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Hello,

I wish every disease could receive all the research funding it can
handle.  But that is not likely, so the question is how to allocate
limited funds among various diseases and between disease specific
research and basic research.  Bruce Anderson asked to see some
discussion of this, so I posted my opinion.

I am concerned that the success we have achieved by means of the
Udall Bill may be threatened by other disease groups following our
example, and I see the disease cost basis of funding allocation as a
fair way to deal with this. Compared to this the lobbying approach is
divisive and wasteful. Also, different disease groups should be
united in pursuit of common goals, not divided over resources.

To date the research allocations have been decided by internal
processes at NIH about which we know little, and politically by
Congress. Another possible way is to base it on what the facts
regarding prevalence and disease costs are.  The arguments for Udall
bill included appeals to prevalence numbers, which were not in
proportion to the NIH funding allocations.

The NIH decisions have been criticized by a recent Institute of
Medicine report as not taking disease burden sufficiently into
account.  The Congressional decision process does not do that
either, since it is based on who can lobby most successfully.

Bill Harrington asked where I got my numbers.  They come from the
various disease organizations, and I will dig out the specific
references if anyone is interested.  Bill is correct to question
them, because I see two errors.  What I called "heart disease" is
really cardio-vascular disease (CVD), of which coronary heart
disease (14 million people in the US) and stroke (4 milllion) are
subgroups, most of the rest being high blood pressure.  Also,
diabetes is the 7th leading cause of death in the US, not the 4th.

I arranged the list in order of prevalence, not meaning to imply
anything by the order.

Regarding severity of disease, I think that is a consideration to be
factored in, and it is no simple thing to determine.  I don't see
right now how to do it.  I am fully aware that PD leads to
immobility, dementia and death.  I also know some people with
diabetes who are younger than me and who will die of it before I go.
I suppose I would prefer dementia and immobility to dialysis, given
what I know of both.

Phil Tompkins
Hoboken NJ
age 60/dx 1990