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Date: Friday, April 10, 1998 3:06:36 PM From: [log in to unmask] Michael Claeys Community Outreach Coordinator Parkinson's Action Network "I would like to respond to the April 9 message from HEIT BILL. Let me state from the outset that my intention is not to be critical of HEIT BILL's message, but rather to offer a little different--and more positive--view of the prospects for funding the Udall Act. When reading HEIT BILL's message it seemed to me that others reading it might get an overly negative view of those prospects and of the ability of the Parkinson's community to influence the Congressional Appropriations and NIH disease research funding processes. I should also add that I worked on Capitol Hill in Congressional offices for close to five years, and therefore am very familiar with letters like those quoted from Maine's Senators--I've written thousands of them. The Senators did not write those letters--they may not have even seen them. While they do represent the Senators' views, they were written by staffers, and they do not necessarily represent the Senators' final words on the issue. Through additional information and effective lobbying, there is almost always room to change or modify both Senators' and staffers' views on an issue as relatively obscure (to most of them) as research funding for Parkinson's disease. HEIT BILL quote one of the Maine Senators as having written, "However, while the bill authorized the National Institutes of Health to spend $100 million on Parkinson's research and education, appropriations bills generally do not provide line item funding for disease-specific research. Instead, In the final report on the appropriations bill, the conference committee stated that it was their understanding from NIH that sufficient funds were available within the amounts provided in the Institute's FY 1998 budget to expand research on Parkinson's. In fact, the projected spending on Parkinson's research for FY 1998 is estimated at $98.5 million." HEIT BILL then goes on to translate: "1. We don't do specific bills on specific diseases, [implied that what we are asking is out of line-perhaps it is]." What the Parkinson's community is asking for IS NOT OUT OF LINE! What we are asking for is LONG OVERDUE! Congress has done and continues to do specific funding measures for specific diseases. They just don't like to admit it because it opens them up to criticism and added pressure from those groups they haven't helped. By passing the Udall Act, Congress and the President acknowledged that Parkinson's research deserves more funding--now they just need to go the next step and actually cough up the money. NIH does have enough money to fully fund the Udall Act, but they are unlikely to do it unless Congress specifically directs them to. It's our job to make sure Congress give them that direction. At the end of the message, HEIT BILL lists problems: "1 Neither Senator plans to vote to support spending on the Mo." There is no reason to believe this. First of all, neither Maine Senator is on the Appropriations Committee, and therefore is unlikely to have a direct vote Parkinson's research spending. These Senators will likely only get a chance to vote on the entire Labor/HHS Appropriations bill for fiscal year 1999--a huge and complex bill that will include an enormous amount of other funding provisions for health programs, education programs, the Labor Department and many others. "2 We are asking for something special." This is true, but as I mentioned before, this is not necessarily unusual, "out of line" or without precedent. The Udall Act calls for something special--and it passed by an overwhelming margin. Funding it is the next logical step, and while getting those funds won't be easy, it will be done. "3 We have enough division in our ranks to not be truly united" This is a particularly troublesome statement as it only reinforces the "problem." There was sufficient unity to pass the Udall Act, and there is unquestionably more communication and cooperation this year, so I am very confident we can get the needed appropriations. "4 They passed the Mo last year, but are in no hurry to spend on it." This is true, but it should serve as a rallying cry rather than a death nell. It is up to us to demonstrate the sense of urgency we feel and to instill it in our Congressional representatives. "5 They will respond with $100,000,000 only after we demonstrate ourselves capable of massive amounts of the crudest type of political pressure." Welcome to democracy. Again this statement should be our rallying cry. The type of grassroots advocacy that the Parkinson's community has employed is what our political system should be all about: taxpayers petitioning their government on how they'd like their tax dollars spent. By "crudest" I assume that HEIT BILL means "simplest or "most fundamental," because our system is designed to work from the ground up. What is really crude--in the negative sense of the word--is when big campaign contributions result in policies that are not in the national interest. For many reasons, Parkinson's research is most definitly in the best interest of our country; and since we in the community are the experts, it is our responsibility to educate our representatives and our fellow citizens. We intend to continue that work until a cure is found and made available. Please direct any questions, comments or request to: Michael Claeys Community Outreach Coordinator Parkinson's Action Network 818 College Avenue, Suite C Santa Rosa, CA 95404 (800) 850-4726 [log in to unmask] ----------------------- Headers -------------------------------- Return-Path: <[log in to unmask]> Date: Fri, 10 Apr 1998 12:06:35 -0700 From: "Parkinson's Action Network" <[log in to unmask]> Reply-To: [log in to unmask] Organization: Parkinson's Action Network