It pits the dying against the dying, the suffering against the suffering.
On the front lines, some call it the disease wars — the growing, discomforting competition among advocates for different deadly and disabling afflictions over $14 billion in federal research money.
There are winners and losers but no clear villains because all are worthy causes.
But it is a big-league Washington fight, featuring high-powered lobbyists, slick publicity machines and the passion of grass-roots activists literally fighting for survival.
Celebrities with causes troll Capitol Hill and push for their fans’ support — Elizabeth Taylor for AIDS, Mary Tyler Moore for diabetes, Christopher Reeve for spinal cord research, Muhammad Ali for Parkinson’s disease.
Awareness of breast cancer got a boost with Candice Bergen’s “Murphy Brown” confronting the disease this season. Paparazzi were snapping when the Baldwin brothers — Alec, Billy, Stephen and Daniel — dedicated a breast cancer center in October in Stony Brook, N.Y., to their mother, Carol, a survivor and advocate.
For politicians looking to cultivate important constituencies, disease-research spending is a way to connect.
President Clinton was in midspeech at a gay rights group’s dinner when a heckler shouted: “People with AIDS are dying.”
Clinton shot back: “Since I’ve become president, we’re spending 10 times as much per fatality on people with AIDS as people with breast cancer or prostate cancer.”
His numbers were a bit off, but the crowd roared.
Prostate cancer survivor Bob Samuels winced.
“Every time we read or hear . . . some elected official is talking about how much they are doing for one disease over the other, we sort of cringe,” said Samuels, 59, a former New York banker who heads the National Prostate Cancer Coalition. “They’ve sort of politicized diseases.”
The AIDS lobby wrote the playbook for disease groups seeking a bigger slice of the federal research pie.
Ignored and often vilified when the epidemic exploded during the Ronald Reagan era of the 1980s, gay activists went to extremes to be heard. Now, they are more sophisticated and mainstream. “We can have much greater impact working on the inside,” said Daniel Zingale of AIDS Action.
Big-money donors cultivate politicians. AIDS advocates have a pipeline into the White House and help shape policy at the National Institutes of Health, which oversee most federal medical research.
NIH will devote more than $1.6 billion to AIDS research in the 1998 fiscal year — more than double the 1990 amount.
The bottom line: Thanks to new drugs, AIDS is no longer a certain death sentence and the fatality rate is dropping.
Looking upon their success with admiration — and, at times, envy — advocates for other diseases adopted many of the same tactics.
Bill Schmidt, top lobbyist for the Juvenile Diabetes Foundation International, said, “We’ve learned over the years oftentimes the squeaky wheel gets heightened attention.” But Schmidt acknowledged: “Any time something becomes political, it can be unfair.”
Dr. Jan Breslow of Rockefeller University in New York, a former president of the American Heart Association, said cardiovascular disease funding, adjusted for inflation, fell 6 percent between 1986 and 1996 while NIH funding rose 36 percent. “In 1996 alone, if the heart program had gotten its fair share . . . there would have been an extra $300 million.”
Sometimes it’s not just whom you know, but what ails them. Prostate cancer gets more attention in Congress partly because of survivors they know well — former Senate leader Bob Dole, retired Gen. Norman Schwarzkopf, and Sens. Richard Shelby (R-Ala.) and Ted Stevens (R-Alaska).
NIH research funding has risen to $77.5 million this fiscal year from $13.2 million in 1990 and $45 million a year more has been appropriated in the Pentagon budget in the last two years.
To some extent, the funding battles are more symbol than substance. With few exceptions, Congress does not micromanage NIH. It still has wide discretion on how it approves scientific grants.
NIH Director Dr. Harold Varmus, a Nobel Prize-winning geneticist, said much of the best research is basic and not specific to any disease. Research into one disease often leads to breakthroughs in fighting another.
“We need to have the best people doing the best science,” Varmus said. “Sometimes you get a tremendous bang for a very small buck — other times, very little for a lot of money. That’s what I try to tell advocacy groups.”
Varmus acknowledged the NIH budget “is paid for by the political process, so of course it has an influence.”
