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"OUR NATIONAL FUNDING SYSTEM TO FIGHT DISEASES IS SICK"
By Morton Kondrake, Executive Editor, Roll Call Newspaper (Capitol Hill)
What's wrong is that it takes a Hollywood star -- in this case, Mary Tyler Moore -- or a powerful politician to make sure the governement devotes adequate research dollars to fighting a disease. Prior to August 5, President Clinton signed the bipartisan budget deal, diabetes received fewer research dollars per victim -- $19.75 -- than any other major disease. Because of Gingrich, the budget deal contained $300 million in added research funds over the next five years, $150 million each for juvenile diabetes and American Indian victims, plus $1.8 billion to cover preventative diabetes testing for Medicare recipients.
Even with the add-on, though, diabetes funding at the National Institutes of Health will be only $346 million a year. CFIDS will get $7.8 million for FY 1998 - only about half of which will actually be spent on CFIDS according to testimony by Anthony Fauci (NIAID) at hearings before HHS Subcommittee in February.
By comparison,
AIDS is funded at $2,143 per victim.
Cancer at $338 per victim.
Breast Cancer at $200 per victim.
Alzheimer's disease at $81 per victim.
Heart disease at $74 per victim.
Parkinson's disease at $34 per victim.
As the husband of a Parkinson's victim, I'm eager to get that level of funding up -- to $100 per victim if a bill named after former Rep. Morris Udall, D-AZ, could pass Congress -- but the effort lacks the energetic support of anyone as powerful as Gingrich. Other underfunded diseases -- strokes and cervical cancer, for instance face the same disadvantage.
Gingrich became interested in diabetes because his wife's mother suffers from the disease and because his former GOPAC director, Gay Gaines, has a child with juvenile diabetes. Later, he discovered that prevention and early treatment could stop severe complications such as blindness, loss of limbs, and kidney disease -- and save the governement hundreds of millions in Medicare and Medicaid expenses. Gingrich became an advocate for Medicare funding of disease screening and for diabetes research. In June he received an award from the Juvenile Diabetes Foundation, whos Washington lobbyist is former White House chief of staff Ken Duberstein, a Gingrich advisor.
Last month, after House and Senate conferences had finished their work on a balanced budget deal, Gingrich proposed to White house budget director Franklin Raines that extra money be put in at the last minute for diabetes research, Raines agreed. But on July 29, after the White House and Congressional Republicans had held their seperate victory parties celebrating the budget pact, a glitch developed. Outgoing Gingrich health staffer Ed Kutler got a call from White House aide Chris Jennings to check Raines recollection that the diabetes research figure would be $100 million over five years for both juvenile diabetes and the Indian Health Service. Looking at Gingrich's notes from the Raines meeting, Kutler and Gingrich aide Missy Jenkins thought the deal was for $300 million. They took the question to Gingrich, who was having wrap-up session with top White House aides. Gingrich said he thought the number was $300 million. He turned to White Hosue chief of staff Erskine Bowles, whose son happens to suffer from juvenile diabetes. Bowles agreed to $300 million and that the amount was written into the deal.
On August 8, President Clinton unveiled the diabetes initiative at Georgetown University Hospital. Gingrich couldn't be there -- Mary Tyler Moore was -- but Clinton praised his as "a toreless advocate for greater investments and research, prevention and care."
This would be a happy story of politicians doing the right thing were it not for the fact that the current health research funding is skewed toward diseases with politically potent advocates.
AIDS, with the gay community, Hollywood, Clinton, and most of Congress behind it, is the best example, but there are others. NIH has an institute on hearing loss, for instance, because Senator Tom Harkin, D-IA, former chairman of the Senate Health Appropriations subcommittee, has a deaf brother. Also, spinal cord research will get an extra $10 million over the next 2 fiscal years because actor Christopher Reeve is a friend of Clinton's and went to the top when NIH bureaucrats tried to hold up money promised by the President.
It shouldn't work that way, with every disease group struggling with all others in zero-sum game.
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