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continued from - Udall PAN important message 1 of 2- ---------------------------------------- As always, questions and comments should be referred to Michael Claeys at phone: (800) 850-4726, fax (707) 544-2363 email: [log in to unmask] or mail: 818 College Avenue, Suite C, Santa Rosa, CA 95404. I would now like to try to address some of the questions and concerns =96 but remember, this is only the first move in a chess match that will last into early October. We are better served to stay focused on our final goal than to get distracted by the movement of a few meaningless pawns. For reasons of time and space, I will try to be as brief and direct as possible. Phil Tomkins wrote: - "I do not understand some of the passages or phrases in the report. > The Committee is encouraged by the initiation of a > core center program and urges NINDS to expand the program. What is the core center program?" Late last year, the NINDS initiated a program to fund up to three "NINDS Parkinson=92s Disease Centers," which they may be referring to as "core centers." Each center grant is to be funded at up to $1 million per year, along with some other smaller grants. Although the description of the "centers" is similar, this program is NOT part of the Udall Act. We understand that the NINDS has received around 25 applications for Parkinson=92s Center grants. It is believed the evaluation of those applications will begin this week or next. It is important to note that these applications are very complex, and are submitted by established Parkinson=92s programs capable of conducting multidisciplinary research as well as clinical care. The large response (25 application for at most three grants) is further evidence of the intense interest in Parkinson=92s that is present in the research community. By urging NINDS to "expand the program" the Committee could be viewed as endorsing the funding of the Udall Centers authorized by the Udall Act. The key word is "urges," however. "The Committee urges" is not as binding as "the Committee directs" or "the Committee expects" would be. You can be assured that the language submitted to the committee was much stronger and more binding than that which ended up in the report. Phil Tomkins wrote: "> In addition, the Institute is urged to utilize all other available > mechanisms, as appropriate, including requests for applications, > program announcements, and extended funding of selected > investigators now working in the field, to further implement the > 1997 Morris K. Udall Parkinson's Research Act. What is meant by "further"? What has been implemented thus far?" I don=92t know. This is the subjective viewpoint of the Committee, and may mean something or nothing at all. Phil Tompkins wrote: "> The Committee requests NINDS to report on its progress in > implementing the Act at its fiscal year 2000 appropriations > hearing. Does the report have the same force of law as H.R.4274 will when it is enacted?" No. Report language has varying degrees of authority depending on how it=92s worded and the political power of those who want to see it followe= d through on. This language requesting a progress report is pretty binding because the NINDS testifies each year before the Congressional Appropriations Committees, who theoretically wrote this language, so NINDS will have to answer to it. Ivan Suzman asked the following numbered questions: 1. Who would be the "selected investigators?" They are the researchers whose grant applications are peer reviewed, scored and ultimately awarded by NIH. 2. What "working in the field" really means. Which "field?" The field of Parkinson=92s research, but it possible that could be open t= o some slight amount of interpretation. 3. Is HR 4274 REALLY a commitment to the COORDINATED research EARMARKED to curing Parkinson's......as SPECIFIED in Public Law 105-78, Section 409B, paragraphs (b) (1), (b) (2) and (c) (1) and (2) (the Morris K. Udall Parkinson's DIsease Research Act of 1997)? No. HR 4274 contains no specific reference to Parkinson=92s or the Udall Act. (And not for a lack of trying!) The accompanying report contains specific references, but as mentioned above report language can carry varying degrees of authority. 4. Does "extended" mean $100,000,000.00 at 10 new Core Centers for Parkinson's Research? Or is this only a vehicle for continuing, and SLO-O-WLY expanding current research not truly specifically earmarked for PD? No, it does not necessarily mean 10 new Udall Centers, although it could be interpreted that way if NINDS were inclined to do so. (Of course, the Udall Act does not specify, and certainly does not intend for all $100 million to be allocated to Centers.) As for the speed of the expansion, it=92s truly a fluid process =96 by which I mean political pow= er can have a dramatic impact on the funding level (i.e. speed of expansion)= . 5. What are the titles of the grant applications that have been funded so far? You can search the NIH=92s CRISP system, found at their website: www.nih.gov (I think that=92s it.) Or write to NIH. Or better still, have your Member of Congress do it. That=92s what we did. We had Rep. Fred Upton ask NIH for the list of grants encompassing NIH=92s Parkinson= =92s research program for 1997. After lots of effort, Rep. Upton finally got the list. That 1997 NIH list has been distributed to a group of top Parkinson=92s researchers in order for them to evaluate how "focused on Parkinson=92s" the grants on the list are. The initial results suggest that a large number of the grants NIH classifies as Parkinson=92s researc= h are in fact not focused on Parkinson=92s. A much more complete and thorough analysis of the grant list is underway and will be ready before the Senate Labor/HHS Subcommittee action in September. We intend to use this evidence to further demonstrate the need for a strong Congressional directive to NIH to follow through on the promise to fund the Udall Act. 6. I hope we are not talking about neurological work on the brain in general, which might have a beneficial impact on curing Parkinson's, er, um, maybe in the year 2017...two hundred unenlightened years after Dr. James Parkinson's 1817 description of our still incurable malady! See above for how action and the NIH=92s own information (rather than sarcasm) is being used to address this problem. 7. All of these questions need to be discussed, debated and answered, BEFORE the September floor debates occur in Washington. Although trying to be hopeful, should I feel more than a little TERRIFIED that we might spend another HORRIBLE year on the margins of Congress, faintly being patronized by politicians, and eventually being left grossly underfunded? Discussion and debate are fine, but they don=92t take the place of action. Your questions are valid, and we will do our best to answer them and keep providing information and direction. I also want to say that it=92s ok to be afraid =96 it=92s possible that we could do everythi= ng right and Congress could still leave us out in the cold. (Not at all likely, but possible.) The surest way they will ignore us, though, is if we allow ourselves to become paralyzed by fear or negative feelings and do nothing. 8. Do we need a Plan B?? Could funding the Udall LAW be debated by inserting an AMENDMENT on OTHER current bills in Washington? What if HR 4274 is undercut to the point where it hardly changes anything beyond a cost-of-living increase?? Is it risky to have all our eggs in one basket?= ? HR 4274 is not even our most likely basket. Remember the Senate=92s bill. That will likely be a much better basket. And you can be assured we keep our options open and will always search for the best possible way= to=0Aachieve our goal. Lots of interesting things happen at the end of a Congressional session =96 especially in an election year. If you have any suggestions please let us know. Please also know that we are in constant contact with a variety of experienced, savvy and dedicated people on and around Capitol Hill. These trusted advisors are also committed to eradicating Parkinson=92s, and we rely on their insight and counsel to craft our strategy. The worst thing that can happen, however, is to miss the forest for the trees. As grassroots activist the best thing we can do is constantly, consistently, credibly and creatively deliver our message to Congress. We have to use our power as citizens, friends, neighbors and voters to develop our Senators and Representatives into Parkinson=92s champions. Once enough Members of Congress are committed to helping us realize our goal, they will figure out the way. Until then, we have to push, push, push as hard and as smart as we can. 9 .I don't see that we PWP's have anything at all to lose by having plan B--so that the Udall LAW has no chance of being left aside. PWA's make LOTS of noise-and AIDS gets $2400 million per year. We have to learn to be NOISIER, too, don't we?? Yes. Noisier, more politically-savvy and more media-savvy. AIDS activists are good role models for learning how to use the political system and the media to raise awareness and assist our effort. Darwin Hawkins wrote: "Here's a 10th question/comment to add to your list of 9 questions previously posted. > > The Committee requests NINDS to report on its progress in > > implementing the Act at its fiscal year 2000 appropriations > > hearing. > Is it going to take a year to show any "progress" in "implementing" the Act? How long does it take to get started? (Whoops, two questions!) i.e., When a law is put on the books, usually the police start issuing tickets immediately. The requirements of the Udall Act are pretty clear." That=92s true, but doling out research grants is a little more complicate= d than doling our speeding tickets. Allowing for some exceptions, it goes kind of like this: First NIH has to get the money from Congress. Then they advertise that t= hey=0Awant grant applications of a certain type. Then they have to give = the=0Aresearchers a little time to write and submit their applications. = Then the=0Aapplications need to be reviewed, scored for merit and ranked = before they are=0Afunding. And I think there may be an appeal or resubmi= ssion process for=0Agrants not awarded the first time through. It takes = time, but those steps are=0Anecessary to ensure that quality projects are= funded and the scarce research=0Adollars aren=92t wasted. (Again, I=92m= not saying this is a perfect system, but=0Athat=92s roughly the system w= e have.) Darwin Hawkins wrote: "Nowhere in the report does it say that $100,000,000 is to be appropriated and used exclusively toward Parkinson's research. The ball is in the committee's court to properly fund the Act." That=92s true. The report contains no direct earmarks for any diseases, and it is in large part up to the House and Senate Committee and Subcommittee members to oversee a real and substantial increase in Parkinson=92s research funding. But that=92s why it=92s so important to = have a potent combination of active grassroots people in each of the Committee and Subcommittee members=92 states and districts, active scientists testifying about the research potential, and political professionals who understand the system, can work on the inside and also guide the whole strategy. It=92s a team effort, and we all have importan= t roles=0Ato play. Darwin Hawkins wrote: "Until that is accomplished, the progress reports are only going to be so much "hot air". Progress reports are important because they tell Congress if the NIH is following through on the instructions Congress has given them. And Congress doesn=92t like it when it=92s instructions are not followed. Th= e Udall Act just passed last year (and there was also report language in last year=92s Labor/HHS report) so this year is our first opportunity to show how the clear Congressional mandate for an increased and expanded Parkinson=92s research program is not being addressed. And remember, we=92ve also got the first tangible list of NIH=92s so-called Parkinson= =92s grants from 1997 (the 1998 list won=92t be available until next year). That is another potentially big piece of leverage for us to use. Darwin Hawkins wrote: "I would think that the Committee and the NINDS would be in violation of the act if they did anything other than what it specifies." It=92s understandable to think that, but the Udall Act is by design only an authorization act =96 is just authorizes that the money be spent, but doesn=92t make it illegal not to spend it. In fact, there are even occasions when appropriated funds that go unspent =96 but no sense gettin= g into=0Athat now=85 Darwin Hawkins wrote: "Let's hold their feet to the fire." Amen. In closing I just want to repeat a couple of things. Before this year=92sLabor/HHS bill is passed, and before we know for sure= the=0Afinal outcome of the Parkinson=92s research funding instructions f= or 1999, there=0Aare going to be a lot of twists and turns and ups and do= wn. The Labor/HHS=0Abill is a huge, complex and very contentious piece o= f legislation. It is=0Agoing to be an election year political football p= ushed, pulled, punched and=0Akicked all around the playing field. While it=92s important to know what=92s going on, we can=92t allow oursel= ves to get caught up in the rhetoric and bombast of election year politics. We have to stay focused on our goal =96 fully funding the Udall Act =96 a= nd not let ourselves get distracted by the obstacles and roadblocks sure to be thrown up along the way. We=92re in a 10 or 12 week marathon, and we have to run hard all the way through the finish line. As always, questions and comments should be referred to Michael Claeys at phone: (800) 850-4726, fax (707) 544-2363 email: [log in to unmask] or mail: 818 College Avenue, Suite C, Santa Rosa, CA 95404.