Ask Your U.S. Representative to Support $15 Million for MS Research

New federal money is now available to multiple sclerosis researchers, thanks to your MS activism. We can build on that momentum in Congress and secure new avenues for more MS research funding. Ask your U.S. Representative (click here) to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research.

Take action before today:

• Send a quick email to your Representative.
• Call your Representative's Washington, DC, or district office to talk about this issue. Call 1-800-828-0498.
• Make an appointment to visit with your Representative or their staff in the district.
• Attend a community or town hall meeting. Call the district office for a schedule.

For your Representative's contact information, visit www.house.gov.

You can use these talking points and background when you speak with your Representative:

• A Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan and Michael Burgess. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs.
  
• Please have Representative ____ sign on the letter by contacting Congressmen Carnahan or Burgess. As a constituent and an MS activist, I encourage your support of this investment in MS research.
  
• [Share how MS has impacted you personally]
  
• Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk.
  
• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
  
• More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
  
• MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.

Now is the time to pursue a specific appropriation for MS research in the CDMRP for fiscal year 2009. The deadline to sign on to the Dear Colleage letter is March 14. This program is funded annually through Department of Defense (DoD) appropriations bill. Last year your efforts influenced Congress to include MS as one of the areas eligible to compete for research funds through the DoD research programs in the FY 08. This is the first time that MS has ever been listed.

The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants.

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

Department of Defense Research Funds Now Available

As a result of the help of many grassroots activists and partner organizations, the National Multiple Sclerosis Society is proud to announce that the Department of Defense included multiple sclerosis as one of the areas eligible to compete for research funds in the FY 08 for the first time.

The funding is provided in the Peer Reviewed Medical Research Program as part of the Congressionally Directed Medical Research Program. The total pot is $50 million. There are four award mechanisms funding grants from $900,000 to $2.5 million plus indirect costs. The grants are from three to four years.

To apply for the grants or to see the full details, visit:

http://cdmrp.army.mil/pubs/press/2008/08prmrppreann.htm

The Society is pleased that this effort was so successful and will work again this year to not only keep this allocation but to increase it.

Please get this word out to any researcher/institution you know who might be interested in applying for these funds.

Congressional Briefing Examines Multiple Sclerosis Among Veterans

Veterans Affairs Neurologist Presents Findings on Increased Risk

Two U.S. veterans living with multiple sclerosis and a neurologist with the Veterans Affairs MS Center of Excellence testified at a briefing on Thursday, February 21, on Capitol Hill. Legislators and staff gathered to examine the increased prevalence of the disease among U.S. veterans and explore the need for increased federal investment in MS research.

New evidence shows a potential link between the incidence of multiple sclerosis and combat service. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The National Multiple Sclerosis Society, in cooperation with Congressmen Russ Carnahan (MO) and Michael Burgess, M.D. (TX), co-chairs of the Congressional Multiple Sclerosis Caucus, hosted the briefing.

Dr. Mitch Wallin, an Associate Professor of Neurology at Georgetown University School of Medicine and Associate Director of Clinical Care at the Department of Veterans Affairs MS Center of Excellence-East in Baltimore, shared his experience treating members of the U.S. military living the disease and his findings on the increased risk of MS among veterans.

Dr. David Gustavison is a U.S Army Medical Corps veteran who served in the Gulf War and lives with MS. Dr. Gustavison shared his perspective as a medical doctor with a clear understanding of the disease. (In the photo below, Dr. Gustavison speaks during the briefing.)


“I believe there is a relationship between military service and MS,” Dr. Gustavison said. “Myself and three other physicians in the same command were diagnosed with MS in approximately a two-year time period. Two of us were deployed to the Gulf. All three had the same pre-deployment vaccinations. And all three worked with the same command and visited the same installations. I have had symptoms of MS since 1994.”

Bob Wolz also shared his story of life with multiple sclerosis. He is a U.S. Army veteran who served in the Gulf War and considers MS a lingering wound from his first tour of duty. “I was exposed to something,” Bob said. (In photo above right, Bob meets with a staffer in the office of Senator Patty Murray.)

The National Multiple Sclerosis Society is pursuing a noncompetitive $15 million appropriation specifically for MS research in the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense. That funding is allocated under the annual Defense appropriations bill.

In the News: Biotech Industry Pushes for Generics Deal

After nearly a decade of resisting, biotech companies want a law passed this year that lets generic drug companies sell cheaper copies of their medicines.

Biotechs have never had the competition from generics that makers of chemical-based drugs, like Pfizer and GlaxoSmithKline, face when their patents expire. The Food and Drug Administration lacks authority to approve generic biotech drugs, but several bills introduced in Congress during the past year would change that.

Biotech companies say they are ready for that change -- so much so that their main trade group is making the legislation a priority in 2008. And the Bush administration recently said it supports that aim.

The industry's shift comes as election-year politics are expected to shift Washington away from biotech's interests. Many political observers expect Democrats to gain more power in Congress this November, which could tilt favor to the generic drug industry. Faced with that possibility, the biotech industry wants an agreement as soon as possible.

This is an excerpt from an Associated Press / News & Observer (Raleigh, NC) article from February 15, 2008. Read the complete article.

Rallys for Healthcare Coverage in Columbus and Cleveland

The National Health Council will sponsor town hall meeting and news conferences on Wednesday, February 27 in Cleveland and Thursday, February 28, 2008 in Columbus, OH. The events start at 10:00am and end at 11:30am. There is no admission cost and no tickets are required.

People and families affected by disease and/or disability are strongly encouraged to attend.

The event will highlight the lack of effective coverage for millions of Americans and seeks to educate political candidates about the need for solutions. It also will feature patients' personal stories on this topic.

A "town hall" meeting will follow the news conference and highlight how people and families can become more involved in this effort. Presidential candidates and their staff will be invited to participate in the event.


More Information on the Events
The event in Columbus will take place in the Clinton Room of the Fawcett Center at The Ohio State University (2400 Olentangy River Rd.). For directions, please visit the Fawcett Center website at www.fawcettcenter.com or call them at 614-292-1342. Click here for a flyer with more details.

The event in Cleveland will take place in Salon F of the Cleveland Marriott Downtown at Key Center (127 Public Sq.). Parking is free (mention “National Health Council” to attendant). For directions, call 216.696.9200 or visit the hotel's website. Click here for a flyer with more details.

The general public is also encouraged to attend.For more information, please contact Joseph LaMountain at joseph.lamountain@gmail.com or 202.288.5124. We look forward to seeing you on February 28th!

Invite Your Legislator to a Capitol Hill Briefing on Multiple Sclerosis

Two U.S. veterans living with multiple sclerosis and a neurologist with the Veterans Affairs MS Center of Excellence will speak at a briefing on Capitol Hill on Thursday, February 21. Encourage your legislator and their staff to attend. Click here and enter your ZIP code to send a quick note.

This important briefing will examine the need for increased federal investment in MS research and the increased prevalence of the disease among U.S. veterans. The National Multiple Sclerosis Society, in cooperation with Congressmen Russ Carnahan (MO) and Michael Burgess, M.D. (TX), co-chairs of the Congressional Multiple Sclerosis Caucus, is hosting the briefing. Dr. Mitch Wallin from the Department of Veterans Affairs MS Center of Excellence and U.S. veterans Bob Wolz and Dr. David Gustavison who live with MS will share their stories.

In 2007, your activism paid off when MS was listed as a research area eligible to compete for funding from the Department of Defense medical programs for the first time. This year we are pursuing a noncompetitive $15 million appropriation specifically for MS research in the Congressionally Directed Medical Research Programs (CDMRP) at the DoD. That funding is allocated under the Defense appropriations bill, which is negotiated every year. Find out more.

We need your help to encourage congressional staff to attend. The briefing will be the first big push toward securing MS research funding in the CDMRP this year. Please take a moment to send an e-mail to your legislator's office and encourage their staff to attend this important and educational briefing.

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

Mark your calendars!

MS Awareness Week 2008
March 10-17

Get your friends to join the movement. Host a fundraising party during MS Awareness Week. Email msactivist@nmss.org to be part of the global community of events.

This MS Global Dinner Party is similar to a political fundraising event. But it's being held worldwide. Gather other MS activists in your community together for an MS Awareness Week party. Contact us at msactivist@nmss.org for more information.

Integrated Approach to Managing MS Could Improve Quality of Care, Survey Finds

Individuals living with multiple sclerosis could more effectively manage their disease through greater collaboration and more efficient disease management involving managed care organizations, neurologists, and specialty pharmacies, a landmark study has found.

The National MS Society and Teva Neuroscience partnered on the new The Multiple Sclerosis Trend Report: Perspectives from Managed Care, Providers, and Patients involving healthcare professionals, MS patients, and managed care professionals. Find out more.

New MS Activism Group Discusses 2008 Policy Priorities

A group of individuals living with MS, caregivers, healthcare professionals, and National MS Society staff gathered recently in Washington, DC, to share ideas and help shape our federal policy priorities for the year. It was the first meeting of the newly established Federal Activism Council. This body will help focus our activism on the unmet needs of the MS community and ensure federal policy and advocacy are discussed and analyzed in a broad, 360-degree manner.

Potential policy priorities for 2008 include:

• Increase federal funding for multiple sclerosis research.
• Work with federal agencies on the incidence and prevalence rates of MS nationwide.
• Eliminate the 24-month waiting period that Social Security Disability Insurance (SSDI) beneficiaries must endure prior to enrolling in Medicare.
• Improve the Family Medical Leave Act (FMLA) and prevent any attempts to roll back current FMLA policy.
• Develop appropriate federal legislation that would require insurers (including self-insured) to provide maintenance physical therapy for people living with MS.
• Support the Promoting Wellness for Individuals with Disabilities Act (S. 1050/H.R. 3294) that would allow for the development and setting of standards for accessible medical equipment.
• Promote adequate funding for the Social Security Administration (SSA) to reduce the backlog of disability appeals cases.
• Create guiding principles for the Society to enter into the broader debate on healthcare reform as it relates to people with chronic diseases and disabilities.
• Support and pass legislation to give the Food and Drug Administration (FDA) a pathway for approving follow-on biologics.

These issues were evaluated based on their impact on people living with MS, political viability, potential for collaboration, adequacy of information, degree to which the MS community will be energized, and fiscal feasibility. The Federal Activism Council will continue to identify MS issues and guide the direction of our activism. Similar advocacy and government relations groups exist in many states. Contact your chapter to discuss a potential MS issue or to get involved.

SSA Suspends Potentially Harmful Rule Change

Comments submitted by the MS community were successful in preventing a potentially harmful new Social Security policy. The Social Security Administration (SSA) suspended a proposed rule change that would have made the disability determination appeals process more difficult for people living with MS to win a disability appeal.

Of most concern was the change that closed the record for submitting evidence five days prior to a claimant's hearing with a judge during the disability appeals process. That rule would have put an undue burden on people filing for disability who have no control over the promptness of their healthcare providers' records and cooperation with SSA.

Yielding to pressure from advocacy organizations, including the Society, and from members of Congress, SSA Commissioner Michael Astrue notified Congress on January 29 that SSA is suspending the proposed rule change. SSA reported that more than 500 comments were submitted, with close to unanimous criticism of the proposed rule, in particular, the restrictions on submission of evidence. The Society also participated in a meeting in early January with the Commissioner stating our concerns and opposition to the plan.

Today is Super Tuesday — Find the Healthcare Positions of the Presidential Candidates

A record 24 states will hold their primary today. If yours is one of them, remember to vote. Find the date of your state primary or your polling place here: www.vote411.org

The presidential primary season is underway, and this already is an exciting year for addressing healthcare issues. Health policies and concerns are taking center stage in many debates and candidates' speeches.

Be an educated voter. To find the candidates' positions, visit www.health08.org

The Kaiser Family Foundation, a non-profit, non-partisan foundation focusing on major U.S. healthcare issues, recently developed this new resource. Find out how each of the major presidential candidates stand on issues that impact people living with MS and all Americans.