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.