by Randy Shilts
Such stories helped convince the nurses on the AIDS Ward that the will to live was not fantasy but was probably the single most influential factor in determining how long patients survived. People who decided it was time to die, very often did; the young men who fought the disease, often lived longer. Bruce Schneider talked a lot about fighting in December 1983. Maybe he’d get that silver bullet, or that “reprieve from the governor,” as he called it. Something was bound to come along soon, he figured. He’d read in the paper that the Reagan administration was calling AIDS its number-one health priority. Maybe soon it would all be over, and he’d get back to those carefree picnics in the Marin countryside and long walks in the Redwoods he liked so much.
December 6
CAPITOL, WASHINGTON, D.C.
NEWS RELEASE
HOUSE REPORT DOCUMENTS INADEQUATE RESPONSE TO AIDS
The Department of Health and Human Services has failed to adequately fund Federal efforts to fight the Acquired Immunodeficiency Syndrome (AIDS) epidemic, according to a report prepared by the Intergovernmental Relations and Human Resources Subcommittee chaired by Representative Ted Weiss (D-NY).
…The subcommittee investigation revealed that despite Administration claims that sufficient funds were being spent on AIDS, important surveillance, epidemiological studies, and laboratory research at CDC and NIH were undermined because of inadequate resources.
“Tragically, funding levels for AIDS investigations have been dictated by political considerations rather than by the professional judgments of scientists and public health officials who are waging the battle against the epidemic,” said Weiss. “The inadequacy of funding, coupled with inexcusable delays in research activity, leads me to question the Federal Government’s preparedness for national health emergencies, as well as this Administration’s commitment to an urgent resolution to the AIDS crisis.
The subcommittee’s thirty-six-page report, “The Federal Response to AIDS,” accompanied the shorter press release announcing the subcommittee’s findings. It was never clear how many reporters read anything other than the press release, since few news organizations proved very interested in the story. There was a New York Times story and a shorter wire service piece that included press release quotes and the administration’s ritual denial.
The lack of attention was unfortunate because the report marked the only comprehensive investigation of federal AIDS policy yet undertaken by anybody. The months of poring through CDC files had produced a highly detailed summary of every problem the CDC, NIH, and extramural researchers had faced in their attempts to secure an adequate response to the epidemic. Many of Don Francis’s memos were on the report’s pages, as well as other memoranda written at the ascending levels of the health bureaucracy during the course of the epidemic.
Probably the most startling revelation was the continued absence of any coordinated plan for attacking AIDS, even at this time in late 1983. After months of pressure, the Department of Health and Human Services had submitted a six-page document to the subcommittee in late October. The congressional report, however, had little praise for this effort.
“The so-called ‘operational plan’ is, on its face, a document created for the subcommittee, and serves only to highlight the lack of comprehensive planning and budgeting by the PHS in response to AIDS,” the report said. “It provides no specific information about future research and surveillance plans. It barely mentions, if at all, HHS strategy, timetables, contingency plans, and vehicles for evaluating the Government’s activity. Essentially, the plan submitted by HHS is an abbreviated fact sheet about past activities, rather than a program for dealing with the Nation’s ‘number-one health priority.’”
To prevent similar problems with other health emergencies, the report recommended funding of the Public Health Emergency Fund. The subcommittee also recommended procedures to expedite NIH resources during emergencies. As for the specific problem of AIDS, the subcommittee recommended that the federal government establish an independent commission to both recommend a comprehensive strategy to fight AIDS and suggest resources necessary to carry out the battle.
“The committee believes that PHS researchers and physicians are eminently qualified to plan and conduct the nation’s response to health emergencies, including AIDS,” the report concluded. “At the same time, these scientists are subjected to severe political and fiscal constraints especially in times of shrinking federal budgets for public health programs. Unfortunately, the lives of countless Americans may be jeopardized when the scope of AIDS research and surveillance is dictated by budget considerations rather than the professional judgments of public health and medical experts.”
As was now common in matters of AIDS policy, support and opposition to the unusually hard-hitting report fell along party lines. Ten of the subcommittee’s fourteen Republican members added their dissenting opinion to the report, calling it “misleading” and denouncing the idea of an independent panel to review AIDS strategy as “unnecessary.” The Republican members wrote, “The PHS already has the responsibility and expertise to develop the proposed plan.”
Dr. Edward Brandt accurately noted to reporters that the president had never vetoed congressional efforts to add AIDS funds. “By the time I put a request in and it goes through all the processes, Congress passes the money,” he said. “The administration has never taken the position to fight congressional moves for more money. We have spent all the dollars made available to us.” As for extramural funding delays, Brandt conceded, “I wouldn’t argue that we’re perfect and we haven’t made some mistakes, but our efforts have been comprehensive and responsible.” The criticism of early sluggishness was so much Monday-morning quarterbacking, he said, and was the product of “the 20/20 vision of hindsight.”
In San Francisco, Bill Kraus waited for the shoe to drop. Like other gay congressional aides, Bill was convinced the report would spark tough journalistic investigations of the federal AIDS program. Never had so much information on such a hot topic been so neatly tied together and placed in reporters’ laps than in this report.
Bill waited, and he waited. By the end of December, it was clear that the report would pass with no impact on the federal government.
During the rounds of Christmas parties that year, Bill couldn’t say enough bad things about the television networks and national newsmagazines who were letting the administration off the hook.
“They’re not going to do anything,” he said. “They’re going to let us all die because we’re queers.”
In Atlanta, little in the report surprised anyone. Despite the infusion of supplemental appropriations, the CDC’s AIDS effort remained grossly underfunded. Dr. Walt Dowdle, director of the Center for Infectious Diseases, bluntly told the weekly meeting of AIDS researchers the day after the report’s release that “There’s more needs than funds.”
A week later, Dr. Dowdle asked the new CDC director, Dr. James Mason, for an extra $3 million and, more significantly, forty-six staff positions for AIDS work. By now, Dr. Mason also saw the lack of AIDS resources as a huge problem for the agency. Like Ed Brandt, Mason proved an unusual ally for AIDS researchers. Until recently, he had served as state public health director for Utah. It was his friendship with conservative Utah Senator Orrin Hatch, the chair of the Senate committee in charge of HHS, that had netted him the job as CDC director. Gay leaders at first were suspicious of Mason, noting that he couldn’t bring himself to utter the word “gay” when he met with a gay delegation on his first day on the job. Like Brandt, however, Mason had an ingrained American sensibility about fairness and couldn’t see the sense in letting a horrible epidemic rage through the nation, even if he personally objected to the sexual proclivities of the people it largely struck.
In his own agency, James Mason thought the constant diversion of staff from other essential CDC activities was undermining morale. Still, Mason was in conflict over how to handle the resource problems. Members of Congress called him frequently to ask about AIDS
funding needs, but Mason felt a loyalty to the administration. He sympathized and fundamentally agreed with the president’s philosophy of cutting back domestic spending. Weeks after Walt Dowdle’s request, Mason decided on a move that he considered both fiscally reasonable and morally responsible, and he established a special committee to start an exhaustive internal review of all CDC AIDS activities. He’d use the report as the basis for his future funding requests.
By the time Dr. Mason’s report was written, Bruce Schneider had died at San Francisco General Hospital, hoping until that last day for the reprieve that never came.
NEW YORK CITY
The tragedy of the AIDS-stricken children from Bronx slums was almost numbing now for Dr. Arye Rubinstein and his researchers working at the Albert Einstein College of Medicine. Eighteen months before, he had counted seven AIDS-stricken infants in his practice; a year before, thirteen; by the end of 1983, he was treating twenty-five children. A $27,000 grant from the state allowed him to hire one fellow who became the nucleus for virtually all psychosocial services for AIDS patients in the Bronx slums. Rubinstein could see that soon more children would live in city hospitals, like little Diana, the child who had now spent most of her life in Jacobi Hospital. Her brother, long suffering from AIDS-Related Complex, was near death now from Pneumocystis, and still, there was no imminent help from the city on Rubinstein’s stalled plan to establish a day-care center for the children.
The strategy of both state and city health officials continued to minimize the severity of the AIDS problem, lending credence to their contention that they were doing enough to fight it. Both the state health commissioner, Dr. David Axelrod, and the city health commissioner, Dr. David Sencer, had cheerfully announced that AIDS diagnoses were decreasing in New York in the last months of 1983. The analyses were based on the fact that rather than doubling, as cases had been for two years, the rate of increase had gone down by 30 percent. This did not mean fewer cases; this only meant that instead of doubling in, say six months, the numbers of AIDS cases in New York City would double in nine months. Axelrod attributed the improvement to a “change in life-styles” among gay men. Sencer indicated that the drop-off showed that the health department’s low-key approach to education was working. Dr. Herbert Dicker-man of the New York AIDS Institute, a new state-funded group, compared the number of AIDS cases to estimates that between 3 million and 7 million gay men lived in the United States, and he determined that only 1 in 1,000 had AIDS. “I wouldn’t consider that an epidemic,” he said.
The CDC wasn’t impressed with the complacent outlook of health officials, given the fact that it was common knowledge that Manhattan gay doctors weren’t reporting many of their cases because of the confidentiality dispute with the CDC. Dr. Richard Selik of the AIDS Activities Office responded to the reports of New York AIDS decreases by ordering an investigation on local reporting practices. In the end, it turned out that the rate of AIDS cases wasn’t decreasing in New York but was increasing there as fast as elsewhere in the country. This did not deter the state and city health officials from continuing to announce, at virtually every juncture of the epidemic, that the rate of new AIDS cases was “leveling.”
The only education program in New York City was still that of the Gay Men’s Health Crisis, which had coordinated $3 million worth of volunteer time and services for AIDS in calendar year 1983 on a budget of only $120,000.
In the same week that New York officialdom was seeing a slowdown in the epidemic, San Francisco Mayor Dianne Feinstein approved spending another $1 million for AIDS services, bringing city spending on AIDS services for calendar 1983 to $4 million.
In the last weeks of 1983, newspapers were filled with year-in-review pieces. The Associated Press editors released their annual compilation of the year’s top ten news stories. The terrorist bombing of the Marine headquarters in Beirut, in which 240 servicemen were killed, was voted the top story, followed by the downing of a South Korean airliner by Soviet jets, and the American invasion of Grenada. The year’s top movies were Silkwood and The Big Chill, and nobody could talk enough about Michael Jackson’s Moonwalking and Thriller, his huge comeback album. Although AIDS reporting had been the vogue earlier in the year, attention had now fully waned and nobody included the epidemic as a noteworthy benchmark for the year.
Hidden away on back pages, therefore, was the story from Atlanta, reporting that as of December 19, 1983, the CDC reported 3,000 Americans now stricken with Acquired Immune Deficiency Syndrome; of these, 1,283 were dead. Of all cases, 42 percent were reported in New York City, 12 percent in San Francisco, 8 percent in Los Angeles, and 3 percent in Newark. The only states in which no cases had yet been reported were Alaska, Idaho, Maine, Montana, North Dakota, South Dakota, West Virginia, and Wyoming.
By Christmas, Dr. Robert Gallo had told the director of the National Cancer Institute that he had discovered the retrovirus that caused AIDS.
December 26
MATT KRIEGER’S JOURNAL
This morning my anger ganged up inside me with nowhere to go.
Gary woke up after me, weak and in pain. He walked hunched over from pain in his legs…. I fixed him tea and loaded my red Mexican shopping bag for what seemed like the thousandth time in the past five days with things shuttled between my house and his apartment. I was running a little late already, and Gary asked me to run to the store to get cigarettes for him. That’s when something snapped inside.
Driving to get his cigarettes, I just started screaming aloud: “My whole fucking life runs around Gary. Every goddamn minute. I can’t stand it anymore. I want a lover who can do things with me. I want a lover who is healthy!”
It’s an irrational anger. And I can’t let it out at Gary. He’s doing the best that he can. But it just seems like I don’t have a life of my own. I don’t have a home where I live. I’m in constant flux between his place and mine and constantly at his calling.
I’m scared because I see he’s weaker and far less active than a week ago. Has Christmas tired him out? Is he deteriorating again? Was the recent improvement just getting ready for the holidays?…I’m scared he’ll get sick again. I don’t know that I can go through the long, horrible hours of watching him in pain, seeing him suffer and getting ready to die. I don’t know how I could live today with death and his impending loss again. It’s painful and exhausting for me….
Gary is still very, very sick. He’s weak and dependent. His body is still covered with purple lesions. I forget they’re there, that they’re real, when I hold him at night praying for his health, trying to literally transmit strength from my body to his.
I know I should be thankful for this time, no matter how difficult it is for me. It’s much harder for Gary. If I’m scared, Gary must be terrified.
December 30
CENTERS FOR DISEASE CONTROL, ATLANTA
The question of the length of the AIDS incubation period had troubled Dr. Dale Lawrence ever since July when he had visualized the epidemic as a series of marathons, with thousands racing toward their deaths. The CDC now had documented twenty-one AIDS patients whose disease was linked to blood transfusions, and another ten were under investigation. These cases were unique in that they provided researchers with a specific date on which they could pin the time of infection. In early December, Lawrence took all this data to a statistician. Although these transfusion cases were among people with shorter incubation periods, Lawrence figured that the time between initial infection and the emergence of disease could be plotted on a mathematical curve.
Thus far, estimates of AIDS incubation represented little more than a hodgepodge of guesses. Most scientists used the two-year figure, although some transfusion cases reached back four years. Lawrence thought that a mathematical curve should be able to offer the first scientific assessments of the shortest and longest incubation periods for the disease. The CDC statistician devised seventeen pages of complicated formulae to plot the survival analysis.
On the last working day of 1983, th
e statistician gave Lawrence the results. Lawrence was horrified. According to the analysis, the mean incubation period for the disease was 5.5 years. It appeared that some cases would take more than 11 years to incubate, based on the mathematical projections, although some people would come down with AIDS in as little as six months.
Lawrence rushed from his office in the Division of Host Factors to the AIDS offices. He saw Jim Curran in the hall talking to Harold Jaffe and Bill Darrow.
“The incubation period is along the lines of five years,” said Lawrence.
He explained the curves. Jim Curran grasped his logic immediately.
“It makes sense,” Curran said.
That’s what Lawrence was afraid of. He had believed that tens of thousands would die in the AIDS epidemic. This long incubation period, however, meant that the genetic machinations of the still-unknown virus had permitted it to spread for years before anyone even knew it existed. It just hadn’t shown up yet in a dramatic way because of the long incubation period for AIDS. The 3,000 AIDS cases now reported marked the barest beginning of the havoc the epidemic would bring. The future these projections promised was going to be worse, far worse, than anyone had ever imagined.
PART VII
LIGHTS & TUNNELS 1984
Thus, too, they came to know the incorrigible sorrow of all prisoners and exiles, which is to live in the company of a memory that serves no purpose. Even the past, of which they thought incessantly, had a savor only of regret. For they would have wished to add to it all that they regretted having left undone…. And thus there was always something missing in their lives. Hostile to the past, impatient of the present, and cheated of the future, we were much like those whose men’s justice, or hatred, forces to live behind prison bars.