Effective advocacy

[cordy@xxxxxxxxxxxx]

while in D.C. last week supporting the Udall Bill I realized some of
the newer advocates needed some training.  With Congressmen and
Senators in their home districts next week, it is an ideal time for
you to contacted (see) them.  If they are not cosponsors, they need
to be convinced.  If they are cosponsors, they need to be reminded
we're still here, thanked for their support and asked how they can
help us get this legislation passes now that we have the cosponsors.

Here's some tips:
1)  we need to hear them say he word "cosponsors" not simply I'm
supportive of medical research.
2)  keep it simple and repeat the message again and again--"fund
Parkinson's on a level comparable to other diseases, a cure is close
and with that are tremendous economic benefits".  Attached is a
handout I use.
3)  the thing that distinguished Parkinson's from other diseases
lobbying Congress is a cure is close (by cure I include a new
effective treatment)
4) There is a huge funding disparity between Parkinson's and other
disease research funding

Three Points for the
Udall Bill
This legislation would correct research funding
inequities providing $100 million per year for
Parkinson's Disease research.  Given the
current level of scientific understanding, such an
infusion of funds is likely to result in a major
breakthrough if not a cure.

Major Points:

1) A Devastating Disease - Parkinson's
Disease is a incapacitating, degenerative
disease causing untold suffering not only to
the 1.5 million patients but also their family.
Although medications can be effective for
many during the early stages, the specter of
years in a nursing home looms for all those
afflicted.

2) Breakthrough Potential - The
neuroscientists uniformly agree we know
more about Parkinson's Disease than any
other neurological affliction.  Most think
another major breakthrough is near, possibly
even a cure.  Some think a cure is possible
by the end of this decade.  What would be
the public's response if scientists said they
could cure cancer in five years?

3) The Cure is Cheaper than the Care - It
makes sense to spend $100 million/year for
five years or so to save $25 billion/year. In
fact it is cost effective legislation such as this
bill which are key to any long term hopes of
balancing the budget. Conservative estimates
of Parkinson's Disease costs to society (lost
wages, disability benefits, medical costs,
nursing home care) are over $6 billion/year.
More recent calculations suggest that number
may be as high as $25 billion/year.

Status: Senator Hatfield described the support that the Parkinson's community 
has assembled for the Morris K. Udall Parkinson's Research, Education, and 
Assistance Act since introduction in April of 1995 as impressive.  That support 
includes 50 Senators
(
12 of 16 on the Labor and
Human Resources Committee where the bill was assigned) and 190 Members of the 
House as cosponsors(expect to have 220 in House by July). The stage is set for 
passage of this bill in 1996.  Passage in 1996 is crucial as at least
seven strong supporters in the Senate (Hatfield, Simpson, Simon, Pryor, Cohen, 
Bradley and Pell) have all announced they will not run again.

A national campaign is underway to pass the Udall Bill in 996.  The National 
Parkinson's Disease organizations are encouraging a grassroots effort to inform 
our elected
officials of the status of Parkinson's Disease research (under funded and 
poised for a breakthrough). One goal of this initiative is to have one person 
with Parkinson's meet with
every Senator and Representative.  We have a compelling case and when presented 
personally the overwhelming majority of legislators contacted have agreed to 
cosponsor.

Other Issues
        Three Points,  Page 2

Human Fetal Tissue - Of those few who will  not
cosponsor, the most common objection is the belief that Parkinson's research is 
primarily in the area of human fetal tissue.  However, many cosponsors are 
Right to Life supporters (including Chris Smith of NJ) who have
maintained an open mind, reviewed the facts and ignored hysterical rhetoric.  
The facts are:
1)  The Udall Bill does not mention human fetal tissue transplants.
2)  Less than 4% of Parkinson's Disease research involves fetal tissue 
transplants and even less than that is human fetal tissue.
3) Even those involved with fetal tissue research readily acknowledge that the 
result of their research will not use human fetal tissue.  Current work is 
intended only to demonstrate the capability.  Ultimately another source of 
fetal material must be fo
u
nd.
4) Legislation introduced by Upton enacts several prison penalties regarding 
unethical use of human fetal tissue.  The end result is this legislation 
removes any incentive to have even one more abortion associated with fetal
tissue research.

Announcements by Attorney General
Reno, Congressman McDade and Senator
Pell that they have parkinson's - have heightened the general awareness and 
support
for increased research.

Speaker of the House, Newt Gingrich, has
endorsed increased research funding. "- the number one domestic priority I 
think we have is our biological and other scientific research.  It's what makes 
this country the leader
in the world, and we are doing everything we can to scrape together every penny 
for science.  I think it would be very healthy to have a scientific panel that 
every two years
reviewed the whole scale of breakthrough and if this panel said `Look, we have 
a real shot at Parkinson's Disease over here.'  Let's put the extra resources 
there ..."
                                   -  Newt Gingrich, from the Charlie
Rose talk show July 1995

 Senator  Santorum Visits the University
of Pittsburgh - Senator Santorum visited the
Parkinson's Disease research laboratories at the University of Pittsburgh on 
January 18,1996.  He promised active support of the Udall Bill so that research 
in this area can not only continue but increase.

Congressional Ear Marking (Targeted Research) - Clearly Congress should not be 
involved in
the day to day decision making of NIH, but it's entirely appropriate, and one 
could argue their responsibility, to establish broad direction and to modify 
existing initiatives of NIH should they not be in agreement with the mandate of
the people they were elected to represent..  Congress has the facility to call 
witnesses outside of NIH to either verify or refute the validity of arguments 
such as the Parkinson's
community offers that a cure/effective treatment is close.  The danger of 
allowing these decisions to be made solely by NIH is that various groups within 
NIH becomes "institutionalized" and perpetual their own existence.