In the News: Editorial Responds to Disability Benefit Delays

... The backlog of applicants who are awaiting a decision after appealing an initial rejection has soared to 755,000 from 311,000 in 2000. The average wait for an appeals hearing now exceeds 500 days, twice as long as applicants had to wait in 2000.

Typically two-thirds of those who appeal eventually win their cases. But during the long wait, their conditions may worsen and their lives often fall apart. More and more people have lost their homes, declared bankruptcy or even died while awaiting an appeals hearing.


This is an excerpt from a December 11, 2007, editorial from the New York Times. Click here to read the complete piece.


New SSDI Resources Available
The National MS Society has just released a guidebook to help people living with MS navigate the Social Security disability application process.
For more information, visit www.nationalMSsociety.org/SSDI

In the News: Disability Cases Last Longer as Backlog Rises

Steadily lengthening delays in the resolution of Social Security disability claims have left hundreds of thousands of people in a kind of purgatory, now waiting as long as three years for a decision. Two-thirds of those who appeal an initial rejection eventually win their cases.

But in the meantime, more and more people have lost their homes, declared bankruptcy or even died while awaiting an appeals hearing, say lawyers representing claimants and officials of the Social Security Administration, which administers disability benefits for those judged unable to work or who face terminal illness.

This is an excerpt from a December 10, 2007, New York Times article. Click here to read the complete story.

New Giving Challenge Could Give $50,000 for Multiple Sclerosis

Just visit www.parade.com/givingchallenge between December 13 and January 31, 2008.
You can "champion a cause" or "give to a cause" ... and you'll receive your own interactive web banner.

The top eight individuals who attract the most donors to their cause will get $50,000 for that charity.

The top 100 nonprofits with the most donations will get $1,000.

Thank you for supporting the MS cause!

Spend an hour live online with country music star Clay Walker

At 7:30 pm ET (6:30 CT) on December 12, join the National MS Society's live Learn Online® Webcast with Clay Walker at www.nationalmssociety.org. Discover Clay's proactive approach to treating MS, find ways to maximize MS therapies, and pick up tips from Clay on Joining the MS Movement. Email questions in advance to ClayQuestions@nmss.org

Visit www.nationalmssociety.org to learn more about participating in the live Clay Walker Webcast.

Just Released Videos from the Society's "Moving Forward Film Festival"

Five individuals living with multiple sclerosis created and produced videos on their experiences with the disease. Those videos were featured at the Moving Forward Film Festival at the National MS Society's 2007 National Conference recently in Dallas. Click here to view all the videos.

Update on Medicare Therapy Caps and ADA Restoration Act

MS Exceptions Set to Expire on Medicare Therapy Caps
Rehabilitation therapy under Medicare might no longer be affordable for some people living with multiple sclerosis and other conditions. The exceptions process to Medicare's arbitrary reimbursement limits, or therapy caps, on rehabilitation services is set to expire on December 31, 2007.

MS activists have long been determined to eliminate Medicare therapy caps altogether on reimbursement for physical therapy (PT), speech language pathology, and occupational therapy (OT) services. In 2008, the therapy cap reimbursement level is scheduled to be $1,810 for PT and speech therapy, and a separate cap of $1,810 will apply to OT services.

To help alleviate the burden, Congress instituted a process for exceptions that allow beneficiaries to apply for therapy services through Medicare above the current dollar cap. MS currently has an automatic exception, making it easier for people with MS and their healthcare providers to continue therapy without interruption. But without Congressional action, the therapy cap exceptions will be eliminated, further complicating and limiting necessary therapy services.

On November 6, Congressman Earl Pomeroy (ND) introduced the Long Term Care Quality and Modernization Act (H.R. 4082). Part of this bill (Section 108) seeks to extend the therapy caps exceptions process through December 31, 2009.

In addition, the Medicare Access to Rehabilitation Services Act (S. 450/H.R. 748) seeks to repeal the permanent therapy caps altogether — the best long-term solution. However, if the therapy caps cannot fully be repealed, then it is imperative to extend the exceptions process in the short term. We will keep you posted as this issue moves forward in Congress.


Have Your Legislators Co-Sponsored the ADA Restoration Act Yet?
During the past year, the Society and MS activists nationwide have supported the ADA Restoration Act (H.R. 3195/S. 1881) introduced by Representatives Steny Hoyer (MD) and James Sensenbrenner (WI), and Senators Tom Harkin (IA) and Arlen Specter (PA). This bill seeks to restore the protections and intent of the landmark Americans with Disabilities Act (ADA), as passed by Congress in 1990 with regard to disability discrimination and employment.

The House bill has 235 bipartisan co-sponsors, which is more than half of all the members of the House of Representatives. Click here to see whether your Representative is a co-sponsor. The ADA Restoration Act will help restore protections for people living with MS and other disabilities. People living with MS manage their symptoms with medication to help prevent or ease their disability. But that can sometimes make them appear too functional and could preclude them from ADA protections. Despite the ADA's intent to create a level playing field in the workplace, the full promise of the law has never been fulfilled.

The Senate bill still needs more support. Senators Harkin, Specter, and Edward Kennedy (MA) are the only sponsors so far. Take action. Click here and enter your ZIP code to urge your Senators to co-sponsor this important legislation on disability rights.

Are You Registered to Vote? Deadlines are Soon for 2008 Primary Elections

Your Vote in the 2008 Presidential Primaries Could Help Support MS Issues

The 2008 Presidential Primary Elections will begin in January. If you are not already registered to vote, now is the time. Many state deadlines for voter registration start in December. Click here for the voter registration deadline in your state: www.vote411.org

As a nonprofit organization, the National Multiple Sclerosis Society is nonpartisan and does not endorse any political candidates. We do encourage all legislators to join the movement and support issues that will help move us closer to a world free of MS and other disabilities.

Voting in the primary and general elections is one way to help advance MS issues. The Society's priority MS issues include:

• Increased MS research
• Disability rights
• Access to quality health care
• Increased long-term care resources
• Accessible, affordable insurance
  

Thank you for voting and for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy

MS Question Could be on YouTube Debate

Karen Barron from South Carolina, who has lived with multiple sclerosis for 32 years, submitted her question for the Presidential YouTube Debate tonight. It requests support for federal funding for stem cell research. View Karen's question here.

Click here for more information on the CNN debate tonight.

Insurance Stops Covering Intravenous Immune Treatment

After three and a half years on intravenous immune globulin, or IVIG, to treat her multiple sclerosis, insurance is no longer paying for Simone Biase's therapy.

"It's costing about $4,000 dollars a month," said the IVIG patient.

She's paying for it herself for now while appealing her insurance company's decision and trying to stretch her monthly treatments. Many insurance companies are clamping down on covering the costly therapy ... with devastating results for patients.

Click here to read or view this complete news story.

MS Activism Success — New Defense Funding Available for MS Research

Your MS activism has paid off big. For the first time ever, multiple sclerosis research will be eligible for funding under the Department of Defense (DoD). Thank you.

Congress has listed MS as a research area eligible for funding under the DoD's Peer Reviewed Medical Research Programs (PRMRP). PRMRP is a sister program to the Congressionally Directed Medical Research Program (CDMRP) under DoD that we've been working toward all year. This program has a budget of $50 million that can only be spent on research areas that Congress directs. It is a new and untapped funding source for MS research, and will complement the work that NIH is doing to move us closer to a world free of MS.

The PRMRP was established in 1999 and continues to fulfill its Congressional intent by funding research of clear scientific merit with relevance to the health of the military and the American public. PRMRP Congressional appropriations have totaled $344.5 million through 2006 and funded 247 projects in more than 60 topic areas.

All year, you have advocated to Congress to provide Defense funding for MS research. While this program is not the exact line item we asked for, it is a significant gain in our effort expand research funding for MS in the federal arena.

The Society continues to carefully watch emerging evidence from Veterans' Affairs researchers and others that might point to an increased risk of MS among combat veterans. More research must be conducted to better understand a potential environmental trigger.

The Defense Appropriations (H.R. 3222) funding bill was signed by the President on November 13, 2007. As the program is implemented, we will let you know how researchers and others can apply for this funding. Thank you again for all your hard work and MS activism on this issue. We will need your voice again next year.

Make a Call Today to Help Fund MS Research and Respite Care

Unfortunately, President Bush vetoed the FY 2008 Labor-HHS-Education Appropriations bill (H.R. 3043) on Tuesday. Thank you to all MS activists for taking action on this important issue.

Now, Congress will attempt to override the president's veto. Take a minute today to call your members of Congress. Encourage them to override the president's veto of H.R. 3043 and support funding for critical health programs, including multiple sclerosis research and respite care. Call the Capitol switchboard at 1-800-828-0498 and ask for your Representative and both Senators.

The president's action against the health and education funding was not surprising, as he had repeatedly vowed to veto the bill. But the result is still disappointing. This bill would have provided a 3.1% increase for the National Institutes of Health (NIH), including MS research, and a 6% increase for the Centers for Disease Control and Prevention (CDC).

In addition, Congress had incorporated nearly $4 million in funding in the bill for the development of a comprehensive MS center at West Virginia University in Morgantown, W.Va. And it included $2 million for state respite care grants authorized by the Lifespan Respite Care Act (which MS activists helped pass last year).

Call your legislators today. We will continue to keep you updated on the results of the override attempt.

Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy

MS Marathoner is Inspiration for MS Activists

Woman Living with MS is Last to Finish NYC Marathon

When the elite athletes passed her, Zoe Koplowitz kept walking. When the hard-core runners went by, she kept walking. And finally, when every other one of the thousands of people in the race had finished, she kept walking.

Koplowitz, 59, crossed the finish line and completed her 20th New York City Marathon on Monday — just under 29 hours after she had started. Wearing braces on her back and knee and using purple-painted crutches, Koplowitz, who suffers from multiple sclerosis and diabetes, walked the entire route, accompanied by supporters.

This is an excerpt from a November 5, 2007, Associated Press article. To read the complete story on Zoe Koplowitz's victory, click here.

President Threatens to Veto Healthcare Funding for NIH, MS Research

President Bush is planning to veto a bill that includes critical healthcare funding for MS research at the National Institutes of Health and for a new comprehensive MS center. Click here to send President Bush a quick email. Or, if you prefer, you can call the White House switchboard at (202) 456-1414 to deliver your message.

• Ask the president not to veto the Labor-HHS-Education bill (H.R. 3043) and to approve funding for multiple sclerosis research.
• Tell the president that this bill brings too much hope to people living with MS and to caregivers to justify a veto.

About the Legislation
Your MS activism has helped bring more recognition for MS in the FY 2008 Labor-HHS-Education spending bill (known has Labor-HHS). Congress has incorporated nearly $4 million in funding in the bill for the development of a multiple sclerosis and neurodegenerative disease research center at West Virginia University in Morgantown, W.Va. This first comprehensive center for MS research and care in West Virginia holds great promise for people living with MS not only in the state but nationwide.

In addition to this specific funding for MS, the Labor-HHS bill includes a 3.1% increase for the NIH, a 6% increase for the Centers for Disease Control and Prevention (CDC), and $2 million for state respite care grants authorized by the Lifespan Respite Care Act (which MS activists helped pass last year).

Ask President Bush not to veto this bill and to support important funding increases for NIH and MS research.

November is National Caregivers Month

November is National Caregivers Month, set aside to thank, support, educate, and celebrate more than 50 million family caregivers across the country. Get information and resources for those caring for someone living with MS.

Breaking News on NIH, MS Research Funding

Congress Could Send Funding Bill to President on Veterans Day

Breaking News: Congress is moving quickly on the fiscal year 2008 Labor, Health and Human Services and Education (Labor-HHS) appropriations bill (H.R. 3043) that funds the NIH, CDC, SSA, and other programs. You can help gain support for increased funding for MS research. The best chance of securing increased funds is to achieve veto-proof votes for the conference report in both the House and the Senate. We understand that the House intends to vote on the conference report later today.

• Click here for your Representative's phone number.
• Click here for your Senators' phone numbers.

Call and ask for their support of H.R. 3043 and a 3.1 percent increase for NIH in the Labor-HHS conference report. This bill includes important funding increases for NIH, the Centers for Disease Control and Prevention, and the Social Security Administration. It also will be a critical source of funding for multiple sclerosis research.

Senate and House Conferees Agree on Labor-HHS Bill
In a victory for medical research, a conference committee of House and Senate members on November 1 approved $29.7 billion for NIH (the leading source of research funding for MS) for FY 2008. That is an increase of $1.1 billion (or 3.1%) over the FY 2007 level. The Labor-HHS appropriation bill added $100 million to the NIH budget beyond what the Senate passed on October 23. This is major progress considering the President had proposed cuts to NIH funding. Thank you. MS activists have been taking action and encouraging support from your legislators on this issue from the beginning.

Funding for SSA
Overall, the Labor-HHS appropriation bill provides $150.7 billion in discretionary spending for education, health, labor and other agencies, such as SSA. Many disability advocacy groups have been working to address the problems associated with the backlog of disability claims and appeals at SSA. Those claims must be approved prior to receiving Social Security Disability Insurance (SSDI) cash benefits. Many people living with MS are eligible for SSDI and have endured the arduous process. To help alleviate this backlog, negotiators provided a $576 million increase (or 6.2%) for administrative costs to SSA.

Stem Cell Language Removed
The Senate Labor-HHS bill originally included language that would have expanded funding for embryonic stem cell research. However, Senators Tom Harkin (IA) and Arlen Specter (PA) removed this language in an effort to compromise. The Senate passed their bill on October 23 by a vote of 75 - 19, which is enough to override a presidential veto.

The Future of the Labor-HHS Bill
Now that the Senate and House worked out their differences, the Labor-HHS conference report goes back to each chamber for approval. In addition to the funding increases, the conference report packaged the Labor-HHS appropriations bill (H.R. 3043) with the Military Construction-Veterans Affairs appropriations bill (H.R. 2642) to make one large spending bill. This new bill is what the House and Senate will be voting on, and if it passes both chambers, it will be sent to the President. Click above to take action.

The future of this combined spending bill is uncertain. President Bush maintains that he will veto any spending bill that allocates more than he requested back in February. To override his veto, the Senate and the House must both pass the conference report with a veto-proof majority. It is anticipated that the bill will be put before the President on Veterans Day.

Follow On Biologics on Hold Until 2008
Members of the House Energy and Commerce Subcommittee on Health met on October 31 to discuss the future of the follow on (aka generic) biologics legislation (H.R. 1038). Many people living with MS and other diseases depend on biological drugs to sustain or improve their quality of life. This legislation would establish a pathway for the FDA to approve safe, effective, affordable, and comparable versions of biologic therapies for MS and other diseases. There is pressure on the House Energy and Commerce Committee to take action on this issue this year. However, the committee decided to push off working on the bill until 2008.

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. Follow on, or generic, versions of biologic drugs, on the other hand, would need to allow for slight 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. For MS, biologic therapies include Avonex, Betaseron, Rebif, and Tysabri.

Thank you for being an MS activist. Join the movement at http://capwiz.com/nmss/utr/0/?u=http%3A%2F%2Fwww.nationalmssociety.org%2Fadvocacy

MS and Your Career webcast

Thank you to everyone who participated in our live webcast event "MS and Your Career" on Saturday.

People living with MS in their 20s and 30s from across the country connected with others for a candid conversation about how to integrate life, relationships, and MS.

A recorded version and transcript of this webcast will be available soon. Check back at http://www.realtalkrealanswers.com/

Tomorrow - Saturday - Live webcast for young people living with MS

Join us tomorrow (Saturday, November 3) for our live webcast event, "MS and Your Career."

At 10am pacific, visit www.realtalkrealanswers.com to connect with others living with MS in their 20s and 30s from across the country for a candid conversation about how to integrate your life, your relationships, and your MS. (note: link to webcast will be available on this page a few hours prior to the event)

Simply log on and you will be able to submit questions in "real time" to be answered during the panel discussion. www.realtalkrealanswers.com

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: https://mymsmyway.com/

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.

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 www.nationalMSsociety.org/advocacy

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.

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: http://www.yourcandidatesyourhealth.org/.

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.

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 SixDegrees.org ... 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.

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.

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.

Congressman Carnahan Sends Letter Supporting MS Research Funding

Congressman Russ Carnahan (MO) has sent Congressman John Murtha (PA) the "Dear Colleague" letter urging support for multiple sclerosis research funding. Murtha is chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue.

The following Representatives signed the letter in support. Thank you to all MS activists who reached out to their legislator on this issue.

Tammy Baldwin (WI)
Howard Berman (CA)
Charles Boustany (LA)
Russ Carnahan (MO)
Lois Capps (CA)
William Delahunt (MA)
Lincoln Davis (TN)
Tom Davis (VA)
Bob Filner (CA)
Virgil Goode (VA)
Bart Gordon (TN)
John Hall (NY)
Patrick Kennedy (RI)
Jim Langevin (RI)
Sandy Levin (MI)
Jim Marshall (GA)
Carolyn McCarthy (NY)
Jim McDermott (WA)
Dennis Moore (KS)
Collin Peterson (MN)
Todd Platts (PA)
Rick Renzi (AZ)
Peter Roskam (IL)
Allyson Schwartz (PA)
Ellen Tauscher (CA)
John Tierney (MA)
Henry Waxman (CA)
Peter Welch (VT)
Robert Wexler (FL)

Veteran Motivates Walk MS Participants

Retired Sgt. 1st Class Bob Wolz of Kentucky lives with multiple sclerosis. He motivated local active and military veterans groups to get involved in his local Walk MS earlier this month in Elizabethtown, Ky.

Click here to read the complete story in the September 20 issue of The News-Enterprise in Kentucky.

In the News: Inaccessible Medical Equipment

Take a moment to consider a basic part of a doctor's office: the exam table. What if you weren't able to climb up on that hard, plastic table with the crinkly, white paper? Frail elderly people often can't, and they need the most medical care. Younger people with disabilities often can't climb onto the exam table, either.

There is a lot of medical equipment that requires patients to stand or climb, and the inability to use that equipment can keep people from getting the medical care they need.


This is an excerpt from a September 13 story on NPR's Morning Edition. Although it does not reference multiple sclerosis specifically, the challenges of accessing medical and diagnostic equipment are common in the MS community. This story helps bring some attention to this important issue. Click here to read or listen to the entire NPR story.

Summary of MS Activism in Support of MS Research Funding

Where We Are and Where We're Headed

Throughout the past year, MS activists and the National MS Society have been aggressively pursuing a new avenue of federal funding for multiple sclerosis research. We have focused on a $15 million appropriation through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD) in the FY 2008 Defense Appropriations bill. This would serve as a new source of funding for MS research, and complement existing efforts at the National Institutes of Health.

As this issue has danced through the legislative process this year, you have probably received many MS Action Alerts asking for you to encourage support from your Representative and Senators. You might have even sent a letter to the editor of your local newspaper. MS activists like you have worked hard to advance this issue on many levels. As promised, we want to keep you updated on the progress. The Federal Focus this month is dedicated to outlining where we are on this issue, how far we have come, and what you can do now.


About CDMRP
First created in 1992, the Congressionally Directed Medical Research Programs (CDMRP) is housed in the Department of Defense. Congress first created the program, at the behest of grassroots advocacy organizations, to fund research on the screening and diagnosis of breast cancer among military woman. Since then, CDMRP's focus has expanded to incorporate research on nearly 20 diseases and conditions, such as ALS, post traumatic stress disorder, and tuberous sclerosis. CDMRP is a unique and nimble program that funds high-risk, high-reward research that complements the work conducted at the NIH. It only makes sense that CDMRP also explore multiple sclerosis research.


Why MS Research?
Preliminary evidence suggests that combat veterans could have an increased risk of developing MS. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected," and more than 25,000 veterans currently receiving treatment through the VHA have a diagnosis of MS. In addition, an epidemiological study found an unexpected, two-fold increase in MS between 1993 and 2000 among residents of Kuwait, which suggests an environmental trigger for MS.

"MS is a disease that is most likely triggered by one or several environmental insults ... Exposures unique to [Gulf War] theater may have increased GW veterans' risk
for developing MS."

- research hypothesis from Dr. Mitch Wallin,
neurologist who treats veterans with MS at the
Department of Veterans Affairs' MS Center of Excellence in Baltimore

The Society is basing the request for MS research funding in the CDMRP on this and other compelling evidence. Funding MS research at DoD should be a priority for serving those who served us. But the work could benefit all Americans who live with multiple sclerosis. Read more background on this issue.


MS Activists in Action
At the end of 2006, the National MS Society began a petition drive to help urge Congress to support funding for MS research through the CDMRP. It was our first step in pursuing this new avenue of research. The goal was to collect as many signatures as possible to demonstrate the overwhelming support for MS research across the country. With your help, the petition successfully garnered more than 100,000 signatures nationwide.

In March 2007, MS activists who attended the annual MS Public Policy Conference in Washington, DC, brought this issue to Capitol Hill. They met with Representatives and Senators, and asked them to show their support by signing a House and Senate version of a "Dear Colleague" letter, respectively. The letters were directed at each chamber's Appropriations Subcommittee on Defense. MS activists gave their legislators a CD of all 100,000 petition signatures to show the nationwide attention to this issue. The visits resulted in 20 Representatives and 21 Senators signing their respective letters.

Since then, the MS Action Network has been alive with calls for action. Each time the issue has changed course in Congress, it has needed your emails, telephone calls, and in-person visits with legislators. So far, MS activists have taken action more than 19,000 times on this issue alone.


Congressional Activity
The Defense appropriation for MS research funding has seen a lot of Congressional movement since its inception. Following is a summary of activity in the House of Representatives and in the Senate...

House Status
Congressman Russ Carnahan (MO) and Congressman Rick Renzi (AZ) spearheaded efforts in support of this issue in the House back in March by sponsoring a "Dear Colleague" letter. Twenty Representatives signed the bi-partisan letter that was then sent to Chairman John Murtha (PA) and Ranking Member C.W. Bill Young (FL) of the House Appropriations Subcommittee on Defense. This letter made the official request for a $15 million appropriation for MS research through CDMRP at DoD in the FY 2008 Defense Appropriations bill. The Subcommittee and full Appropriations Committee reported out their Appropriations bill (H.R. 3222), and the House passed this bill on August 5.

"Supplementing current MS research with additional money from the Department of Defense would be a significant step toward providing hope for people with MS."

- Congressman Russ Carnahan (MO)

Unfortunately, H.R. 3222 did not include any funding for MS research. But the MS champions in Congress did not give up. Chairman Murtha finally agreed to work to incorporate at least $10 million in funding during the conference committee, where the House and Senate differences would be worked out. On August 29, Congressman Carnahan began circulating another "Dear Colleague" letter thanking Chairman Murtha for his commitment. Currently, the House is waiting for the Senate to act.

Senate Status
On the Senate side, Senator Barack Obama (IL) and Senator Norm Coleman (MN) spearheaded the MS funding request through their own "Dear Colleague" letter. Twenty-one Senators joined their colleagues in sending the appropriation request to Chairman Daniel Inouye (HI) and Ranking Member Ted Stevens (AK) of the Senate Appropriations Subcommittee on Defense. This Subcommittee currently is crafting their version of the FY 2008 Defense Appropriations bill. It is anticipated that the Subcommittee will vote on the bill in the second week in September with a full Senate vote scheduled for the end of September.

Once the Senate passes their bill, the House and Senate versions will be conferenced together. We will continue to keep you updated. We are hopeful that through your advocacy efforts and hard work, the Senate will choose to include an appropriation for MS research.


Now What?
You can do two things right now to help keep this issue moving forward in both the House and the Senate:

• Send an email to your Representative asking them to: sign the "Dear Colleague" letter that Congressman Carnahan is circulating. Click here and enter your ZIP code to take action. The letter calls for support of funding for MS research during the DoD Appropriations conference between the House and the Senate. This letter, being sent to Congressman Murtha, chair of the House Appropriations Subcommittee on Defense, will help encourage him to keep his commitment to fight and include at least $10 million for MS research in the conference report.
  
  
• Send an email to your Senators asking them to: encourage the Senate Appropriations Subcommittee on Defense to include the full $15 million for MS research in their version of the DoD Appropriations bill. Click here and enter your ZIP code to take action. This is a critical time to influence the Subcommittee's decisions because they are currently working on crafting the bill.

Thank you for being an MS activist. Join the movement at www.nationalMSsociety.com/advocacy

Urge Your Representative to Sign the Letter Supporting MS Research Funding

The following Representatives have signed the "Dear Colleague" letter urging support for multiple sclerosis research funding. If your Representative is NOT on this list, click here and enter your ZIP code to send them a quick reminder to sign the letter. If your Representative has already signed on, keep an eye out for an upcoming MS Action Alert to thank all the signers.

• Russ Carnahan (MO)
• Lois Capps (CA)
• Tom Davis (VA)
• John Hall (NY)
• Jim Langevin (RI)
• Carolyn McCarthy (NY)
• Jim McDermott (WA)
• Todd Platts (PA)
• Peter Roskam (IL)
• Peter Welch (VT)

The letter is from Congressman Russ Carnahan (MO) to Congressman John Murtha (PA), chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue. While it does cover the same request as the "Dear Colleague" letter that MS activists supported at the MS Public Policy Conference back in March, this letter is different — it is specifically directed toward the committee chair.

Congressman Murtha has indicated that he will fight to include at least $10 million for MS research during the Defense appropriations conference report. This is an important step because MS funding is currently not in the version of the appropriations bill that the House passed. This letter from his colleagues in the House will help encourage Congressman Murtha to support the issue and thank him for his commitment.

You and other MS activists have been pushing for $15 million to fund MS research in the Congressionally Directed Medical Research Program (CDMRP) at the DoD for most of this year. Thank you. This will be one of your last opportunities to influence the issue in the House. Click here for more background on this issue.

Encourage your Senators to Support a New Source of MS Research Funding

My name is Paul Perrone and I am a 42-year-old retired United States Air Force Sergeant and Gulf War Veteran. Also known as the author of the book, Toy Soldier: Sergeant Perrone's Story, and an advocate, the most important title I hold is daddy to a beautiful three-year-old boy we call, PJ. Oh, by the way I also have multiple sclerosis.

The symptoms of MS came on within a month after my return from Saudi Arabia in April of 1991. Finally, after seven years of uncertainty and many medical tests and procedures I received the diagnosis. Already retired from the military for chronic fatigue since 1992, advocating on behalf of other ailing war veterans became an important part of the way I spent many hours, which turned into days, which turned into weeks, and then years.

Help other veterans and me by joining the movement.

- Sergeant Paul Perrone

Click here and enter your ZIP code to send a quick email to your Senators. Ask them to encourage the Senate Appropriations Subcommittee to include $15 million for MS research in their Department of Defense appropriations bill. The time to act is now.

This new source of federal funding for MS research through the Office of Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense could soon be available. All summer you worked hard to persuade your U.S. Representative to support this funding. Now the issue needs Senate support.

The Senate is at a critical point in deciding on the $15 million federal appropriation for MS research at the CDMRP. The Senate Appropriations Subcommittee on Defense is currently working on their bill, and it could be completed and voted on by the second week in September. In an attempt to help persuade the Subcommittee to include the MS research funding, we ask you to send a quick email to your Senators today. If your Senator is a member of the Senate Appropriations Subcommittee on Defense, they could be even more effective in helping advance this issue.

You have a unique opportunity to help encourage their support before a decision is made the second week of September. The Department of Defense has a responsibility to identify and research all diseases that could be related to military service, including MS. Thank you for being an MS activist.

Representatives Urge Support for MS Research Funding

Members of the U.S. House of Representatives are actively sending the following Dear Colleague letter to Congressman John Murtha (PA), urging his support of funding for multiple sclerosis research in the DoD appropriations conference report and thanking him for his commitment to the cause. Congressman Murtha is chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue. Click here and enter your ZIP code to ask your Representative to sign this Dear Colleague letter in support of MS research funding.

Dear Colleague Letter

The Honorable John P. Murtha
Chairman, Subcommittee on Defense
House Appropriations Committee
H-149 Capitol Building
Washington, DC 20515

Dear Chairman Murtha:

Congratulations on final passage of the Department of Defense Appropriations bill. While your subcommittee produced a Defense bill that is impressive in its entirety, we had hoped that funding for multiple sclerosis (MS) research would be included.

We are pleased to hear that you have committed to work to include funding for MS research in the bill as it moves through the conference committee process. Your efforts to include at least $10 million for MS research within the Congressionally Directed Medical Research Program (CDMRP) will mean a great deal to our nation's soldiers whose lives have been adversely affected by this debilitating disease.

As you know, research at the CDMRP could help further investigate a potential link between military service and the incidence of MS. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS.

• A study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies.
  
• An epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 among residents of Kuwait, which suggests a potential environmental trigger for MS.
  
• Staff at the VA's MS Center of Excellence in Baltimore, MD, has noted the need to further study the increased incidence of MS among Gulf War veterans in particular.
  
• A 2004 report, entitled "Scientific Progress in Understanding Gulf War Veterans' Illnesses: Report and Recommendations," from a study group commissioned by the VA suggests more research must be done on the potential link between MS and combat service.
  
• Approximately 25,000 veterans who are being treated at the VA have a diagnosis of MS; 5,345 of these veterans' illnesses have been deemed "service-connected", as noted above. The VA currently is funding two MS Centers of Excellence to provide clinical care and education for these veterans, but now physicians at these institutions are seeking funding to explore a potential link between MS and combat service to help identify a possible environmental trigger and better treat our veterans living with MS.

The Department of Defense has an obligation to fund MS research related to service during the Gulf War. We urge you to include at least $10 million in the Department of Defense Appropriations Conference Report. Thank you for your tremendous efforts on this important issue.

This letter requests funding for multiple sclerosis research in fiscal year 2008 and the entity to receive funding for this program is the U.S. Army Medical Research and Materiel Command, located at 1077 Patchel Street, Fort Detrick, MD 21702-5024. The funding would be used with the primary objective of identifying disease triggers, diagnostic markers, and treatments for MS to benefit the increasing number of military personnel being diagnosed with MS. We, collectively and individually, do not have a financial interest in this request, and neither do any of our spouses.

In the News: Minneapolis Apartments Offer Independence

Jackie Jacoby moves slowly and deliberately through her apartment with the help of a walker, but because the doors are wide, the cabinets are low and the bathroom is large, she can live there independently.

Jacoby's new home, Kingsley Commons, was built specifically for people with multiple sclerosis. It's the first development of its kind in Minnesota and one of only three in the country.

"You don't know from one day to the next how the disease will affect you," said Jacoby, one of a few Kingsley Common residents who are still ambulatory.

Jacoby, 57, lives with her 23-year-old daughter Andrea, who has epilepsy, in one of the building's two-bedroom apartments. The symptoms of Jacoby's MS have been in remission since July, but she continues to deal with problems caused by previous flare-ups.

This is an excerpt from an August 20 article in the Minneapolis Star-Tribune. Click here to read the entire story.

In the News: Young Caregiver Helps Mother with MS

After her first day of classes this week at the University of North Carolina's campus here, Aleyna Castillo crossed a field, passing joggers and cyclists and students sprawled on the grass, reading in the sunshine. She didn't linger at her brick dormitory. The Loudoun County teenager got into her car and drove 10 minutes to her other home.

There, in a darkened bedroom, her mother lay propped up in bed, a fan humming. Castillo brought a damp washcloth for Lynn Turner to wipe her flushed face with and a toothbrush with a Dixie Cup to spit into. She brushed her mother's hair and offered strawberries to supplement her breakfast of Pop-Tarts. Castillo's 9-year-old cousin, Anthony McNeil, dribbled a soccer ball down the hallway. "Change your shirt," she hollered after him.

Castillo, 18, is one of many teenagers across the country who are caregivers for ill or disabled relatives — a little-known group that labors under unusual stress and with few resources. Her mother has multiple sclerosis, a degenerative neurological disease that has left the 40-year-old in a wheelchair, unable to work, make dinner or shower without help. For the past year and a half, Castillo has bathed her, prepared her meals, emptied her catheter bag and given her two dozen kinds of medication. She helps take care of Anthony, too, getting him off to school and reminding him to take out the trash.

This is an excerpt from a front-page article in the Saturday issue of the Washington Post by staff writer Michael Alison Chandler. Click here to read the entire story.

Get Involved as an MS Activist — Visit Your Senators in the Local Office

Ask for MS Research Funding in the Defense Appropriations Bill

If your Senator is not on the list below, their support is needed to include multiple sclerosis research funding in the FY 08 Defense Appropriations bill.

Senators who requested MS research funding:
Barack Obama (IL) – lead

Norm Coleman (MN) – lead

John Warner (VA)

Dick Durbin (IL)

Ted Kennedy (MA)

Jim Bunning (KY)

Bernie Sanders (VT)

Bob Casey (PA)

Daniel Akaka (HI)

Maria Cantwell (WA)

Arlen Specter (PA)

Richard Burr (NC)

Robert Menendez (NJ)

John Kerry (MA)

Barbara Boxer (CA)

Jeff Bingaman (NM)

Amy Klobuchar (MN)

Jack Reed (RI)

Debbie Stabenow (MI)

Joe Lieberman (CT)

Sheldon Whitehouse (RI)

Legislators currently are at home for the summer recess. Before the end of August, schedule some time to visit your Senators in their district offices or just stop in. This is the time that legislators are listening to their constituents at home, so they will welcome the visit. Click here and enter your ZIP code to find the address and contact information of your Senators' district offices.

The FY 08 Defense Appropriations bill will be debated in the Senate next month when Congress returns from recess. During this debate, your Senators will have the authority to make our request for funding a reality by including $15 million for MS research in the Congressionally Directed Medical Research Program, which is funded by the Defense Appropriations bill.

Some points to consider when visit your Senators:

• As a constituent and an MS activist, I'm asking for your support of multiple sclerosis research funding in the Defense Appropriations bill for the Congressionally Directed Medical Research Program.
  
• In April, Senators Barack Obama (IL) and Norm Coleman (MN), and 19 other Senators, sent a bi-partisan request to the Defense Appropriations Subcommittee requesting $15 million for MS research through this Program.
  
• I urge you to make this request a reality this year by talking with your colleagues on the Defense Appropriations Subcommittee. Ask them to ensure that MS research funding is provided. (If your Senator sits on the subcommittee, they have the authority of approve this funding. Click here to find out.)
  
• More than 25,000 veterans who are being treated through the VA system have a diagnosis of multiple sclerosis. A study published in the Annals of Neurology recently identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
  
• Recent studies from combat areas in the Persian Gulf region point to a possible environmental trigger from neurotoxins. More funding is necessary to explore the possibility that something in the environment could trigger this disease among veterans and other Americans. Thank you.
  

Tell us how it goes. If you receive feedback when you call that might be helpful, email us at msactivist@nmss.org

In the News: Rhode Island Letter to the Editor

The Newport Daily News in Newport, RI, ran a letter to the editor recently in support of including $15 million for multiple sclerosis research in the federal Defense Apporopriations Bill. Rhode Island Chapter President Kathy Mechnig submitted the letter.

The complete version is not available online, but here is a brief excerpt:

A significant number of people throughout Rhode Island are impacted by multiple sclerosis — approximately 21,000. Despite decades of study, the causes of MS are not understood and there is no cure. But for many people in Rhode Island and nationwide who live with this disease, new research is within reach ... John Thompson of Cranston [RI] lives with the challenges of multiple sclerosis since he served in the Army in Vietnam. It is important for the health of all veterans and others who live with MS to investigate this further. With more funding for research, we could investigate the causes, explore additional treatments, and find a cure.

MS Activists Raise Awareness for MS Center

MS activists Bill Raney and Karen Jackson are helping raise awareness for a proposed multiple sclerosis center in West Virginia. Spearheaded by Senator Robert Byrd, this project holds great promise for people living with MS not only in West Virginia but nationwide. As individuals living with MS, they both spoke about the need for this center in a news story that aired on WBOY-TV on August 9.

View the full broadcast here. Then click on the "Watch Story Video" link. If you have trouble with that link, click here to try viewing it through Windows Media Player.

This could be the first comprehensive center for MS research and care in West Virginia, thanks to Senator Byrd. But this project still needs to make it through Congress. If you live in West Virginia, click here and enter your ZIP code to send a quick e-mail to Senator Byrd. Thank him and ask for his ongoing attention to this effort.

Congressman Forbes of Virginia Announces Joining the MS Caucus

Congressman J. Randy Forbes (VA) issued a press release recently that announced his decision to join the Congressional Multiple Sclerosis Caucus.

"Multiple Sclerosis affects more than 400,000 people in the United States and every hour someone across the world is diagnosed with MS. By joining this Caucus, I look forward to having the opportunity to discuss issues related to MS with my fellow Members of Congress as well as continue to raise awareness about the disease,” said Forbes.

Read the complete press release here. See the sidebar on the left of this blog to view the list of MS Caucus members to date.

In the News: Stem Cell Challenges in Missouri

When Missouri voters approved a constitutional amendment last November protecting human embryonic stem cell research, it was viewed as a key endorsement of the research even in states with deep religious roots and strong antiabortion forces like this one. But the expected expansion of stem cell research in Missouri has since run into political and financial roadblocks, putting the future of the research in doubt.

State lawmakers who opposed the constitutional amendment continue to fight it, introducing new bills that would bar some types of the research and suggesting that a ballot initiative to that end may lie ahead. Although the legislative efforts have so far failed, the uncertainty has made it difficult for facilities to attract stem cell specialists, some of whom question the state’s commitment to research that supporters say could lead to treatments for diseases like Parkinson’s and cancer.

This is an excerpt from a front-page article in the Friday issue of the New York Times by reporter Monica Davey. Click here to read the entire story.

NPR Reviews "Generic" Biologics Issue

National Public Radio ran a story on Thursday that reviewed the industry, legislative, and patient discussion around the issue of "generic" versions of biologic drugs. It covered different perspectives on the issue, including a look into the manufacture of generic pharmaceuticals.

In the broadcast, Donna Gosbee of Wyoming told her story of living with multiple sclerosis and the expensive biologic MS therapy she relies on. As an MS activist at the Society's MS Public Policy Conference back in March, Donna spoke with her legislators about this issue. She urged them to help create an FDA pathway that would allow for review and approval of comparable, more affordable "generic" versions of biologic drugs.

Click here to read or listen to the complete story.

Correction: The story incorrectly states that the House and Senate have each passed the bill. The House has NOT yet passed this legislation. MS activists will continue to pursue action on this issue when legislators return from the August recess.

Update on Defense Appropriation for Multiple Sclerosis Research

Discussion Scheduled for Later This Fall

Congress is heading home for the August recess, leaving a decision on the Defense appropriation for multiple sclerosis research funding to wait until they return. Before leaving, Congressional leaders reached an agreement to address the issue later this fall. Thanks to the help of your many calls, e-mails, and letters to the editor.

Congressman Russ Carnahan (MO) led the effort to keep this issue alive. When the House and Senate complete the Defense appropriations bill together in a conference meeting later this fall, MS research will be a main topic of discussion.

While not a guarantee that the funding will be granted, this is a major victory for MS activists. For months you have visited and called you legislators, enlisted the help of your friends and family, and invested a great deal of faith in the pursuit of this new hope for MS research. Your work has now put us one big step closer to realizing the goal of increased funding for MS research.

A federal appropriation for MS research through the Office of Congressionally Directed Medical Research Programs (CDMRP) will help move us closer to a world free of MS. It is imperative that the Defense department study the causes and treatments for MS to help the more than 25,000 veterans and the approximately 400,000 other Americans living with this disease.

We will continue to keep you updated. As the Senate debates the appropriations bill next month and the conference between the two chambers follows, this issue will again need your support. Thank you for your dedication and enjoy the short victory before we begin again.

Settlement Makes Subway Sandwich Shops Accessible

The Department of Justice has announced a comprehensive settlement agreement under the Americans with Disabilities Act (ADA) that sets out steps to make more than 20,000 Subway shop franchises physically accessible to people living with disabilities. Click here to read more about this issue.

MS Research Funding Now Could Be Decided Thursday

Ask your Representative to Speak in Favor of the MS Amendment

This is your last chance to help secure a federal appropriation to fund multiple sclerosis research. MS activists have been pushing this for months. You signed the petition, you met with your legislators, and you sent e-mails. Now it's time to make a very important final call.
Call 1-800-828-0498 today and ask for your Representative or the staff person who works on appropriations.

Our request for MS research funding unfortunately was not included in the base bill that will be discussed this week in the House of Representatives. However, Congressman Carnahan (MO) is not taking no for an answer and is offering an MS amendment during debate on Thursday to put MS research funding in the bill. In a final attempt to influence this issue, we are asking all members of Congress to support funding for MS research when Congressman Carnahan offers the MS amendment. View the story of one veteran in St. Louis who is living with MS. (if you have trouble viewing this video, try clicking the "refresh" button)

Some points to consider when you call your Representative today:

• As a constituent and an MS activist, I'd like to ask for your support of MS research funding through the Congressionally Directed Medical Research Programs. This request was not honored in the Defense appropriation bill.
  
• But this week Congressman Carnahan will introduce an MS amendment to provide the MS research funding. We need your help by speaking in favor of the MS amendment from the House floor.
  
• More than 25,000 veterans who are being treated through the VA system have a diagnosis of multiple sclerosis. And a study published in the Annals of Neurology recently identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
  
• More funding is necessary to explore the possibility that something in the environment could trigger this disease among veterans and other Americans. Thank you.

Call your Representative today. There is no time to waste. This new source of funding could help move us closer to a world free of MS. If you receive feedback when you call that might be helpful, e-mail us at msactivist@nmss.org

Write a Letter to the Editor Supporting MS Research

In our recent survey, a significant number of MS activists said they were interested in writing a letter to the editor. Now is your chance.

We are close to securing a $15 million Defense appropriation for multiple sclerosis research funding. To garner final support, we need to build some nationwide public attention for this issue. If we come together with one voice, and share that message across the country, we can make a difference.

Write a letter to the editor today. Click here and enter your ZIP code to use an easy e-mail format.

Tell your story about how MS has impacted you, your family, or a friend. Are you a veteran living with MS, or do you know one? Tell that story.

Write about 200 words (most papers have a word limit). And send it via e-mail to your local newspaper without delay. We expect a final decision on this issue next week.

Today is the Anniversary of the Americans with Disabilities Act

Help Restore Its Original Intent

In recent years, the intent of the ADA has eroded — often not providing enough protection for individuals with disabilities. Help commemorate the anniversary today by helping restore its primary intent.

Ask your Representative to support people who live with disabilities and cosponsor the ADA Restoration Act of 2007. Click here and enter your ZIP code to send a quick e-mail.

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) are expected to introduce the ADA Restoration Act of 2007 today.

Restore Intent of Americans with Disabilities Act

Thursday, July 26 marks the 17th anniversary of the Americans with Disabilities Act (ADA). In recent years however, the intent of this law has eroded — often not providing enough protection for individuals with disabilities.

Help commemorate the anniversary of the ADA by helping restore its primary intent. Ask your Representative to support people who live with disabilities and become an original cosponsor the ADA Restoration Act of 2007. Click here and enter your ZIP code to send a quick e-mail.

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) will introduce the ADA Restoration Act of 2007 on Thursday.

Background
People with multiple sclerosis manage their symptoms with medication to help prevent or ease their disability. But that can sometimes make them appear too functional and preclude them for ADA protection from employment or other discrimination. Because of recent Supreme Court and other court decisions, the ADA no longer creates a level playing field for people with disabilities in the workplace and in our communities, as intended. For example, often employers claim a person is too disabled to do the job, but not disabled enough for protection under the ADA.

The bi-partisan ADA Restoration Act will amend the ADA to focus on whether a person has experienced discrimination "on the basis of disability," rather than requiring individuals with disabilities to first demonstrate that they are substantially limited in some major life activity.

Support the ADA. Act now and urge your Representative to become an original cosponsor of the ADA Restoration Act.

Veterans Speak Out on Funding for MS Research

"We need this funding in the worst kind of way," said Buddy Hayes, the reigning Ms. Wheelchair Virginia. Hayes, a 49-year-old Chesapeake woman who served in the Army in the 1970s, was diagnosed with MS in 2003, after she lost the use of her legs. "If anybody thinks we don't need the funding, I've got two old, clunker wheelchairs in the garage. They can come and take them and see what it's like for one day."


This is an excerpt from an article that ran in the Sunday issue of the Daily Press in Hampton Roads, Va., by reporter Stephanie Heinatz. Click here to read the entire story.

Congress currently is considering a $15 million Defense appropriation that would help fund related research into the potential triggers and treatments of MS. Click here to take action on this issue.

Announcing New Congressional MS Caucus

Ask Your Representative to Join

The National Multiple Sclerosis Society is pleased to announce the formation of a new Congressional Multiple Sclerosis Caucus in the U.S. House of Representatives. Congressman Russ Carnahan (MO) and Congressman Michael Burgess (TX) have stepped forward as leaders and co-chairs of the new MS Caucus. For the Caucus to be effective, we now need additional Representatives to join. Click here and enter your ZIP code to ask your Representative to join the MS Caucus.

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.

The bi-partisan MS Caucus will serve as a forum for Members of Congress, their staff, related organizations, and individuals to discuss critical health care, disability, research, and other issues affecting people living with MS and other conditions. It will raise awareness and seek creative solutions to help us move closer to a world free of MS. Congressional caucuses are common and focus on a variety of issues from specific disease groups to wine making, but the MS Caucus is the first of its kind.

Senator Byrd Advances Funding for New MS Center

The first comprehensive center for multiple sclerosis (MS) research and care in West Virginia could soon be built, thanks to Senator Robert Byrd. But this project still needs to make it through Congress. If you live in West Virginia, click here and enter your ZIP code to send a quick e-mail to Senator Byrd. Thank him and ask for his ongoing attention to this effort.

The Senator has incorporated $4 million in funding to the FY 2008 Labor-Health and Human Services and Education Appropriations bill (S. 1710) for the development of a multiple sclerosis and neurodegenerative disease research center at West Virginia University in Morgantown, W.Va. Now, we're focused on helping pass the bill.

This new MS center at WVU holds great promise for people living with MS not only in West Virginia but nationwide. The debate continues on the funding bill and support is still needed to approve it. We will keep you updated as this moves forward.

Pennsylvanians Urge Rep. Murtha to Support MS Research

Congressman John Murtha of Pennsylvania has the authority to make new funding for MS research a reality, as head of the House Defense Appropriations Subcommittee. The $15 million appropriation for MS research is currently being discussed by his committee. Leaders of the Allegheny District Chapter of the Society in Pennsylvania wrote a letter to the editor encouraging the Congressman's support.


Click here and scroll down to read the complete letter to the editor in the Pittsburgh Post-Gazette today.

New PSA Raises Awareness for Veterans with MS

A new public service announcement (PSA) about veterans living with multiple sclerosis (MS) could be running on radio and television stations in your area. It aims to raise awareness about Paralyzed Veterans of America (PVA) assistance for veterans living with MS as well as available research and educational information about the disease. While the National MS Society was not involved in the development of the PSA, we support the Paralyzed Veterans of America in this outreach. Click here to view the PSA. To learn more about PVA, visit www.pva.org

MS Activist's Letter on Biologic MS Drugs Runs in Ohio Paper

Pam Rice writes:

I live with multiple sclerosis and rely on a drug called Avonex, an injectable drug I give myself once a week. I've been using Avonex for almost 10 years and credit it for preventing further progression of my MS.

Many people in Ohio live with devastating, incurable diseases like MS and cancer. Unfortunately, the cost of biologic treatments can be so staggering that many stop their prescribed therapy because they cannot afford it ...

I support the Access to Life-Saving Medicine Act (S. 623, H.R. 1038) that would provide this statutory pathway and help make critical medicines more available and more affordable to people who need them most.

Click here to read the complete letter to the editor in the Toledo Blade.

Last Opportunity to Influence the Federal Appropriation for MS Research

The federal appropriation to help fund multiple sclerosis (MS) research is in the homestretch. MS activists have been pushing this for months. You signed the petition, you visited your legislators on Capitol Hill and in their district office, and last week you sent e-mails.

An MS Action Alert went out today regarding this issue. In a final attempt to help persuade members to support MS research funding, we asked MS activists whose representatives are on the House Defense Appropriations Subcommittee to call and encourage their support. Those key legislators could help advance the appropriation at the right time. Click here to see if your representative is on the committee.

This could be the last opportunity to influence this issue. This week, the Subcommittee is expected to debate the $15 million federal appropriation for MS research through the Office of Congressionally Directed Medical Research Programs (CDMRP), administered by the Department of Defense. This new source of funding could help move us closer to a world free of MS. We will continue to keep you updated as this issue progresses.

Boston Globe Runs "Middle Road" Editorial on Biologics Issue

The Boston Globe covered the follow-on biologics (also called generic biologics) issue in a "middle road" editorial this week. It appropriately supports a regulatory pathway to safe, effective, comparable versions of costly biologic drugs for people living with MS and other diseases who need them. At the same time, it supports the need for competition in encouraging innovation. Click here to read the full editorial.

MS Issue Updates and Ways to Take Action

Influence MS Research Funding Over Fourth of July
The opportunity to secure a $15 million Defense appropriation for multiple sclerosis (MS) research through the Congressionally Directed Medical Research Programs (CDMRP) is expected to be decided in late July. One of the last and best ways to make an impact on this bill is when Congress is home for the Fourth of July recess.

Here is what you can do to support funding for MS research. Schedule a meeting with your senators or representative in their local office any time during July 1 - 9. Just call and ask for an appointment to talk about funding for MS research. Click here to find your legislators' district office contact information.

• When you meet, share your story about how MS has impacted you.


• If your senator or representative is on the subcommittee deciding this issue, ask them to support the bill as it proceeds. Urge them to support $15 million in funding for MS research under the Defense appropriations bill.
  Click here to see if your senator is on the Defense Appropriations subcommittee.
  Click here to see if your representative is on the Defense Appropriations subcommittee.


• If your senator or representative is not on the subcommittee, simply ask them to bring this issue to the Members of Congress who are on the committee on your behalf.


• We'd love to hear how it goes. After your meeting, sent a note to msactivist@nmss.org and tell us about it.

Legislators are increasingly joining us in support of MS research through this new funding stream. Research into possible environmental triggers of MS could lead to a better understanding of the disease and move us closer to a world free of MS. Click here for more background on this issue.


Senate is Debating Generic Biologics Issue
The issue of generic biologic drugs, also called follow-on biologics, has been gaining national attention recently. The Senate currently is debating legislation that would allow for a regulatory pathway for safe, effective, affordable, and comparable versions of biologic drugs — the Access to Lifesaving Medicine Act of 2007 (S. 623 and H.R. 1038).

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 all 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.

This issue is especially timely. To support a pathway for generic biologic drugs, call your senators today. Call 1-800-828-0498 and ask for your senator. You can use the following bullets to help with your conversation:

• Support a workable pathway for follow-on biologic medicines like the one that is outlined in the Access to Lifesaving Medicine Act.


• A drug is not effective if it is not affordable.


• Provide a clear framework for FDA to use its scientific expertise to approve safe and comparable products — a framework free of the need for additional congressional action or unnecessary potholes.


• Do not delay patient access to lower-cost treatments that are safe and effective. At the same time, provide fair exclusivity to innovator brand companies.

Read the news article about of one Washington state man who shares his family's story of multiple sclerosis, the cost of fighting it, and the need for more affordable versions of biologic drugs for MS and other diseases.


Small Increases to NIH Funding, but Respite Care Left Out
Both the House and Senate Appropriations committees have indicated a slight funding increase for NIH, based on their recently reported Labor-HHS funding bills. The House’s Labor-HHS bill allocated a 1.9% increase to NIH, while the Senate version gave a 2.8% increase. Even though the Senate bill is a greater percent increase, the overall funding allocated is actually $1.9 billion less than the House version. No increase is guaranteed given the current fiscal climate, so support for NIH funding is still needed. Click here and scroll down to send a quick e-mail to your representative on this issue.

Unfortunately, neither of those proposed increases includes funding for the state grants promised through the Lifespan Respite Care Act that passed Congress last year. However, the House is expected to propose an amendment with a funding request of $40 million for this purpose in the next few weeks. We will continue to keep you updated.


President Vetoes Stem Cell Bill … Again
On June 20, President Bush vetoed the Stem Cell Research Enhancement Act (S. 5). In addition to the veto, Bush issued an executive order directing the NIH to continue pursuing alternate forms of stem cell research. This order is not useful however as NIH already has been conducting this type of research for more than 20 years.

The stem cell bill now will head back to the Senate for an override attempt. The Senate is expected to have at least 66 of the 67 votes required to override the veto; while the House will be many votes short. In an alternate attempt to successfully enact embryonic stem cell research legislation, the Senate Appropriations Committee has attached a similar version of S. 5 to the Labor-HHS funding bill. This will now head to the Senate floor for a vote. As it progresses, we will notify you of any MS activism that could help this cause.

Family Endures MS and Expense of Fighting It

The U.S. Senate currently is debating legislation that would allow for a regulatory pathway for safe, effective, affordable, and comparable alternatives to biologic drugs. This issue is gaining attention nationwide. A Washington state man tells his family's story of multiple sclerosis, the expense of fighting it, and the need for more affordable versions of biologic drugs for MS and other diseases. Read the complete story here.

MS Activists Participate in Stem Cell Event

MS activists nationwide have been leaders in speaking out in support of expanded stem cell research. MS activists who joined in the stem cell event yesterday in the U.S. Capitol included (in back from left to right) Sharon Dodge, Rob Engel, Bev Thomas, Yvonne Brown, Janet Abrams, Philip Fryer, Karen Jackson, and David Powell. These MS activists represented the Maryland and National Capital chapters.

Stem Cell Bill Passes, Moves to President's Desk

The House of Representatives passed the Stem Cell Research Enhancement Act (S. 5) yesterday with a bipartisan vote of 247 to 176. Thanks to the thousands of MS activists who contacted your representatives in Congress recently in support of this issue. Several MS activists participated in an event lauding the passage of the bill in the U.S. Capitol Building following the vote. They joined Speaker of the House Nancy Pelosi (CA) and Senate Majority Leader Harry Reid (NV), along with House champions Mike Castle (DE), Dianne DeGette (CO), and Jim Langevin (RI).


Photo right: Senator Tom Harkin (IA), Senate sponsor of the stem cell bill, speaks with MS activists before the event, including Rob Engel upper left and Janet Abrams seated.

The bill is now on its way to the president’s desk, but he has vowed to veto any legislation lifting his ban on federal funding for additional embryonic stem cell lines. If a veto occurs, the bill will return to the Congressional chamber of origin — in this case the Senate — for an override attempt. A two-thirds majority is necessary to override a presidential veto. While the votes are close, it is possible that the Senate will have the 67 votes necessary. We will keep all MS activists up to date as this progresses in the coming week.


Photo left: Senator Harry Reid (NV) comments on the bill alongside MS activists and representatives from other patient groups.