Jeanette:

I have my dragon dictate installed and will offer my observations on the EPDA
meeting.

I was pleased to be invited to speak at the EPDA meeting on the subject of
"Public Health Challenges for Parkinson's Disease in the U.S."  Research
supported by the Quality, Access, and Delivery of Parkinson's Care (QuADPaC)
program of the PDF will be presented including data from the PDF "access
survey"  and data from research conducted by Dr. Joyce Pressley at Columbia
University on the costs and resource use of Parkinson's patients covered by
Medicare.

A major goal of QuADPaC is to initiate public health planning to address
concerns about such issues as insurance coverage, availability of specialty
care, and quality of care for the population.  To advance this goal, a
steering committee has been formed to plan a workshop on "access to quality
care for PD." Included in the committee are Dr. Caroline Tanner (Parkinson's
Institute), Dr. Robert Holloway (Univ. of Rochester), Dr. Barbara Vickrey
(UCLA), and Dr. Guy McKhann (NINDS), and Dr. Matthew Zack (CDC).  Dr. Rusty
Glazer and myself are staff.  This effort is being supported by the
Parkinson's Disease Foundation with the assistance of the American
Parkinson's Disease Association.  We hope to obtain support from additional
sources.

More information on QuADPaC can be found at our Website,
www.parkinsonscare.org.

PRESENTATION ABSTRACT:
This presentation describes strategies to initiate Public Health programs in
the
context of US Federal policy and the private US health care industry, which
offers a contrast to the more socialized European systems.  Although private
foundations and individual medical providers provide information and referral
to
patients, community wide efforts to improve detection and treatment of PD are
lacking.

The Quality, Access and Delivery of Parkinson's Care (QuADPaC,
www.parkinsonscare.org) Program of the Parkinson's Disease Foundation was
initiated to fill gaps in services research and to support advocacy for PD
health services.  Services research is used to motivate planning and conduct
further research that ultimately will become the basis for a public health
action plan for PD. A status report, "Parkinson's Care in the U.S." identified
the need for:  1) basic surveillance data on incidence, prevalence, and
progression of PD in different demographic groups, 2) better detection and
tracking of disease progression at early stages, 3) access to comprehensive
specialty services at later stages of PD, and 4) information on the burden and
cost to the disease relative to reimbursement policies of public and private
insurance coverage. The 1999 PDF Access Survey points out problems for PWP on
issues of access to specialty care and lack of social insurance coverage for
needed prescription drugs and long term care. Research sponsored by QuADPaC on
PD costs in an older Parkinson population shows a high incidence of broken
bones, many of which are a result of preventable falls, at a cost of 2.5 times
as much to Medicare.


>Don't I wish I could attend the EPDA Conference, 11-09 thru 11-11, in
>Vienna, Austria. The scope of programs being offered is so large and I sure
>hope PIEN list presenter, Perry Cohen will give PIEN some feedback from
>Vienna.  Is that possible Perry or other PIEN members who are attending?
>
>Jeanette Fuhr 50/47/44?