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from Mike Claeys, Parkinsons Action Network =93To Contact or Not To Contact is Not Really the Question... The question is what to say when contacting you Senators. Ivan Suzman raised an important question about contacting Senator Arlen Specter, Chair of the Senate=92s Labor-HHS Appropriations Subcommittee. I have spoken with Bill Turenne regarding the recent reports from both NPF and PAN, and we are in total agreement in regretting any confusion they may have caused to those people in the community who have worked so hard for so long. Similarly, we and our respective organizations share agreement in our determination to do everything we can to ensure that the maximum possible benefit to the Parkinson=92s community results from this Congressional cycle. Most of the time, the rush to get information to out to the community prevents us from comparing notes with each other about the exact content of our respective publications. Usually this present no problems, but occasionally even complementary messages can cause some confusion. Senator Specter in indeed one of the strongest advocates for increased federal medical research funding. Referring to the NIH as =93the crown jewel of the federal government,=94 Senator Specter doggedly fights for substantial increases in their annual budgets. He has also been supportive of Parkinson=92s disease research, was a cosponsor of the Udall bill and was instrumental in its passage last year. This year, he has worked with the Parkinson=92s community and included report language with his Subcommittee=92s fiscal year 1999 Labor-HHS Appropriations bill that can honestly be called the best Parkinson=92s disease has ever received. For all this he deserves our sincere gratitude and respect. However, the Parkinson=92s Action Network has recently released the findings of an analysis of all the research grants included in NIH=92s 1997 Parkinson=92s research program. The analysis was conducted by a diverse group of top Parkinson=92s researchers from a variety of different institutions across the country. Their results show that only 38% of the money NIH claims went to Parkinson=92s research was truly Parkinson=92s-focused research. (The Udall Act authorizes funding for =93research focused on Parkinson=92s disease.=94) The study also found th= at 35% of the funding would have not impact on treating or curing Parkinson=92s! The researchers indicated that the remaining 27% could have some related impact in the pursuit of answers about the disease. Unfortunately, this analysis has just been completed and was not available either to Senator Specter when the report language was crafted or to Bill Turenne when he made his recent Listserve posting. In light of this shocking and revealing information, we have grave concerns whether the report language as written will be directive enough to truly fulfill the mandate of the Udall Act. Further, it is expected that Congressional supporters of Parkinson=92s research will want to take some action before the end of this year=92s session to address this problem. Due to the current uncertainty surrounding the fate of the Labor-HHS Appropriations bill, it is very difficult to predict exactly what action will yield the best results. The political climate and Congressional schedule are very dynamic, and likely to stay that way during the remaining weeks in the session. What the community can do is contact your Senators, put them on notice of the problem with NIH =93padding=94 th= e amount of Parkinson=92s research it is conducting, and urge them to take whatever appropriate action they can to address this problem THIS YEAR! (Please see the =93Telephone Script=94 below for suggestions on exactly wh= at to say to your Senators.) Bill Turenne is correct in that no one in the Parkinson=92s community should contact Senator Specter (or any other Senator) and criticize them for the NIH funding problem. They have a great many issues before them, and even though they are supportive they can=92t be expected to be as focused on Parkinson=92s as we are. We should always show our appreciation for their past and continued support. Of course, it is also the responsibility of Parkinson=92s community to inform Congress of this serious situation, and urge them to take some action to correct it. The Senators and staff that PAN employees have met with expressed appreciation for this information being brought to their attention, concern about the findings, and willingness to help. Contact with Members of Congress and staff should always be respectful and courteous, but it is fully appropriate to express dismay at the performance of the NIH and to express the strong sense of urgency that we all feel about tackling this problem in order to cure Parkinson=92s disease. If you are from Pennsylvania, you should by all means be contacting Senator Specter. After all, he=92ll be asking for your vote in November, why not ask him for his continued support now? Please refer any questions or comments to Michael Claeys at (202) 628-2079, or email to [log in to unmask] Please use the telephone script below to contact your Senators, and share the results of your contact with PAN. TELEPHONE SCRIPT Hello, my name is ____________ from ______________. I am calling to ask Senator __________ to make sure the Senate appropriates $100 million for Parkinson=92s-focused research when the 1999 Labor-HHS Appropriations bill goes to the Senate floor. This is important to me because=85. (briefly describe your connection to Parkinson=92s, and its devastating impact on you/your family =96 convey yo= ur sense of urgency!) As a supporter of the Morris K. Udall Parkinson=92s Research Act of 1997, Senator __________ needs to know that a group of key Parkinson=92s researchers have just found that most of the money NIH claims is spent on Parkinson=92s will in fact have little or no impact on it. The researchers reviewed the actual grants the NIH counted as =93Parkinson=92s,=94 and found the NIH is =93padding=94 the total with $6= 7 million in grants not focused to Parkinson=92s. This means that only about $40 million will be spent on Parkinson=92s-focused research in 1999. This is only $3 million more in real Parkinson=92s research than last year. The Senate Labor-HHS Appropriations report includes nice-sounding language about the Udall Act, but it does not correct the problem. In light of this new information, Congress must direct the NIH to fund the Udall Act. We in the Parkinson=92s community expect there to be action addressing this problem when the Labor-HHS Appropriations bill is considered on the Senate floor. On behalf of my family and friends, I urge Senator ___________ to support this floor action and help ensure that at least $100 million in Parkinson=92s-focused research is included in the 1999 Labor-HHS Appropriations bill. Thank you for your time. I will be contacting you again when the Labor-HHS bill goes to the Senate floor. (If questions arise that you aren=92t comfortable answering, or the staff person wants more information, ask them to contact Michael Claeys of the Parkinson=92s Action Network at 202-628-2079.)