by Randy Shilts
July 17
MIAMI
It was true of the AIDS epidemic that whenever a new discovery occurred, marking a moment things might turn more hopeful or more dark, the new turn almost always was dark, and far darker than anyone suspected.
Worst-case scenarios had so often compounded worst-case scenarios that Dr. Dale Lawrence of the Centers for Disease Control was not shocked when he went to Miami to investigate what appeared to be the first incidence of AIDS in the wife of a hemophiliac AIDS sufferer.
The seventy-year-old woman was breathless, having just recovered from her first bout with Pneumocystis carinii pneumonia. Her husband had died just two months ago of Pneumocystis. Dale quizzed her on every possible risk factor. Had they peeled vegetables together? Was there possible rectal bleeding in the shared toilet? Did the couple use the same toothbrush? There was only one risk behavior, she said, and it was far more obvious. Because the pair rarely had intercourse, Dale could estimate when the wife was infected. From the dead man’s medical records, Dale soon realized that the husband had been infected with the virus long before his elderly wife. However, both became sick at virtually the same time.
The disease’s incubation period could be either very long or very short, depending on the victim’s own constitution. Moreover, the average incubation period for the disease could run four years, Lawrence now figured, far longer than the six months to two years that most researchers speculated.
Lawrence had spent the past year studying AIDS among hemophiliacs and blood transfusion recipients. He had long worried about what might happen to the wives and sexual partners of hemophiliacs, but the CDC, still starved for resources, had not devoted any research to this subject.
As the implications of these two AIDS cases in Miami took shape, Lawrence began to sense that the AIDS epidemic was unfolding in separate waves, or more precisely, like different marathons begun at differing times. The first race was run by gay men with AIDS. Another race, run by the recipients of blood products, had started much later, but its first runners had made it over the finish line in 1982, not much behind the runners of the first race. The hemophiliac’s wife who had moved from infection to disease so rapidly was like the runner of still another marathon, making it across the finish line with her husband, even though he had started much earlier than she. She simply needed less time to complete the course. The first cases in this or that remote state, and this or that country, were merely the leading edge of the first race, and the “winners” of the second race would be arriving soon, even though they were not yet visible. The bulk of the runners had yet to come within sight of the race’s end.
Standing at the finish line, the CDC was only clocking the arrival times. With the blood cases, where an infection date could be objectively ascertained by transfusion records, the CDC saw only the average times of the swiftest runners, who came down with AIDS two, four, or six months after their transfusion. The people who already had withstood two, three, or four years of incubation were yet to come.
Back in Atlanta, Dale Lawrence noted in his back issues of Lancet a study that had been conducted in San Francisco on the infection rate of gastrointestinal parasites among gay men. The study included a chart marking the steep curve of parasitic infection through the late 1970s and early 1980s. They were the very curves that had worried Selma Dritz years before, when she fretted about what would happen if some new infectious agent got loose in this population. Lawrence charted the numbers of AIDS cases in San Francisco and compared this curve to the Lancet curve on parasitic infections. They were virtually identical—but about five years apart. The slope of AIDS, of course, had just begun. Given the incubation period he now predicted, Lawrence had no doubts that AIDS would increase as dramatically as the parasite pandemic.
Meanwhile, as the Centers for Disease Control continued to struggle against a blood banking industry that preferred not to believe in the existence of transfusion-associated AIDS, a pharmaceutical company was licensed to start manufacturing heat-treated Factor VIII. The product was introduced to end the threat of hepatitis transmission from the clotting factor, and the CDC doctors figured that the heat used to sterilize the product also would kill the viral agent that they assumed was the cause of AIDS. However, the pharmaceutical company planned to price the heat-treated Factor VIII at double the cost of the traditional injections. A year’s worth of treatment for this sterilized material, therefore, would cost the typical hemophiliac between $16,000 and $24,000, according to the estimates of CDC hemophilia expert Dr. Bruce Evatt. Few hemophiliacs could afford the more expensive treatment. Evatt considered the heat-treated material to be outrageously priced but could not argue for greater availability of the formula on the grounds of AIDS prevention. The CDC had not yet definitively proved the existence of an AIDS virus, much less isolated the microbe responsible for the plague. The agency was in no position to make demands of major corporations.
Within the federal government or the public health establishment, the CDC found little support for its concern about the integrity of the nation’s blood supply. The administration’s top health officials, most notably Health and Human Services Secretary Margaret Heckler and Assistant Secretary for Health Dr. Edward Brandt, toed the blood banks’ line that there was minimal if any chance of contracting the disease through blood.
“I want to assure the American people that the blood supply is 100 percent safe,” said Secretary Heckler in early July, when she went to the Washington, D.C., Red Cross office to donate blood. As a model citizen, Heckler spent half an hour filling out the medical form for the self-deferral program, to demonstrate the effectiveness of donor deferral. “The blood supply is safe both for the hemophiliac who requires large transfusions and for the average citizen who might need it for surgery,” Heckler said at a Red Cross press conference.
Like blood banks across the country, the Washington facility had suffered a dramatic drop in donations during the preceding weeks of intense publicity over AIDS. In June, donations fell by 16 percent; in July, the level of donations in many blood centers was off 30 percent from the previous year. Spot shortages of blood occurred in urban areas. Controversy raged about consumers across the country who clamored for “designated” donor programs in which persons looking ahead to surgery would have friends and relatives donate blood specifically for their use. All the major blood banking organizations urged their members not to permit directed donations, fearing that the designated donor route would cause havoc in the blood industry.
“We want to help curb the panic,” said Dr. Herbert Perkins, medical director of San Francisco’s Irwin Memorial Blood Bank, when he announced that his center would ban designated donors. “The risk of getting AIDS from a transfusion is about one in a million.”
With the best of intentions, the establishment rallied to support the blood banks; after all, you couldn’t let hysteria undermine an institution that, undeniably, was a cornerstone of American medicine. Local public health officials demonstrated their interest by minimizing the threat of transfusion AIDS. In Los Angeles, for example, the announcement that three infants had died of AIDS probably contracted through transfusions brought heated denials from hysteria-wary local officials. “Unless you can find a direct link between a person with AIDS who exposed the infant in some way, it is difficult to call it AIDS,” said Dr. Shirley Fanin, associate deputy county health director. Fanin said the cases probably stemmed from congenital immune defects. The doctors argued that the immune profiles were those of AIDS patients, not the victims of genetic immune problems, but to little avail.
In Washington, Secretary Heckler and Assistant Secretary Brandt delivered familiar reassurances at another news conference to counter fear over the Los Angeles cases. “I think it is very important that the public have confidence in the safety of our blood supply,” said Heckler. Even if the cases did turn out to be AIDS, Brandt said, the problem was that the transfusions were given before the donor-deferral guidelines were established. “We think
the guidelines will help considerably” to reduce risk, he said.
As was so often the case, the media became an integral part of the story. Seeing themselves as the bastions of common sense, science writers and reporters covering the epidemic also wrote curb-the-panic stories and avoided asking the blood bankers tough questions. Although there was ample evidence that gay men were sexually transmitting the disease to each other long before they showed any overt symptoms, the media accepted the blood bankers’ assertion that transfusion AIDS could only be proved when a diagnosed AIDS case had given blood to a person later diagnosed with the disease. This is why only those people showing overt symptoms of the disease were disallowed from donating blood under the deferral guidelines, which remained the only protection Americans had against transfusion AIDS.
Rancor grew between blood banks and CDC researchers, who continued to insist that the banks needed to test the blood itself for signs of past hepatitis infection, and that deferral guidelines needed to be much broader. By summer, Dr. Harry Haverkos, who was organizing all the transfusion cases into a formal report on the AIDS danger, found blood bankers were becoming openly hostile to the agency. He now had documented ten transfusion cases. With the third case, he was convinced of the danger and was astounded that the Food and Drug Administration remained so skeptical of the CDC’s conclusions. To the disbelieving blood bankers, he finally asked in exasperation, “Tell us a number you need. If we have 20, 40, 100 cases—will you believe it then?”
At Stanford University Hospital Blood Bank, Dr. Ed Engleman was less convinced than most of his colleagues that donor-deferral guidelines were effective. The Stanford blood bank remained one of the few blood centers in the country to screen blood. One in fifty donations was being discarded because of immune irregularities. In July 1983, one donor imparted his “gift of life” at a bloodmobile visiting his work site. The blood, however, was discarded after Stanford tests measured the ratio of T-helper to T-suppressor lymphocytes to be .29 to 1, far below the average ratio of 2 to 1. The ratio was either the result of a botched test or severe immune problems. As was routine, the blood bank asked the donor, a thirty-nine-year-old male, to return to the blood bank for a battery of follow-up tests.
The man made the appointments but never showed up. Eight months later he was diagnosed with Kaposi’s sarcoma. By that time, he had donated blood at all the major Bay Area blood banks, including the two largest, Irwin Memorial Blood Bank in San Francisco and the San Jose Red Cross. In fact, between 1981 and 1984, the man had donated blood thirteen times in Bay Area blood banks. The man’s blood had antibodies to the core of the hepatitis B virus, and would have been eliminated had blood banks instituted the test the CDC had sought in January 1983. But he did not display visible symptoms of AIDS in those years, nor did he fit into any of the categories covered by the FDA’s deferral guidelines. (In San Francisco, in fact, the first five months of donor deferral had weeded out only 16 donors of the 50,000 screened.) After repeated questioning, the man had conceded that he had had three to five different male sexual contacts over the past several years.
Only at Stanford, where blood was tested, was this man’s blood discarded; eleven recipients of blood transfusions provided by other blood centers were not so fortunate.
SAN FRANCISCO
The same day that Dr. Dale Lawrence went to Miami, Gary Walsh found himself staring into a television monitor at the face of Rev. Jerry Falwell, live via satellite hookup from his headquarters in Lynchburg, Virginia. The local ABC affiliate had put together an hour-long show called “AIDS: The Anatomy of a Crisis.”
The fundamentalist minister had recently entered into the AIDS debate. He didn’t hate homosexuals, he said, just their “perverted life-style.” Gay bathhouses, the sites of “sub-animal behavior,” should be shut down, Falwell said, and blood donors should be required to fill out questionnaires about their sexual orientation. “If the Reagan administration does not put its full weight against this,” he said, “what is now a gay plague in this country, I feel that a year from now, President Ronald Reagan, personally, will be blamed for allowing this awful disease to break out among the innocent American public.”
Falwell began his televised discussion with Dr. Merv Silverman and Gary Walsh by citing Galatians. “When you violate moral, health, and hygiene laws, you reap the whirlwind,” he said. “You cannot shake your fist in God’s face and get by with it.”
“My God is not a vengeful God,” Gary Walsh countered. “When those children died of polio in the fifties, they were not punished by God. One of the most perverted uses of religion is to use religion to justify hatred for your fellowman.”
Falwell smiled benevolently. “Gary has nothing but my compassion, love, and prayers,” he said.
“I appreciate your prayers,” Gary responded. “I’m quite a sensitive person. I have a hard time feeling that you do have that compassion, that caring, and that love for me, given that I’m gay. That does not come across. What comes across is your anger, your hysteria, and your pointing a finger. That comes across, but your compassion doesn’t.”
“I do have compassion for you,” Falwell replied, “but I’d be less than honest if I told you that I find the homosexual life-style acceptable.”
Falwell went on to say that his church had seven psychiatrists and counselors on call to help cure homosexuals. Gary said that his homosexuality wasn’t what he wanted cured.
“I would publicly and personally like to invite Jerry [Falwell] to fly to San Francisco and spend a day with me,” Gary said. “I would like to open my heart to him. Maybe we could learn from each other. I’ll pay your way even.”
Falwell didn’t bat an eyelash. “I’d love to do that,” he said. “Gary wouldn’t have to pay my way. I’d love to come to San Francisco, pray with him, and read the Gospel, and show that kind of love.”
Falwell changed the subject to blood transfusions, but Gary interrupted.
“When are you coming?” Gary asked.
Falwell ignored him and kept talking about blood transfusions.
“I’d like to know when you could do this,” said Gary. “Let’s set up a time.”
“Gary,” Falwell said. “I’d like to do that. Just write me, Jerry Falwell, Lynchburg, Virginia. Mark it personal. I will get it. I will be in touch with you. I will do everything I can to help you in every way possible.”
That ended the show. Gary wrote Falwell and reminded the pastor that he had promised on television to come and spend a day with him in San Francisco. He was not surprised, however, that Falwell never answered his letter.
VANCOUVER
Gaetan Dugas loved slipping back into his navy-blue flight attendant’s uniform for Air Canada. Although he was growing weaker and his health appeared to be slipping, he needed to return to work to keep his travel benefits. Other attendants were enraged at being forced to work with an AIDS victim and complained to management. Air Canada, however, was a government airline and found itself to be in no position to discriminate. Gaetan was kept on short flights, usually from Vancouver, British Columbia, to Calgary, Alberta, where he wouldn’t get worn out. Sometimes at night, terror stalked his thoughts and he would call up friends to spend the night on the couch, just so he wouldn’t have to be alone.
One evening, another steward was over at Gaetan’s watching the news when Jerry Falwell came on, bellowing about AIDS and God’s wrath. Gaetan grew sullen. His friend was surprised he didn’t have some smart-ass comment.
“Maybe Falwell is right,” said Gaetan. “Maybe we are being punished.”
34
JUST ANOTHER DAY
On July 26, 1983, the CDC reported that 1,922 Americans had been stricken with AIDS. The disease had spread to thirty-nine states and twenty nations. The average age of the typical AIDS victim was thirty-five. Although only 39 percent of the total caseload was dead, the new figures did not offer a hopeful prognosis. Of all the people diagnosed with AIDS on or before July 26, 1982, at least two-thirds were de
ad. Few survived among the people who had suffered from the disease two years before.
July 26, 1983, was a warm and sunny Tuesday in most parts of the country. It was a day of scientific jealousies, academic intrigue, and funding shortages roundly ignored by reporters. Brushfires of hysteria flared, died away, and flared again. New computers spit out death tolls, doctors wondered when people would start caring, and thousands of Americans watched their lives slip away. In the history of the AIDS epidemic, it was just another day.
CENTERS FOR DISEASE CONTROL, ATLANTA
Don Francis had heard of Robert Gallo’s legendary temper, but the meeting that morning was the first time he had seen the famed scientist’s churlishness in full force. The gathering had been called to try to coordinate the search for the retrovirus responsible for Acquired Immune Deficiency Syndrome. The CDC had spent the past two years gathering specimens from cases and controls in their various AIDS studies. The National Cancer Institute had the technology and expertise to explore the CDC specimens for an answer to the epidemic. At this point, however, neither agency was sure of what the other was doing; it was time they started working together.
Earlier, Don Francis had explained the status of CDC lab work to Robert Gallo as he drove the retrovirologist from the airport to the CDC’s Clifton Road headquarters. Francis had been searching for more than a year for a major retrovirology lab for AIDS work. Given the problems he faced in setting up a CDC retrovirus lab, Francis was relieved that, at last, the National Cancer Institute seemed genuinely interested in doing research on the epidemic of immune deficiency.
For the meeting, the key CDC people involved in AIDS studies assembled in Director Walter Dowdle’s office at the Center for Infectious Diseases with Dowdle’s assistant John Bennett, Jim Curran, and Bruce Evan. Harvard researcher Dr. Max Essex and an associate, fresh from research on links between AIDS and HTLV-I, had flown in from Boston. The talks broke down when Dr. Essex’s associate mentioned their work on cell line CT-1114. For some reason, this CDC cell line, which had been infected with blood from AIDS patients, had burst forth with viral activity. The CDC had sent it to Essex’s lab so the Harvard doctor could perform tests to see whether HTLV-I or HTLV-II was present, perhaps giving an indication of whether the viruses caused AIDS. Essex was using monoclonal antibodies in the studies.