To:  Members of the listserv

PAN did not, cannot, say this publicly.  But I can.

Basically, the NIH is not telling the truth about its level of support for
Parkinson's research. It does this, at least in part, to avoid
Congressional usurpation of its historic function, i.e. to decide each
year, on its own, how to allocate some $14 billion among the many disease
groups. NIH director,
Dr. Harold Varmus, is reportedly a formidable bureaucrat, respected by many
key  congressional leaders.

For a number of years, 1.5 million Parkinson's victims had annually
attracted a scant $24 to $26 million "directly" allocated to study their
disease.  This was the level determined by the NIH, as recently as 1994, as
appropriate for Parkinson's.

It stayed that way  until some people, most notably Joan Samuelson, came
along to point out the inequity of the NIH allocation, and seek redress.
Initially, the NIH response was that all the good research on Parkinson's
that is submitted each year is being funded.  Then,to counter and confuse,
NIH began focussing on "related" research expenditures to puff-up the
Parkinson's numbers.

Parkinson's became the only disease to have more funding for "related"
research than for "direct" research.  Indeed, it is the only disease with
these costs reported separately, but lumped together whenever convenient.

Today it is convenient.  Today the NIH is telling the Congress that $98
million is being spent in Parkinson's research this fiscal year, almost the
total authorized by the Udall Act, and that over $100 million will be spent
next fiscal year.

So, says NIH, if Udall's numbers are being met, why should the Parkinson's
community worry?

Why?  Because at best, under the current law, "direct" research will get
about $40 mil of that $98 mil, the rest going to areas of "related"
research, whatever that may be.  Under Udall, $100 million was to go for
"direct" research.

Why?  Because the NIH, for another year, has independently allocated
research funds, despite the strong statement made by the Congress in
overwhelmingly approving Udall.

Why?  Because many, many renowned and respected Parkinson's researchers,
perhaps fearing retribution, privately will tell you that the NIH review
process leaves many, far too many, scientifically meritorious applications
without funding.  Whether NIH continues to maintain the fiction that this
is not the case I do not know.

Finally, as a Person With Parkinson's, I worry because the political
process is clearly failing me, and my brothers and sisters who share my
seemingly inevitable fate, to die the excruciatingly slow death being
experienced by my former congressman, Mo Udall.  Many good people, with the
disease and without, have articulated the need for funds, the obvious
discrimination against Parkinson's research, and the potential for
heretofore unheard of scientific progress. We have written and called our
representatives, and have visited them in their offices to plead our case.


Our words have been heard.  Vast majorities in both houses voted for the
Udall bill.  But, in the funneling process known as "appropriations," our
needs are apparently going to fall victim to the power of the NIH.  The NIH
appears to have convinced key members of the Congress that it alone, with
no interference from the people's elected representatives, should continue
to decide on the allocation of medical research funds, the Udall Act
notwithstanding.

I wonder, does the Pentagon determine how each defense dollar is allocated?
Are the Joint Chiefs of Staff as independently powerful in their venue as
Dr. Varmus is in his?

PAN deserves credit for singularly continuing to apprise us of what is
happening  in Washington, and to give guidance on what we should do.  I am
not  sure that the past methods they call for - writing and calling - are
going to push our current cause "through the appropriations funnel."  But
until the Parkinson's community is ready to move beyond this stage, it is
the best we can do, and we should do it the best we can.

                                Bob Dolezal


At 7:11 PM 8/3/98, [log in to unmask] wrote:
>from Mike Claeys, Parkinson's Action Network [log in to unmask]
>July 31, 1998
>        Grassroots Action with Congress Needed During the Month of August
>
>        The month of August is a key time to work with legislators.  Since
>Congress
>is in recess, legislators spend most of the month in their home districts,
>making it easier for them to meet with constituents.  Legislators also often
>have more time to meet and work with their constituents.
>
>        Below is a checklist of activities that we urge you to take during
>August to
>help ensure that Parkinson's disease receives increased research funding.
>
>
>MEET WITH YOUR LEGISLATORS
>
>-       Schedule an appointment with your legislators in their district offices
>during the upcoming August recess.
>Or*
>-       Invite your legislators to attend your support group meeting or
>schedule a
>special meeting when your legislator can attend.
>
>-       Attend one or more of your legislators' "Town Hall Meetings."  You
>can call
>your legislator's office to get the meeting schedule.
>
>
>SEND THEM THE MESSAGE
>
>-       Get the right message to Members of Congress.
>
>-       Fully fund the Udall Parkinson's Research Act (P.L. 105-78) by
>ensuring that
>the FY 1999 appropriation for the National Institutes of Health (NIH) includes
>at least $100 million in Parkinson's-focused research, as provided in the
>Udall Act.  (Contact the Parkinson's Action Network for a copy of  "Full
>Funding for Parkinson's Research")
>
>-       The NIH currently plans to spend far less than $100 million on
>Parkinson's
>focused research in FY99.  The NIH says it will spend $106 million in FY 99 on
>Parkinson*s research but $62 million of that is allocated to "related"
>research that will not be spent on Parkinson's-focused grants as the Udall Act
>requires.
>
>-       Without Congressional action the NIH will spend most of the $100
>million
>required to fully fund the Udall Act on research not focused on Parkinson's.
>
>        FOLLOW UP AFTER MEETINGS
>-       If you have met with your legislators this year, you need to follow up
>regarding whatever promises, assurances or unanswered questions remain from
>your visits:
>
>-       Ensure that your legislators received the sample letters (contact the
>Parkinson's Action Network for copies) for them to send to the Appropriations
>Chairmen:  Senator Specter or Representative Porter.
>
>-       If your legislators agreed to send a letter to the Appropriations
>Chairmen,
>follow up to ensure a letter was in fact sent and ask them to send you a copy.
>
>-       If they did not agree to send or have not yet sent a letter, keep
>working on
>them to do so.  Persistence pays!  They also might be willing to speak
>personally with Chairmen Specter or Porter.
>
>-       If you have not already met with your legislator:
>
>-       Explain that although the Udall Act was passed in 1997, it has yet
>to be
>funded. Ask for their help in securing $100 million in funding for the Udall
>Act in FY99.
>
>-       Give your legislator the sample letters to the Appropriations Chairmen:
>Senator Specter or Representative Porter (contact the Parkinson's Action
>Network for copies) and ask that they send the letter to their Appropriations
>Chairman.
>
>-       If your legislator is not willing to send a letter to the
>Chairman, ask if
>they will speak personally with Chairmen Specter or Porter.
>
>BE PREPARED WITH ARGUMENTS
>-       Be prepared to respond to your legislator if they say that the NIH
>already
>spends close to $90 million on Parkinson*s research.
>
>-       The majority of funds currently spent by the NIH -- despite claims
>by the
>NIH -- are NOT spent on Parkinson's research.
>
>-       Key Parkinson's researchers are reviewing a list of grants that
>the NIH says
>it included in the $89 million spent on Parkinson's research in FY97.  This
>review is ongoing but the preliminary results confirm that most of the money
>was spent on grants for other diseases or non-specific research areas.
>
>-       Congress must live up to its commitment to fighting Parkinson's
>disease.
>
>-       Be sure to let us know the outcome of your meetings with your
>legislators.
>Call: 800-850-4726, email: [log in to unmask], or fax: 707- 544-2363.