by Randy Shilts
On September 9, 1983, the first Norwegian to contract AIDS died in Oslo; he was also that country’s first AIDS fatality. The thirty-three-year-old man’s death followed the death of Sweden’s first AIDS victim by three weeks. In Mexico, health authorities were now formally reporting their first AIDS cases. Haitian authorities responded to a year of publicity about the links of AIDS to that impoverished nation by going to the country’s only gay bar in Port-au-Prince and jailing everyone.
Although the intense media coverage of the past six months was fading as summer turned to autumn in the United States, Europeans remained jittery about the new disease. In early September, British health authorities distributed leaflets urging people in high-risk groups to stop donating blood. Evidence linking AIDS to blood transfusions continued to mount. Doctors in Montreal had reported an AIDS case in an infant whose only risk was the bad luck of having a transfusion at birth. The CDC now linked twenty-one U.S. AIDS cases to transfusions. In only one case, however, had a victim’s blood donor actually come down with AIDS, leading CDC officials to agitate for tighter screening of donors, because it was clear that blood donors with no AIDS symptoms could give a lethal dose of AIDS. Blood banks, however, maintained that donor-deferral guidelines were adequate and said any future transfusion-AIDS cases would stem from transfusions given before the guidelines went into effect. Dr. Edward Brandt also assured gay groups that he would not require more stringent donor screening. He met with gay leaders after word leaked out that White House aides had met with leaders of Jerry Falwell’s Moral Majority to discuss legislation banning gays from donating blood. Brandt was said to be furious that the White House would meet not with health officials about such an important health issue but with the Moral Majority.
On September 15, the House Appropriations Committee voted to approve a $41 million AIDS budget for the next fiscal year. The committee issued a report saying it would review the progress of AIDS programs in the coming months and push for supplemental appropriations as necessary. In a pointed directive, the committee noted the absence of any programs of public education and AIDS prevention, and ordered Secretary Margaret Heckler “to mobilize available Public Health Service resources to assist the CDC in implementing a timely and effective public education effort.”
The same day the House committee passed its AIDS appropriations, seven U.S. senators issued a joint statement asking Lowell Weicker, the chair of the appropriations subcommittee that handles HHS funding, for monies to support a Public Health Emergency Fund. The senators had learned that the CDC and NIH had actually requested more than $50 million in funds for AIDS research, about $10 million more than Heckler had announced on the day she said she would give AIDS researchers whatever they felt was necessary to stop the epidemic. Although the Public Health Emergency Fund was authorized by a unanimous vote of Congress in July, no money had been set aside for it. “Without availability of these contingency monies and the coordinated effort the Fund would provide, HHS’s only way to react to public health emergencies is the same way it is proposing to react to the AIDS crisis—by siphoning resources out of other programs to which the same immediacy may not attach, but which are equally important to protecting the health of our Nation’s citizens,” the senators wrote. “Moreover, when these other resources cannot be found and diverted quickly, we experience dangerous delays in our efforts to stop the spread of diseases that can cause widespread suffering and death.”
The statement carried intriguing political significance, coming on the eve of the 1984 presidential election year. It was not lost on pundits that AIDS might play a role in the election, given the fact that the signers included presidential aspirants Alan Cranston, John Glenn, and Edward Kennedy.
September 17
PASTEUR INSTITUTE, PARIS
Dr. Luc Montagnier was exasperated when he returned from the conference of AIDS researchers at the federal research facility at Cold Spring Harbor, Long Island. He had been cautious in his presentation but had delivered the full hand of what nine months of intensive research on the French AIDS virus had unearthed. By now, the French were conducting blood tests on AIDS patients from both Claude-Bernard and Pitie-Salpetriere hospitals, and they were getting results. Although they did not find LAV antibodies in every AIDS patient, they did show higher levels of LAV antibodies than Robert Gallo had reported with HTLV-I. Moreover, Gallo’s results, they felt, were suspicious because he included HTLV antibodies found in the blood of Haitian AIDS patients. HTLV was endemic to the Caribbean and could reasonably be expected among such people even if they did not have AIDS.
A week before the Cold Spring Harbor conference, the Pasteur researchers had passed their first independently administered test. Don Francis from the CDC had sent the group four blood samples drawn from San Francisco gay men who had participated in the hepatitis B study. Two of the samples had been drawn early in the study, probably before the men were exposed to the AIDS virus; the other two samples were drawn from the same two men after they presented AIDS symptoms. Francis asked the French to determine which samples came from which time. In both cases, the Pasteur doctors accurately found no LAV antibodies from the serum that was coded earlier and LAV antibodies in the more recently drawn blood. Francis was clearly impressed, and Montagnier hoped the other Americans would be convinced as well.
Instead, the Cold Spring Harbor conference had become “a festival of HTLV,” Montagnier reported. The scientists could not stop talking about the possibility that Dr. Gallo’s leukemia virus might cause AIDS. Montagnier’s presentation was shunted to the end of the proceedings. Some scientists chuckled aloud when Montagnier insisted LAV bore no relation to HTLV and instead resembled the equine anemia virus. A horse virus, indeed, they thought.
Gallo himself led a grueling interrogation of Montagnier, mocking the supposed link to the equine lentivirus. Behind the scenes, talk spread that the French isolates were contaminated. Any real breakthroughs, the scuttlebutt went, would come from Gallo’s lab.
The news dispirited the other researchers gathered for the regular Saturday meeting in Montagnier’s paneled office at the Pasteur campus. Virtually all the prestigious scientific journals were American, and few seemed interested in publishing French research. Most often, the comment upon rejection was: “We’ll wait and see what Bob Gallo comes up with.” Even in Paris, scientists were split on the significance of the Pasteur studies. Jacques Leibowitch, still hurting over his rejection as a Pasteur job applicant, had become a partisan of Gallo, deprecating the Pasteur doctors as amateurs.
But the Parisian “amateurs” had made dramatic progress in recent months. They now had a blood test, and immunological work by Dr. David Klatzmann denned how the virus attacked the T-helper lymphocytes. Moreover, Willy Rozenbaum’s tests with the antiviral drug HPA-23 showed some results in the pioneering area of AIDS treatments. The delay in accepting French research was not merely another episode of international rivalry, they felt, but a development that would cost science its most crucial weapon in fighting the epidemic: time. And they needed time to start testing anti-viral drugs for treating AIDS, to develop a widely available antibody test, to begin blood testing and serious control measures. With the virus spreading around the world, scientists did not have the luxury of engaging in parochial disputes. The French understood that Gallo and the National Cancer Institute carried more weight in the United States than the Pasteur Institute. They assumed, however, that an entire nation of scientists would not be wed to one notion of such an important disease, particularly when it was as unconvincing as HTLV-I.
Willy Rozenbaum dismissed the problem as “scientific imperialism” from Americans, but Montagnier knew that the rivalry between the NCI and the Pasteur Institute would not easily be resolved. The handful of French researchers, working with a fraction of the budget available to the Americans, would have to push on without much financial support or recognition.
“We are in the tunnel,” he said. “We are in the dark.”
SAN
FRANCISCO
Bob Borchelt spent late September in a state of sustained anxiety over the deteriorating health of his wife, Frances. On September 10, she was readmitted to the hospital and immediately diagnosed with hepatitis. The doctors reluctantly confided she had contracted the disease from her blood transfusion. But Frances seemed far more afflicted than a typical hepatitis sufferer. She had a violent cough, spitting up white gobs of mucus. Nothing tasted right, so she wouldn’t eat. In the course of her seventeen-day hospitalization, she lost twenty pounds. The doctors blamed the weight loss on “anorexia.” At one point during that time, the family doctor told Bob Borchelt that he was worried Frances might die, but, somehow, the feisty grandmother pulled through. Later, Bob and the kids would note ruefully that she would have been far better off to die that September than to suffer what lay ahead.
September 22
MATT KRIEGER’S JOURNAL
Despair is what I hear in Gary’s voice tonight…He has just reason for despair.
He fell down three times today when his legs simply gave out on him. He had an infection in one eye and now the same infection in the other eye.
He went to the dentist for a routine checkup and learned he has an infection and may well need a root canal. And he has a new infection of the prostate for which his doctor told him beating off may alleviate the pressure and pain. Masturbation is a distant memory for him and holds no appeal.
“You may not believe this,” I tell him, “but you’ll get past this depression. You’ve been in this spot before and you will beat it. I wish I could do it for you or make it go away.”
I wonder how he can sustain this relentless series of devastating and painful illnesses. Horribly, I recognize that dark corner in my mind that wishes it were all over and I could talk about Gary and his illnesses in the past tense.
My mind plays that game. Sometimes I think it is all over. Gary is dead. Back in the eighties, I had a best friend and former lover, a wonderful man whom I loved very deeply, and he suffered and he died in that terrible epidemic that hit the gay community nationally, the disease we hardly remember now. It was called AIDS.
37
PUBLIC HEALTH
October 4, 1983
SAN FRANCISCO AIDS FOUNDATION
The ambulance stopped on 10th Street, double-parked, and a young man was quickly bundled onto a gurney. The ambulance driver and a second man carried the stretcher to the second floor offices of the AIDS Foundation and set the stretcher on the floor. A nurse walking with them hurriedly put down a few plastic bags containing all the young man’s possessions. Then, they turned and walked out, leaving the gaunt man lying on the floor.
Confused staffers at the foundation pieced together his story. Since July, Morgan MacDonald had been treated at Shands Hospital in Gainesville, Florida, for severe cryptosporidiosis, stemming from AIDS. When his state Medicaid benefits ran out, Shands, a private hospital, ordered MacDonald to leave by October 7. However, there was no place for the twenty-seven-year-old to go. No nursing home would accept him; and although Florida had the third-highest AIDS caseload in the nation, the state had no public programs of any type for AIDS patients, beyond those provided by volunteer groups in Miami and Key West.
Shands Hospital doctors called San Francisco General Hospital to see whether that facility would accept MacDonald. The hospital said it did not accept acutely ill transfer patients and suggested he stay in Florida. Then the AIDS Foundation started getting calls from Florida, inquiring how a man with AIDS, who wanted to move to San Francisco, could get on the outpatient treatment program.
Early Tuesday morning, Shands Hospital officials loaded MacDonald in a private Learjet air ambulance with a doctor and nurse. Although the plane cost $14,000 to charter, it was a cheaper alternative to the $100,000 in hospital bills an AIDS patient typically accumulated. The hospital also took $300 from money raised in the gay community to help AIDS patients and put it in the stricken man’s pocket for spending money.
Unable to even raise his head, MacDonald was instantly taken from the AIDS Foundation to San Francisco General’s AIDS Ward, where his health immediately turned worse. Dr. Mervyn Silverman, San Francisco Public Health Director, was infuriated and accused Shands of “dumping” the patient when he was gravely ill. The hospital responded that it had sent MacDonald to San Francisco “for humanitarian reasons.” He was ambulatory when he left the Florida facility, the hospital said, suffering only from anorexia because he hadn’t eaten well lately. As for MacDonald’s acute illness within hours of his discharge from Shands, a hospital spokesman offered, “AIDS is a disease where your condition changes.”
San Francisco Mayor Dianne Feinstein immediately denounced the transfer as “outrageous and inhumane” and demanded that the governor of Florida investigate the dumping. Both San Francisco daily newspapers editorialized on the “unconscionable act.” When a state spokesman announced a Florida Health Department investigation into the MacDonald case a few days later, he admitted, “We are having problems in Florida because medical professionals are reluctant to provide care because they know so little about AIDS. We are seeing people take any opportunity within the law to avoid providing care.”
SAN FRANCISCO DEPARTMENT OF PUBLIC HEALTH
Dr. Selma Dritz looked weary as she glanced up from her desk in her crowded office in the health department’s Civic Center headquarters. In the upper right-hand corner of her blackboard, she had listed the latest number of reported AIDS cases in San Francisco—292—with a breakdown separating the numbers of patients suffering from KS, PCP, and other opportunistic infections. Selma Dritz kept the list of all the AIDS sufferers in the San Francisco Bay Area, marking off their names in red ink, one by one, as they died. An epidemiologist from San Francisco General Hospital’s AIDS Clinic recently had used Dritz’s methodical tally to calculate the various survival rates by disease group. Of the men stricken by Pneumocystis carinii pneumonia and other opportunistic infections, none were alive within twenty-one months of diagnosis. All the patients suffering from both Kaposi’s sarcoma and PCP were dead within fifteen months. The best prognosis came for men suffering only from Kaposi’s sarcoma, half of whom remained alive twenty-one months after their date of diagnosis.
In her office, Selma Dritz looked back down at her manila folders. The enthusiasm that had marked her early work in the epidemic had waned.
“During the wars with Napoleon, when Admiral Nelson asked for the numbers of men killed and wounded in a week of action, he said, ‘Let me have the butcher’s bill for the week,’” Dritz sighed to a reporter one day. “As I make out these reports with the new numbers of AIDS cases each week, and as I check them off when they die, I feel like I am writing the butcher’s bill of this epidemic.”
When mild-mannered Bill Cunningham was pulled from retirement and given the task of heading the San Francisco health department’s AIDS Activities Office, he received one piece of advice: “Involve all the different gay groups in your planning or they’ll fight whatever you want to do.” In the first months of his tenure in the politically sensitive post, the former deputy health director walked delicately through the sensibilities and competing agendas of sundry gay factions. He learned not to offend. To accomplish this, Cunningham observed the central ritual of public health policy on AIDS: He held committee meetings. No action was taken until everyone agreed it was appropriate; this was called consensus. For months, that had meant not taking any action at all since nobody could agree on much. This was appropriate, however, given the fact that the rituals of AIDS, whether enacted in Washington or San Francisco, rarely demanded action, just rhetoric.
Cunningham’s problem was that Supervisor Harry Britt, Bill Kraus, and the Harvey Milk Club had been leaning on the health department to issue some kind of coordinated AIDS education plan for San Francisco. Charting such a plan was no easy task. First, Cunningham had to consult the city’s AIDS Coordinating Committee, a nebulous group of gay activists composed of anybody who showed up at mee
tings. That committee next appointed a twenty-five-member subcommittee for AIDS planning, consisting of representatives of every gay political club and all the various organizations petitioning for city funds. Only three members had a professional background in public health education. This subcommittee then broke into more subcommittees and spent three months in meetings.
The result was a lackluster seven-page “plan” that did little more than restate what the city already was doing in AIDS education. Even this plan, issued in late September, was tentative since it would not be adopted until after a month-long “feedback” period. Cunningham himself admitted the plan didn’t present much in the way of innovation, but he maintained that the city needed to follow “the process” so it would not anger gay activists.
After Supervisor Britt read the health department’s long-awaited plan, he fired off a letter to Dr. Mervyn Silverman. “How will the Department assure that those people it contracts with to conduct any further educational activities have the skills and experience necessary to do the job? It appears that a great deal of leadership is still required on your part to see that the education program is carried out as thoroughly and quickly as demanded by this emergency. I do not believe the city can put up with any further delays without an outcry from the community and without assuming responsibility for the lives of thousands of San Franciscans.”
In response to a reporter investigating what the city had to show for its hundreds of thousands spent on AIDS education, Britt bluntly said: “The public health department is treating this like an outbreak of psoriasis, not an epidemic that is killing people.”