January 8, 2001
There are many things that can't be taken for granted. A long healthy life is one of them. Funding for biomedical research that can help add healthy years to our lives is another. Consider the National Institutes of Health, the preeminent source of funding for biomedical research in the United States. For the 2000 fiscal year, the NIH had a research budget of $17.8 billion.
Tulane researchers received about $32 million of that money. NIH administrators thought a budget increase of 17 percent in 2001 was a done deal. But that was before the November presidential election. The prolonged period of uncertainty following election night caused the budget deal to fall apart in Congress and the NIH found itself operating on a day-to-day continuing resolution.
"Although the NIH was on track for doubling its budget in five years, and this was year three of five, it may be that we lose momentum," said Jess Thoene, director of Tulane's Haywood Genetics Center. Thoene understands the importance of keeping the government's feet to the fire when it comes to research funding. He serves on the board of Funding First, an initiative of the Lasker Foundation, a non-profit organization that advocates for medical research and public health.
This fall, Funding First released Exceptional Returns, a report by a bipartisan group of seven economists who estimate that the increase in longevity due to advances in medicine and public health in the United States was worth a stunning $57 trillion between 1970 and 1990.
"We decided in order to make our case to Congress and also to the people-the voters-we needed to show some tangible evidence that biomedical dollars were dollars well-spent," Thoene said. The $57 trillion figure is based on the value people put on their own lives. "If you ask people to take on a risky job, you have to pay them more," explained Funding First president and chief executive officer Leon Rosenberg, who visited Tulane in October.
"That's one way of estimating what their life is worth. If you do this enough times, you can get numbers for what a life-year is worth. Economists have been doing this for years, but they've never applied it to health and medicine."
He noted that although there is some resistance to the idea of putting a dollar value on a human life, this approach is actually more humanistic than thinking of people only in terms of what they earn and consume. In the eyes of the political world, however, that may be a liability.
The value of a life may seem a lot more nebulous than an increase in employment rates or tax revenue. Nevertheless, most taxpayers seem to understand the importance of biomedical research, Thoene said. And yet many research institutions are finding that certain sources of funding are drying up, partly as a side effect of managed care.
"Twenty years ago, clinical revenues spun off excess that was used to pay fellow salaries, to pay research professors' salaries, and to do research," Thoene said. "Now, as people brag about squeezing every ounce of fat out of the system, those things are not there. And research is greatly inhibited. The best way to do good research-though to an auditor it sounds dangerous-is to give well-informed, bright, well-taught people the freedom to think and follow their scientific intuition. But the flexible dollars that allow one to follow one's instincts are very much depleted."
Thoene was invited to serve on the board of Funding First because of his involvement in rare-disease research and previous experience in Washington. He was the chair of the National Organization for Rare Disorders and of the National Commission on Orphan Disorders. He is an expert on cystinosis, a rare disease that affects only a few hundred children in the United States. The disease causes cystine to build up in the kidneys and untreated will cause death from kidney failure by age 10.
Thoene and his mentor, Jerry Schneider at the University of California-San Diego, developed the standard treatment for cystinosis. They found that cysteamine, an off-the-shelf chemical, can prevent the accumulation of cystine in the kidneys and allow the patient to live a normal life. The only drawbacks are that it tastes terrible and must be taken several times a day. It took 20 years of testing and $2 million in funding to attain FDA approval for cysteamine.
Today, researchers independent of a drug company would have difficulty acquiring resources to develop their research to such an extent, Thoene said. The problem is that pharmaceutical companies often show little interest in research toward treatment for rare, and therefore unprofitable, diseases. In his capacity as chair of NORD, Thoene lobbied hard for the passage of the Orphan Drug Act, which offered the pharmaceutical industry some incentive to develop treatments for rare diseases by offering seven years of exclusive marketing rights to the product.
President Ronald Reagan almost vetoed the act, but later claimed it as the most important piece of health-care legislation of his administration. But that's typical of the short memory of Washington, according to Thoene.
"Everything you do there is written on the sand below the high-tide mark," he said. "You have to do it again, every single day, whatever it is. The half-life of your Rolodex is six months."
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