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.”