Report from the basement of the U.S. Capitol
Day 1 -- 1995 PAN Public Policy Forum -- Monday 15 May
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>>>>>>>> "Invisible No More" <<<<<<<<<<
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NOTE: See updated Forum AGENDA also to be posted today
FOLLOWING: Summaries of today's presentations.
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JOAN SAMUELSON: We have been invisible because we are
very good at hiding our disease in public ... let's not
do that any more ... let's be INVISIBLE NO MORE!
People are now frozen in their bodies. We don't
want to be there. We can help find a cure.
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REP. FRED UPTON (R-MI): I met at length with Clinton to
allow fetal tissue research. Jonas Salk's polio vaccine
research depended on FT research. Must de-claw, de-myth
the argument connecting PD research and abortion. Will
write letter to producers of "Chicago Hope" TV show re
disinformation about current abortion law and FT research.
Highest priority: I was the original co-sponsor, but
need more congressmen/women to co-sponsor the Udall bill.
Have 24, need 100+ (bipartisan) for clout.
To pass, the bill must be lead by the Senate.
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ED LONG: Logistics of future NIH funding -- NIH budget
increased 4.1% to $11.7 billion, less than inflation for
medical services. Budget balancing forces NIH down 5-10%
to $10.7 billion. "Decade of Brain" funding $16 million.
NIH is the largest beggar in "Mother Teresa's Waiting
Room" -- job training, Head Start, Pell Grants, AIDS
education, low income and Dept of Education programs, etc.
Need to use the PAN informative data to present your case
for increasing PD's share of spending.
Influencing Factors :
- Threat of fear spending on another contagious disease.
- Can't increase defense and NIH simultaneously
- Harkin-Hatfield set-aside funding for bio-med trust
now most likelyl from tobacco tax.
- Message should be to turn our sick care system into a
preventative system.
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SUSAN HILDICK (Hatfield's staff): Need more co-sponsors
-- have 12 in Senate, 27 in House. Udall bill introduced
4 weeks ago, no hearings have been scheduled. Recommend
to lobby for increases in research for all diseases --
not to have one disease against another. We should
develop an advocacy community for long term cures for
all diseases. Let's not be "eating our seed corn."
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MORTON KONDRACKE: (See posted article on brain research
from his newspaper "Roll Call.") Wife Millie has PD.
Amongst many political jokes he says:
- the most difficult people are now on top in Congress
- best political clout is your personal story
- use the comparison of PD research spending to other
diseases (a PAN Fact Sheet). (NOTE: we heard a counter-
argument on using this disease-against-disease strategy)
- have HOPE
- NIH research spending is an investment to avoid future
spending increases in long-term care. (Argument for
Republicans.)
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SENATOR ALAN SIMPSON (R-WY): Father had PD. Lived to 95.
Outlived doctors. Mother was caregiver and PD expert.
Says that due to entitlements, he only votes on 60% of
the budget.
- need more co-sponsors for Udall bill. Encourage your
rep to co-sponsor.
- letters to congress should be your personal story.
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SCARDINO & GEDDINGS (media consultants): Agreed with PAN
handbook outlining how to do grassroots lobbying.
- when you meet representative, keep it short, focused.
- make sure you tell them specifically what you want
- HANDWRITTEN LETTERS are most noticed.
- reps are more relaxed in home office, pressured in DC
- some offices can handle e-mail.
Roll Playing: Jim Cordy volunteered to practice a present-
ation to pretend congressmen.
Discussion: How to handle pro-life agruments -- use PAN
handout (to be updated).
Politicians are non-committal, difficult to learn
how they may vote.
Ask representatives if they have a PD connection --
friend, relative, etc.
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SENATOR PAUL WELLSTONE (D-MN): Both parents have PD.
Father was in original l-dopa study. "If we don't speak
for ourselves, who will!" Reductions in NIH funding make
no sense when the long-term suffering and lives are
considered. Need face-to-face meetings at home. DC is
expensive to visit. Don't neglect the grassroots
responsibility to speak up. The most powerful voices are
from those who personally struggle with PD -- not for pity
but for help. This is a quality-of-life issue that you need
to get tough about. You can't take "No" for an answer.
Discussion: We are all ticking clocks here. How can we
speed up the legislative. (Activate your network.)
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REPRESENTATIVE HENRY WAXMAN (D-CA): Short speach. He was
glad to help sponsor the bill. Get to work gang.
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FOOTNOTES:
1. This posting typed by A.J. Conovaloff (sponsored by
140 families of Sun Cities Area PD Support Group, AZ.)
on laptop of Margaret Monty (Churchville, MD) who
posted from home.
2. A colorful PD informative computer presentation/slide
show for MS-Windows has been prepared by Jim Cordy
using PAN and other data. We loaded and showed the
program on Margaret's color laptop. His presentation
is excellent for support group education. It can be
viewed on a color computer, as overhead transparencies,
color slides, and soon, we hope, on the WWW.
3. Bill Langston has just published: "Case of the Frozen
Addict." Signed copies were given to guest speakers.
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