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Dear Michael, On first reading, this is a very well-reasoned ,and helpful, credible argument about why the P.A.N. is using a "conservative" figure of 1,000,000 American PWP's. Michael, the one problem and only problem I have with your post to us is a needless attack on my name at the very end!! Certainly you must understand that it does Joan Samuelson and P.A.N. no good to wake up to you spending energy to belittle any PWP who gives whatever time and energy he or she can, to be an advocate and activist. If you had spared your biting pen, and negative energy, your post would be reproducible. As it is now, it is injurious to me, and by extension, to us. PLEASE remove the needless attack on me at the end. If you look my post to Heidi about "vascular parkonsonism," earlier this morning, you might find that I am working very hard in various ways to make a positive contribution for all of us, so that we can figure out some answers to coping with and curing PD. PLEASE get ON our bandwagon!! Ivan :-( Ivan Suzman, PWP 49/39/36 On Tue, 8 Jun 1999 06:04:38 -0700 Kelly Abbett <[log in to unmask]> writes: >The following message is from Michael Claeys, Senior >Policy Coordinator for the Parkinson's Action Network. Questions, >comments and requests can be communicated directly to the Network via >email at [log in to unmask] or by calling (800) 850-4726. > >On Friday June 4, Ivan Suzman posted a message to >the Listserve questioning the accuracy and impact of PAN materials >quoting the US Parkinson's prevalence figure as one million persons. >It is an important question, and one we should not hesitate to >discuss. > >As anyone familiar with public or political advocacy on behalf of >Parkinson's disease knows, there is a serious >shortage of comprehensive demographic and statistical information >relating to Parkinson's and the people it affects. Furthermore, much >of the information that is currently available is of questionable >accuracy for reasons that are well known to most of us (e.g. high >rates >of misdiagnosis and non-diagnosis, lack of a biological "marker," >etc.). Unfortunately, this is not a situation easily or >inexpensively >corrected. > >In this imperfect environment, the Network makes decisions that >balance >our desire to craft the most compelling and persuasive advocacy >message >with our steadfast commitment to maintain the highest possible >credibility. Using the one million person prevalence figure is such >a >decision. It is an admittedly conservative estimate based on >estimates >provided by the National Institutes of Health (NIH), other federal >sources and private sources familiar with the Parkinson's community. > >Although the Network regards the one million person figure as >conservative, that is not a view held by everyone - including some >influential members of the Parkinson's community. While their >personal >beliefs on the actual number may vary, some people feel we can >justifiably claim fewer than one million Americans with Parkinson's. >There has been quite a bit of discussion about the number, but we >feel >one million is both defensible and closer to the truth. > >This brings up another important point. As a national organization >dedicated to informing and influencing the public debate on >Parkinson's >disease, we are compelled to use figures we can document and defend. >While I may personally BELIEVE that there are far more than 1.5 >million >Americans living with Parkinson's disease and Parkinson's-related >disorders, unfortunately I cannot PROVE or credibly substantiate such >a >figure. (Of course, if anyone has credible factual information >supporting a national Parkinson's population of more than one million >individuals, please contact the Network.) > >It is worth asking another question: Would our advocacy efforts be >more effective if we claimed there to be 1.5 million Americans living >with Parkinson's? How about 2 million? It is possible that there >may >be >some slightly increased appeal or sense of urgency if we used a >larger >prevalence number, but it's not as if our efforts are suffering >because >we state "only" one million Americans have Parkinson's. However, if >we >were to use a larger figure without credible documentation to support >it, we run the risk of hurting our advocacy efforts. Without >reasonable proof for our claim, the risks outweigh the rewards. > >And the risks are real. Over time the NIH has changed its most >frequently published Parkinson's prevalence figure - and not to >benefit >the Parkinson's community. At the time the Network was founded >(1991), >and for the first several years of our advocacy efforts, the National >Institutes of Health (NIH) officially estimated US Parkinson's >prevalence at between .5 and 1.5 million persons. It seemed quite >reasonable to split the difference and assume one million Americans >with Parkinson's. After several years of >lobbying Congress with NIH spending figures showing >the appallingly few dollars spent per person with Parkinson's (and >with >growing legislative effectiveness), the NIH revised its estimate >downward - to a flat .5 million Americans. Why did NIH change its >published estimates? I don't know, but if you accepted their number >it >doubled the dollars per patient they were spending for Parkinson's >research... > >To counter this move, the Network and others have had to work very >hard >to constantly project clear, consistent and credible information to >Congress, the Administration and the media. By doing so, the one >million Americans figure has become the most widely accepted and >often >used figure when describing the national Parkinson's community. This >is quite an accomplishment when the prestigious and revered NIH is >using a figure only half the size. > >Finally, although we do occasionally make errors, PAN diligently >works >to ensure that every fact, figure and statistic used in our >materials, >statements and personal meetings is utterly credible and defensible. >Our effectiveness with Congress, the Administration and >the national media depends on our reputation for providing reliable, >accurate information. > >So if our decisions draw criticism from the most aggressive >Parkinson's >go-getters like Ivan Suzman, we accept that as an unfortunate price >of >maintaining our credibility and effectiveness in the public and >political domains. Adopting positions or disseminating >information that undermined our effectiveness would be the true >"disservice" to the Parkinson's community. > >Sincerely, > >Michael Claeys >Senior Policy Coordinator >Parkinson's Action Network >(800) 850-4726 > > >_________________________________________________________ >Do You Yahoo!? >Get your free @yahoo.com address at http://mail.yahoo.com ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses deg. F :-) ********************************************************************