Authors: Randy Shilts
Jean-Claude Chermann, Donna Mildvan, and Michael Lange had traveled to Washington to meet with FDA officials about speeding approval for HPA-23 and other drugs, but the federal agency was in no hurry. AIDS scientists across the country were convinced that the FDA would make AIDS treatments follow the same luxuriously paced experimentation it required of all drugs. The slow early trials were designed to weed out substances that might have harmful side effects, they noted. AIDS doctors argued that this was a prudent course of action for diet pills or drugs to treat hypertension in middle-aged women, but it made little sense when it was plain that whatever the long-term side effects of these treatments might be, they were no more deleterious than the long-term side effect of untreated AIDS.
American officials, however, were suspicious of the rush to Paris for AIDS treatments. Dr. Mason felt that the French wanted to introduce HPA-23 into the United States because they knew that the FDA would require the kinds of controlled studies that were impossible to conduct in France. Only such strictly supervised tests would determine whether HPA-23 actually did any good. Some researchers thought that the only reason the French permitted Americans to participate in HPA-23 trials was because they knew it would increase political pressure on U.S. authorities to allow the drug into their country.
Treatment dilemmas sharply divided physicians. Some believed that every AIDS patient should be afforded some kind of treatment, even if its value was unproved. The
New York Native
even called on gays to stop cooperating with federal epidemiological studies if the government did not place higher priorities on treatment research. “It seems like a fair deal,” the paper editorialized. “We give them epidemiology and they stop dragging their feet on treatment.” However, other doctors hearkened back to the basic tenet of the Oath of Hippocrates: “Primum, non nocare,” or, “First, do no harm.”
Limited studies of an experimental drug on fifteen patients were, in fact, broad enough to determine whether drugs were effective, these doctors argued. It made more sense to try the drugs on limited numbers than distribute them broadly only to find later that many peoples’ lives had been shortened because of previously undetected side effects. There were no easy answers.
L
OURDES
, F
RANCE
Both Bill Kraus and his friend Sharon Johnson, who was nearing the end of her month-long stay with Bill in France, were lapsed Catholics who traveled in circles in which it wasn’t cool to gush about such things as miracles and the Holy Mother of Jesus. That made their first hours in Lourdes uncomfortable, because neither wanted to be the first to admit how awed they were to be there. Both had spent their childhoods in Catholic schools, hearing nuns talk about the Gates of Heaven and the miracles to be found in the grotto where Bernadette saw her vision of the Virgin Mary. Of course they were excited.
When Sharon had suggested the train trip to Lourdes, Bill hadn’t broken character. “What the hell,” he said. “I’ve got nothing to lose.”
Even after he stepped off the train, he still didn’t want to admit that he did have something to lose and that he, like so many others, was there hoping for a miracle.
Bill and Sharon walked past the basilica and through the square lined with souvenir shops and their bottles of holy water from the grotto. It was off-season, so the usual crowds were gone. Bill scanned the people approaching the grotto. He saw Portuguese housewives who had saved for twenty years for this pilgrimage, and he saw a nun kneeling devoutly, holding her motorcycle helmet. As Bill and Sharon approached the grotto, they passed through halls adorned with the crutches of the cripples cured in years past.
“All these crutches look forty years old,” Bill said. “Maybe she stopped curing cripples in 1945.”
Bill fell silent when they got to the grotto where water dripped from the spring. Sharon excused herself to wander the grounds. Alone, Bill sat on a stone bench, staring at the statue of the Virgin Mary in the grotto. The words “Jesus” and “God” crossed his thoughts, and he automatically began to push them out of his mind, as he had for many years. As Bill watched the other pilgrims and contemplated the statue, he realized that he should not dismiss the thought of Jesus, as if he were some nuisance. The essence of the Christ figure was loving and compassionate, no matter how the message of Jesus may have been corrupted by Christianity.
Bill stared toward the Virgin, and he began to see her as the archetypal mother, not the literal mother of God, but the source of all nourishment and hope. He could speak to that mother, and it would mean something. At last, he could pray, and the words would not be empty.
He realized that the bitterness he had held against the church had alienated him from this elemental source of strength. He had been separated from the font of love and forgiveness that Jesus had to offer, and it was not right. God knew that. It all was very clear to Bill now, and for the first time in many years, he prayed.
Sharon Johnson relished the serenity of this special place and walked the grounds for hours before she returned to the grotto and saw Bill sitting in the same spot she had left him. She had never seen Bill’s face so soft. His anxiety had utterly disappeared and in its place was a tranquility she had rarely witnessed.
The pair decided to attend Mass in the nearby basilica. There, however, the spell was broken. The holiness of Lourdes was in the faith of the people, not the rituals of the church.
Night fell as Sharon and Bill left the church and grotto. The winding old streets were dark, and there was nobody to show them the way to their hotel because it was off-season and the shops and restaurants were all closed. It was the enduring image Sharon Johnson kept of that day: the two of them lost, wandering confusing streets in the darkness of Lourdes, trying to find their way home.
March 2, 1985
I
RWIN
M
EMORIAL
B
LOOD
B
ANK
,
S
AN
F
RANCISCO
The future of the AIDS epidemic arrived in a black Chevrolet as night fell in San Francisco. Abbott Laboratories had airfreighted to Irwin Memorial Blood Bank the first AIDS antibody tests to be publicly released anywhere in the United States. The blood bank, after all, had the dubious distinction of dispensing more AIDS-tainted blood than any other blood bank in the country. Ray Price, the Abbott Laboratories district representative, had loaded the six boxes of beige plastic test kits into his Chevrolet Celebrity sedan at the airport for prompt delivery to the blood bank.
Just hours before in Washington, D.C., Secretary Margaret Heckler had announced the licensing of the Abbott test, allowing its distribution to 2,300 blood banks and plasma centers throughout the nation. Four other pharmaceutical companies were vying for licenses for their tests as well, all eager for a share in the $75 million-a-year market created by the need to test all blood and plasma in the United States.
Technically, the test worked like antibody tests already commonly in use for hepatitis and a number of diseases. Little plastic beads were coated with pieces of the AIDS virus. When a drop of blood was added to the small well in which the bead rested, antibodies to the HTLV-III virus would grab onto the pieces of virus. Once washed with various dyes and chemicals, the bead would turn purple if antibodies were present. From now on, the chances of contracting AIDS through a blood transfusion were effectively eliminated or, at last, were truthfully reduced to one in a million. That much was simple, but it was probably the only simple aspect of the enormous implications that the beige plastic test kits held for the future of the AIDS epidemic in general and the gay community in particular.
Although public health groups dropped their objections to the test when it was clear the federal government would pay for alternative test sites, gay groups continued to threaten legal action throughout February. Finally, after delaying the test release, the Food and Drug Administration and the Centers for Disease Control held a joint workshop on February 22. Pharmaceutical companies’ data on the accuracy of their various test kits was normally held to be confidential until the actual licensing of the product, but the firms released their test results to quiet fears that the tests would not work. Indeed, the Abbott test was found to be 95 percent sensitive, meaning it would detect 19 in 20 people infected with the virus, and 99 percent specific, meaning it gave false antibody-positive readings in only 1 case in 100. Such statistics gave the test a reliability far beyond comparable assays used for other diseases and converted doubters to the test’s medical usefulness.
None of this, however, calmed the fears of gay community leaders that the test could turn into a tool of discrimination. At the CDC-FDA meeting, Dr. Stephen King, a state health officer from Florida, noted that he already had been contacted by school districts eager to weed out gay teachers and by country clubs who wanted to use the test to screen food handlers. There were also questions about how the military would use the test, given the armed service’s history of discrimination against gays. The federal government still had not offered any assurance that blood bank screening results could be guaranteed to be confidential.
Just forty-eight hours before Heckler announced the Abbott licensure, the National Gay Task Force and the Lambda Legal Defense and Education Fund filed a petition in federal court to stay the licensing of the antibody test, pending verification of the test’s accuracy and a guarantee that the test labeling would not mark the start of massive HTLV-III screening of gay men.
Secretary Heckler, fighting for her political life within the administration, was eager to release the test and reap the public relations benefits in finally claiming a victory in the battle against AIDS. The pressure was on. Within hours of the suit’s filing, Lambda lawyers and NGTF leaders met with FDA Commissioner Frank Young, who quickly acceded to the gay demand for government-required labeling of the test. Under the agreement, each test was labeled with the warning, “It is inappropriate to use this test as a screen for AIDS or as a screen for members of groups at increased risk for AIDS in the general population.” With the test clearly defined for use in blood banks or laboratories, gays hoped to avert its use as a blood test for homosexuality.
Although that resolved short-term fears, it did not help solve the long-term fallout that gays would face for years. Already, one study of people who had learned their antibody status in the course of research indicated that 14 percent of those who tested positive had contemplated suicide. To test or not to test clearly would become the most important personal decision most gay men would make in their adult lives. To be tested meant learning that you might at any time fall victim to a deadly disease; it was a psychological burden few heterosexuals could imagine. However, not to be tested meant that you might be carrying a lethal virus, which you could give to others; numerous studies indicated that gay men were far less likely to have unsafe sex if they knew they were infected and might infect others. There was also the broader public health question of how you can control a disease if you decline to find out who is infected.
In the months before the test’s release, health officials and AIDS researchers had undergone a dramatic turnaround on their opinions about the test. Given the psychological ramifications of a positive result, they had initially advised gay men not to be tested. Now many were swayed by the feeling that the test could be a valuable tool in controlling the spread of AIDS. In San Francisco, the split in opinion led the AIDS Foundation to decide against coming down on either side of the issue. Instead, the foundation launched an aggressive advertising campaign in gay newspapers, listing the pros and cons of the test. Gay men were urged to study the complex issues and make up their own minds.
Gay leaders in most other cities, however, viewed this neutral posture as outright treason, and the question of testing was quickly cast in exclusively political terms. Confidentiality became the preeminent issue. Suspicion that the test might be required as a condition for getting a job or insurance coverage fueled the fears. When push came to shove, however, the most adamant opponents to testing generally promoted a more apocalyptic scenario, namely that at some point, everyone who tested positive for AIDS antibodies would be locked up somewhere in medical concentration camps.
This apprehension was rarely confided to heterosexual audiences, but it continued to animate homosexual nightmares in early 1985.
New York Native
publisher Charles Ortleb made his newspaper an important supporter of Mayor Koch’s 1985 reelection campaign despite Koch’s sorry record on AIDS, in large part because Ortleb was convinced the feisty mayor would stand up to any federal effort for mass quarantines of AIDS-infected gays. At a San Francisco conference sponsored by the Mobilization Against AIDS in late March, participants passed a resolution calling for armed resistance to any effort to intern antibody-positive gay people.
To most heterosexuals, the rhetoric sounded implausible to the point of absurdity, but most heterosexuals remained uninformed as to the lasting legacy that prejudice imprints on an oppressed people. Humans who have been subjected to a lifetime of irrational bigotry on the part of a mainstream society can be excused for harboring unreasonable fears. The general apathy that the United States had demonstrated toward the AIDS epidemic had only deepened the distrust between gays and heterosexuals. Gays could understandably suspect the intentions of a federal government that had spent the past four years doing as little as possible to thwart the epidemic.
In this poisoned atmosphere, the nuances of long-term consequences for control of the infection fell low on the list of gay concerns. Once again, a key AIDS issue was cast in purely political terms. The politicization of the antibody test issue required new additions to the AIDSpeak lexicon.
To minimize the importance of the medical aspects of the antibody test, it was necessary to diminish the value of the test itself. Thus, the new catchphrase of AIDSpeak became, “The test doesn’t really mean anything.” This thinking stemmed from the belief that only 5 to 10 percent of antibody-positive men would get AIDS. Many researchers suspected that a still-unidentified cofactor might be necessary to transform HTLV-III infection into full-blown AIDS, and the test, they noted, did not reveal the existence of such a cofactor. The test, therefore, detected whether you had antibodies but not whether you’d be one of the unfortunates to get AIDS.
According to this train of thought, the virus recruited its victims like the U.S. Marines—many were selected but few were chosen. Broad acceptance of this doesn’t-mean-anything aphorism reflected the surreality that was part and parcel of AIDSpeak. By most people’s standards, a test that indicates somebody has even a 1-in-10 chance of dying within a few years is a test that means something.
Perhaps the most pernicious addition to the AIDSpeak vocabulary, however, was the term “exposed.” Having HTLV-III antibodies meant you had been “exposed” to the virus, AIDS groups explained; the term soon became beloved by health officers around the country. Dr. Bruce Voeller, a San Diego research microbiologist who once was executive director of the National Gay Task Force, mercilessly derided the euphemism. “If you’ve got antibodies to a virus, you’ve been infected by it—you haven’t been merely exposed,” said Voeller, who favored widespread, voluntary testing in the gay community. “I’ve checked the medical books and I’ve never even seen the word ‘exposed’ mentioned. When people say ‘expose,’ I get the feeling that they think the virus floats around the room, like the scent of gardenias, and somehow they get exposed. That’s not how it works. If you’ve got an antibody, that virus has been in your blood. You’ve been infected.”
New York AIDS activists, still appalled at the anti-bathhouse sentiment in San Francisco, were shocked at the more open attitudes toward testing on the West Coast. Confidentiality had never been the bugaboo in California that it had been in New York, in large part because San Franciscans were less obsessed with protecting the rights of closet cases. The public policy enacted in California and New York concerning the antibody test reflected the dramatically different ways the issue was cast on the two coasts.
In San Francisco, Larry Bush, an aide to Assemblyman Art Agnos, had already spent four months drafting legislation to ensure the confidentiality of antibody test results. By the time the test was licensed, the state assembly had passed bills that forbade the release of antibody test results to anyone, even if ordered by a subpoena. Employers and insurers were banned from requiring the test of applicants. Nobody could be given the test without written consent. Any doctor who gave the test without consent, or who released a person’s antibody status, would be liable for criminal penalties. To allow people to take the test if they wanted it, the state rushed to make available funds for alternative test sites. A bill setting aside $5 million for testing was introduced in February. Given the psychological damage that could follow the disclosure of a person’s antibody status, the law also required follow-up counseling.
To protect the state’s blood supply until these centers were established, the state health director invoked his emergency powers on the day after the test’s licensure to forbid blood banks from disclosing the antibody test results. This policy, which was quickly announced by the Red Cross as well, was designed to keep gay men from going to blood banks to learn their antibody status.
In New York City, gay leaders remained flatly opposed to gay men taking the test for fear of civil liberties violations. Rather than enact laws protecting civil rights, a much more difficult task in New York than California, the strategy was simply to make it impossible for gay men to be tested. Without any public comment, Health Commissioner David Sencer filed a public order declaring that no laboratory in New York City would be permitted to conduct antibody tests except for scientific research. The order did not apply to blood banks.
While the New York City testing ban eliminated the possibility of abuses, it also denied the test to people who might want to take it for a personal reason. A number of gay doctors were stunned. They had looked forward to the test for its possible use on ailing patients who appeared to have bizarre manifestations of ARC. An antibody test would steer them toward immune dysfunctions, while a negative result might guide them toward other non-AIDS diagnoses. There was also the question of women with a history of drug abuse considering having children. A child born to an infected woman would most likely be infected with the AIDS virus and suffer the fate of those lonely infants who were born to die. The value of the test was incalculable in such cases, but doctors were denied its use for their patients because a handful of gay AIDS activists and political leaders had persuaded the health commissioner to ban the test for political reasons.
It was an ironic policy for a group of people who had based their entire AIDS activism, whether on issues of bathhouses or education, on the idea of “informed choice.” Critics noted that gay leaders seemed to favor informed choice when the choices gay people made coincided with what the elite thought proper.
Perhaps the most amazing aspect of Dr. Sencer’s order was that it was completely ignored in the local press. Even while papers ran extensive stories on the future implications of the antibody test, they characteristically ignored its significance for local public policy. For the next six months, the only mainstream newspaper in which Sencer’s unusual policy was reported was, once again, not in New York but in San Francisco.
California’s legislation on antibody testing, meanwhile, soon became the national model. Larry Bush, a gay journalist who was keenly aware of the meaning that testing would have for years to come, circulated the legislation throughout the country in an attempt to get other states to consider similar proposals. In time, Wisconsin and Florida followed suit, but Bush found New York Governor Mario Cuomo uninterested. Ultimately, it was conservative Orrin Hatch, the Mormon senator from Utah, who became the legislation’s chief proponent, handing it around to other legislators as an example of what ought to be done everywhere. Hatch saw the wisdom of testing and realized voluntary testing of gay men wouldn’t work unless they could be assured that it would not destroy their lives. It was this commonsense approach to the legislation that informed Bush again that attentiveness to the AIDS issue was not determined by whether one was liberal or conservative, but by whether one did or didn’t care about the public health.