Monday, September 29, 2008

New Avenue for MS Research Secured in Defense Bill

Thanks to your help and activism, we are proud to announce that multiple sclerosis has been awarded a new $5 million research program within the Congressionally Directed Medical Research Programs (CDMRP). This is a tremendous victory and is the first time that MS has ever received its own line item for funding under the CDMRP.

The CDMRP is a program funded through the defense bill, which is currently attached to the Continuing Resolution (CR) that Congress passed over the weekend. The final step is the signature of President Bush, who is expected to sign early this week.

This movement is an example of the power of advocacy and the influence of a grassroots campaign. MS activists worked to steer this issue in the right direction and had confidence in the bold request for millions of dollars to establish a new program. Every activist played an important role in gaining this new ground, whether it was being a voice at a congressional meeting during the Public Policy Conference, being featured in the media, headlining informational briefings on Capitol Hill, participating in local town hall forums, or even testifying before Congress.

The Society owes a great deal of thanks to the other organizations that helped petition Congress for this new research funding. Those joining us in advocating for the new funding included: American Academy of Neurology, Paralyzed Veterans of America, United Spinal, AMVETs, Vietnam Veterans of America, and Disabled American Veterans.

Please join us in celebrating this enormous success. Without your dedication and participation, the establishment of a new avenue of research funding for MS would not be possible. Thank you for being one of our valuable MS activists.

It is important to acknowledge those legislators who made this new avenue of research funding for MS possible. Please take a moment to thank your Senators and/or Representative who may have supported this funding request either as a member of the Appropriations Committee or as a Dear Colleague signer.

Visit www.house.gov or www.senate.gov for legislator contact information.

Check the list below to learn if your Senators or Representative signed onto the Dear Colleague letters requesting this funding:


HOUSE DEAR COLLEAGUE SIGNERS
Sponsors:
Russ Carnahan (MO)
Michael Burgess, M.D. (TX)

Co-sponsors:
Tammy Baldwin (WI)
Howard Berman (CA)
Leonard Boswell (IA)
Nancy Boyda (KS)
Lois Capps (CA)
Christopher Carney (PA)
Susan Davis (CA)
Bill Delahunt (MA)
Vernon Ehlers (MI)
Keith Ellison (MN)
Phil English (PA)
Bob Filner (CA)
Vito Fossella (NY)
Barney Frank (MA)
Virgil Goode (VA)
Bart Gordon (TN)
Ruben Hinojosa (TX)
Tim Holden (PA)
Hank Johnson (GA)
Patrick Kennedy (RI)
Peter King (NY)
Dennis Kucinich (OH)
James Langevin (RI)
Sander Levin (MI)
John Lewis (GA)
Frank LoBiondo (NJ)
Edward Markey (MA)
Jim Marshall (GA)
Carolyn McCarthy (NY)
Jim McDermott (WA)
Brad Miller (CA)
Harry Mitchell (AZ)
Dennis Moore (KS)
Tim Murphy (PA)
Bill Pascrell (NJ)
Ron Paul (TX)
Collin Peterson (MN)
Todd Russell Platts (PA)
Nick Rahall, II (WV)
Rick Renzi (AZ)
Thomas Reynolds (NY)
Peter Roskam (IL)
Bobby Rush (IL)
Linda Sanchez (CA)
Jan Schakowsky (IL)
Allyson Schwartz (PA)
David Scott (GA)
Pete Sessions (CA)
Christopher Shays (CT)
Louise Slaughter (NY)
Vic Snyder (AR)
John Tierney (MA)
Edolphus Towns (NY)
Fred Upton (MI)
Debbie Wasserman Schultz (FL)
Henry Waxman (CA)
Peter Welch (VT)
Robert Wexler (FL)
Robert Wittman (VA)
David Wu (OR)
John Yarmuth (KY)
-
SENATE DEAR COLLEAGUE SIGNERS
Sponsors:
Sherrod Brown (OH)
Jim Bunning (KY)

Co-sponsors:
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Christopher Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Ron Wyden (OR)

2 comments:

Bob Wolz said...

Congradulations to everyone! And thank you to everyone for working so hard on this issue. It is extremely awesome all the effort everyone put into this...and now look, first time and we got it! The National MS Society created an awesome plan, gave all of us direction, and together we all pulled it off!

Moses said...

I'm a Navy Vietnam Era Vet and have suffered since my first symptoms in 1975. I wasn't fully diagnosed until 1993. After loosing my job in 1995 due to an extreme exacerbation which kept me out of work for a week, I went to the VA to get health care access. I'm currently being reviewed for service related disability due to my MS. I've learned that the VA has considered MS to be service related disability. See the website:
http://www.vetscommission.org/
I urge any Veterans who are disabled due to MS to go to the VA and get your case reviewed for this service related disability.
A new presumptive category was established in the 1970s—Former Prisoners of War
(POWs). POWs from WWII, the Korean War, and the Vietnam era were specifically connected
for various physical and mental health outcomes in 1970 (Public Law 91-376. Sec. 3. 91st Cong.,
2d Sess., 1970). “Problems with nutrition, forced labor, and other inhumane treatment were
deemed to be strong reasons to presume that the conditions were the direct result of captivity”
(Economic Systems Inc, 2004a, p. 20). Clarification for the presumptive periods of Hansen’s
disease (leprosy) and tuberculosis to 3 years as well as multiple sclerosis to 7 years from date of
separation occurred in 1970 (VA, 1970). In 1979, ischemic heart disease (or other cardiovascular
disease) was presumptively associated with service amputation of one lower extremity at or
above the knee or service-connected amputations of both lower extremities at or above the ankles
(VA, 1979).

```````````````

MULTIPLE SCLEROSIS
Description
This case study examines the 1962 decision to grant compensation for service-connected disability
to veterans diagnosed with multiple sclerosis (MS) within 7 years of their separation from
the military. This presumption stems from the VA’s interest in compensating disease and disability
that has its onset during military service. Veterans with one of a defined list of chronic diseases
may also be compensated if these are diagnosed within 1 year of separation from the military.
The rationale here is that these diseases are sufficiently insidious and the diagnosis
sufficiently challenging so as to make it impossible to conclude with certainty that the true disease
onset did not occur during the period of military service.
Multiple sclerosis was eventually singled out from the other chronic illnesses and the period
of diagnosis extended from 1 year (Veterans’ Chronic and Tropical Diseases Act of 1948. Public
Law 80-748. 80th Cong., 2d Sess.; VA, 1949), to 2 (Act of October 12, 1951. ch. 499, 65 Stat.
421 as cited in VA 1993), to 3 years (Act of August 25, 1959. Public Law 86-187. 86th Cong.,
1st. Sess. as cited in VA, 1993), and eventually to 7 years (Veterans’ Disability Compensation
Increase Act of 1962. Public Law 87-645. 87th Cong., 2d Sess. as cited in VA, 1993) following
separation from military service. The rationale for this extension was the growing scientific evidence
(much of it generated by VA researchers studying veterans) of the long delay between the
onset of MS symptoms and eventual diagnosis, as well as the possibility that environmental factors
may play a role in the etiology of MS. However, these studies also failed to find evidence
that military service contributes to MS risk, and veterans do not appear to have higher rates of

MS than the general population (Berkowitz and Santangelo, 1999; Kurtzke and Page, 1997;
Kurtzke et al. 1979, 1985, 1992; Norman et al., 1983; Page et al., 1993, 1995; VA Multiple Sclerosis
Study Group, 1956, 1957; Wallin et al., 2000).
Lessons Learned
The rationale for the MS presumption reflects two lines of reasoning used in making presumptions.
The first reflects the possibility that MS diagnosed after separation from the military
may, in fact, have been present during military service, and therefore subject to the same compensation
rules as other direct service-connection disabilities. The second acknowledges that the
etiology of MS is unclear and may be related to an environmental exposure received during military
service. Understanding that both of these arguments have been used in the MS case is important,
because the evidence required to support each is very different. In the first case, timing
is the standard (specifically the possibility of disease onset during military service), and evidence
for association between an exposure and outcome is not required. By contrast, in the second case,
evidence from some association between exposure during service and future disease is necessary.
Congress did not call for a systematic review of the scientific literature on this topic; such a
review might have allowed for more evidentiary discussion of the premise behind this presumption
and the type of evidence that might be necessary to support it.
dr53@cfl.rr.com