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-----Oorspronkelijk bericht----- Van: Arthur Hirsch <[log in to unmask]> Aan: [log in to unmask] <[log in to unmask]> Datum: zaterdag 10 juli 1999 22:40 Onderwerp: PAN Forum report >> I have written a report on the PAN Forum for my sponsors, and have posted it on my website at: http://www.fortunecity.com/meltingpot/farley/817/advocacy.html << Here it comes!! Hans. ======================= After attending the PAN (Parkinson's Action Network) Public Policy Forum in late June, 1999, I wrote the following article, which pretty well sums up, in my mind, the current status of advocacy in the United States as of that time. Parkinson's Action Network 6th Annual Public Policy Forum Raising our Voices for a Cure Washington, DC - 27-30 June, 1999 The Dana Alliance for Brain Initiatives, highly respected in Congress, has proclaimed that Parkinson's will likely be the first of the neurological diseases to be cured and that from the cure for Parkinson's they will develop the cures for other neurological diseases - possibly including Alzheimer's, Huntington's, and many others. If there be no other reason, this alone is reason enough to fully fund Parkinson's research as enacted into law as a part of the Udall bill. But full funding of the $100 million has not yet happened. NINDS (National Institute of Neurological Diseases and Stroke), which receives about 2/3 of the funds for Parkinson's research, was asked to show how this funding is distributed. They produced a list of projects funded in 1998 that totals $73 million. Scrutiny of these projects by a group of scientists eminent in the field reveals that only 45% of this money was spent on focused Parkinson projects. Another 29% was spent on related projects, which might have results significant for Parkinson's. And the last 26%, the scientists determined after reading the project abstracts, bore no relation to Parkinson's at all. For all of NIH (National Institutes of Health), the list of 1998 projects arrived too late to be analyzed before the Forum. In 1997 the percentages of a $89 million total had been 35%, 27%, and 38% respectively. This is not acceptable. This is not in compliance with the Udall bill, which has become the law of the land. It is not acceptable to us as Parkinsonians, nor should it be acceptable to Congress, whose expressed will is being thwarted. Through Parkinson's Action Network, we have tested the figures. We must now explain to Congress that the figures presented by NIH are, shall we say, tainted at the very least. And we must demand action on the part of Congress. For the most part it will be the agency whose accounting we criticize that will carry out the research initiatives that we so badly need. It is to our advantage that they be funded well, and PAN suggests the following legislative priorities Funding of NIH for additional spending on Parkinson's focused research, $50 million to go to NINDS and $25 million to go to NIEHS (National Institute of Environmental Health Sciences). The former is the traditional neurological science center of the NIH; the latter because of some vital and exciting work that has been started linking Parkinson's to environmental causes. Doubling funding of the NIH over five years. FY 1999 saw a 14% increase, and we must continue at this pace. Parkinson's is an excellent example of how strides in medical technology can save money and reduce pain, but it is not alone. Our best chance to receive the funding we desire is to see that research on other diseases gets funded too. Continuing to fund the DOD (Department of Defense) "Neurotoxin Exposure Treatment Research Program" at $25 million. Their efforts over the last three years in tying the environment to Parkinson's have yielded significant results so far, and this is no time to stop. But it is not sufficient, as noted above, to only dictate that money be spent - the money must be spent as dictated and it must be spent so as to achieve results. It is too easy to spend money - especially somebody else's - and forget that responsibility for expenditure includes the function of review as well. Sometimes it can be harder to keep track of where the money goes than just to spend it - but this is what we must ask our Congressmen and Senators and their staffs to do. As for us, it would be unwise to ask that the money be spent unless we know that there are productive places to put it. But indeed, many there are! The theme for PAN's Public Policy Forum this year was "Raising our Voices for a Cure." Several years ago, that might have seemed over-optimistic. But then again, the relief being provided to many through DBS (deep brain stimulation) might also have sounded like so much fiction not very long ago. Scientists seem to hold a lot of hope for stem cell research to provide one possible cure. Stem cell are those cells which maintain the ability to grow into any of several particular varieties of cell. For example, the fertilized egg is an example of a totipotent stem cell. It divides down, first producing other totipotent stem cells and eventually producing all type of cells in your body. Scientists have learned how to produce many totipotent stem cells from one, and experimentation is taking place to implant these totipotent stem cells into a brain and have them become dopamine producing cells. It's not without problems, but it has been shown to work in some cases. The possibility of rejection is one such problem. Scientists have long considered that the adult body contains no stem cells, but recent studies have shown this not to be true there do exist pluripotent stem cells - cells which can divide and become any of a certain cell - like any type of skin cell or any type of muscle cell or any type of nerve cell. Thus if we can get the right pluripotent nerve stem cell to the correct location in the brain and activate it, we could possibly have a cure for Parkinson's. The big advantage of this is that rejection is not a problem, since no foreign cells are introduced. But making this work is still a formidable, time-consuming task. Although stem-cell research is promising and new, it does not represent a basket into which we choose to place all our eggs. Other cures are being pursued too. Ultimately, the elimination of Parkinson's may come from eliminating its source, not from curing the disease. Substantial strides are being made in this direction, as well as in easing the pain and slowing the progress of the disease. This year the legislative agenda is not the simple "Pass the Udall bill" that we had two years ago. Now it has to be, "make these appropriations," "sign a letter of support for focused research" (not discussed here) if they have not already done so, and "review those research grants to ascertain that they are focused indeed." Not an easy message to convey in a five-minute interview with your representative or his/her medical aide, but one that must be gotten across time and time again. Do it with letters, do it with phone calls, do it with visits, do it by attending town hall meetings, but do it. Raise your voices for a cure! J. A. Hirsch - 9 July, 1999