COLUMN ONE : AIDS--a Funding Backlash : There appears to be a growing resentment over the preferred status given the disease. Congress may be reluctant to maintain that special treatment.

Jean McGuire, an accomplished AIDS policy lobbyist, is accustomed to a Congress that has been extraordinarily willing in recent years to approve dramatic increases in AIDS spending.

So she was more than a little startled during a recent Capitol Hill visit to hear the following comment from a key Senate appropriations official:

“You know,” said the aide, who works for the labor-health and human services subcommittee, chaired by Sen. Tom Harkin (D-Iowa), “there are many times more people in Iowa who are living with Alzheimer’s than are living with AIDS.”

To McGuire, who had gone to plead the case for funding the “disaster relief” bill, a measure that would provide money to the hardest-hit cities to help care for AIDS patients, the message was shockingly clear:

When critical money decisions are made later this year--in an era of no-growth federal spending--members of the panel may be reluctant for the first time in recent history to afford special treatment to AIDS over other diseases.

There appears to be a growing resentment over the status given AIDS over numerous other diseases which, the advocates for those illnesses argue, strike and kill many more people every year than AIDS.

“We’re starting to hear that now wherever we go: ‘OK, you guys have got your growth--now it’s somebody’s else’s turn,’ ” says Jeff Levi, a Washington-based consultant on AIDS issues. “There is the misconception that the acceleration in AIDS funding has occurred at the expense of other diseases.”

To be sure, a range of groups from the radical ACT UP (AIDS Coalition to Unleash Power) to the prestigious Institute of Medicine believes that AIDS funding has been inadequate to meet the needs of the burgeoning epidemic. Thousands of activists recently demonstrated outside the sprawling National Institutes of Health (NIH) in Bethesda, Md., demanding more money for AIDS research, and numerous reports by respected think tanks have urged that AIDS funding be increased far above the current levels.

Nevertheless, recognizing the special urgency of the AIDS epidemic, Congress specifically earmarked research dollars for AIDS through much of the decade until 1989--which it did not do for any other disease--and awarded much more AIDS money in every budget than was requested by either the Ronald Reagan or Bush Administrations. But starting with the current fiscal year, which began last fall, research monies have no longer been directed specifically at AIDS, but have been included in the overall budgets of each federal research institute to parcel out as it wishes.

“AIDS patients have accomplished so much through civil disobedience, and we know of many organizations that work for diseases that are just as deadly and just as horrible,” said Abbey Meyers, executive director of the National Organization for Rare Disorders. “They are saying: ‘Maybe we should go down to Washington and block traffic.’ ”

Stephen McConnell, vice president for public policy for the Alzheimer’s Disease Assn., agrees.

“When they were out there demonstrating, I thought: ‘What can we learn from that?’ ” he said. “I have read up on the AIDS lobby to see what we can do.”

Non-AIDS lobbyists are not the only ones who are disgruntled. There is also a considerable degree of unhappiness from laboratory researchers in other fields who are frustrated because it has become more difficult to get funding grants. One major reason is that there is less money available overall for new grants. But there is no question that there has been an emphasis on grant money for AIDS research.

“There is the idea that if you do AIDS research, it’s easy to get funded,” said one specialist in infectious diseases who often reviews grant proposals for the National Institutes of Health and who requested anonymity.

“In general, it’s very tough to get funded,” he continued. “So now I’m seeing researchers who are trying to make their work AIDS-related. I read many grant proposals in which the principle investigator--who has never done any AIDS work--is trying to slant what he has been doing for 10 or 20 years to make it sound like it has something to do with AIDS. But when you read the grant, it’s clear that the relationship is a funding ploy.”

Dr. Anthony Fauci, director of AIDS activities for the NIH and director of the National Institute of Allergy and Infectious Diseases, acknowledges that “there are people who feel that the amount of support AIDS is getting is taking away the support they could be getting--but it’s not as bad as they think. Non-AIDS is not suffering.”

Others would not necessarily agree with that assessment. McConnell of the Alzheimer’s Disease Assn., for example, says that when he lobbies, he never suggests that AIDS spending be reduced. But he does make a point of asking lawmakers to compare AIDS funding levels to those for other diseases that are more widespread than AIDS--such as cancer, heart disease and Alzheimer’s.

“There are now 4 million people affected by Alzheimer’s in this country at a cost of caring for them estimated at $80 to $90 billion a year,” he said. “We’ve never said bring theirs down--we’ve only said bring ours up to a comparable level. “

The total fiscal 1991 budget for Alzheimer’s is $153 million, according to McConnell. The Bush Administration’s budget for AIDS for fiscal 1991 is $1.7 billion.

Health and Human Services Secretary Louis W. Sullivan acknowledges that he has experienced pressure over AIDS funding from other groups, most often those lobbying for cancer research. He says he tells them that “we have an opportunity now . . . if we can find better ways to treat the (AIDS) virus or to prevent its spread.”

AIDS, as compared to cancer, for example, “represents a spreading infection . . . a disease that is going to continue to escalate significantly in our society,” he says. “And we’re making progress. We’re not simply throwing money blindly at the AIDS problem, we really do have a number of promising leads for better therapies or better ways of preventing it. Therefore, that kind of investment is worth it.”

Further, those who support increased AIDS funding insist that AIDS research has contributed to all fields of biomedicine. They point to a recent survey conducted among scientists by the Congressional Office of Technology Assessment that concluded that numerous areas of medicine--including infectious diseases, cancer, neurology, hematology, pulmonary medicine and immunology--have all benefited from AIDS research.

Moreover, the report said, AIDS research has also contributed to advances in drug and vaccine development, epidemic-modeling techniques, and health care delivery systems.

“There are many positive spinoffs from AIDS work,” Fauci said.

Lobbyist McGuire, who is known in Washington as a skillful coalition builder, understands that AIDS organizations need the support of other health groups to use their combined clout to achieve legislation and other priorities. She and others organized such a union to achieve passage of several measures, including the disaster relief bill passed by the House last week, which would provide money for AIDS counseling and treatments, and the Americans With Disabilities Act, which would forbid discrimination in the private sector against those with disabilities, including AIDS and AIDS infection. With the latter bill, for example, AIDS groups joined forces with disability rights groups and made a powerful impact.

During the budget process, McGuire said, a coalition of health groups lobbied for an overall health dollar figure. But, she said, when it came to money for their own special interests, “We knew we would have to carry our own line.”

There are some signs on Capitol Hill that the growing tension is beginning to have some effect.

“There just aren’t as many AIDS cases as there are cancer cases--that’s just simple fact,” said a Senate appropriations committee official, who requested anonymity. “The scientific evidence is that everyone who gets AIDS will die--that’s scary. But there still aren’t as many AIDS victims as there are cancer victims--and now we’re spending as much on AIDS as cancer.

“It’s talked about all the time--how AIDS (funding) has grown very rapidly,” he continued. “Everyone feels they would have had a higher funding level but for AIDS. But there’s no way to know if that’s true.”

During the appropriations process, each institute of the National Institutes of Health receives a lump sum, which the appropriations committees do not break down by specific diseases. In recent years, AIDS has been the only disease so designated.

But last year the House Appropriations Committee decided to stop earmarking AIDS money after fiscal 1989. The committee said that the “rapid expansion” of AIDS research between 1982 and 1989 “required this unusual treatment,” but that AIDS research should now “be managed by the NIH using the same system as it uses for other critical illnesses, such as diabetes and Alzheimer’s.”

Appropriations sources also note that, in the early 1970s, with former President Richard M. Nixon’s “war on cancer,” cancer received similar singular treatment, including “radically increased funding, much as we have with AIDS.” Further, they say, this approach “cooled in the ‘80s as well.”

One congressional source involved with the appropriations process during early years of the AIDS epidemic says that the specially earmarked AIDS spending “was supposed to be new money--we didn’t take it from one institute and give it to another. Every institute got an increase. But AIDS got a big increase.”

The source added: “The real problem is that there just isn’t enough money in the overall pot to do everything. Is that the fault of AIDS? I don’t know. I don’t know that the non-AIDS NIH appropriations would have been different if AIDS hadn’t been in the picture. We were in the middle of a public health crisis. Based on what we were hearing from the scientists, it looked to us that this was where the additional dollars needed to go.”

The real problem, Fauci and others say, is that “there are more research opportunities than there are resources.

“What has to happen is that the American public and the nation have to relook at how much we’re willing to spend on biomedical research as an entity,” Fauci said. “Perhaps the American public is not as well-informed as to its importance and what dividends it holds for their lives and health.”

Meyers and others agree that ultimately there must be a fundamental change in priorities.

“Congress has to make up its mind that certain things matter,” she said. “If health is a top priority, it can’t be a top priority for just one disease. It has to be health for everybody.”