Print

Print


In response to your letter below, I'm 42 and have parkinsons for 13 years,
I'll trade you for diabetes or almost any of the other health problems
mentioned.
You are correct that we shouldn't be squabbling amongst ourselves but seeking to
raise money for all those causes.

At 09:56 AM 12/17/98 -0500, you wrote:
>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
>
>