From Mike Claeys, Parkinson's Action Network.
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Before we get to today's Question and Answer segment, I would like to
apologize for all the formatting problems and confusing symbols that appear in
so many of my postings.  This is a technical bug that we are trying to
correct, and I hope it doesn't deter anyone from reading through the messages.
If you would like a better copy of any message from PAN you see posted on the
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Below are two commonly asked questions regarding the campaign to ensure
funding of the Udall Act:



> Date:    Fri, 31 Jul 1998 10:05:59 EDT

> From:    ".Joan Waterman" <[log in to unmask]>

> Subject: Re: Todays Thought



> Why not lobby NIH? They will get the money!



> Ruth Clark, 67/9



The first point to make is that representatives of the Parkinson's community
have over the past few years been in contact with numerous NIH officials, from
Director Harold Varmus and former NINDS Director Zach Hall on down.  While
they claim to understand our passion and to be sympathetic to our cause, they
have remained consistent in their ideological commitment to pursuing "basic"
research (as opposed to the aggressive basic and applied research agenda that
will rush laboratory discoveries to patients as soon as possible) and their
resistance to further directives from Congress.  The dialogue is ongoing with
NIH, but given the current leadership, it is hard to imagine any significant
policy change on Parkinson's research funding without a specific directive
from Congress.



Even though NIH may not like it, directives from Congress are listened to
because NIH must testify each year before the House and Senate Labor/HHS
Appropriations Subcommittees.  Subcommittee members question Dr. Varmus and
the individual Institute directors about how they followed through on the
previous year's directives.



It must be remembered that NIH is a large bureaucracy and can be subject to
falling into established patterns and not being quick to respond to emerging
scientific opportunities.  Parkinson's researchers have observed that ten or
fifteen years ago the research community may not have been able to make
effective use of $100 million per year.  That situation has changed
dramatically, however, and there is no doubt among the elite researchers that
$100 million and more per year can be put to good use exploring all the
promising opportunities.



It is also worth noting that some in the Parkinson's research community
question the depth of NIH's understanding of Parkinson's disease.  And while
we do have some Parkinson's researchers who offer constructive criticism to
NIH, it is very difficult to expect researchers to publicly criticize the
entity they rely on for much of their livelihood.



Also, part of the answer is contained in your own statement: "They (NIH) will
get the money!"  The key word is "will."  NIH hasn't gotten the money yet, so
it is critical we keep hammering away at Congress to make sure they
appropriate sufficient funds.



> Date:    Fri, 31 Jul 1998 14:21:16 -0400

> From:    KF Etzold <[log in to unmask]>

> Subject: HR4274



> HR 4274 is the entire Health and Human Services budget, right?  So as such
it

> has nothing to do with Udall appropriations.  Or is the 100 million taken
from

> the HHS budget?

> Do we encourage a positive vote because of the increase in funding (around

> 9%)?

> Some enlightenment needed.

> Thanks

* K-F Etzold



HR 4274 is the budget for the entire Department of Health and Human Services
(HHS) budget, and the NIH is part of HHS, so if appropriated the $100 million
would technically come out of the HHS budget.



HR 4274 also includes the budgets for the Departments of Labor and Education
as well as other government agencies.  It is a very large bill, and contains
funding for many controversial programs.



Irrespective of these other departments and programs, the Parkinson's
community should support passage of HR 4274 (the fiscal year 1999 Labor/HHS
Appropriations bill) because of it's substantial increase for NIH.  The
proposed increase provides far more than the necessary funds to ensure that
full funding of the Udall Act can be accomplished without money being taken
from another disease category.  This is politically important because it
reduces the competition between Parkinson's and other diseases.



Please remember that sometime in September the Senate will be considering it's
version of the fiscal year 1999 Labor/HHS Appropriations bill.  From the
Parkinson's community's perspective, the Senate bill is likely to be
preferable to HR 2474 because it will likely have more money for NIH and
better treatment of Parkinson's research.  We can't yet know for sure what the
details of that bill will be, because obviously it hasn't been debated and
voted on (nor does it yet have a bill number).



In anticipation of consideration - or "mark-up" - of the Senate's bill, it is
critical the Parkinson's community contact every Senator - particularly those
sitting on the Labor/HHS Appropriations Subcommittee.  Those members are:



Arlen Specter (R-PA), Subcommittee Chairman

Thad Cochran (R-MS)

Slade Gorton (R-WA)

Christopher Bond (R-MO)

Judd Gregg (R-NH)

Lauch Faircloth (R-NC)

Larry Craig (R-ID)

Kay Bailey Hutchison (R-TX)



Tom Harkin (D-IA), Ranking Democrat

Ernest Hollings (D-SC)

Daniel Inouye (D-HI)

Dale Bumpers (D-AR)

Harry Reid (D-NV)

Herb Kohl (D-WI)

Patty Murray (D-WA)



More information and advocacy directions will be posted on the Listserve
throughout August.  To join the Parkinson's Action Network's mailing list
(free of charge), or if you have any questions, comments or requests, please
email your mailing address to "[log in to unmask]" or call toll-free to (800)
850-4726.