Pretend you are a reporter writing an article on chronic
disease in the U.S. Your first step is to visit the library to
identify major chronic conditions and find background
information. The friendly librarian hands you a government report
entitled, "Prevalence of Selected Chronic Conditions: United
States," published by the National Center for Health Statistics.
"Thank you," you say. "This is just what I need." You find
statistics on heart disease, multiple sclerosis, diabetes, anemia
etc. You can even find out how many Americans suffer with ingrown
nails, bunions and dry skin! BUT you will not find "PARKINSON'S
DISEASE" anywhere in this publication, or in many others like it.
This is one reason we wrote "How Many People in the U.S.
Have Parkinson's Disease?" We plan to present our findings and
suggestions to the national PD organizations, the National Center
for Health Statistics,and other sources of potentially
significant data, such as pharmacies, manufacturers of Parkinson
medication, insurance companies, HMOs, etc. In preparation for
this, we welcome ANY of your opinions, suggestions or comments.
You can find the report in an easily readable format on the
Parkinson's Alliance Web site: http://www.parkinsonalliance.net/
The statistical sources we examined often seem to ignore the
existence of PD as a major chronic, disabling disease. Other
sources only provide estimates which range from 500,000 to 1.5
million, or even higher. This lack of precise data on the
prevalence of PD could weaken our arguments for increased
research funding. It also hurts our credibility when different
organizations cite such divergent numbers. Additionally, the
absence of official statistics on PD adds to our "invisibility."
The primary source for U.S. health statistics is "The
National Health Interview Survey," published by the National
Center for Health Statistics. Interviewees are shown a checklist
of "SELECTED Chronic Conditions" and asked to identify any they
suffer from. PD is not a "Selected Chronic Condition." We have
not yet been able to determine why. The results of this survey
are published in government reports, and in statistical reference
sources, which consequently also lack data on PD. Just a few
implications are:
1."Statistical Abstract of the United States" is a well known
compilation of national data, available in any library. We
searched through its tables on health, disease, disability,and
aging, (1997 ed.) but couldn't find anything about PD. Much of
its health data comes from "The National Health Interview Study."
If official statistics were available for PD, as they are for
many other chronic diseases, it might help increase PD awareness
among the public, researchers, the media and the politicians.
2. ChronicNet is an Internet site of the Robert Wood Johnson
Foundation (http:www.chronicnet.org/) It is described as "the
most comprehensive resource for reporting on chronic health
conditions and disabilities on the national, state and local
level," and was designed "to lead journalists to sources,
stories, and statistics on chronic care." We all know first hand
about the many PWP forced into early retirement and disability,
and the struggles of daily living with this disease, yet we found
nothing on ChronicNet about PD. A major information source cited
by ChronicNet is again, "The National Health Interview Survey."
3. There are unofficial reports of a high occurrence of PD and
other neurological conditions among Vietnam vets exposed to
Agent Orange and other toxic chemicals. (Click on "Vietnam and
Parkinson's" from the Parkinson's Alliance homepage.) The VA
rejects most of these claims. Medical records from the VA may
indicate the prevalence of Vietnam vets with PD, but lacking
reliable statistics on the U.S. population as a whole, it is
difficult to make comparisons.
If anyone would like a list of other statistical
publications referred to above, please contact Linda Herman.
We look forward to reading your comments - please send them to
the list or to any of the three addresses below.
Thanks,
Linda Herman ([log in to unmask])
Phil Tompkins ([log in to unmask])
Margaret Tuchman ([log in to unmask])
