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Date: Tuesday, April 14, 1998 1:45:55 PM From: [log in to unmask] Michael Claeys Community Outreach Coordinator Parkinson's Action Network (800) 850-4726 I would like to comment on the April 13 message from Ken Becker, as I think he expresses views probably held by a lot of people in the Parkinson's community and US public as a whole. He wrote: "Margaret, I am interested in the cure for Parkinson's as well as ALL the diseases that cause what should be the best years of life to become a time of suffering, pain, and discomfort. I am not a rocket scientist, but if we have about 250 million people in the U.S. each 100 million dollars needed to cure each disease would cost each of us less than one cup of coffee a YEAR! ...........So if I had to give up coffee for a week, in exchange for a cure for Parkinson's , Alzheimers, cancer, heart disease, diabetes, etc, I would be willing to do that. Am I missing something? I may have oversimplified the situation, but I don't think so! [log in to unmask]" While Mr. Becker's general sentiment is right on the money, he has oversimplified things in several important respects. First of all, $100 million is the figure the Udall Act authorizes for research in 1998 to hasten the discovery of a cure or vastly more effective treatment for Parkinson's disease. No one in the Pd community, that I am aware of, is willing to state that $100 million--or even the full $300 million, and potentially more, authorized by Udall--will "cure" Parkinson's. It's just an informed statement that a significantly higher investment in Pd research will very like result in significantly improved therapies in the near future. There is even more uncertainty for other diseases. There is no assurance--or even any indication--that a one-time $100 investment will cure any disease. Hundreds of millions, and in some cases, many billions of dollars have been spent on research into various diseases without producing a cure. This is not said to be negative, just realistic. We are continuing to work very hard to see that the Udall Act receives full funding as soon as possible because we believe that given additional resources, Parkinson's researchers will achieve the long-awaited breakthrough--and do so soon. Additionally, we believe that doubling the budget of the NIH will not only help speed the discovery of the Parkinson's cure, but will also help millions of ailing people in this country and around the world. It will also help lesson the cruel zero-sum-game currentl going on where advocates for individual diseases are forced to compete for scarce federal research funds. These are our tax dollars we are talking about, and we have every right to have a voice in how they are spent. It's about making medical research a higher priority. One final note--Mr. Becker represents the views of most Americans when he offeres to make a small sacrifice to support increased medical research. Poll after poll shows that a majority of Americans are willing to see cuts in other programs, and even pay higher taxes, if they know that money is going for medical research. ************* I also want to commend Phil Tomkins on his April 14 message detailing current legislation aimed at doubling or otherwise increasing the budget of the NIH, and try to clear up a little of the confusion he expressed. The President's budget request--introduced following the State of the Union Address--is typically the starting point of the debate on the federal budget for the next fiscal year. The House and Senate each pass their own version of a budget, crafted with an eye towards the others, but really determined by the different priorities and political realities in each body. Each of these three versions of the budget could potentially influence Parkinson's research funding, but what really matters is the final budget which evolves from the three versions and is able to pass the House and Senate and be accepted by the President. There is still a long way to go in the fiscal year 1999 budget process. The President has submitted his budget request. It includes a large increase in the NIH budget, although no specific mention of Parkinson's funding. However, his increase is to be paid for with moneys derived from a settlement with the tobacco companies--and as anyone who has been watching the news knows, such an agreement is far from wrapped up. The House and Senate are still working on their fiscal year 1999 budgets--and will be for some time. The ongoing grassroots lobbying efforts and the June 14-17 Public Policy Forum in Washington, DC are intended to influence the House and Senate as their budget deliberations proceed. The "budget resolution" that passed the Senate, S.Con.Res.86, is what's called a concurrent resolution, which means its legislation expressing only an opinion or "sense of the Congress," it is a non-binding piece of legislation. That is not to say it is without meaning, but it is not the actual budget with actual, final numbers to be paid for with real money. As noted below in an exerpt from the Thomas Page, it "sets forth" the budget for the next five years, which really is just a statement of what the authors and supporters would like to see prioritized in the next five budgets. Unforseen events and political realities will very likely produce budgets that are significantly different. "S.CON.RES.86: An original concurrent resolution setting forth the congressional budget for the United States Government for fiscal years 1999, 2000, 2001, 2002, and 2003 and revising the concurrent resolution on the budget for fiscal year 1998. Sponsor: Sen Domenici .- LATEST ACTION: 04/02/98 Measure passed Senate, amended, roll call #84 (57-41)" So, while we should be aware of this action taken by the Senate, we also need to stay focused on the fact that the real fiscal year 1999 budget is still being crafted--and will be for the next several months--and is still able to be influenced by the Parkinson's community. Please refer any questions, comments or requests to: Michael Claeys Community Outreach Coordinator Parkinson's Action Network (800) 850-4726 [log in to unmask]