Research Task : AIDS Funds: Tardy but Catching Up
When Dr. Michael Gottlieb was summoned in 1981 to examine the baffling cases of four young homosexual men with damaged immune systems who were dying from multiple rare infections, he quickly realized that he had encountered a virulent disease he would not find in any medical textbook.
What the UCLA immunologist did not know then, however, was that his observations also would dramatically change the course of his career and the careers of hundreds of other leading researchers around the nation and world.
Gottlieb also had no way of knowing at the time that he was about to become a pioneer in a new research field that would involve hundreds of millions of dollars in public and private funds in a fight against what he later described as “the epidemic of the century.”
Searching for Breakthrough
Today, Gottlieb and other scientists are devoting virtually all of their time to the fatal and perplexing disease AIDS, or acquired immune deficiency syndrome.
They are treating thousands of AIDS patients for the opportunistic infections that ravage their bodies time and again, eventually killing them. They are testing new drugs and other therapies, searching for a breakthrough cure for those already afflicted. And they are studying the virus that causes AIDS, known as HTLV-III, trying to develop a safe and effective vaccine to protect the healthy.
The work of stopping a deadly epidemic takes money--substantial amounts of money. And with that need has come controversy over the effectiveness of Washington’s response to the problem.
Charge of ‘Stupidity’
One private fund-raiser for AIDS has attributed delays in federal funding to “a combination of homophobia, stupidity and lack of imagination” on the part of Reagan Administration officials, particularly President Reagan’s budget watchdogs.
Most experts may not share that strong sentiment. Nevertheless it was such a perception that prompted such states as New York and California to step in and, in an unusual action, provide state and local financing for AIDS research.
Private funds now also are being generated to help fill the gap. In recent months, the AIDS Medical Foundation in New York and the American Foundation for AIDS Research in Los Angeles, two private organizations that are merging, have begun fund-raising efforts by enlisting such entertainment figures as Elizabeth Taylor and Carol Burnett.
Still, many researchers have complained that until recently the money has been insufficient--and much too slow in coming.
“The response has been tardy,” said Gottlieb, the first to identify AIDS and report its existence to the federal Centers for Disease Control.
“It is better than it was, but we’re still struggling,” he said recently. “Society has been preoccupied with 20th-Century health technology--like the artificial heart--and wasn’t prepared to deal with an acute communicable disease, which is perceived as a health problem of the past. As a result, we invested in it belatedly.”
At the same time, other scientists worry that important research in other fields is being neglected as a result of the new-found interest in AIDS.
For instance, scientists are increasingly concerned that a known cancer virus that causes a rare form of adult leukemia may be infiltrating the nation’s blood supply--a prospect that in other times might well have drawn great attention.
Federal personnel who might be assigned to work on the problem are instead devoting their time to AIDS, however. The problem is aggravated by a hiring freeze in their agencies. And even non-government research centers are facing shortages of personnel in areas abandoned by researchers who are concentrating on AIDS.
AIDS destroys the body’s immune system, leaving it powerless against otherwise rare infections. The disease is transmitted through sexual contact--with the exchange of such bodily fluids as semen and blood--and through the sharing of unsterilized hypodermic needles. It has also been spread through transfusions of contaminated blood or blood products, although a blood screening procedure begun last year has made that risk slight.
‘Vital Contribution’
Those at highest risk include male homosexuals and bisexuals, intravenous drug users and their steady sexual partners. As of Monday, there were 15,053 reported cases of AIDS, including 7,721 deaths.
Reagan, asked about federal AIDS funding at a televised news conference in October, called the $126 million then budgeted for fiscal 1986 “a vital contribution.” Since then, however, top Public Health Service officials have asked for $70 million more, and lawmakers on Capitol Hill have shown their willingness to give them that--and more.
Congress is considering an appropriation of more than $200 million for fiscal 1986, won largely through the efforts of Sens. Alan Cranston (D-Calif.) and Lowell P. Weicker Jr. (R-Conn.) and Rep. Henry A. Waxman (D-Los Angeles). Federal money for all AIDS activities, including public education campaigns as well as research, has grown from $5.5 million in fiscal 1982, shortly after the disease was recognized, to $109 million in fiscal 1985, which ended Sept. 30.
“The Public Health Service jumped on this immediately,” said one leading government AIDS researcher who described Washington’s response as “excellent.”
The flexibility of government researchers to request--and receive--additional money as new medical advances and scientific knowledge emerge is more important than access to unlimited funds, he said.
“We couldn’t have spent $126 million in 1981 because we didn’t know what we needed to do then,” he said. “We couldn’t spend a billion dollars today because there aren’t enough leads on which to spend it.” He added, “whatever we’ve asked for, we’ve gotten.”
Others disagree, saying the federal response to AIDS has been sluggish and indifferent. Still, they draw a distinction between Public Health Service officials and Reagan’s budget planners.
“The Public Health Service is filled with unsung heroes--scientists who’ve worked overtime in understaffed labs on under-funded projects,” said Waxman, chairman of the House Energy and Commerce subcommittee on health.
“But the budget makers for the Reagan Administration have stalled and quibbled and rejected their own scientists’ advice. Trying to scrimp on millions of dollars, they have cost the country billions,” he said.
Internal government memos written since 1981 are riddled with the comments of frustrated government AIDS researchers pleading for more money and asking for an end to the hiring freeze in their agencies. And top government AIDS researchers, speaking privately, have expressed similar complaints.
‘Sure, We’re Unhappy’
“We need the goddamn freeze to end,” said one, who asked to remain anonymous. “We can get all the money in the world, but if we can’t use it, what good is it? Sure, we’re unhappy.”
Furthermore, the Office of Technology Assessment, an independent analytical arm of Congress, reported in a study released in February that the Department of Health and Human Services continually hampered AIDS research efforts during the early years of the epidemic by siphoning funds from its other public health activities instead of drawing upon a $30-million health emergency fund created by Congress in 1983.
“What they did was very late and not enough,” said Mathilde Krim, a biologist who chairs the AIDS Medical Foundation. “By 1983, it was clear we were dealing with a major problem.” It was she who attributed the delay to “a combination of homophobia, stupidity and lack of imagination.”
Researchers say a successful AIDS treatment must both prevent the virus from reproducing in human cells and restore the impaired immune system. At least six anti-viral drugs and five “immune modulators” are being studied in the United States.
Among the new AIDS activities planned for fiscal 1986 are a series of programs proposed by the National Institutes of Health that include nearly $20 million for accelerated research into antiviral agents.
According to an institutes memorandum prepared in September for the Department of Health and Human Services, $10 million will be spent to create five AIDS units to test AIDS antiviral drugs, immune modulators and new methods to treat opportunistic infections and tumors. The institutes have also proposed that five more units be established in 1987.
Also, the proposal said, the National Cancer Institute and the National Institute of Allergy and Infectious Diseases have earmarked $5.5 million to establish several “national drug discovery groups,” a cooperative effort of investigators from academic groups, nonprofit research institutions and industry, with government scientists as participating members.
The “urgency of the AIDS problem,” the memo said, requires “that the talents of the most creative and dedicated scientists be enlisted in concert.”
The memo also said more money should be used to speed promising drugs into experimental use on humans. Promising compounds, it said, should be made available quickly, because “this disease is rapidly fatal.”
Dr. Martin Hirsch, a viral researcher and associate professor of medicine at Harvard, is among those who believe that the additional funds to develop antiviral agents are long overdue.
“I’ve been on my soapbox for the last few months pushing for multicenter trials,” he said. “It wasn’t just a question of money. I thought NIH needed more organization and leadership. But since then, they have shown some very positive steps in that direction. Now they have their act together and are planning to do it, but these kinds of trials should have been under way by now.”
‘We Need More Money’
Dr. Paul Volberding, director of the AIDS clinic at San Francisco General Hospital, has directed several clinical trials, the most recent study involving the use of suramin, an antiviral drug. Suramin is now being tested in six medical centers under the sponsorship of the National Cancer Institute.
“Our major source of funding has been the city,” Volberding said. “The city doesn’t get into the business of sponsoring basic research, but it has supported our clinic, and that’s where we are doing our research. San Francisco, however, has served notice that its budget surplus no longer exists, so we will need to turn increasingly to the federal government and the state. We need more money. There’s no question.”
Volberding is optimistic that the funds will be forthcoming.
“I think there is an attitude now that this is a national problem that warrants a national response,” he said. “I see ongoing funding. But there has to be planning along with it. There wasn’t an obvious plan until recently. Now there seems to be a commitment.”
It was before such commitment from Washington had become clear that some state legislatures got involved. California and New York, with the highest numbers of AIDS cases in the country, both voted money for basic AIDS research. States traditionally have not funded basic scientific research.
The California Legislature recently earmarked $7.3 million for the University of California system, and New York--which has set up its own AIDS Institute--has appropriated $8 million.
“We got into research because the federal government, which should have been doing it, was not,” said Mel Rosen, director of the AIDS Institute, a division of New York’s public health service agency. “We got into research initially because the feds weren’t moving--but now the feds are moving.”
Yet many involved in the AIDS battle say that gaps remain to be filled and that among them are the need for more money to finance research for a protective vaccine against the virus. “The money is going almost entirely to drugs,” said Dr. Robert Gallo, the National Cancer Institute researcher who isolated the AIDS virus.
“The idea is that we will talk about a vaccine someday,” he said. “I think that is a mistake. I think what we need now is a very healthy support for basic science.”
Other researchers have suggested, for example, that incentives be established to encourage drug companies to invest in AIDS research. Also, they said, money should be spent by states and others to buy “protected time” for young researchers who have not yet established themselves but who would like to devote their careers to AIDS research.
“Young investigators don’t have the experience to generate research dollars,” said Dr. Merle Sande, chief of medicine at San Francisco General Hospital. He has urged the California Legislature to create what he calls “career development” programs. “They need time that is paid for--protected time.”
Scientists also have urged that the federal grant process be accelerated, especially during such a public health emergency as AIDS generates. It routinely takes at least a year and usually longer to receive a government grant.
‘Work to Be Done’
“We’re not talking about impatience,” Gottlieb said. “There’s work to be done. They make investigators go through so much to get their funding. That’s the way it should be--under ordinary circumstances. But AIDS is an exception. AIDS is not business as usual.”
Congress, in fact, included a series of measures in the recent NIH reauthorization bill that would shorten the grant process by an estimated three to six months. The bill was vetoed by Reagan, who said it was “overloaded with objectionable provisions that seriously undermine and threaten the ability of NIH to manage itself,” in early November. Both the House and Senate have voted to override the veto.
The private American Foundation for AIDS Research hopes to dispatch at least some private money to researchers more quickly than government money can be provided. Foundation officials say they are trying to raise at least $1 million by January and will begin accepting grant proposals then. A scientific advisory committee composed of prominent federal and private AIDS scientists and others will decide who gets the funds.
“Hopefully, we can get them started within two months, where it would take 12 months with the government,” said William J. Misenhimer, executive director of the foundation.
The AIDS Medical Foundation in New York, about to merge with the American Foundation for AIDS Research, has already begun dispersing funds. It recently awarded $150,000 to St. Lukes-Roosevelt Hospital Center in New York to expand research facilities to study the HTLV-III virus.
Beyond Gay Community
Many gay businesses also are stepping up efforts to raise money for AIDS research. Some bars, for instance, have donated 50 cents per drink sold on certain nights toward that end. A Pittsburgh restaurant recently raised $800 at a sit-down dinner.
Concern about AIDS--and financing for AIDS research--goes well beyond the gay community, however. A national poll in September showed that Americans consider AIDS to be almost as great a health threat as cancer. And seven in 10 respondents in the ABC News/Washington Post poll said they would be willing to pay higher taxes if the money were used to seek a cure.
Many entertainment figures have given their names, as well as their dollars, to the private effort.
Elizabeth Taylor is national chairwoman of the American Foundation for AIDS Research, which recently sent solicitation letters under her name to the many people who wrote to the late actor Rock Hudson during his highly publicized fight against AIDS.
Actor Aidan Quinn, who portrayed an AIDS victim in a recent NBC-TV drama, “An Early Frost,” donated part of his earnings to the Gay Men’s Health Crisis in New York and the Shanti Project in Los Angeles, two AIDS service and education groups.
In early November, an all-star gala in New York’s Metropolitan Opera House raised $1.3 million to benefit AIDS research and care. A similar benefit concert is scheduled in Los Angeles in the spring.
New Song, Video
Also, proceeds from a newly recorded song and video, “That’s What Friends Are For,” written by Carole Bayer Sager and Burt Bacharach and performed by Dionne Warwick, Stevie Wonder, Elton John and Gladys Knight, will be given to the American Foundation for AIDS Research, according to Gottlieb, co-chairman of its board of directors.
And in early November, public service AIDS announcements featuring entertainer Carol Burnett began airing on the East Coast.
“Many people say stopping AIDS is hopeless,” she says in one spot. “I don’t believe them. American scientists conquered polio and smallpox. With your help, we can end this crisis too.”
AIDS RESEARCH MONEY
Raising money for the fight against AIDS started slow, but is spiraling. Money is now coming from public and private sources. These are Public Health Service allocations, in thousands of dollars, by year:
AIDS CASES
Year Cases Deaths 1979 11 9 1980 47 42 1981 260 220 1982 991 738 1983 2,713 1,951 1984 5,305 3,001 1985 5,404 1,580
Source: Centers for Disease Control
