Splitting Ounces of Prevention, Pounds of Cure : Medicine: The lion’s share of research dollars goes to the diseases with the loudest lobbyists.


For every American who dies of AIDS, the federal government spends about $79,000 to stop the disease. For everyone who dies of stroke, it spends $600.

Of course, those are not the only differences between the two diseases. AIDS is new, catching and strikes the young. Stroke is none of those.

But when it comes to deciding which diseases are national priorities--which ones the government will go all out to cure and stop--AIDS and a few other diseases differ in another important way: They have vocal, hard-working networks of patients and lobbyists behind them.

Their goal is to make sure that their disease gets its share of federal research. But some fear that they may be too successful. They ask whether spending lots of money to solve the ills with the loudest pressure groups will distort the nation’s overall health agenda.


The federal government is the world’s biggest backer of medical research, principally through the National Institutes of Health, which have an annual budget of almost $9 billion. The critics note that as advocates steer more of this money toward their causes, they will inevitably take money away from other ills, such as stroke, that have no support groups. How research money is spent today will influence how Americans live and die 10 or 20 years from now.

“All of this advocacy is dangerous,” says Dr. Robert Wachter of the University of California San Francisco Medical Center, who learned about disease activists firsthand when he organized the international AIDS meeting in San Francisco two years ago.

“With all these squeaky wheels, how much will be left over for the problems of groups that are not advocating?” he asks. “Is that the criteria we should be using to budget our resources?”

He notes that federal research spending goes up at 5% or 6% a year, or roughly the rate of biomedical inflation. Since total spending remains steady, more money spent on one disease means less spent on another.


“The real worry is that in tight budget times, Peter will be robbed to pay Paul,” said Dr. Robert Young, head of the Fox Chase Cancer Center in Philadelphia. “Somebody will take more money out of the stroke budget and put it into breast cancer. That is the danger of the politicization of budget decisions.”

However, successful advocates deny that they are in competition with other research causes. Instead, they say they want research to go up for all diseases, not just theirs.

“I refuse to pit one disease against another,” said Ellen Stoval of the National Coalition for Cancer Survivorship. “We want to get more dollars for all kinds of health care.”

But those whose causes have not attracted large followings worry they have to fight or risk falling behind.


“We no longer have diseases. We have interest groups,” said Eugene Schonfield of the National Kidney Cancer Assn. “By vigorously pursuing their own self-interest, everybody else has had to do the same thing or they are not going to get their fair share of resources. What we have today is competition among interest groups for health care resources.”

While the AIDS movement has clearly had the most dramatic success, cancer advocates and their supporters have also shown that decisions about federally sponsored research are political, and lobbying works.

Last fall, working with congressmen who took up their causes, they succeeded in sharply increasing research into cancer of the breast, prostate, ovary and cervix. Congress urged the National Cancer Institute to make these cancers “its top priorities” and to “treat these diseases with utmost urgency.”

Breaking with its tradition of not telling federal scientists how to spend money, it specified that the institute add $41 million to its 1992 budget for breast cancer, which was already its foremost research priority. This year, the institute will invest $133 million in breast cancer research, up 45% from last year.


At the same time, Congress increased prostate cancer spending 93%, from $14 million to $27 million. It increased cervical cancer research spending 45%, from $22 million to $32 million. And it increased ovarian cancer research 43%, from $14 million to $20 million.

Precisely comparing federal spending for various diseases is difficult. The U.S. Public Health Service provides the totals but concedes it uses different accounting methods for AIDS. AIDS advocates contend the government underestimates what it spends to treat cancer, heart problems and diseases other than AIDS.

But even some of those involved in the lobbying for increases seem uneasy with the process.

“I wish there was enough money so we would not be in a position of having members of Congress figure out what diseases are the most deserving. That’s not fair. But that’s the position we are in,” said Marguerite Donaghue of Capitol Associates, which lobbies for several disease interest groups.


The dramatic growth of spending for AIDS research is clearly the model for the new cadres of disease advocates.

In 1982, the U.S. Public Health Service spent $5.5 million on the just emerging epidemic. In 1983, the total quintupled. In 1984, it doubled again. And it roughly doubled in 1985, 1986, 1987 and 1988. By that time, it reached $924 million. The growth of the AIDS budget has slowed, but it still goes up annually and is now about $2 billion.

AIDS is a public health emergency, and AIDS advocates cannot claim all the credit for the huge budget increases. But many believe their attention-grabbing demonstrations and quiet back-room lobbying sustain the sense of crisis that keeps the government spending freely.

“There is no way to underestimate how AIDS has changed the way research policy is made--everything from the way money is allocated to the way clinical trials are run,” said Jeff Levi, a lobbyist for the AIDS Action Council.


Some researchers who study diseases without patient groups behind them complain that advocacy--particularly AIDS advocacy--is taking money away from their work.

Among these are doctors who study strokes, which affect 500,000 Americans annually, killing about 150,000 and leaving many others paralyzed or impaired.

At Massachusetts General Hospital, stroke researcher Michael Moskowitz said federal support for the disease “is very, very low, and everybody knows it’s a problem.”

“There is no effective lobbying group, because the victims are old and impaired,” Moskowitz said, and because of the success of other disease groups, “the situation is getting worse.”