Thanks to everyone who responded to the "Your Input is
Needed" letter, from Phil Tompkins, Margaret Tuchman, and myself.
We are now trying to figure out how to proceed with the
information we collected.
It would be great if the U.S. Census included information on
PD, but currently it does not collect data or report on specific
diseases. An effort to convince the Census Bureau to change this
would probably take much longer than 1 1/2 years before the 2000
census. But, The National Center for Health Statistics and Center
for Disease Control already conducts the ongoing "National Health
Interview Survey." (NHIS) We thought it most likely that PWP
could be counted in this survey.
They interview a representative sample of the U.S.
population for the NHIS. Our problem is that PD is not one of
their "SELECTED Chronic Conditions" and therefore is not included
in their questionnaire checklist or in their reports. They don't
explain how they choose which diseases to include. Multiple
Sclerosis is one of the neurological conditions on their
questionnaire, though using even our lowest estimates, there are
more people with PD. It doesn't seem that it should cost a great
deal to include PD on their checklist. The question is how to
convince the National Center for Health Statistics to do this?
In addition other data on PD is surely already in the
databases of the pharmaceutical companies, the national drug
chains, the HMO's. We need to find a way to tap into this data
and analyze it. It could tell us a lot about the numbers of PWP.
I also agree with Joe Bruman's comments about the value of
collecting this type of data which could help to identify effects
of hereditary, the environment, geography, etc. on the occurrence
of PD. There surely must be ways of protecting the privacy of
individuals. Also making demographic information on PWP available
to the public could help create a more accurate picture of who we
are, important,as George noted, in terms of public awareness and
political influence.
Thanks again. We welcome any other suggestions.
Linda Herman
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