RTK.NET Mail 111239 Jan 2 23:02:07 1996 I realized after sending my last message to the list that I should have introduced myself. I'm Sherri Cave. A professor who has had a really great impact on me has Parkinson's disease. I began reading this list to learn more about the disease and about what I could do to help efforts to bring greater investments in Parkinson's research, particularly lobbying to get the Udall bill passed. I've learned a lot here, and have met some really wonderful people. A few days before Christmas I asked about what Nancy Kassebaum's objections to the Udall bill were based on. Pat Schark answered some of my questions, and I also found a more exact quote from one of her response letters to a constituent in the archives. From talking to other activists and reading the archives, I get the impression that few people are _exactly_ sure what she is talking about. Although I don't live in Kansas, I plan to write her asking some of the questions I included here, and I thought that others might wish to do the same. I certainly welcome corrections if I'm putting out any misinformation here. It's quite possible I'm misreading the Udall bill and ignorant of much of the history of discussion about it.> > > >Sherri, > >The "overhead" that Kassebaum objects to refers to the administrative >costs built into the provisions for the establishment of 10 Udall >Parkinson's research centers nationwide, This was the source of "overhead" that was in the letter from Kassebaum I found in the archives. I believe her claim was even stronger, saying that _most_ of the money appropriated in the bill would not go to Parkinson's research. The Appropriations section of S.684 states that in FY 96 not more than 10 million of the 100 million appropriated for the general purposes of the bill can go to the not more than 10 Udall research centers. The bill clearly states that the centers will use existing facilities which must be conducting basic and clinical research and providing patient care. Some of the money can support other programs: training programs for health professionals, public education, and maintaining a brain bank where appropriate. If Kassebaum is assuming that the $10 million in core center grants will not be funding research, I believe she is reading the bill inaccurately. It's more correct to say that a significant portion of the money will not be used to fund research at _NIH_! Although she probably won't answer me, I plan to ask Kassebaum what part of the $10 million directed to the core centers she objects to. Is it the "development of innovative multidisciplinary research?" Is she opposed to using some of this $10 million for patient services? Is she opposed to the training programs for health workers?--It might be helpful to tell her more about the need for this.--What percentage of hospital medical staff know about the dangerous interaction of Eldepryl and Demerol? Continued lack of information among health professions has serious human and economic costs, too....okay, next item.... the Morris K. Udall Research >Excellence Awards and training grants from the bill under subsection (e) Morris K. Udall Leadership and Excellence Awards..."Grants under this subsection shall be utilized to enable established investigators to devote greater time and resources in laboratories to conduct research on Parkinson's and to encourage the development of a new generation of investigators..." Hmm...is it just me, or does that sound a lot like money used to support research? The amount of money used to fund this isn't spelled out in the version before the Senate now. In the earlier version of the Udall bill (the one that was brought before the 103rd congress) it was allotted 10 million for FY 96 and ramped up in succeeding years, but not as much as the core center grants were. I'm curious about the differences in the Appropriations sections between the versions of the bill before the two different congresses if anyone can enlighten me. , a national Parkinson's education >program (why do we need to educate about pd if we're going to eradicate >it?), and a national directory of Parkinson's patients. I think we could make a case for the education programs, but I'd first ask how much she thinks it's going to cost? The only 2 items that were alloted more than 5 million in FY '96 in the older bill (other than the NIH administered research money, of course) were the core center grants and the excellence awards. Given that we're talking about a million dollars here, which is a small enough amount in government appropriations anyway, a million or two for education is hardly a large enough amount of "overhead" to convince a caring and fiscally responsible leader not to support the Udall bill, is it? The national directory is, at least as I see it, a pretty important research tool, particularly when looking at causes or risk factors. We don't even have a very clear idea of how many people have Parkinson's in the U.S. These programs >will require administrators, and that's where the old pork comes in. I've been pretty impressed with the bill as I've looked through it more closely than I had before. There is some flexibility, because flexibility may be the best way to develop new treatments, assess their success rates, learn more about Parkinson's, and make sure that the best treatments advancements are available to patients as soon as possible. And think of all the old Udall bill activists who will be following how the research money they worked for is being spent! We >can argue for the usefulness of some or all of this, or suggest >streamlining the bill through amendments, but I suspect the vested >interests might then refuse to support it. I'm just speculating on what >the problem might be. > >Pat I'm just speculating, too, of course. I think we just need to keep telling more people about it. And when people refuse to sign on as co-sponsors, we need to ask them why and expect answers. One of the best ways to make sure you get a little more attention on the second try is to ask some questions that the legislator almost certainly does not have a form letter response for. Hopefully there are a few buried in this monstrously long message somewhere! Sherri [log in to unmask] > >