Many researchers recall how at the beginning of the epidemic they believed it would be self-limiting, quickly burning itself out among a small group of gay men who were wildly promiscuous. They thought the agent of the disease would be quickly isolated and the means then devised to wipe it out.

These hopes evaporated as the search for effective drugs proved far more difficult than had been thought, and efforts to devise a vaccine were continually frustrated by the virus's subtle defenses. Medical experts now think the AIDS virus will be rampant for decades.

"Who could have dreamt this?" said Dr. Donna Mildvan, a doctor and medical researcher at Beth Israel Hospital in New York.

Researchers emphasize that they have made some progress. "Our clinics and virtually every clinic that took care of AIDS patients were somber and terrible" at the outset, said Dr. Samuel Broder, director of the National Cancer Institute. "There was a very strong likelihood that every week or every month that you saw a patient, the patient would do worse."

But now, "fewer and fewer need the intensive hospitalization that they did before," he said. "We can keep people working and functioning much longer."

Doctors remember vividly when and where they saw their first AIDS patient. It is an event burned in their minds.

"It was in June of 1981, on ward 3B," said Broder. "We saw a young gay man with the most devastating immune deficiency we had ever seen. We said, "We don't know what this is, but we hope we don't ever see another case like it again,"' Broder recalled.

And every doctor can tell you when it suddenly clicked in their minds that AIDS was going to be a serious epidemic. For Dr. Mildvan, the pivotal insight came in January 1981 when she was having lunch with another doctor.

As they discussed their patients over lunch, Dr. Mildvan said, the picture suddenly became clear. "All of a sudden, we knew," Dr. Mildvan said.

"The shingles epidemic we were seeing must be part of this. And this must be part of it and that must be part of it. Part and parcel of our understanding was that it was a lot bigger than what it looked like. It was getting more and more terrifying."

The techniques of medicine and biology are more powerful than ever, yet the AIDS epidemic is pushing scientific capabilities to its limit. Researchers say AIDS has been one of medical science's biggest challenges.

"Science is being put to the test by the AIDS epidemic," said Dr. Jerome Groopman, an AIDS researcher at New England Deaconess Hospital in Boston. Researchers have isolated the AIDS virus, have cloned its genes, have studied its proteins and have found drugs that can relieve some suffering for people with the disease, yet it is as deadly as ever.

Some advocates say they are finding it hard to keep their spirits up. "Morale is exceptionally low," said Larry Kramer, a founder of the AIDS Coalition to Unleash Power, or Act Up.

Kramer and others, like Martin Delaney, director of Project Inform, an advocacy group in San Francisco, said that they had thought they could change the world if they could just become part of the system, getting themselves seats on crucial federal committees. But now they have learned that is not enough."

"We fought so hard just to have a seat at the table," Kramer said. ""Now we're on every government committee, the National Institutes of Health, the Centers for Disease Control, the Institute of Medicine, the Food and Drug Administration. We're represented everywhere.

"And something awful happened when we got inside. We saw that the emperor had no clothes. The bureaucracy is so thick and so dense that it's impenetrable. Every single thing has to go through a committee. Even if a new drug comes along, it's got to go through 18 committees before it gets on an agenda to be voted on."

Some experts insist that science, at least, has risen to the challenge and gleaned knowledge that will lead to real advances in treatment in the next decade.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said: "The scientific advances have been extraordinary. It's really been unprecedented."

He said that with the growing knowledge of the molecular biology of the virus, scientists are "on the threshold of being able to make drugs in a designer fashion with a high degree of specificity." Fauci predicted that these drugs will further extend patients' lives and will also lengthen the time when people are infected but free of symptoms of the disease.

"I don't like to call it a triumph when people are still suffering," Fauci said of the scientific advances. "But if you take it in a vacuum, it's quite impressive."

But that, Dr. Mildvan said, is the paradox that haunts her and others.

"With my head, I know we have made major strides," Dr. Mildvan said. " I know that. But with my heart, I know we haven't begun yet."

_ Information from Newsday was used in this report.

1981: Federal Centers for Disease Control publishes report of new disorder of five homosexual men in Los Angeles. Disease is nicknamed Gay-Related Immune Disaster (GRID).

1983: CDC reports first cases of women contracting AIDS through heterosexual contact and first cases of pediatric AIDS. AIDS virus, called HIV-1, discovered by Dr. Luc Montagnier and other researchers in France.

1984: Researcher Robert Gallo of the National Cancer Institute discovers same HIV-1 virus.

Founder of San Francisco's Gay Freedom Day Marching Band and the Gay Men's Chorus, Jon Sims, dies.

1985: Scientists identify HIV-2, a closely related virus that also produces AIDS. Testing to screen all donated blood for HIV virus begins.

Actor Rock Hudson dies.

1986: NCI researchers announce anti-viral drug AZT successful in prolonging lives of AIDS patients.

Lawyer Roy Cohn, fashion designer Perry Ellis and makeup artist Way Bandy die of AIDS.

1987: Food and Drug Administration licenses AZT. First AIDS vaccine approved for human trials in the United States.

Entertainer Liberace, choreographer Michael Bennett and fashion designer Will Smith die.

1989: FDA says it will allow distribution of experimental AIDS drug, DDI (dideoxyinosine), free to all AIDS patients unable to tolerate AZT, while DDI is still being tested.

Actress Amanda Blake and Tampa resident Eliana Martinez die of AIDS.

1990: Genentech Corp. of California reports experimental vaccine has succeeded in protecting two chimpanzees from infection by the AIDS virus.

Jensen Beach dentist Dr. David Acer, fashion designer Halston and Indiana teen-ager Ryan White died of AIDS.

1991: Three AIDS cases linked to Jensen Beach dentist David J. Acer, who died from AIDS in September 1990. Robert Gallo drops his claim as co-discoverer of HIV and acknowledges virus he found in 1984 had been sent to him by a French researcher.

Little Shop of Horrors director and songwriter (Under the Sea from The Little Mermaid) Howard Ashman, Cable News Network newscaster Tom Cassidy and ballet dancer Edward Stierle die.

Sources: Facts on File, New York Times, Washington Times, Associated Press, Centers for Disease Control. Research by Kitty Bennett of the St. Petersburg Times library. Photos from Times files.