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Ken Aidekman wrote: >Date: Thu, 29 Jun 2000 22:43:35 -0400 >From: Ken Aidekman <[log in to unmask]> >Subject: forum thoughts >Wouldn't it be great if there was a national "Parkinson's Convention"? >An event in which PWPs, their families, scientists, neurologists, >advocates and professionals from all the foundations could get together >and exchange ideas about living with PD and what should be done to >conquer it. The Michael J. Fox Foundation for Parkinson's Research >Public Policy Forum is awfully close to becoming that event. > >Now if we can only find a way to abbreviate the title. Ken: Your concept of the Forum as close to a National PD Convention is right on. Hang on to that thought. I'd like to see it grow. Because I was away on vacation until Monday night I attended the Forum Tuesday only. It was great to see long time friends and meet people in person that I have corresponded with by email. Since I don't have a Senator, I assisted Helen Mason from Oregon and Patty Maeglin from Nevada on their visits to the Hill. This was my 5th Forum and I can say that politically we have definitely arrived!! With our past successes in advocacy and now the boost from MJF, Senators made special efforts to meet us personally and even have their picture taken with us. All said they were strongly supportive of us. One Senate staff person wanted to know specifically how the $71.4 M in the NIH PD research agenda for next year would be funded. I said that short of an earmark, NINDS could not fund all the increase out of their proposed 15% increase for FY2001, but that other Institutes represented on the PD Coordinating Council (NIMH, Aging, Research Resources, etc.) would be involved in implementing the plan. As a practical matter of relevant expertise as well as smoothing the distribution of increases over several Institutes, NIH needs to be more specific about how the plan will be implemented. I understand that NIH is forming a small task force including Jeff Martin, Robin Elliott, and several scientists to track these implementation issues. In addition I think that the NIH PD Coordination Council, which is due for a meeting, would be the appropriate venue for policy discussions on these issues. The results of the more specific assignments to Institutes are needed to keep our Congressional supporters informed of progress. The tragic suicide of 31 year old PD advocate, Paige Bremer (http://www.theparkplace.com/) provides a too poignant example of an area of basic and clinical research that could benefit from cross Institute initiatives -- that is the many cognitive and emotional effects of PD and medications. The death of this vibrant and charming young woman about to come to the Forum reminds us of the high incidence of depression among PWP and the debilitating and costly consequences of depression, dementia and other cognitive effects. My recent attendance at the World Movement Disorder Society (MDS) Congress underlined the paucity of research in these areas. For example, preliminary findings of the MDS "Evidence Based Review" of PD treatments found 22 clinical studies of depression in PD, no class I or II studies and only 2 class III studies (classes are based on strength of evidence – large, long term, double blind, randomized, controlled trails are highest, class I). Dopamine agonists by contrast had 236 studies with 57 class I studies. Scientific speakers at the Forum presented promising new techniques (e.g. gene therapy) for delivery of nerve growth factors to specific targets in the brain to treat motor system deficits. Findings presented at the MDS Congress indicated that more sophisticated imaging technologies could detect deficits in dopamine storage as well as production in different parts of the CNS. Problems found in locations in the brain and parts of the nervous system outside the motor control areas are associated with cognitive and autonomic nervous system problems that often lead to the most serious debilitating and costly effects of PD (e.g. abnormalities in the nerve endings in the heart are associated with orthostatic hypotension). Further research is necessary to aim new treatment and delivery modalities, now targeted primarily at the cardinal motor symptoms, to cognitive and emotional symptoms. Gene therapy, imaging technology, and clinical trials are all addressed in the NIH PD Research Agenda. As a tribute to Paige and nearly half of patients with cognitive effects, there is a compelling need for significant additional specific program emphasis on mental health issues in collaborations with NINDS, NIMH and other Institutes. Perry Cohen Washington DC "taxation without representation"