COLUMN ONE : Medicine’s Big Dose of Politics : Hundreds of groups campaign hard for research dollars on Capitol Hill. Is it democracy in action or a divisive free-for-all that warps the medical agenda?

It is known in some circles as Sick Kids’ Day, a kind of Capitol Hill casting call for diseases and one of the most remarkable rituals in the annual scramble for a piece of the $8.2-billion U. S. biomedical research funding pie.

Sick Kids’ Day is actually three or four days in spring, when advocates for hundreds of conditions from AIDS to SIDS parade before congressional committees and plead their cases for more federally funded research into their disease.

Like actors on audition, they appear at three- to five-minute intervals. Some bring a movie star--preferably one with the disease in question. Others import constituents, or a member of Congress with an ailing family member, or, best of all, an ill child.

“Pity the poor congressman who has to sort out all these conflicting appeals,” mused Dr. Richard J. Glassock, a prominent kidney disease researcher and professor of medicine at UCLA. “Because there is no way the federal government has the wherewithal to pay for all of them.”

That dilemma lies at the heart of what many believe is a growing crisis in biomedical research funding, and in the process through which the U. S. government allocates billions of dollars in pursuit of ways to prevent and cure disease.

With advances in science opening up innumerable research possibilities but with federal budgets simultaneously being cinched tight, the competition among disease groups for attention and funding has become increasingly fractious and political.

Hundreds of advocacy groups now vie year-round for the favor of influential members of Congress--enlisting professional lobbyists, tracking the afflictions of legislators, wooing the media and orchestrating nationwide grass-roots campaigns.

Some see the process as democracy in action: Advocates are simply making the public’s desires known, they say. They are attempting to influence the priorities of an often-insulated scientific Establishment fed generously by the public’s hard-earned cash.

Sure, it may sometimes seem a little haphazard, they say. But it is preferable to the alternative--a system in which federal scientists would be left alone by Congress to set national research priorities on their own.

But others suggest the process is getting out of hand: Is it producing the best science or simply greasing the squeakiest wheels? Critics say the growing free-for-all is divisive, distracting from the much needed task of long-term setting of goals.

“The downside is that when the going gets tough, as it has lately, there tends to be . . . an everybody-out-for-themselves attitude,” Glassock said. “That certainly complicates the ability to set long-range priorities for biomedical research.”

Most of the money for biomedical research in the United States is public. A smaller amount comes from corporate and foundation grants. The public money is channeled largely through the National Institutes of Health, a federal network of specialized institutes that conduct their own research as well as make grants to outside scientists.

The institutes’ budgets are set each year by the President and the Congress. They have climbed steadily, even in difficult times. The NIH budget rose by 121% in the 1980s--compared to a 42% increase in total, domestic, discretionary spending.

But breakthroughs have also sped up the pace of science, and thousands of ambitious baby boomers have embarked upon careers in research. The number of proposals worthy of NIH funding now exceeds, by a widening margin, the institutes’ ability to pay.

As a result, it is harder and harder to get a grant. Little more than one quarter of all applications to the NIH will get funded this year. That’s down from one-third just six years ago. And scientists say the percentage drops even lower in certain institutes.

So disease activists and some researchers turn increasingly to Congress and to the committees that control the funding of NIH, pleading not only for more research funding in general, but also for funding specifically for their disease.

If a group is especially persuasive, a congressional committee may agree to earmark money for a specific project--a controversial practice that some say is increasing whereby politicians instruct federal research-institute scientists how to spend their money.

To critics, earmarking often amounts to an end run around the NIH and around the peer-review process by which the institutes decide what to fund--a process scientists describe as relatively well protected against bias and conflict of interest.

“That has been a source of growing concern,” said William Schmidt Jr., Washington counsel for the Juvenile Diabetes Foundation International, which recently persuaded Congress to earmark several million dollars for research into diabetes-related kidney disease.

“We see, from a policy perspective, some of the dangers of that type of thing getting out of hand,” Schmidt said. “To some extent, one would rather see the scientific community and the researchers at NIH making those decisions as to where those dollars go.”

“We want to be sure that the money is given to the people who do the best work,” said Carol Scheman of the Assn. of American Universities. “And the way we have of judging who does the best work is by having scientists judge.”

The pressure on Congress has become even more intense in the past year.

The 1990 Budget Enforcement Act prohibited the practice of raiding, say, the defense budget to bolster domestic spending. So the budget allocation process has become even more divisive, with new special interest groups for domestic programs lining up for the fight.

“You name a disease, there’s probably a Washington lobby for it,” said Scott Ballin, vice president for public affairs for the American Heart Assn. “ . . . (The process) has magnified tremendously--the number of issues, the intensity of it, the competition.”

One recent campaign that could serve as a case study in how to shape research funding priorities through Congress was waged last year by the Alliance for Aging Research, which sought a dramatic increase in aging-research funding.

The group settled on a relatively simple pitch: Health costs will continue to rise until science learns how to prevent or postpone the chronic conditions of aging; so Congress should more than double federal aging-research funding to $1 billion.

Daniel Perry, the alliance’s executive director, boiled the argument down to a single page, then held a press conference to announce that 50 groups had endorsed the goal, then held another press conference to publicize new research showing that the health costs of the aged were heading through the roof.

The group circulated the press clippings “like crazy” to members of Congress serving on the Pepper Commission on long-term health care. When the commission released its report, as Perry puts it, “Bingo! The same message . . . comes out of the Pepper Commission.”

In the end, Congress hiked the budget for the National Institute on Aging by 35.6%--more than twice the percentage increase given to any of the other 12 institutes and more than six times the percentage increase given that year to the National Cancer Institute.

“You end up creating something and then you feed on it,” Perry said. “ . . . You recycle things. We’re constantly looking for new findings from research, new evidence that the costs of aging will be catastrophic unless we do something now.”

Organizations like Perry’s are proliferating rapidly. One directory lists 741 health groups--up from 90 in 1975. Many have beefed up their Washington staffs, formed public policy committees and hired, at their own expense, professional consultants and lobbyists.

A half-dozen public affairs firms in Washington now specialize in health issues, often staffed by long-time health policy insiders--former staff members for key health committees or aides to members of Congress active in health issues.

Domenic Ruscio, for example, spent five years as a Senate Appropriations Committee staffer handling health and education appropriations before forming the firm, CR Associates, with a former House Appropriations Committee staffer.

Dale Dirks’ father was chief clerk for the Senate appropriations subcommittee that deals with health, then a lobbyist for the American Medical Assn., before starting the Health and Medicine Council of Washington, which Dirks now runs.

Both firms have had impressive successes.

Dirks’ firm represents, among other groups, the National SIDS (Sudden Infant Death Syndrome) Alliance, which over the past few years has persuaded Congress to increase SIDS research funding from about $500,000 to $7.2 million and has been shooting recently for $10.4 million.

One of Ruscio’s clients, the Alzheimer’s Assn., persuaded Congress to increase funding for Alzheimer’s research from $146 million to $230 million last year--in Ruscio’s terms, “an amazing feat in a year where there was so much battling over funding.”

“They know the system,” a committee staffer said of such specialists. “They know which staff to talk to, which members are interested, how testimony should be written. . . . They’re not hardball lobbyists, they’re facilitators.”

A classic tactic used by groups is to find a celebrity spokesperson--say, Mary Tyler Moore for juvenile diabetes, Elizabeth Taylor for AIDS. Stars attract the media, which attract politicians. Stars can get on congressmen’s calendars and get special treatment at hearings.

“Let me tell you, at hearings where Elizabeth Taylor has testified about AIDS, there wasn’t an empty seat in the house,” said Jeff Levi of the AIDS Action Council. “There were members there not even on the committee. The minute she left, they cleared out.”

Enlisting a member of Congress, or a former member, is also useful. Last April, former House speaker Thomas P. (Tip) O’Neill returned to Capitol Hill, under treatment for cancer, to ask for a $200-million increase in cancer-research funding.

O’Neill’s appearance “had a profound effect on the members,” Levi said. O’Neill had been the ranking member on the committee and had come back to ask his colleagues to rectify what some complain has been a slump in funding for cancer research.

A related tactic is to name a proposal after a former member. Take one proposal for a new biomedical research program in the U. S. Public Health Service. Proponents this year suggested naming the program after Rep. Silvio Conte, who died of cancer in February.

“Suddenly, it becomes more difficult for a member to oppose it,” said David Moore of the Assn. of American Medical Colleges. “Now they’re not opposing the senior biomedical research service; they’re opposing the memory of Sil Conte.”

Targeting the right member to promote one’s cause is also something of a science.

“Let’s say we wanted to create a new stroke institute,” said Ballin. “. . . We would want to find someone in Congress who has had a stroke, or knows someone with stroke, who is sympathetic, preferably on Appropriations.”

As for heart disease, the association is always looking for allies.

When Ballin read that Sen. David Pryor (D-Ark.) suffered a heart attack in April, he fired off to Pryor’s office a copy of the heart association’s cookbook, background materials on heart disease and pamphlets on exercise, diet and smoking.

Sen. Harry Reid (D-Nev.), whose wife has Crohn’s disease, is seen as a friend of digestive diseases research. Oregon Republican Sen. Mark Hatfield’s father had Alzheimer’s. But, participants say, a member’s medical pedigree is often not enough.

“Even if they have a parent with Alzheimer’s, if they’re not on the right committees, unless they are tremendously persuasive and willing to do some horse trading, it doesn’t do you quite so much good,” said Perry of the Alliance for Aging Research.

The media, Perry said, can be an effective tool.

Throughout the first half of the year, while congressional committees are deliberating, advocates keep tabs on research into their diseases. If new findings are published, some groups stage press conferences to try to drum up publicity.

“Certainly the media are used . . . to suggest that a cure or prevention is just around the corner,” Perry said. “You can bet the disease-oriented groups push (the medical journals to the media) hard . . . when the appropriations committees are gathering evidence.”

Finally, there is grass-roots activism, which many say is on the rise.

The Alzheimer’s Assn. brings several hundred relatives of Alzheimer’s patients to Washington every April for a three- or four-day “public policy forum.” They receive a quick lesson in communicating with legislators, then are “set loose” on Capitol Hill.

“What drives members of Congress is a real disease with real victims, maybe their constituents,” Perry said. “ . . . It tends to be the fear of conditions and diseases and the pressure of constituents.”

“Yeah, there’s an irrational element to it,” he said. “I often say, the fear factor is the most important element driving medical research in this country today.”

One of the most notorious instances of biomedical earmarking resulted from research in animals in the mid-1970’s that suggested a low-protein diet might delay the development of end-stage kidney failure in people with kidney disease.

The findings were significant because the federal government spends $4 billion a year on care for people on dialysis machines. If end-stage kidney failure could be postponed, some specialists suggested the government could save millions of dollars.

Making that argument, Dr. Mackenzie Walser, a professor of pharmacology and medicine at Johns Hopkins School of Medicine, led a seven-year lobbying effort to persuade Congress to fund a carefully designed study to explore the question in humans.

The NIH and the U. S. Health Care Financing Administration are now splitting the costs of the $60 million, 10-year study, which is being conducted at medical centers throughout the United States and is expected to produce results in late 1993.

“The net result is that other types of research tended to suffer--or at least suffer in the sense that it was not possible to fund the same number of quality research projects that were coming in independently,” said UCLA’s Glassock.

Nevertheless, many insist the current system is the best available.

“Yeah, it’s a little haphazard. But democracy’s a messy business,” Perry said. “I think (the system) works. And I can’t imagine setting up a panel where only people with letters after their name sit up and decide appropriate (research) targets for the nation.”

Critics, however, fear the increasingly political system could eventually do serious damage--distracting attention from what they say is the need to expand the overall research budget and interfering with the setting of national priorities.

“If everybody is up there arguing only for their little piece of the pie, and nobody is looking at the whole . . . there’s a very real danger that resources will not be well used,” said Moore of the Assn. of American Medical Colleges.

Medical Research: The Numbers

Although the federal budget for biomedical research funded by the National Institutes of Health has increased steadily over the last decade . . . 1980: $3.43 billion 1981: $3.57 billion 1982: $3.64 billion 1983: $4.02 billion 1984: $4.48 billion 1985: $5.14 billion 1986: $5.49 billion 1987: $6.18 billion 1988: $6.67 billion 1989: $7.15 billion 1990: $7.58 billion 1991: $8.27 billion 1992: $8.77 billion*

. . . the number of applications for research grants has also climbed. As a result, it has become harder to get an application approved and a project funded.

Year Number of Applications % Approved 1984 25,358 32.6% 1985 28,470 33.3% 1986 26,884 32.2% 1987 28,761 34.8% 1988 28,888 32.3% 1989 29,121 27.5% 1990 29,529 24.0% 1991 30,332* 26.9%*

* Estimated SOURCE: National Institutes of Health