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Linda wrote, after reading about the Institute of Medicine report on the NIH: > Is there a way to influence the NIH to spend more on Parkinson's > research? Well, here's the personal opinion of one PWP. The Udall Bill is, of course, one way. It passed as an authorization measure, and although we still don't have the appropriations, we have gotten a lot more attention. Now I wonder whether the attention is causing Udall to backfire. The Bill has provided an example for other disease organizations to emulate, so that every disease now seems to have its own campaign going to write Congress to get more funding. Many in Congress are sympathetic (examples: Gingrich - diabetes, Stevens - prostate cancer). But for others there is a different reaction. They don't want to be put in the position of deciding how much to allocate for basic research vs. for this, that and the other particular disease. They lack the expertise for this (I would agree), and they don't think such decisions should be politically driven (I would also agree). So they say leave it to NIH to decide (I don't agree). So far the issue seems to be a difference between the position represented by the NIH on the one hand, which is that scientists are the only ones who know enough about the status of research to determine how to allocate the research dollars, and that of the disease lobbies on the other, who are claiming that their particular diseases are underfunded and Congress should remedy this. But there is another alternative. The report by the Institute of Medicine, plus people in Congress such as Senator Frist and Reps Hamilton and Istook all say that NIH could do more to make research responsive to public health needs, which are usually expressed as the "burdens" of the various diseases, e.g., costs of treatment, costs to society of loss of productivity, loss of income for the individuals involved, plus, I would add, human suffering, if you can put a dollar value on that. The IOM report recommends that NIH place greater emphasis on disease burden data in assigning priorities. We don't have a lot of this data, but, I would think, it shouldn't be too hard to collect enough of it to work with. First, we need to know how many people there are who have each disease. To gather this data we might have to make every disease reportable. Or Congress could mandate that an extract of every electronic billing record be sent to the National Center for Health Statistics, where tallies by patient and diagnosis would be taken. Then we would need some cost studies for various diseases, such as the one done for PD at Duke University. There are a lot of different diseases but there needn't be so many cost studies. In cost terms perhaps there are disease groups, such that the cost of one disease could represent that of others with similarities in this respect. I think that the NIH is the wrong place for assigning priorities that involve the public interest. There is a parent organization, Health and Human Services, and I think the priorities should be set and monitored by an organiztion at that level. The priority setting body would use as input the NIH info on research status, along with the disease burden data, plus statements of representatives of disease organizations, plus such data as that provided by the Centers for Disease Control on emerging diseases. There are hundreds of diseases - and who knows, if disease burden data were used, how PD research would fare relative to now. But I'm in favor of proper and fair funding for all the diseases. It would take a bit of doing to set this up, but it could be something to unite the different disease groups, which are now in effect competing for a growing but still limited amount of funds. Phil Tompkins Hoboken NJ 60/9