Hello Rosemary,
I am sure that you have received private replies to your question,
though
I wish that these (as well as other topics of common interest) would
be posted to the entire list.
The main issues that we must discuss and convey to the media are:
----the prevalence of PD
----the monetary and emotional costs of Parkinson's disease
----PD research is yielding important discoveries and is considered to
be the "first chronic nervous degenerative disease where we'll see a
major breakthrough, with a really significant reversals of symptoms. I
don't think it's too ambitious to talk about stopping the process
entirely." are the words of Gerald Fischbach, M.D., Director of the
National Institute for Neurological Disorders and Stroke (NINDS) of
the National Institutes of Health.
If the reporter does his/her homework, they may pick up erroneously
LOW statistics. Refer to the article written about Michael J. Fox in
the People Magazine, 12/7/98 which cites 1 million cases, with 10%
under the age of 40. In the 2/9/99 AARP article, "Parkinson Puzzle",
the author also uses the 1 million number and adds that 50,000 new
cases are diagnosed each year. Given the fact that we have the disease
for 3-5 years before actual diagnosis takes place, there are
significantly more people affected by PD than 1 million.
There are 2 additional points that need to be made: the mean age of PD
onset is in the mid 50's age group, 40% of patients develop symptoms
between the ages of 50 and 60 and as the number of 50+ is increasing
(the baby boomers), it is projected that by the year 2030, 1 of 5
persons in the U.S. will be 65 years old or older, therefore there
will be a sharp incline of PWPs in the population.
Since there are no reliable statistics regarding the prevalence of the
disease, a low figure of 25 billion dollars has been used as the
economic cost. This includes loss of wages of the PWP and their
Care-giver, social security and disability payments, medical care
including drug costs, surgical, long term care, institutional and home
care, cost of hospitalization for injuries directly related to PD
(broken bones, hip replacement, etc), cost for treatment and
medication for depression, hallucination, dementia, etc -- CLEARLY A
VERY EXPENSIVE DISEASE!!
The pharmaceutical and surgical developments have improved our quality
of life, but only temporarily. Newer, still experimental approaches
are being explored and funding is needed to focus all research effort
to continue the many promising projects but also to recruit
researchers from areas that may have the hidden clue leading to CURES.
We must vigilantly follow NIH's commitment to select ALL the promising
grant applications specifically dealing with PD. The Morris K. Udall
Research and Education Act, by law, calls for $ 100 million to be
spent on "focused" PD research per year for FY 1998, 1999 and 2000.
This year NIH was given a significantly larger budget and we can
benefit if the PD community keeps the nation's attention on our
plight.
Of course, the article that will be written will be a 'human interest
story', and there is great value in that. I just wanted to provide
"raw data" to make sure that correct information is included in the
article.
Good luck,
Margaret Tuchman
Princeton, NJ
H (609) 921-1696
Fx(609) 921-1613
[log in to unmask]
The Parkinson Alliance
We take responsibility for OUR future!
-----Original Message-----
From: Parkinson's Information Exchange
[mailto:[log in to unmask]]On Behalf Of Rosemary & Rollin
Dexter
Sent: Thursday, March 18, 1999 2:22 PM
To: [log in to unmask]
Subject: PD Awareness Month
I have talked to the editor of our local paper and he is very willing
to
run an article in April highlighting Parkinson's Awareness Month and
particularly our local support group which we just formed two months
ago.
What suggestions do you have for making the article interesting and
informative. I want to get it in before our next support group
meeting
which will be April 19. Thanks. Rosemary
[log in to unmask] cg for Dex 75/6
