by Randy Shilts
Dr. Barre hardly needed the guidance. Quiet and methodical, the thirty-four-year-old researcher had spent most of her career in viral labs, from the Pasteur Institute to the National Cancer Institute, and had earned a reputation for her thoroughness. Both Barre and Montagnier suspected that they would find a retrovirus like the Human T-cell Leukemia virus, or HTLV. Barre had once studied under the NCI retrovirology whiz, Robert Gallo, who had proposed HTLV as a possible cause of AIDS. If the virus in the lymph node behaved like HTLV, they should soon see a proliferation of lymphocytes in the growth culture. Though such viral stimulation typically took weeks to accomplish, Barre decided to start checking the culture every three days, just to keep things under proper scrutiny. This was a new disease, she thought, you never knew what you might find.
January 4
CENTERS FOR DISEASE CONTROL, ATLANTA
Don Francis pounded the table with his fist. The other officials from the Centers for Disease Control exchanged vaguely embarrassed glances. The blood bankers were becoming visibly angry.
“How many people have to die?” shouted Francis, his fist hitting the table again. “How many deaths do you need? Give us the threshold of death that you need in order to believe that this is happening, and we’ll meet at that time and we can start doing something.”
As far as Francis was concerned, the assembled leaders of the blood banking industry were about to take a course of action that could, at best, be termed negligent homicide, although Francis was known to drop the word “negligent” in private discussions on the issue. The blood banks refused to believe that transfusion-associated AIDS existed, and now they were going to kill people because of it, Francis thought. It was that simple.
Privately, almost all the officials from the Centers for Disease Control agreed with Don Francis, although they were groaning to themselves that he had shown so little politesse as to say it aloud.
The meeting of this ad hoc advisory committee for the U.S. Public Health Service had been fashioned to embrace every group with an interest in the burgeoning epidemic, including the American Red Cross, the American Association of Blood Banks, the National Hemophilia Foundation, the National Gay Task Force, and the Pharmaceutical Manufacturers Association, which represented the commercial blood-products makers, as well as the representatives from the National Institutes of Health and the Food and Drug Administration, the one federal agency that has regulatory power over the blood banks. Congressional aide Tim Westmoreland was there too, as well as reporters from most of the major medical journals and the Philadelphia Inquirer, the only major newspaper to provide thorough coverage of the meeting.
The CDC had hoped the assembly would produce some action to arrest the threat the new syndrome posed to the nation’s blood supply. Even before the meeting opened, however, it was clear that each group had come with its own agenda, and on most lists, stopping the potential spread of AIDS was secondary. Blood bankers were openly skeptical of the CDC claim that AIDS could be transmitted through blood. Some FDA officials remained unconvinced that AIDS even existed. Gay groups already had condemned any call for screening of blood donors as “scapegoating” homosexuals. The San Francisco Coordinating Committee of Gay and Lesbian Services, chaired by Pat Norman, issued a policy paper asserting that donor screening was “reminiscent of miscegenation blood laws that divided black blood from white” and “similar in concept to the World War II rounding up of Japanese-Americans in the western half of the country to minimize the possibility of espionage.”
As Tim Westmoreland saw the players assemble in the CDC’s Auditorium A, all facing off at tables positioned in a large square, he sensed that this would not be a polite meeting of scientists engaged in the usual academic one-upmanship. There were interests to guard and turfs to protect. In most reminiscences, the participants would simply refer to the conference as “that horrible meeting.”
Jim Curran described the two options the blood industry could take. They could either adopt guidelines to keep people at high risk from donating blood or they could start testing blood to try to weed out likely AIDS carriers. Curran gave the blood bankers a sobering conclusion to his talk: There was at least a one-year incubation period for AIDS. No matter what course the blood industry took that day, it would have no effect for another year, during which still more cases of blood-borne AIDS would incubate and emerge.
It was left to immunologist Thomas Spira, one of the CDC’s top virologists, to make the case for the testing of all blood products, the route that the AIDS Task Force desperately hoped blood bankers would follow. Although no test for AIDS itself yet existed, Spira had spent his past weeks testing the blood of AIDS patients for other markers. The trait that distinguished the blood of AIDS sufferers was not difficult to find, considering that virtually everybody in AIDS risk groups—gay men, intravenous drug users, and hemophiliacs—had also suffered from hepatitis B at some point in their lives. Although the hepatitis virus usually disappeared after recovery, the blood still harbored antibodies to the core of the virus. Thus, Spira had found that 88 percent of the blood from gay AIDS patients contained hepatitis core antibodies, while all the blood from AIDS patients who were intravenous drug users had the antibodies, and 80 percent of people with lymphadenopathy carried the antibodies. The test might not screen out all AIDS carriers, Spira suggested, but it would eliminate enough to sharply reduce the threat of transmitting AIDS through transfusions.
CDC officials hoped the data on the testing for a surrogate marker would point the discussions toward what blood banks and commercial blood-products manufacturers could do about AIDS. Instead, the discussion turned into a heated debate about the reality of transfusion AIDS.
“Don’t overstate the facts,” said Dr. Aaron Kellner, president of the New York Blood Center. “There are at most three cases of AIDS from blood donation and the evidence in two of these cases is very soft. And there are only a handful of cases among hemophiliacs.”
Besides, Kellner said, the proposed testing would cost his center $5 million to implement. False-positive test results would result in the unnecessary disposal of blood that wasn’t infected with AIDS. “We must be careful not to overreact,” he said. “The evidence is tenuous.”
Dr. Joseph Bove, director of the blood bank at Yale University Hospitals and chair of the FDA advisory committee on blood safety, joined in the objections. “We are contemplating all these wide-ranging measures because one baby got AIDS after transfusion from a person who later came down with AIDS and there may be a few other cases.”
Assistant CDC director Jeffrey Koplan was taken aback. “To bury our heads in the sand and say, ‘Let’s wait for more cases’ is not an adequate public health measure,” he argued.
Dr. Bruce Evatt of the CDC tried to reassert the data about hemophiliacs. AIDS simply did not happen among these people before 1982. In only the past year, however, 6 of just 100 hemophiliacs in Ohio were dead of AIDS, and 3 more were suffering from severe blood problems associated with the syndrome. Nearly 10 percent already were sick with something having to do with AIDS, Evatt said. What kind of proof did the blood banks need?
Dr. Selma Dritz from the San Francisco Department of Public Health sympathized with the blood bankers. She knew that vast sums of money were involved with any surrogate testing of blood. She also knew that a more moderate proposal to screen out groups at high risk for AIDS from blood donors would severely hurt urban blood banks that relied on civic-minded homosexuals as an essential part of their donor pool. Still, Dritz had the health of her city to tend to and a board of supervisors to answer to. Like so many health officials, her data was hardly reassuring to the blood bankers. “Of 140 (AIDS patients), 10 or 11 had donated whole blood in the previous few years,” she said. “We don’t know how many others sold their blood or plasma at commercial centers.”
At the very least, all people at high risk for AIDS should be ordered to stop giving blood, Dritz thought. Given the fact that carriers could be perfectly healthy while donating a fatal dose of
blood, as was the case with the San Francisco baby, Dritz felt that all gays should stop donating.
As the blood bankers got back to arguing the specific case histories of CDC’s transfusion AIDS victims, Don Francis started shouting about the “threshold of action.” The evidence that the latency period might be long, much longer than anyone suggested, fueled Francis’s conviction that the job of the CDC was not merely to monitor the spread of AIDS and count its victims, but to control the disease. “We can’t constantly be reacting,” he pleaded, “and be constantly behind the eight ball.”
Everybody could tell now the meeting was going badly, very badly. The blood bankers were worried about money and the costs of drawing new donors; they were also suspicious of all the reporters covering the conference. Was the CDC trying to pressure them into action? FDA representatives were also wary of the CDC and were slightly irritated that the FDA’s turf had been so brazenly invaded by the hotshot epidemiologists from Atlanta. Blood policy was FDA terrain and would stay that way.
Representatives from gay organizations sided with the CDC on surrogate tests of blood but firmly opposed taking any action to screen blood donors, saying the screening would pose serious civil rights questions.
“So-called ‘fast-lane’ gays are causing the problem and they are just a minority of male homosexuals,” offered Dr. Bruce Voeller, representing the National Gay Task Force. “You’ll stigmatize at the time of a major civil rights movement a whole group, only a tiny fraction of whom qualify as the problem we are here to address…. Also, many gays don’t self-identify as such and won’t respond to the questionnaire.”
Representatives from hemophiliac organizations were stunned by the gay perspective. What about a hemophiliac’s right to life? they asked.
After a lunch break, the blood bankers returned even more resolutely opposed to blood testing, arguing almost solely on fiscal grounds. Although largely run by non-profit organizations like the Red Cross, the blood industry represented big money, with annual receipts of a billion dollars. Their business of providing the blood for 3.5 million transfusions a year was threatened. Already the high cost of blood had created new markets for self-donation. Prices had to be competitive, blood bankers knew. The cost of testing for hepatitis antibodies, Kellner from the New York Blood Center suggested, would be $100 million annually for the entire nation. That was simply too much. Instead, he proposed, perhaps, some pilot studies in New York, Los Angeles, and San Francisco.
The for-profit blood-products manufacturers, however, did not enjoy the cartel on their merchandise that the non-profit blood centers held. With the fear of direct competition for their market, the spokesman for Alpha Therapeutic Corporation announced that his firm, which manufactured Factor VIII, would immediately begin screening donors and exclude all people in high-risk groups, including all gays, whether or not they appeared to be “fast-lane.” The position infuriated the gay representatives.
The goal of the meeting was to forward some consensus recommendations to Dr. Edward Brandt, who, as Assistant Secretary for Health of the U.S. Department of Health and Human Services, headed the Public Health Service. At the end of the meeting, CDC’s Jeffrey Koplan, who was chairing it, began proposing consensus recommendations. Bruce Voeller suggested a resolution opposed to deferral of high-risk donors; the proposal was defeated soundly on a voice vote. Other proposals met similar fates or were modified so extensively that they were rendered meaningless. The meeting adjourned with no recommendation or agreed-upon course of action. Things would simply go on as they were, as if nothing was happening.
Don Francis was enraged. The blood banks were going to kill people, he fumed, and the FDA wasn’t going to do a damn thing about it.
Harold Jaffe was not given to such dramatic pronouncements, but he was equally disappointed. He couldn’t believe what he had heard from the blood bankers. They did not want to believe their industry could be involved in something as horrible as AIDS, so they had simply denied the problem existed. To a large extent, the same thing was happening in the gay community, Jaffe knew, but the blood bankers were doctors and scientists of a sort. They were supposed to be rational and most had sworn to uphold the Hippocratic oath.
It had been a year since Bruce Evatt had heard of the first suspected AIDS case in a hemophiliac. He had expected more cases at that time, but the problem was growing much faster than anyone had expected. He had not anticipated that the CDC would be so definitively thwarted in its influence on public policy. The CDC had stood alone and lost. In history, he knew, it would all go down as a stupid mistake, a terribly stupid mistake.
The year 1983 was going to be that kind of time for the AIDS epidemic. There would be denial on all fronts, leading to stupid mistakes that would cost thousands of lives in the short term and tens of thousands in the long term. The lost opportunities of 1982 would be explained later with the chorus: “How were we to know?” This had no meaning in 1983. By then, vast numbers of people knew better, but confronted with knowledge and the chance to do something, they usually did the wrong thing, if they did anything at all. At the time, their postures seemed like the right thing to do in order to preserve civil rights or, say, the economic viability of the blood industry. The problem, of course, was that such considerations constantly overshadowed concerns of medicine and public health.
Two days later, after the fateful meeting in Auditorium A, the American Association of Blood Banks convened a Washington meeting with all the major blood banking organizations, as well as the American Red Cross, the National Gay Task Force, and the National Hemophilia Foundation. Under prodding from gay representatives, the groups issued a joint statement reiterating the blood banking industry’s opposition to donor screening. “Direct or indirect questions about a donor’s sexual preference are inappropriate,” the statement said. Dr. Roger Enlow, a New York City gay physician and a leader of the American Association of Physicians for Human Rights, heralded the policy. “We’ve preserved not just gay rights,” he said, “but the human right to privacy and individual choice.”
January 6
RAYBURN HOUSE OFFICE BUILDING, WASHINGTON, D. C.
Tim Westmoreland returned from Atlanta more convinced than ever that AIDS was the very public health crisis he had feared when he first read of the Reagan administration’s proposed health budget cuts two years ago. He pressed his investigations of CDC and NIH funding harder. The revelations about transfusion AIDS had created an unprecedented level of media attention to the epidemic, finally. How would the NIH respond to questions about its dismal handling of the epidemic, Westmoreland wondered.
The answer was between the lines of a memo from the National Institute for Allergy and Infectious Diseases, or NIAID, that arrived in the health subcommittee’s office that Thursday morning. The memo claimed that NIAID had financed a “large effort” in the past fiscal year, doling out $22 million for the study of immunoregulation, another $2.4 million for immune deficiency conditions, and $1.3 million for research into cytomegalovirus. Altogether, the NIAID position paper concluded, “The level of support of NIAID’s portfolio for studies relevant to patients with AIDS is approximately $26 million.” The phrase “studies relevant to patients with AIDS,” Westmoreland knew, was the operative lie of the document. Buried in another paragraph was the agency’s admission that it was devoting only $750,000 of funds directly to intramural AIDS research. Since a bout with the common cold technically involved the immune system, NIAID simply was claiming that such studies were “relevant to patients with AIDS,” even if the research was only tangentially related to the syndrome.
That week, Bill Kraus talked to Dr. Robert Gordon, one of a long succession of NIH coordinators for AIDS, to ask whether there were any problems with AIDS funding. Congress would be no barrier to getting more money, Kraus said.
No, answered Dr. Gordon, the NIH funding for AIDS was “more than adequate.”
January 7
The Morbidity and Mortality Weekly Report on AIDS among femal
e sexual partners of male AIDS sufferers established what would be the last major risk group for Acquired Immune Deficiency Syndrome. Mary Guinan had been railing about “semen depositors” for more than a year, but the publication of the two case histories of New York women with AIDS finally put a “heterosexual contact” category on the CDC’s official list of AIDS risk groups. One thirty-seven-year-old woman, suffering from Pneumocystis, lived for five years with an intravenous drug user who had died in November, the MMWR reported. A twenty-three-year-old Hispanic female with lymphadenopathy had no risk for AIDS other than living for the past eighteen months with a bisexual who had developed both Kaposi’s sarcoma and Pneumocystis in June 1982. The account also noted that the CDC had received reports of forty-three other previously healthy women who had developed either Pneumocystis or other AIDS-related opportunistic infections, mainly after having sexual relations with intravenous drug users. Although none of the men had contracted AIDS, the CDC concluded, “Conceivably these male drug abusers are carriers of an infectious agent that has not made them ill but caused AIDS in their infected female sexual partners.”
Another summary in that issue of the MMWR also hinted at the shape of things to come, with the first official report on the growing problem of AIDS in prisons. Most of the ten New York state prisoners discussed in the narrative were intravenous drug users, as were all of the New Jersey AIDS prisoners. In fact, prisoners accounted for six of the forty-eight AIDS cases in New Jersey.
Both MMWR reports gave greater weight to the idea that gay cancer wasn’t so gay anymore. Now AIDS became more newsworthy, particularly as the implications of transfusion AIDS sunk in. Because any chance accident might put one in need of a transfusion, just about everybody was now at risk for AIDS, it seemed.