NIH FUNDING: ‘Politically Correct’ Diseases Get The Cash

      Two recent opinion pieces criticize the National Institutes of Health's allocation system for disease funding, suggesting that "politically correct diseases," such as AIDS, "often get more than their rightful share of public funding." Writing in the Los Angeles Times, Johns Hopkins University scholar Daniel Greenberg asserts that the beloved NIH is "constantly badgered" over how it should allocate its annual $15.6 billion health research budget. He notes that AIDS advocates have succeeded in increasing research funding for the epidemic "from zero to $1.8 billion in 15 years," breast cancer funding has quadrupled of late and spinal-cord injury spending has shot up after actor Christopher Reeve's accident. He says that the funds devoted to AIDS relative to other diseases "do appear to be extremely unfair": NIH spent $313 million on 16 million diabetes patients in 1997, or $19.58 per patient, and $209 on each breast cancer patient, while the $1.8 billion spent on 775,000 AIDS patients breaks down to $2,403 per patient. Greenberg concludes, however, that with respect to pressure from interest groups, "NIH has generally done well in that briar patch, yielding its judgement to the lobbies only when the political heat becomes too intense. ... So far, medical research has stood up well against the politics of disease advocacy. The trends, however, are not in the right direction" (12/14).

'Disease Wars'
      Writing in the December issue of The American Spectator, author Michael Fumento picks up the argument where Greenberg leaves off. To make his case, Fumento cites an Institute of Medicine Study which indicated that on a per-death basis in 1997, AIDS research received about $70,000, while cancer received under $5,000 and heart disease under $2,000. As a result, as early as 10 years ago, NIH's acquiescence diminished its capacity to pay for cancer research, Fumento says. One National Cancer Institute doctor said, "They bled cancer to feed AIDS." According to the IOM report, "NCI had to cut basic research funding for leukemia, non-Hodgkin's lymphoma, and cancers of the colon, bladder, kidney, and brain, as well as for public information and chemoprevention." In fact, Fumento argues, the "largely unspoken impetus" for the rally on the National Mall for cancer research this past September was frustration over the success of lobbies for other diseases. Breast cancer, however, has been notably exempt from such funding struggles, in that "[b]reast cancer activists openly copied the AIDS campaign."

Propaganda Machine?
      Moreover, Fumento writes, the campaigns waged by disease lobbies have been fueled by misinformation and propaganda. Both the AIDS and breast cancer lobbies have been successful in branding opponents of increased funding "homophobes" or "misogynists." The breast cancer lobby portrayed disease funding as male- oriented, although female disease research outpaced male research by a wide margin. Nevertheless, "NIH allocations for the disease now outnumber those for prostate cancer by about five times per case and four times per death." The media, moreover, has been complicit in the problem. He cites a USA Today article from July which lamented the spread of AIDS, when actually recently released Centers for Disease Control and Prevention statistics showed that infection was dropping among most demographics and that AIDS had dropped from the eighth-leading cause of death to the fourteenth. Rep. Ernest Istook (R-OK) said, "The media pressures and influences depict AIDS as the horrible disease as opposed to being one of many horrible diseases and there is frankly a fear among many members of Congress that they will be depicted as people lacking in compassion if they dare to mention that [these other diseases] afflict far, far more Americans and cost this country far, far more than AIDS does [and therefore] deserve a larger share of the limited money available."

From The Halls Of Power
      As NIH funding continues to increase, so does the money grab by interest groups, as "[s]eemingly every group of disease sufferers now employs professional lobbyists" in order to compete with their counterparts. These "disease wars" leave Congress in a position for which it is ill suited: making funding decisions about medical research. Rep. Greg Ganske (R-IA) said, "I do have significant concerns about whether Congress has played politics with the NIH budget and micromanaged difficult scientific questions. I am concerned that these lobbying efforts are turning the floor of Congress into a scientific peer review panel [and] whether members of Congress have the scientific expertise to determine where the most promising areas of research are." Fumento is also sharply critical of the president and vice president, arguing that they increased funding for AIDS for political expedience, and now are looking to do the same for cancer. He concludes, "Most of us couldn't care less if Clinton or Gore feel our pain. What we want is for them (and Congress) to represent us--all of us, not just those who scream the loudest, sew the biggest quilts, or chain themselves to fences" (12/98 issue).

Stand Up And Be Heard
      A feature in today's Washington Post Health Section notes that Americans with dozens of diseases such as diabetes and Parkinson's "believe they have been cheated at the government's research checkout counter." The American Diabetes Association recently mailed cards to 5 million American homes, asking, "Why does the government spend $7 trying to cure AIDS and breast cancer for every $1 it spends on diabetes? Because they Act Up and people with diabetes are silent." Recognizing the success of AIDS lobbies in winning $7.7 billion in total funding this year, including housing and other support, and crediting it to their "sheer aggressiveness," other disease-specific groups "draw the conclusion that only no-holds- barred government advocacy works." Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania Health System said, "If they don't get in there and elbow and shove and push like a hockey player looking for the puck, they will get left out." But, the inequalities will likely only worsen as the stakes become higher and the competition more intense. NIH Director Dr. Harold Varmus said, "What complicates this issue is that a lot of what we do that winds up being the most important is unplanned. Advances are hard at point-of-discovery to assign to particular disease. ... [S]pending on one disease may well benefit other disorders." But, the disease-specific advocates have an opponent in House Appropriations Subcommittee Chair John Porter (R-IL), "who has flatly refused to respond to the pleas of disease-specific organizations that money be earmarked for their cause in the annual NIH budget." Porter said, "If these groups ever succeed, they will rue the day. They last thing they want to happen is to have scientific opportunity determined by the relative power of diseases on the House floor" (Havemann, 12/15).