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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