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Arthur Hirsch wrote: > ... we need something in our arsenal that will make a better case > against those who say that Congress should not be micromanaging the > N.I.H. budget. I'll try to address this also. > [snip] ... Telling the N.I.H. that they should be spending about a > hundred million dollars on Parkinson's is not micromanaging. I'll start by playing devil's advocate for a while, and I may seem to ramble, but I have a goal in mind. It's not easy to allocate money to disease research. To decide how much of a total sum to allocate to a number of different diseases is, if not micromanaging, at least a very detailed matter. First, regarding a "number" of different diseases, how many is that? In the International Classification of Diseases system there are 14,300 diagnosis codes. But many of these indicate sub-types, body sites, degrees of severity, complications, etc. The real number is smaller. Here's a figure for argument's sake. In hospital billing there is the concept of "diagnostic related group", or a cluster of diseases of a similar type which cost about the same to treat. There are some 500+ DRG codes. So let's say from a medical research funding standpoint there are 500 different diseases, Parkinson's being one of them. So how to you allocate the research money? Perhaps first by grouping the diseases, maybe putting into groups of one member those principal diseases having a high prevalence or great cost or severity plus danger of spreading. Then where does real grouping begin, what are the groups, and what goes into each? If I had a rare disease, I wouldn't want it to get lost in a "miscellaneous" group. If I were in Congress, instead of creating disease groups I'd develop some general guidelines or criteria or formulas for prioritizing all 500 diseases at the individual disease level, then call in the Center for Disease Control to collect the data needed for each disease, and then tally it up. The criteria or variables in the formulas might be -- Number of people actually affected; number potentially affected if disease is not contained; economic cost (medical treatment, lost income, disability payments, etc.); emotional cost (degree to which disease is fatal or causes suffering); means already existing to provide a cure or symptomatic relief or manage the disease; cost of research; prospects of a cure or significant progress; amount by which past research has been under or over allocated; and degree to which research may benefit other diseases as well. Most of these are points that PAN has already developed for PD. Are there other considerations which we should add? If this method looks too much like bureaucratic bean counting, then what is a fair and objective method to come up with 500 (or some other number of) different research allocation dollar amounts? I'm open to suggestions. Maybe the groupings are by medically similar diseases which have similar characteristics in terms of the above allocation criteria. My point is, it isn't easy, or shouldn't be, and there's a lot of detail involved. If this looks about like the way to do it, well, too bad -- we don't have a government procedure or function for allocating research funds in this manner. If the above criteria or variables characterize the data needed to make the allocation decision, then we must get this data from the researchers and epidemiologists. They are experts in providing such facts. But they can't make up the allocation guidelines, which tell us what to do based on the data, because the guidelines incorporate general value decisions. Consider putting a dollar value on suffering. Besides, what if they also want to emphasize what is scientifically interesting? In the absence of a government body having a systematic and fair way to allocate research funding among diseases, all we have is Congress. So what about PD? As one detail disease among 500, why does it deserve special prominence? There are overriding considerations. It's because in the past it has been underfunded, research has a strong cost benefit justification, including good prospects for near-term successes, and success would make a significant impact on the national economy. These points, all part of the allocation criteria, have all been well argued by PAN. By the way, Congress has no problems about "micromanaging" other detail matters when it wants to. They may decide how many of a certain type of fighter plane to build or where to close a military base. Overriding considerations -- some large degree of national concern or other significant impact -- justify this detailed focus. By analogy specific funding legislation for PD is also justified. Phil Tompkins Hoboken NJ 60/9