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