Jim:
I have read the draft NIH plan, and I am also quite excited about the real
commitment to PD research that the plan represents. I also agree that the
strong positive and visionary leadership of Gerry Fischbach has been a
godsend for PD research (he really believes that we can solve PD). The
relationships we have developed in the past year with Gerry Fischbach, Ken
Olden (NIEHS) and other agencies (e.g., NIA, NIMH, CDC) have been key to our
accelerating success in obtaining research funding. Also important in our
success has been the increased cooperation among PD organizations, which has
also been reinforced by leadership from Dr. Fischbach.
I do not think our work is done yet, however. Hang on to that baton, Jim. We
still need you and all the "wonderful PD advocates" (as Gerry Fischbach
described me when he introduced me to his wife) who speak out to their
elected officials. The political support that you and I and every one of our
increasingly powerful "grass roots" advocates provide is essential to assure
continued Federal funding for PD. The ideas and concerns we provide are also
critical to assure that the funding is directed toward new knowledge AND
translating knowledge into delivery of effective treatments to the
population.
Jim, you have played a role at the Univ. of Pittsburgh to ask the question
"what does this research do for PWP?" We need advocates to ask such
questions at every research center as well as at the NIH and other public
agencies
For example, I have been particularly interested in promoting additional
clinical research to test and implement new treatments for today's PWP,
including surveillance of the problems of PD and the utilization of the most
effective treatments. We do not know how many people have PD or how the
incidence is changing over time. We do not know the proportions of PWP who
are misdiagnosed or not diagnosed (some small studies show 25% to 40%
undiagnosed). We do not know how many PWP see a PD specialist or whether
that makes a difference. (for further information on the status of PD
delivery in the US see: www.parkinsonscare.org/pdstatus.html).
NINDS is the lead agency for PD research but it has traditionally been a
basic science oriented agency with limited resources devoted to service
delivery clinical research and population studies. Dr. Fischbach was not
familiar with this area of research a year ago, but he has an open mind. I
have met with government officials at Centers for Disease Control (CDC) and
the Agency for Healthcare Research and Quality (AHRQ) to encourage work on PD
and collaboration and I have raised delivery of care issues among PD
advocates as well. I am pleased that outcomes research and quality of care
issues are on the NIH agenda.
PD advocacy is needed for other quality, access and healthcare delivery
issues of concern to PWP. Two examples:
-- Medicare caps on reimbursement for rehab services severely limit access to
physical therapy, occupational therapy and other beneficial services.
-- The increasing use of caps on perscription drug benefits by health
insurers, for those lucky enough to have coverage, have a major impact on PWP
(see www.parkinsonscare.org/washpost.htm).
We have demonstrated the strength of the grass roots PD advocacy movement,
and we have added to our strength by the increased cooperation and
coordination among PD organizations. Jim, remember when the Udall bill
passed, I told you, on a scale of 1 to 100 collaboration among PD
organizations was about 35 (up from 5). Well, now after a dip down in 1998, I
would say this past 6 months we are up to maybe 55 or 60. We are moving in
the right direction but there is quite a ways to go. Vocal grass roots
support for greater communication and collaboration among PD organizations,
setting aside parochial interests, can help us enhance our strength further.
So let's all hang on to that baton, we have lots of work to do. Even if the
cure was found tomorrow, it is not a given that it will be accessible to all
PWP. Let's keep service delivery issues on the table for our policy agenda.
------------
To: [log in to unmask]
Subject: Passing the baton
From: Jim Cordy <[log in to unmask]>
Date: Sat, 29 Jan 2000 22:19:57 -0500
Importance: Normal
Reply-To: "Parkinson's Information Exchange Network"
<[log in to unmask]>
Sender: "Parkinson's Information Exchange Network"
<[log in to unmask]>
Champagne for the ceremony. I wish we were altogether in one place to have
an official passing of the baton from the advocates to the scientists. What
kind of gibberish is Cordy talking now. I will fess up to being a little
euphoric. But we have climbed the mountain and there before us lies the
cure for Parkinson's disease. I believe this from the bottom of my heart,
if we get the scientists the money they will cure to dam disease, and faster
than anyone thought possible. What caused this burst of euphoria?
I have just read the draft of the NIH report to Congress "Parkinson's
Research Agenda, 2000 -- 2005" . It truly is a blueprint for curing
Parkinson's. I'm going to buy a case of champagne so that every time I see
one of my fellow advocates we can have a toast to our success.
First we did the impossible in passing the Udall bill.
Second we play a major role in obtaining NIH's record $2 billion increase
each of the last two years.
Third, we have developed a very positive relationship with NIH, and NINDS
(and its Director Jerry Fischbach)
We have only one thing left to do as we pass the baton to the scientists,
and that's to make sure:
"we have the best scientists doing the best research"
That should be our motto in 2000
We need to keep fund-raising money and almost as importantly continue to
raise awareness. In particular we have to target our research hospitals and
universities. The pitch there should be "there is money in NIH for any
valid Parkinson's research initiatives". I thought that the
