Early Indifference to AIDS Is Blamed for Its Spread
In the lab of Jay Levy, the AIDS virus doesn’t seem so formidable.
“Here they are,” the youthful and energetic UC San Francisco medical researcher said, pointing to some innocuous-looking little flasks in a battered incubator in his dingy, crowded laboratory.
“If we had the space and the equipment I could have isolated this virus in ‘82,” said Levy, who was one of the first to accomplish that awesome feat back in 1983. “We had the patients, but we just couldn’t get enough financial support to do the work.
“If we had the virus and test earlier, we could have warned and educated the gay community sooner. We would have cleaned up the blood supply, and saved many hemophiliacs and others.”
It is in Levy’s world--the capital-intensive world of modern biomedical research--that homophobia’s role in shaping America’s response to the AIDS crisis is most clearly visible. Among leading researchers, there is wide agreement that their inability to obtain adequate government funding during the epidemic’s early stages will eventually result in thousands of deaths that could have been prevented. Many attribute that early official indifference to the fact that the first American victims of AIDS were homosexuals.
“We began research in 1981,” Levy recalled, “but were limited by funds. We had absolutely no money, and worked in a room so small that we weren’t allowed to deal with blood because that would violate state health standards.”
One early obstacle was the lack of $1,500 needed to purchase a hood that could vent escaped viruses out of the lab in case of an accident. Levy said he got the money only after “embarrassing the state Legislature” by leaking news reports of the fund shortage.
As late as 1983, it took the direct intervention of California Assembly Speaker Willie Brown to get Levy the $75,000 he needed to get “that little room across the hall, where we could set up the machinery for virus isolation.”
While Levy was slugging it out with bureaucrats and viruses in California, his counterpart in the federal AIDS research program was living a similar tale of woe.
“We were sending screams for help that were not being heard in the executive branch,” said Donald P. Francis, the physician who led the Centers for Disease Control’s pioneering AIDS research, in recalling the first years of the epidemic.
“Because of rising defense expenditures, CDC was being cut,” Francis recalled. “Then, suddenly there comes an outbreak of a new disease among primarily gay men who did not elect this Administration. But an outbreak like this requires money for people, supplies and travel, none of which existed.”
First AIDS Cases
In June of 1981, “Dr. Mike Gottlieb, from Los Angeles, called the CDC to report the first AIDS cases,” Francis said. “It wasn’t until July of 1983 that Reagan finally signed a bill for money. Those two years in between were the most difficult period.”
Those were the years when governmental and medical bureaucracies comforted themselves with the illusion that AIDS was an illness peculiar to homosexuals. Francis, along with Harvard’s Myron E. Essex and James W. Curran of the CDC, wrote the first article suggesting that a transmissible agent was behind the emerging epidemic. But, at the time, no one listened; it was less threatening to think of AIDS as an exclusively gay disease.
Lack of funds made it difficult for doctors at the CDC to take even the most obvious steps in controlling this emerging epidemic. The CDC was command central in the battle, but its generals had to beg and steal horses--or, to be more precise, plane tickets.
In May of 1982, Francis, Curran, and two other top CDC officials planned a trip to New York City to coordinate their activities with research being done at the Memorial Sloan-Kettering Cancer Center. They also needed to arrange for the delivery of specimens from AIDS patients at that institute.
“We had to fight for the money to get four tickets from Atlanta to New York City to arrange for specimens so we could look for the cause of AIDS,” Francis, who is now on loan from the CDC to the California State Department of Health, recalls. “And that shows how strapped for funds we were.
“When I first went to Atlanta I wanted a new book on retroviruses, a two-volume book at $50 a volume. I was told by the CDC administrative office that we couldn’t spend that money.”
Like Levy in San Francisco, the CDC researchers had to jury-rig their most crucial piece of laboratory equipment, an incubator in which to grow the virus. Lacking the $5,000 to buy a modern incubator, Francis’ team had to make do with leftovers from the 1940s.
“They were those old copper things you see in movies,” Francis said. “I wish I had them for planters, but to use them for our purposes we had to drill a hole in the side for the carbon dioxide and constantly monitor it to turn the valve by hand to adjust the flow. It was very difficult to keep the measurements precise.”
CDC’s research team ran into similar problems when it needed to purchase equipment required for experimental inoculation of animals with the AIDS virus. “It took six months to get the necessary $15,000 for isolators and protective clothing to do it right,” Francis said.
At that point, the government’s “cheapness” led him into a critical mistake. Francis used marmosets instead of chimpanzees as subjects for the inoculations because the former cost a couple of hundred dollars apiece and chimpanzees are $15,000 each. The chimps, as he suspected, were susceptible to the human AIDS virus and the marmosets were not. As a result, “valuable time was lost in order to save money.”
These difficulties were being experienced not on the dubious scientific fringes of the medical research world but at the very heart of the government’s effort to stop this epidemic during its critical takeoff years.
“There was no high-level government interest until early 1983 when it was established that AIDS could be transmitted though ordinary blood transfusions, putting everyone at risk,” Francis remembered. That was the magic moment in the epidemic’s history because plenty of heterosexuals--President Reagan included--had received possibly contaminated blood transfusions.
Suddenly, government money began to flow.
“No money came,” Francis said, “until Reagan signed off on it in July, 1983. Before then we put the program together by stealing from other programs. We slapped the AIDS research program together using bubble gum and baling wire. If anytime during this epidemic there had been a Manhattan Project-type approach, we would have gone like crazy. Instead we spent all of our time in constant turmoil revising budgets.
“Could we have found the cause earlier? Certainly. And once we had, we could have moved in a more systematic way to prevention.”
Francis’ complaints are not simply a matter of hindsight, since he produced numerous memos urging greater funding early on. In one such document, written on April 12, 1983, to his then-superior at CDC, Walter Dowdle, Francis complained that “our government’s response to this disaster has been far too little.”
“The inadequate funding to date has seriously restricted our work and has presumably deepened the invasion of this disease into the American population. . . . The time wasted pursuing money from Washington has cast an air of despair over AIDS workers throughout the country. Possibly worse, it has sandwiched those responsible for research and control between a massive pressure to do what is right and an unmovable wall of inadequate resources. Our past and present efforts have been and are far too small and we can’t be proud. It is time to do more. It is time to do what is right.”
Dowdle, who currently coordinates the AIDS program for the CDC, admitted that the Administration paid little attention to the emerging epidemic, but blamed it on apathy among the general public.
“The problem is in the later part of ’81 and into ’82 we couldn’t get anybody interested in this disease,” Dowdle said. “It was practically impossible to get the press interested in this disease. The medical community felt like it wasn’t a real disease. There’s a certain amount of conservatism in science and medicine, people are not just willing to jump, particularly when it might be drug associated or related to a certain life style.”
This last response suggests what Jeffrey Levi, a Washington lobbyist for grass-roots AIDS organizations, refers to as an “institutional homophobia.”
Dowdle agreed and added that most people “felt that since this was a disease being reported primarily among gay groups, ‘it is not my problem.’ ”
Anthony S. Fauci, who is in charge of AIDS research for the National Institutes of Health, accepts that “homophobia was a factor” in Washington’s response to the epidemic “insofar as it was, unfortunately, present in the general population. The disease didn’t at first get the attention it deserved to have gotten.”
A report by the congressional Office of Technology Assessment, perhaps the most exhaustive history of the AIDS epidemic thus far, was far more critical of the Reagan Administration’s early role. “The Administration did not acknowledge the need for funds specifically for AIDS until May, 1983,” according to the 1985 OTA report.
Despite a lack of Administration interest, Congress did manage to allocate relatively small amounts to the Centers for Disease Control for AIDS research in 1982 and 1983, according to the OTA, “based on material prepared by CDC but not officially presented to Congress” by the Administration. Meaning that the CDC needed the money, sent a request up though its parent Public Health Service bureaucracy and then leaked the request to sympathetic members of Congress.
‘A Disposable Group’
The main congressional sympathizer has been Rep. Henry A. Waxman (D-Los Angeles), who is chairman of the House subcommittee on health and the environment. He argues that a major reason for governmental inactivity is that Administration officials “didn’t care much about gay men, a disposable group in the society as far as they are concerned.”
Despite Administration resistance, Congress has steadily increased AIDS funding and $350 million was appropriated for fiscal year 1987.
Fauci believes that there is now ample money for biomedical research and that it is being spent wisely. “Right now money isn’t a restraint but we need more breakthroughs in treatment and education, which is of great importance in preventing further spread of the disease.”
He notes that the public apparently has greater faith in the ability of scientists to come up with a vaccine and a “magic bullet” cure for AIDS than do the scientists working on the problem.
If a vaccine can be developed, and that is by no means a certainty, Fauci picks 1988 as the earliest date to test it. Because of the disease’s long incubation period, such tests would, in his estimation, go on for seven to 10 years to determine if the vaccine works and is safe to use on a healthy population.
Nor does Fauci expect early development of miracle cures for those already afflicted with the illness. “I don’t think there’s going to be a magic bullet just because of the way this virus acts and its effects on the immune system,” he said. “The AIDS virus can lay dormant within the cells that it is attacking. Even a drug that could zap the virus when it is active would miss them in the dormant stage.
“The best that we are hoping for is having a drug that can suppress the active replication of the virus and at the same time we can try to reconstitute the immune system, which is a complicated, delicate business probably involving bone marrow transplants.” A cure, Fauci said, “would not just involve taking a pill.”
“The vaccine of today is education,” Fauci said. And, like most of his colleagues, he agreed it is far easier for the federal government to spend money for biomedical research than on more controversial sex education programs.
“The good news is spermicide kills the AIDS virus within 60 seconds and it can’t penetrate a condom,” said UC San Francisco’s Levy with more than a touch of black humor. “The bad news is we can’t get government money to educate people to use the condoms.”
In fact, government at all levels is currently spending next to nothing on AIDS educational programs aimed at the general public. Most education has occurred in the homosexual community, where it has been run primarily by grass-roots organizations.
Studies conducted on the effectiveness of those campaigns are very encouraging, with signs that significant modification of sexual behavior has occurred as a result. Education programs aimed at drug users have been less successful; those for the general population are virtually non-existent.
“I think it’s outrageous that we are still not engaging in any really meaningful public education campaign,” Waxman said. “We are not telling the American people how this disease is spread and what changes they must make in their life styles to avoid it. It’s a mystery to me why our government is not doing this. Perhaps when it comes to the gay community they don’t want to talk about safe sex because they believe it may encourage homosexual activities; in the case of drug abusers they can’t quite bring themselves to say ‘don’t share needles.’ The heterosexual community hasn’t awakened to the problem.”
One of those who agrees with Waxman is Sherman Oaks physician Joel D. Weisman, who diagnosed two of the first four recognized cases of AIDS in 1981. “Government on all levels was slow to act because the high-risk group was gay. If this had been legionnaire’s disease, the response would have been faster.”
AIDS Project Los Angeles’ director, Paula Van Ness, concurs. “Up until the last year there was almost no money for direct social services to AIDS patients,” she said. “Our first social worker was not funded by government but by the Episcopal church. Until March of 1986 none of our social service programs were subsidized by government. The funding all came out of the pocket of people in the community who cared.
“There hasn’t been funding to provide mental health care services to people with AIDS and their families. We have people who are suicidal, who are alone and scared, whose families have shunned them, whose employers pushed them out of their jobs, whose friends don’t call and who are facing a terminal illness without any government help.
“The President likes to talk about the public and private sectors’ working in partnership, but damn it, the public part has been missing. And it’s missing because this disease affected mostly gays.”
The discussion among those fighting the AIDS epidemic seems to inevitably return to the point of homophobia. Insofar as the disease affects primarily an estranged minority of Americans, it is difficult to mount a national campaign against it. So far, the proportion of non-intravenous-drug-using heterosexual AIDS victims in this country thought to have contracted the disease through sexual contact has risen from 1% in 1983 to 2% this year. The consensus seems to be that government inertia gives way to action only when the disease threatens to spill over into the mainstream heterosexual population.
“Until people recognize that AIDS is also a heterosexual problem, it’s difficult to generate the same amount of concern as there was for, say, legionnaire’s disease,” said Dowdle of the CDC.
“There are many people in government circles who have grandchildren or other relatives who have gotten involved with drugs, so that explains the national campaign on that as opposed to AIDS,” he added. “They are in the right social strata to be hit hard by cocaine, but they don’t know people affected by AIDS.”
Not yet.
Times researcher Nina Green contributed to this story.
