Wednesday, April 25, 2007

Report Calls on Medicare to Lift Mobility Restriction

The Institute of Medicine released an interesting new study today that found more than 40 million Americans currently have some sort of disability. In response, the report called on Congress for more funding for research “to improve the lives of people with disabilities.”

Of particular interest, the report underscored a core policy issue that MS activists have been pushing recently — lift the “in the home” restriction for Medicare coverage of mobility devices. Coverage currently is restricted to only those devices that are reasonable and necessary in the patient’s home. But many beneficiaries need to obtain wheelchairs or scooters for use inside and outside the home.

In addition, the report called for the elimination of the two-year waiting period for Medicare eligibility for individuals receiving Social Security Disability benefits. Read the complete news here.

Monday, April 23, 2007

Support Generic Alternatives to Expensive Biologic Drugs

Providing the Food and Drug Administration (FDA) with a statutory pathway for approving safe, effective, and lower-cost versions of biotech drugs can help improve the lives of people with multiple sclerosis (MS) and other diseases. As Congress works toward re-authorizing the Prescription Drug User Fee Act (PDUFA), it makes sense to attach FDA-related legislation that would also advance generic versions of biotech drugs. Click here to take action on this issue.

Many people living with MS depend on biologic drugs to sustain or improve their quality of life. But the cost of biologic drugs ($16,500 to $26,000 each year) can force many to stop their prescribed therapies because they cannot afford them. Currently, no generic alternatives are available for this fast-growing and expensive category of drugs.

The Access to Life-Saving Medicine Act — introduced by Congressman Waxman — would provide a statutory pathway for the FDA to review and approve safe, effective, and affordable generic biological therapies. The House Energy and Commerce Committee currently is discussing this issue. MS activists are taking action.

Friday, April 13, 2007

New Research To Examine Increased Risk of Multiple Sclerosis Among Veterans

Cases Suggest MS Could be Driven by Environmental Factors
Emerging research has identified a possible increased risk of developing multiple sclerosis (MS) among Gulf War veterans. Data from the Department of Veterans Affairs MS Centers of Excellence and the Department of the Defense will help further investigate the link.

Of veterans with MS who were deployed in the Gulf War, more than 500 have been determined to be a service-connected by the VA. There are likely many unidentified cases. The results of this new study could show progress into the causes of MS, while unveiling another health risk for American veterans, in an environment of increasing concern about post-service care. View the story of one veteran in St. Louis who is living with MS.

“These preliminary data suggest a potential link between military service in the Gulf War and an increased risk of developing MS. We could be one step closer to unlocking the environmental triggers of MS,” Mitch Wallin, MD, MPH, lead investigator on the study, said. “These results are important to the health care of our military veterans and all individuals living with MS. There is a critical need for further research.”
Dr. Wallin is Associate Professor of Neurology at Georgetown University School of Medicine and Associate Director of Clinical Care at the VA MS Center of Excellence-East in Baltimore.

Recent empirical evidence also shows an increase of MS right after the Gulf War among Kuwaitis. These data suggest that the cases of MS are, at least in part, being driven by environmental factors. Gulf War veterans who served in the combat theater were exposed to a number of environmental agents including multiple vaccinations, viral and parasitic organisms, smoke from oil well fires, and more. Despite several decades of research, MS and its causes still are not fully understood, and there is no cure.

Overall federal funding for MS research has declined in recent years. However, Congress currently is looking at a possible $15 million appropriation into Department of Defense research that could help further explore the causes of MS.

Stem Cell Passes, Other MS Policies Make Progress

Now that Congress is returning from their spring recess, several MS policy priorities are getting attention. This Federal Focus provides an update on the following issues and ways you can get involved as an MS activist.
  • Senate Passes Stem Cell Research Enhancement Act
  • Medicare “in the home” Legislation is Introduced
  • Members of Congress Sign On to Support MS Research Funding
  • BioGeneric Drug Legislation Moves Forward
  • New Social Security Disability Guidebook Available

Senate Passes Stem Cell Legislation

MS activists achieved a victory this week. On April 11, the Senate passed the Stem Cell Research Enhancement Act (S. 5) with a bi-partisan vote of 63-34. S. 5 is modified from the version passed by the House in January (H.R. 3). It not only seeks to overturn the Administration’s ban on federal funding for research on new embryonic stem cell lines, but also includes language that encourages the National Institutes of Health (NIH) to pursue other forms of stem cell research.

Thank you for your diligent efforts to help pass embryonic stem cell legislation for the promise it holds for MS. Take a moment to call and thank your Senators who voted yes on this bill at 1-800-828-0498. Find the roll call vote here.

The legislation is expected to move to the House soon, where most anticipate it will pass. President Bush maintains his vow to veto any legislation lifting his ban on federal funding for embryonic stem cell research. However, there is still hope for some progress. Three Senate supporters were not available to vote on the bill, meaning only one opponent would need to change their vote in order to have the 67 votes necessary to override a Presidential veto.

A competing stem cell research bill known as the Hope Offered through Principled and Ethical Stem Cell Research Act, or the HOPE Act (S. 30), promotes alternative methods of stem cell research. It passed the Senate by a vote of 70-28.

Medicare “In-the-Home” Legislation Introduced

Congressmen Langevin (D-RI) and Ramstad (R-MN) introduced the Medicare Independent Living Act (H.R. 1809) on March 29. The initial enthusiasm in the House is encouraging. Upon its introduction, 11 bi-partisan co-sponsors signed on in support of the bill.

The measure seeks to lift the “in the home” restriction on mobility devices for people with disabilities under Medicare Part B. Currently, statutory language is interpreted by Medicare to restrict coverage of mobility devices to only equipment considered reasonable and necessary inside a beneficiary’s home. Those who can manage inside their homes, but require a power wheelchair or scooter for use outside, currently are denied reimbursement. Eliminating the “in-the-home” restriction is imperative to providing necessary and deserved mobility to people living with MS and other disabilities.

Legislators Sign On to Support MS Research Funding

Your MS activism is helping build momentum in support of a $15 million appropriation for multiple sclerosis (MS) research at the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP). Check out recent news coverage featuring a St. Louis veteran living with MS.

This funding is allocated under the annual DoD appropriations bill, so the support of all members on House and Senate Appropriations Defense Subcommittees is important. We still have a lot of work ahead, and we will be calling on you to help as the process moves forward. More than 20 Senators and nearly 20 members of the House have signed on to letters asking that this funding be appropriated. Among the names are some powerful allies.

Barack Obama – IL (sponsor)
Norm Coleman – MN (sponsor)
Dick Durbin – IL
John Warner – VA
Ted Kennedy – MA
Jim Bunning – KY
John Kerry – MA
Barbara Boxer – CA
Jeff Bingaman – NM
Amy Klobuchar – MN
Jack Reed – RI
Debbie Stabenow – MI
Joe Lieberman – CT
Sheldon Whitehouse – RI
Bernie Sanders – VT
Bob Casey – PA
Daniel Akaka – HI
Maria Cantwell – WA
Arlen Specter – PA
Richard Burr – NC
Robert Menendez – NJ

Russ Carnahan – MO 3rd (sponsor)
Rick Renzi – AZ 1st (sponsor)
Henry Waxman – CA 30th
Lois Capps – CA 23rd
Allyson Schwartz – PA 13th
Peter Roskam – IL 6th
John Sarbanes – MD 3rd
Jim Langevin – RI 2nd
Patrick Kennedy – RI 1st
Carolyn McCarthy - NY 4th
John Conyers – MI 14th
Todd Platts – PA 19th
John Larson – CT 1st
Chris Shays – CT 4th
Collin Peterson – MN 7th
Dennis Moore – KS 3rd
Ed Towns – NY 10th
Barney Frank – MA 4th

If you see the name of your Senator(s) or Representative above, please call and thank them for their support. If you do not see your Representative listed above, call today and ask them to contact Congressmen Carnahan’s or Renzi’s office to sign on. Members of the House can sign on to the letter until April 20.

BioGeneric Drug Legislation Moves Forward
The Access to Life-Saving Medicine Act (H.R. 1038 and S. 623) currently is being evaluated in Congress and several hearings have been scheduled. As the bills move through the legislative process, we will be calling on MS activists to encourage support from their legislators.

This Act will provide a statutory pathway for the Food and Drug Administration (FDA) to review and approve safe, effective, and affordable biological equivalent therapies. For many people living with MS who depend on biologic drugs to sustain or improve their quality of life, the cost can be staggering and can force many of them to stop their prescribed therapy. But this bill establishes a scientifically rigorous process for approval of biogeneric drugs, by authorizing FDA to determine the studies necessary to show that a new product is clinically comparable to the brand name product.

New Social Security Disability Guidebook Available
The Society has heard many stories of denials and delays associated with the Social Security disability application process from people with MS and their physicians. In response, the Society launched an ambitious and comprehensive effort to break down the barriers, make the application process easier, and provide better support. The Society worked with the Social Security Administration (SSA) to update the criteria it uses to evaluate claims, participated in SSA medical training forums, and produced an improved guidebook on the Social Security disability process.

The new guidebook is now available. It was designed specifically for people with MS, and it contains helpful tips for applicants and their physicians, checklists and worksheets to stay organized, and a glossary of terminology. To download a copy, visit:

We are MS activists. Join the movement at