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.”