RTK.NET Mail  111239   Jan  2 23:02:07 1996
 
I realized after sending my last message to the list that I should have
introduced myself.  I'm Sherri Cave.  A professor who has had a really
great impact on me has Parkinson's disease.  I began reading this list to
learn more about the disease and about what I could do to help efforts to
bring greater investments in Parkinson's research, particularly lobbying
to get the Udall bill passed.  I've learned a lot here, and have met some
really wonderful people.
 
A few days before Christmas I asked about what Nancy Kassebaum's objections
to the Udall bill were based on.  Pat Schark answered some of my questions,
and I also found a more exact quote from one of her response letters to a
constituent in the archives.  From talking to other activists and reading
the archives, I get the impression that few people are _exactly_ sure what
she is talking about.
 
 Although I don't live in Kansas, I plan to write her
asking some of the questions I included here, and I thought that others
might wish to do the same.  I certainly welcome corrections if I'm putting
out any misinformation here.  It's quite possible I'm misreading the Udall
bill and ignorant of much of the history of discussion about it.>
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>Sherri,
>
>The "overhead" that Kassebaum objects to refers to the administrative
>costs built into the provisions for the establishment of 10 Udall
>Parkinson's research centers nationwide,
 
        This was the source of "overhead" that was in the letter from
Kassebaum I found in the archives.  I believe her claim was even stronger,
saying that _most_ of the money appropriated in the bill would not go
to Parkinson's research.
        The Appropriations section of S.684 states that in FY 96 not more
than 10 million of the 100 million appropriated for the general purposes
of the bill can go to the not more than 10 Udall research centers.
        The bill clearly states that the centers will use existing facilities
which must be conducting basic and clinical research and providing patient
care.  Some of the money can support other programs:  training programs for
health professionals, public education, and maintaining a brain bank where
appropriate.
        If Kassebaum is assuming that the $10 million in core center grants
will not be funding research, I believe she is reading the bill inaccurately.
It's more correct to say that a significant portion of the money will not
be used to fund research at _NIH_!
        Although she probably won't answer me, I plan to ask Kassebaum what
part of the $10 million directed to the core centers she objects to.  Is it
the "development of innovative multidisciplinary research?"  Is she opposed
to using some of this $10 million for patient services?  Is she opposed
to the training programs for health workers?--It might be helpful to tell her
more about the need for this.--What percentage of hospital medical staff
know about the dangerous interaction of Eldepryl and Demerol?  Continued
lack of information among health professions has serious human and economic
costs, too....okay, next item....
 
 
 the Morris K. Udall Research
>Excellence Awards and training grants
 
from the bill under subsection (e) Morris K. Udall Leadership and Excellence
Awards..."Grants under this subsection shall be utilized to enable
established investigators to devote greater time and resources in
laboratories to conduct research on Parkinson's and to encourage the
development of a new generation of investigators..."
 
Hmm...is it just me, or does that sound a lot like money used to support
research?
The amount of money used to fund this isn't spelled out in the version
before the Senate now.  In the earlier version of the Udall bill (the
one that was brought before the 103rd congress) it was allotted
10 million for FY 96 and ramped up in succeeding years, but not as much
as the core center grants were.  I'm curious about the differences in
the Appropriations sections between the versions of the bill before the
two different congresses if anyone can enlighten me.
 
 
, a national Parkinson's education
>program (why do we need to educate about pd if we're going to eradicate
>it?), and a national directory of Parkinson's patients.
 
I think we could make a case for the education programs, but I'd first ask
how much she thinks it's going to cost?  The only 2 items that were alloted
more than 5 million in FY '96 in the older bill (other than the NIH
administered research money, of course) were the core center grants and the
excellence awards.  Given that we're talking about a million dollars here,
which is a small enough amount in government appropriations anyway,
a million or two for education is hardly a large enough amount of
"overhead" to convince a caring and fiscally responsible leader not to
support the Udall bill, is it?
 
The national directory is, at least as I see it, a pretty important research
tool, particularly when looking at causes or risk factors.  We don't even
have a very clear idea of how many people have Parkinson's in the U.S.
 
 
 These programs
>will require administrators, and that's where the old pork comes in.
 
I've been pretty impressed with the bill as I've looked through it more
closely than I had before.  There is some flexibility, because flexibility
may be the best way to develop new treatments, assess their success rates,
learn more about Parkinson's, and make sure that the best treatments
advancements are available to patients as soon as possible.  And think
of all the old Udall bill activists who will be following how the research
money they worked for is being spent!
 
 We
>can argue for the usefulness of some or all of this, or suggest
>streamlining the bill through amendments, but I suspect the vested
>interests might then refuse to support it.  I'm just speculating on what
>the problem might be.
>
>Pat
 
I'm just speculating, too, of course.  I think we just need to keep telling
more people about it.  And when people refuse to sign on as co-sponsors,
we need to ask them why and expect answers.  One of the best ways to make
sure you get a little more attention on the second try is to ask some
questions that the legislator almost certainly does not have a form letter
response for.  Hopefully there are a few buried in this monstrously long
message somewhere!
 
Sherri
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