Tomorrow — June 5, 2011 — marks the 30th anniversary of the first recognition of the HIV epidemic. In honor of the occasion, I’m running excerpts from Beating Back the Devil, my 2004 book on the CDC’s disease-detective corps, because of one them wrote that first paper that described the first cases of what came to be known as AIDS.

In the first excerpt, physicians in Los Angeles begin to realize they are seeing something new and perilous among gay men in the city. In the second excerpt, they try to get the word out, but no one will help them. Today, they succeed — but for much of the country, the epidemic still goes unrecognized.

AIDS: 1981, Los Angeles (Part Three)

On a blistering Sunday afternoon, abnormally hot for mid-May, the two doctors met at Shandera’s apartment in West Los Angeles, a raffish, not-yet-gentrified mix of artists and ethnicities. Gottlieb brought the medical charts of the three patients he had seen and the fourth who had been sent to him. Shandera had the paperwork on the cancer patient in Santa Monica, who died shortly after Shandera interviewed him.

Riffling through the pages of treatment histories and test results, they drafted a short paper, only nine paragraphs long. It began matter-of-factly:

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. All 5 patients had laboratory-confirmed previous or current cytomegalovirus infection and candidal mucosal infection.

They followed with a description of all five patients: Patient 1, 33 years old, diagnosed with pneumonia in March after two months of fever and liver dysfunction; dead. Patient 2, 30 years old, diagnosed with pneumonia in April after five months of fever and liver dysfunction, still experiencing daily fevers even though the pneumonia was gone. Patient 3, hospitalized in February with pneumonia. Patient 4, 29, successfully treated for Hodgkin’s disease three years ago, diagnosed with pneumonia in February; dead. Patient 5, 36, diagnosed with widespread yeast infection in September, hospitalized with pneumonia in April, still suffering from candida despite repeated courses of drugs.

There were no obvious reasons, the doctors added, why this should be an outbreak. The patients had very little in common.

The patients did not know one another and had no known common contacts… The 5 did not have comparable histories of sexually transmitted disease… Two of the 5 reported having frequent homosexual contacts with various partners. All 5 reported using inhalant drugs, and 1 reported parenteral drug abuse. Three patients had profoundly depressed numbers of thymus-dependent lymphocyte cells.

And in a tentative, carefully worded analysis, Gottlieb and Shandera underlined how odd those occurrences were.

The occurrence of pneumocystis in these 5 previously healthy individuals without a clinically apparent underlying immunodeficiency is unusual. The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.

When the paper was done, the authors titled it, “Pneumocystis Pneumonia in Homosexual Men–Los Angeles.” Gottlieb signed his name to it, along with the names of Schanker, Fan, Weisman, and two other doctors who had seen the five patients. Shandera did not sign his name. By CDC tradition, EIS officers who contributed to the MMWR did not get named credit on papers; he was listed only as an anonymous representative of the “Field Services Division, Epidemiology Program Office, CDC.”

The next day, Shandera called the MMWR and dictated the report over the phone. The transcribed text was passed up the line to Dr. James Curran, chief of the CDC’s sexually transmitted diseases unit. He scrawled a note across the margins of the first page: “Hot stuff.”

Despite that endorsement, the paper did not make it into the MMWR unchanged. When it ran, on June 5, 1981, its title had been shortened to “Pneumocystis pneumonia–Los Angeles.” And it ran not on the cover of the booklet, but inside on pages 2 and 3. The placement, and the words cut from the title, came from a combination of protectiveness, squeamishness and tact. The MMWR staff were uncertain how much attention should be drawn to a problem that appeared to be afflicting only homosexuals.

The following week, pursuing a tip, Shandera visited the intensive care unit at LA County Hospital. There were three men in the ICU, all on respirators and dying. All three had pneumocystis pneumonia.

“That’s when I knew this was bigger than we realized,” he said. “I thought, if you can find patients this easily, immediately after a published report of something that looked rare, then this outbreak is of major importance.”

–  –  –

The disease described in their article was dubbed Acquired Immune Deficiency Syndrome — AIDS — in July 1982. the organism that causes it, HIV, was recognized in 1983. By the end of 2003, almost 200,000 medical journal articles has been written about HIV infection and AIDS. (By 2011, more than 300,000.) Shandera and Gottlieb’s was the first. By the beginning of 2004, there has been more than 20 million deaths from AIDS across the globe. (By 2009, almost 30 million.)

Gottlieb, who was just beginning his medical career in 1981, spent it working on AIDS. As its editor had promised, the New England Journal of Medicine accepted his article on the first patients and published it in December 1981. He treated many of the disease’s early victims in Los Angeles, including the movie star Rock Hudson. When Gottlieb announced to a July 1985 press conference that Hudson was dying of AIDS, he forced the epidemic into the awareness of mainstream American society, sparking a slow and reluctant political response. He never went back to the transplant-immunity work for which UCLA has recruited him, and after 8 years there did not receive tenure. Instead, he went into private practice and continued to do research.

Shandera took a different path. As he had planned, he left Los Angeles, less than a month after their urgent bulletin was published. It was a tumultuous time for him. He had hoped reassignment would allow him to see his ailing father, but his father died within a month. The potential relationship he planned to investigate in Baltimore did not ignite. He completed his second year in the EIS in Atlanta. Several times, he dropped in on meetings of the CDC’s early response to AIDS, a small task force of people pulled from their regular jobs who were struggling to keep up with the burgeoning epidemic. Soon, though, his new job pulled him away.

When his EIS stint ended, he left for a fellowship in clinical infectious disease research in Boston. He went into private practice in San Antonio, and then in Portland, and then returned to academic work in South Carolina, and then in Dallas, where he opened the first AIDS clinic in the city’s largest public hospital.

“We had only two doctors, and at the time only one drug,” he said. “We were on edge and emotional all the time. So many people were dying.”

He has wondered, sometimes, if leaving Los Angeles was the right thing to do. But he has never felt any ownership of the AIDS epidemic, or any sense that his name should be associated with it.

“If I hadn’t been there, someone else would have reported those cases,” he said. “If Mike hadn’t written his paper, someone else would have. I happened to be there, and it fell to me to see the first cases, but I played such a bit part.”

Flickr/Zoriah/CC

This Sunday — June 5, 2011 — marks the 30th anniversary of the first recognition of the HIV epidemic. In honor of the occasion, I’m running excerpts from Beating Back the Devil, my 2004 book on the CDC’s disease-detective corps, because of one them wrote that first paper that described the first cases of what came to be known as AIDS.

In the first excerpt, physicians in Los Angeles begin to realize they are seeing something new and perilous among gay men in the city. Today, they try to get the word out, but no one will listen.

AIDS: 1981, Los Angeles (Part Two)

The man’s name was Michael. He was 33 years old, tall and good-looking, with short, peroxided hair and prominent cheekbones. He was a model, he confided; he’d had his face enhanced with cheekbone implants.

He was also quite sick. He had been ill since October with a fluctuating fever and swollen glands in his neck and under his collarbone. The glands had gone down, but the fever would not go away. He had lost a lot of weight, and now he was losing his hair. He had raw patches of fluffy white growths — candidiasis, a yeast-like fungus, as well as herpes virus — inside his mouth, between his buttocks, and on his index fingers. The medical ward had run some tests already: He had an organism called cytomegalovirus in his urine, his white blood cell count was low, and one particular class of white cell, the T-lymphocytes, were much fewer than they ought to be.

All the findings pointed to the same conclusion: His immune system was not working the way it should.

There was no indication, though, why that should be so. He had not had cancer or chemotherapy. He had not had an organ transplant. He was not elderly — aging wears down the immune system — and he did not have an inherited immune deficiency, because children born with that condition seldom survived long, and certainly not to Michael’s age. There was no evidence that he had suffered any medical or environmental insults that would impair his immunity. His symptoms were treatable, but his underlying condition was unexplained.

When Gottlieb and Schanker arrived at his room, Michael was on the phone. He was telling a friend, archly, “These doctors tell me I am one sick queen.”

Michael’s symptoms were treated successfully, and he was discharged a week later. A month after that, he was readmitted to the hospital, still feverish but now almost unable to breathe. A resident who had treated him the first time, Dr. Robert Wolfe, spotted him on the same ward. Knowing the man’s immune system had been depressed before, and fearing a new infection had taken hold, Wolf ordered a chest X-ray and a bronchoscopy, a direct viewing of the airways through a flexible tube that lets its operator bring up specimens form deep in the lungs.

The results were perplexing and alarming. The air spaces in Michael’s lungs were filled with millions of Pneumocystis carinii, a microscopic protozoan that attacks cancer patients and recipients of transplants, people whose immune systems have essentially ceased to function. Pneumocystis was so rare that Gottlieb, a specialist in transplant immunology, had never seen a case.

The news buzzed through the Los Angeles medical grapevine. Shortly after Michael was readmitted, Gottlieb got a call from Dr. Peng Thim Fan, a rheumatologist, and Dr. Joel Weisman, an osteopath who had a general practice treating gay men. Weisman was also seeing patients with unexplained fevers and weight loss, lymphadenopathy, and cytomegalovirus infection. Gottlieb arranged to have two of the patients admitted to UCLA. By the time they arrived, they too had pneumonia. Before being put on respirators, they were bronchoscoped.

Like Michael, their lungs were full of pneumocystis, and their blood chemistries were awry. Their overall T-cell counts were not only low, but out of balance. There were almost no helper T-cells, the white blood cells that help manufacture antibodies to mount an immune defense against organisms. There were far too many cytotoxic and suppressor T-cells, the ones that kill invading organisms and then shut down the immune response.

All three men were seriously, inexplicably ill. Michael never left the hospital. He died May 3.

“In medicine,” Gottlieb said, “one case of something is a curiosity. Two cases is very interesting. But a third case, that makes you ask: Is this going to be something big?”

Gottlieb thought the answer was yes. Weisman was seeing more patients with stubborn fevers and fungal infections. Another friend had told him of a fourth case of cytomegalovirus infection, in a hospital in another part of town. If the mystery syndrome was sprinkled throughout Los Angeles, surely it would be of concern elsewhere also. He called the New England Journal of Medicine, the most respected medical journal in the country.

“I said we had at least three cases, all gay men, all with pneumocystis pneumonia, all with severe immune deficiency — something was up,” Gottlieb recalled. “I told them it might be bigger than Legionnaires’ disease.”

The journal’s editors were interested, but not enough to bend their strict rules. It would take at least three months to get an article reviewed by other doctors, approved, and into print, they said. And while it was being approved, Gottlieb would not be able to publish anything else about the mystery syndrome. The journal had an ironclad policy that anything appearing in its pages could not show up in another journal first.

There was a compromise, the editor-in-chief suggested. If Gottlieb wanted to alert the medical world rapidly, he could consider placing an article in the Morbidity and Mortality Weekly Report, the weekly bulletin published by the CDC. The Journal did not consider the staple-bound newsletter, the size of a folded sheet of paper, to be any kind of competition, If Gottlieb’s news appeared there first, he could still write a paper for the prestigious outlet later.

Gottlieb was a researcher and a clinician; he had very little contact with the world of public health. But he did, he realized, know someone at the CDC. He called Wayne Shandera.

–  –  –

Shandera and Gottlieb had always planned to get together in Los Angeles, perhaps to work on a project that combined their interests. Shandera had liked the idea, but the realities of health department work had gotten in the way. Here, though, was an opportunity to explore a truly interesting outbreak, even if it was occurring just as he planned to leave Los Angeles for good. EIS members were supposed to publish in the MMWR if possible. The diminutive booklet was the best-read magazine no one had ever heard of: Thousands of state health department epidemiologists and university infectious disease physicians pored over it every week.

So Shandera welcomed the call from his onetime attending, even though Gottlieb was carefully nonspecific.

“I said something like, ‘Hi, Wayne, how are you, I’m sorry I haven’t seen you lately — and by the way, are you hearing anything at the health department about anything unusual among gay men?'” Gottlieb said. “Because I wondered whether anyone else perhaps was already on to this. I can still remember him saying no, and feeling a bit let down. Because if no one else had noticed it, maybe we were over-reacting.”

Shandera promised to look around. He did not have to look far. One of the department’s epidemiologists had gotten a report from St. John’s Hospital in Santa Monica of a patient hospitalized with pneumocystis. As a health department employee, Shandera was allowed access to otherwise private medical records. He drove down to Santa Monica.

The patient was a 29-year-old man. He, too, was very ill. He had had Hodgkin’s disease, a lymphoma, three years before, but had recovered after radiation therapy. There was no evidence that the cancer had recurred, but he had had pneumocystis pneumonia for more than a month. Cytomegalovirus had been found in his system as well.

“He looked like the cancer patients I had seen at Stanford — like someone who had been through a lot of chemotherapy, or was suffering form very end-stage cancer,” Shandera said. “He was lying in bed, wasted, looking very thin. Pneumocystis pneumonia causes air hunger; you develop cyanosis, purpling and mottling of the skin, and you lose all your peripheral fat, like a famine victim.”

The man’s lover was with him, in the waiting room of the intensive care unit. Shandera talked to both men, and then drove back to Los Angeles. Epidemiologically speaking, the patient was not exactly like the others, because he had something in his recent past — cancer and cancer treatment — that could have disrupted his immune system. Still, the pneumocystis and cytomegalovirus were unusual enough to be striking. Shandera called Gottlieb back.

“There’s another one,” he said, adding almost as an afterthought: “This one is homosexual too.”

Gottlieb felt the hair on the back of his neck bristle. “I  knew it had to be related,” he said. “We had to get this out.”

Next: The warning, and what came afterward.

Flickr/MichaelSarver/CC

This Sunday — June 5, 2011 — marks what public health considers the 30th anniversary of the international epidemic of HIV-AIDS.

If you’d like a summation of the past 30 years, Larry Altman, the retired senior medical writer of the New York Times, did an excellent job last Tuesday. And the Centers for Disease Control and Prevention summed up, in a paper released at noon ET, the state of the epidemic today.

I was not yet a reporter when the plague began, so my memories of that time are not professional memories, but personal. I was a student, studying mostly theatre, and almost all my friends were gay. And suddenly my friends were dying. People who remember will know what I mean. We got used to seeing people we worked and drank with looking, abruptly, like famine victims. We grew battlefield-numb bringing meals, and attending memorials, and calling people’s mothers on their death anniversaries. We knew when the multi-drug cocktails that changed the course of the epidemic had arrived, not because we read the journal articles, but because suddenly we could take our florists off our speed-dial.

I worry, in the complacency that has settled now around HIV as an almost-chronic illness, that the stunning initial impact of this disease that changed the planet has been somehow forgotten. So for my next three posts, I’m going to take you back to those days.

A few years ago, I wrote a book chronicling the history of the Epidemic Intelligence Service, the young disease-detective corps of the CDC. EIS officers, as they’re called, were in on every major disease event of the last half of the 20th century: the end of smallpox, the beginning of the end of polio. And though his name was never well-known and has been almost forgotten, one of them alerted the world to the first known cases of AIDS.

His name was Wayne X. Shandera, and the anniversary that we’ll mark on Sunday is actually the 30th anniversary of the publication of his urgent bulletin, the first in any medical journal to describe a case of HIV.

Below is Chapter 6 of Beating Back the Devil. We begin in California, in the winter of 1980, where Wayne Shandera is contemplating his options for his 2-year stint in the EIS.

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