Monday, October 29, 2007

New Survey Finds Technology Plays a Critical Role in the Lives of People with MS

According to a new survey released this week in conjunction with the National MS Society's 2007 National Conference, many people living with multiple sclerosis who experience visual, dexterity, and cognitive challenges report that technology plays a vital role in helping them live with the disease. However, relatively few are using the assistive technologies that could help them overcome many of these challenges.
For more information on how people with MS are using technology, visit:

Tuesday, October 23, 2007

Congressional MS Caucus Grows to 53 Members

The new Congressional Multiple Sclerosis Caucus grows every day. To date, 53 members of Congress have joined the MS Caucus — six new members in just the past couple weeks.

Check out the complete list of U.S. Representatives who are leading the MS Caucus in the left column of this blog. See if your member of Congress has joined yet. If your member of Congress has not joined, call and remind them today.

The MS Caucus provides you, as an MS activist, with champions in Congress to count on for leadership and support of MS issues. It will help bolster our advocacy efforts and give us an even more effective presence on Capitol Hill.

Monday, October 22, 2007

New Movie Reminds Us to be Activists for Disability Rights

While serving in Vietnam, a young Army recruit named Richard Pimentel lost his hearing in a bomb blast. When he returned to civilian life, Richard was confronted with his new disability, with the disabilities of many of his fellow veterans, and with the struggles of a new friend living with cerebral palsy.

Richard discovered that the workforce and the community were not friendly to those living with a disability. He fought for change. In the 1970s, Richard became an advocate for disabled veterans ... and then for all people with disabilities, first in his home state of Oregon, and then nationwide. He helped them find jobs, then helped them find their own voices as activists for disability rights. Richard started a movement ... and became known for his landmark efforts on behalf of Americans with disabilities and as an authority on the Americans with Disabilities Act (ADA).

July 26, 2007, marked the 17th anniversary of the ADA. In recent years however, the intent of this law has eroded — often not providing enough protection for individuals with disabilities. Introduced on the anniversary of the ADA, the ADA Restoration Act of 2007 aims to restore the clear and comprehensive national mandate for the elimination of discrimination on the basis of disability.

Join the movement. Help commemorate the anniversary of the ADA by helping restore its primary intent. Ask your U.S. Senators to support people who live with disabilities and become a cosponsor the ADA Restoration Act of 2007. Click here and enter your ZIP code to send a quick email asking for their support.

Music Within, a new movie based on the true story of Richard Pimentel and his fight for disability rights, is coming to select theaters Friday, October 26. Check your local listings for the movie Music Within. Take your friends, family, and colleagues. The story of Richard Pimentel reminds us, as MS activists, of the importance of working for disability rights, raising our voices to help others, and taking our issues to Congress to ask for change.

Support the ADA. Act now and urge your Senators to become a cosponsor of the ADA Restoration Act.

Thank you for being an MS activist. Join the movement at

Ask Your Representative to Support Affordable MS Therapies

The cost of biological multiple sclerosis treatments — $16,500 to $29,000 each year — can unfortunately force many people to stop their prescribed therapy because they just cannot afford it. More affordable, generic options for this fast-growing and expensive category of drugs are not yet available. Read or listen to a recent NPR broadcast on this issue. It includes the story of Donna Gosbee of Wyoming who lives with MS and her struggle to afford therapy.

Many people living with MS and other diseases depend on biological drugs to sustain or improve their quality of life. For MS, those therapies include Avonex, Betaseron, Rebif, and Tysabri. Your Representative is on the House Energy and Commerce Committee, and reports indicate that members of this Committee will meet on October 31 to discuss the issue. Click here and enter your ZIP code to send a quick email to your Representative today. Tell them your story and the need for affordable MS therapies. Ask them to support the Access to Life-Saving Medicine Act (H.R. 1038).

The U.S. Senate has passed legislation that would establish a course for approving safe, effective, affordable, and comparable versions of biologic therapies for MS and other diseases. Unfortunately, the House still has not yet taken up a similar bill. Members of the House of Representatives will be meeting this month to talk about creating a pathway for the approval of follow-on biological drugs.

It is imperative that the House Energy and Commerce Committee take action on this bill, where Congressman John Dingell (MI) and the rest of the committee will help shape the final legislation. The time for Congress to take action is now. The Access to Life-Saving Medicine Act — introduced by Congressman Henry Waxman (CA) — would provide a statutory pathway for the Food and Drug Administration (FDA) to review and approve generic biologic therapies.

Biologic (also known as biological or biotech) drugs are produced from living cell cultures rather than synthesized chemically. The generic drugs that are currently available are synthetically exact copies of the brand name original, based on a precise chemical composition. Generic versions of biologic drugs, on the other hand, would need to allow for nuances in the cell cultures while meeting certain parameters that are strict enough to ensure they are just as safe and effective as the originals.

Take a minute to write your Representative today. Ask them to move forward with the Access to Life-Saving Medicine Act (H.R. 1038). Congress can provide the FDA with a pathway for approving safe, effective, and lower-cost versions of biologic drugs. And give people living with MS and other diseases more affordable options for therapy.

Tuesday, October 16, 2007

Help Determine the Healthcare Positions of Presidential Candidates

Research!America and their supporting partners have announced the launch of Your Candidates–Your Health: Presidential Primaries 2008. Check it out at:

Let the candidates know that you want to see their positions on important healthcare issues, including MS, by responding to the questionnaire.

Back in May, you helped us collect information on your Senators and Representatives, to see if they were as focused on accessible, affordable quality health care as we are. This new questionnaire is specific to presidential candidates. The success of Your Candidates–Your Health is dependent on presidential candidates hearing from you. By clicking on each candidate's photo on the site, you will find a link to their e-mail address as well as sample text for a message.

The National Multiple Sclerosis Society is working in partnership with Research!America to collect this important information.

Thursday, October 11, 2007

In the News: Battling MS with Kevin Bacon

When Robin Maxwell started feeling numbness and tingling in her legs in the fall of 2006, she wasn't overly concerned. Having recently run both a marathon and another long-distance race, the 39-year-old resident of Charlottesville, Virginia, figured she'd just been overdoing it. But when the pain moved up to her stomach and neck, she became alarmed. In January 2007, her doctor called her with the diagnosis: she had multiple sclerosis ...

Not long after her diagnosis, Maxwell heard about a Web site that actor Kevin Bacon had started called ... She raised nearly $18,000 for her local MS chapter [the Blue Ridge Chapter]. And she finished as one of the top six fundraisers on Bacon's site and won $10,000 for MS research...

"Fundraising and activism," said Maxwell, "has brought in so much joy. ... I can be a part of what's going to make the situation better, not just for me, but for so many people."

These are a few excerpts from an October 10 broadcast on CNN. Click here to read the complete story.

Tuesday, October 9, 2007

Update on the Americans with Disabilities Act Restoration Act of 2007

Congressman Jerrold Nadler (NY) recently held a legislative hearing on the Americans with Disabilities Act Restoration Act of 2007 (H.R. 3195). This bill aims to restore the ADA's clear and comprehensive national mandate for the elimination of discrimination on the basis of disability.

In recognition of the ADA, Representatives Steny Hoyer (MD) and James Sensenbrenner (WI) introduced the ADA Restoration Act of 2007 on the anniversary of the ADA on July 26.

Nadler is chairman of the Judiciary Subcommittee on the Constitution, Civil Rights and Civil Liberties. “The ADA is the one the most important civil rights laws of our time, but this historic law has been diluted by the courts. In ruling after ruling, the courts have found that people with serious health conditions such as cancer, multiple sclerosis, diabetes and epilepsy are not 'disabled enough' to qualify for protection from disability discrimination under the ADA. That was never the intent of Congress, and we must bring clarity to the law,” he said.

The bill currently has 207 co-sponsors, thanks in part to emails from MS activists. Click here to read the recent MS Action Alert on this issue.

Thursday, October 4, 2007

Renewed Attention to Medicare "In the Home" Restriction

Some people who live with MS and use a mobility device are confined to their homes due to a certain Medicare restriction on reimbursement. Medicare Part B still will only provide reimbursement for power wheelchairs or scooters that are used inside the home. For those who need a mobility device to get around in the community outside, reimbursement is denied.

Eliminating the "in the home" restriction is imperative to providing necessary and deserved mobility to people living with MS and other disabilities. Click here and enter your ZIP code to send a quick email to your Senators. Ask them to help lift the "in the home" restriction by co-sponsoring this legislation.

This is the same issue that MS activists have been pursuing for awhile. Senators Jeff Bingaman (NM) and Susan Collins (ME) have renewed interest in this issue by reintroducing the Medicare Independent Living Act (S. 2103).

Statutory language currently is interpreted by Medicare to restrict coverage of mobility devices to only equipment considered reasonable and necessary inside a beneficiary's home. This legislation seeks to lift that restriction under Medicare Part B. S. 2103 is a companion bill to H.R. 1809, introduced in the House by Congressmen Jim Langevin (RI) and Jim Ramstad (MN) back in March. The issue has early support. The Senate bill was reintroduced with five co-sponsors, and the House bill now has 33 bi-partisan co-sponsors.