For Christoher Reeve, my son, others, etc...Double SCI Funding

winget winget at allwest.net
Thu Jun 6 16:06:16 EST 1996


JOIN THE GOOD HOUSEKEEPING LOBBY!

If you believe the government should help
fund a search for a cure for the more than
200,000 Americans paralyzed as a result
of spinal cord injuries, fill in this coupon
and mail it to Senator Arlen Specter (R-
PA), who chairs the Senate subcommittee
that decides how funding for medical
research within the National Institutes of
Health will be spent.

  Senator Arlen Specter, Chairman
Subcommittee on Labor, Health and Human
 Services, and Education Appropriations
 Hart Senate Office Building, Room 530
 Washington, DC 20510

Dear Senator Specter:

Please add my name to the list of sup-
porters of increased funding for spinal
cord injury (SCI) research during fiscal
year I997. Scientists have proven that it
is possible for spinal cord nerves in
animals to regrow and reconnect. Now
they need additional funding to continue
their research.

I urge your subcommittee to appropriate
the highest possible level of funds for SCI
research. Because SCI primarily afflicts
young people with long life spans, experts
predict the investment could return
thousands of people to more self-sufficient
lives. By investing an additional $40
million a year in SCI, the U.S. government
could eventually save billions a year in
Medicare and Medicaid.

Sincerely,
Name______________________________________
Address____________________________________
__________________________________________
__________________________________________
Here is a copy of Dr. Wise Young’s letter:

Dear Senator Specter, 
 
          I write to praise your support of increased funding for spinal
cord injury research at the National Institutes of Health, proposed by
Christopher Reeve.  Your help and support in this matter is an indication
of your commitment to improve the lives of people with spinal cord injury. 
At the press conference on May 15, you had spoken loudly and clearly of the
role of research in reducing health care costs.  I sincerely hope that you
will be successful in convincing your colleagues on the Senate Subcommittee
of Health and Human Services Appropriations to amend the appropriation bill
to earmark an additional $40 million per year for spinal cord injury
research at the National Institutes of Health. 
 
          The funding will greatly boost progress in the field.  In the
past five years, many advances in studies of spinal cord injury and
regeneration have convinced a majority of scientists that effective
regenerative therapies are within reach.  Let me summarize three of the
findings that provide hope for therapies to restore function in people like
Christopher Reeve and 250,000 Americans who have chronic spinal cord injury
in the United States. 
1.  Very few axons are required to support functional recovery in spinal
cord injury.  Studies from many laboratories have shown that we do not need
many spinal axons for function.  Estimates from animal studies suggest that
as little as 8% of the axons in the spinal cord will support remarkable
recovery of locomotor function.  Studies of human spinal cords have shown
that a majority of people with spinal cord injury have some surviving
fibers crossing the injury site.  This is particularly true since the
introduction of methylprednisolone, a steroid drug that Christopher Reeve
received, which has been shown to prevent progressive damage in the spinal
cord.  In some cases, it may be sufficient to restore or regenerate only
2-3% of axons in the spinal cord to bring back function.  For a person such
as Christopher Reeve, even a small return of function such as being able to
breath without a ventilator will be enormously meaningful. 

2.  Many of the spinal axons that survive the injury are dysfunctional. 
Recent studies have shown that these dysfunctional axons have lost their
myelin, the insulating sheath that allows axons to conduct signals
effectively.  Several laboratories have now shown that it is possible to
remyelinate these fibers in the injured spinal cords and we recently showed
that such remyelination can restore function in animals after spinal cord
injury.  It is now possible to transplant myelinating cells into the spinal
cord.  With the additional funding, it will be possible to move these
therapies more rapidly to clinical trials.  I estimate that as many as a
third of spinal cord injury victims in the United States will benefit from
such therapies. 

3.  Regeneration is possible in the spinal cord.  Less than a decade ago,
most scientists believed that spinal axons cannot regenerate.  Now, the
vast majority of neuroscientists firmly believe that regeneration is not
only possible but effective regenerative therapies can be developed in less
than a decade.  Several recent studies have shown that there are factors in
the spinal cord that prevent regeneration.  Blockade of these factors allow
regeneration to occur in rats.  The increased investment in spinal cord
injury research will allow more laboratories to study how to optimize these
therapies and bring them to clinical trials. 
 
Time is of essence for people in wheelchairs.  A decade is an eternity for
people with spinal cord injury.   Over 70% of the people in the United
States were injured below the age of 40, half below the age of 27, and most
commonly at age 19.  The population is young.  There are 250,000 people who
are patiently waiting for therapies.  They cannot wait 20 years or 30 years
for therapies to be developed.  Unless we push hard and develop therapies
faster, they may not come in time to help for many of the people who are
currently in wheelchairs.   
 
Time is also money.  Somebody like Christopher Reeve has to expend close to
$500,000 per year for his care.  Effective therapies have an enormous
potential to save money.  An effective therapy that allows him to breathe
without a ventilator would halve his costs and for 2000 other ventilator-
dependent quadraplegics, a savings of several hundred million dollars per
year.  An effective therapy that allows him to go to the bathroom would
greatly reduce the incidence of infections and other problems that
typically hospitalized spinal-injured Americans, as well as the costs of
catheterization, with potential savings of billions of dollars.  Every year
that we delay investment in spinal cord injury research, more money is
wasted.  It does not make economic sense to delay.   
 
I apologize for such a long message and thank you again for your support of
spinal cord injury research.  If there is anything that I can do to help,
please do not hesitate to ask. 
 
Wise Young, Ph.D., M.D. 
Professor of Neurosurgery, Physiology, and Biophysics 
NYU Medical Center, 550 First Avenue, New York, NY 10016 
email:  wisey at pipeline.com

-----------------------------------------------------------------------------
Here are a few guidelines from Dr. Wise Young that should help in 
formulating  your letter:

People need to write their senators as soon as possible and, if necessary,
send separate messages every 2-3 weeks to keep the pressure up. The more 
people express their support, the more likely that Senator Specter will be 
able to convince his colleagues to support the amendment.   

The senate staffers who read the email messages will keep a count and 
let their senators know.  Well-written messages will be shown to the 
senators and they often will incorporate the information into their speeches 
and thinking.  Key points to hit: 

1.  research is the only effective means of reducing health care costs of
diseases such as spinal cord injury; the estimated costs of caring for
approximately 250,000 people with spinal cord injury exceeds $8 billion
(this is the number that was stated by the Good Housekeeping article).   
2.  spinal cord injury is a disease of young people and people with spinal
cord injury live virtually normal lifespans after the first year after
injury; thus it causes more years of disability than any other neurological
problem. 
3.  scientists are optimistic that effective therapies can and will be
developed.  The additional funds will greatly increase the rate of research
and therefore the development of therapies. 
 
Continuing with Dr. Wise Young’s remarks,  here is more information 
about the process:

It might be helpful to people who want to write directly to members of the 
Senate Appropriation Committee and the Subcommittee for Labor, Health 
and Human Services, and Education.  The latter is directly responsible for 
the National Institutes of Health budget.  I have marked senators who are 
part of the LHHSE subcommittee with asterisks.  Wherever possible, I have 
included the official email addresses of the people.  Where they have no 
published email address, I include their telephone numbers and regular 
address.  Also, we should thank President Clinton for his support of spinal 
cord injury research:  president at whitehouse.gov

Please write particularly to your U.S. senators from your particular state 
in order to have the most impact.  Your letters should refer to the Specter 
amendment to increase funding for spinal cord injury research and thank 
the members for their support of $40 million additional ear-marked funds 
for this purpose, indicating that the funding provide a ray of hope for them. 
 
Wise. 
 
Senate Committee on Appropriations 
Committee Phone:  (202) 224-3471 
    MAJORITY MEMBERS 
*  Mark O. Hatfield (OR) Chairman  -  711 Hart Senate Office Building,
Washington, D.C. 20510, (202) 224-3753, (202) 224-4898 TDD 
   Ted Stevens (AK)  -  senator_stevens at stevens.senate.gov 
*  Thad Cochran (MS) * -   senator at cochran.senate.gov 
*  Arlen Specter (PA) -   senator_specter at specter.senate.gov 
   Pete V. Domenici (NM)  -   senator_domenici at domenici.senate.gov 
   Phil Gramm (TX) -  info at gramm96.org 
*  Christopher (Kit) Bond (MO) -  202-224-5721, 293 Russell Senate Office
Bldg, United States Senate, Washington, DC 20510-2503 
*  McConnell (KY) -   senator at mcconnell.senate.gov 
*  Connie Mack (FL)  -  tel:  (202)224-5274, 517 Hart Senate Office
Building, United States Senate, Washington, DC 20510-0904 
   Conrad Burns (MT) -   conrad_burns at burns.senate.gov 
Richard C. Shelby (AL)  -   senator at shelby.senate.gov 
* James M. Jeffords (VT) -   vermont at jeffords.senate.gov 
* Judd Gregg (NH)  -  mailbox at gregg.senate.gov 
   Robert F. Bennett (UT)  -   senator at bennett.senate.gov 
 
    MINORITY MEMBERS 
*  Robert C. Byrd (WV) Ranking  -  tel:  202-224-3954, 311 Hart Senate
Office Bldg, United States Senate, Washington, DC 20510-4801 
*  Daniel K. Inouye (HI) 
*  Ernest F. Hollings (SC)  -   senator at hollings.senate.gov 
   J. Bennett Johnston (LA)  -   senator at johnston.senate.gov 
   Patrick J. Leahy (VT)  -  senator_leahy at leahy.senate.gov 
*  Dale Bumpers (AR) -   senator at bumpers.senate.gov   
   Frank R. Lautenberg (NJ)  -   frank_lautenberg at lautenberg.senate.gov 
*  Tom Harkin (IA) -   tom_harkin at harkin.senate.gov 
   Barbara A. Mikulski (MD) -   senator at mikulski.senate.gov 
*  Harry Reid (NV)  -   senator_reid at reid.senate.gov 
   J. Robert Kerry (NE) -   john_kerry at kerry.senate.gov 
*  Herb Kohl (WI) -  senator_kohl at kohl.senate.gov 
   Patty Murray (WA) -   senator_murray at murray.senate.gov 
--------------------------------------------------- 

Whatever you do or don’t do, PLEASE at least write both of your
U.S. Senators with a Cc to:  senator_specter at specter.senate.gov 
AND copy the GoodHousekeeping form to mail in.
  
Thanks very much,

Greg Winget




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