The Disease Wars
It is a battle that 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 nonetheless, featuring highpowered lobbyists, slick publicity machines and the passion of grassroots 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 over 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 Stony Brook, L.I., in October to their mother, Carol Baldwin, 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 last month 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 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 oversees 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, an ex-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.”
The red ribbons for AIDS on Oscars night became almost a Hollywood cliche. Now the pink ribbon for breast cancer is more common, and breast cancer funding at NIH has grown from $81 million in 1990 to more than $400 million this fiscal year. The Pentagon will fund another $135 million.
“We built a network of activists across the country - a constituency that’s primarily women, many of whom are older women, and we’ve politicized that group,” said Fran Visco, a Philadelphia lawyer who had a lumpectomy in 1987 and heads the National Breast Cancer Coalition. “We were relentless.”
It is no surprise, said Visco, that politicians responded. Sen. Edward Kennedy, D-Mass., in 1994 and Sen. Alfonse D’Amato, R-N.Y., for his 1998 re-election campaign touted their work for breast cancer funding in TV ads.
“It was a safe gender-gap issue,” said Visco.
Next came the gender backlash, from men with prostate cancer. CapCure, a group founded by Michael Milken, the ex-con financier and prostate cancer survivor, asked, in effect, “Where’s ours?”
Prostate cancer in 1996 killed 41,400 Americans - near breast cancer’s toll of 44,560; more than AIDS’ 38,780.
“More than four times as much federal investment goes to breast cancer research, while AIDS research nets 10 times as many federal dollars,” CapCure said.
Sometimes it’s not just whom you know, but what ails them. Prostate cancer now 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 from $13.2 million in 1990 to $77.5 million this fiscal year, and $45 million a year more has been appropriated in the Pentagon budget in the past two years.
Joan Samuelson of the Parkinson’s Action Network said her group was long stymied because its middle-age victims are “not a sexy group.” She recalled one congressional staffer, trying but failing to be helpful, asking “if I can come up with a children’s angle.”
Parkinson’s advocates made gains this year - Congress authorized up to $100 million for research - and Samuelson said pointing at spending for other diseases, such as AIDS, “was probably an important factor.”
“By virtue of the way the administration and Congress is responding, they’re boxing us into this situation,” she said.
AIDS activists resent the comparisons, fearing conservatives hostile to gays will seize on them to cut research. “Pitting one disease against another in terms of funding for any reason is not helpful,” said Winnie Stachelberg, lobbyist for the Human Rights Campaign.