Help Urgently Needed to Maintain MS Research Funding

Because of the hard work of MS activists across the country, approximately $17 million has been allocated to MS research under the Congressionally Directed Medical Research Programs over the past four years. 

Emerging evidence indicates a potential link between combat services and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." Currently, more than 23,000 veterans with MS receive care through the Veterans Health Administration. 

Over the past four years, approximately $17 million has been allocated for MS research under the CDMRP. The large number of grant proposals received each year for MS projects and the need to better understand MS and help locate a cure indicate a clear need to continue this vital stream of research funding.

Congressmen Michael Burgess, M.D. (TX-26) and Russ Carnahan (MO-3) have circulated a bipartisan Dear Colleague letter supporting $15 million for MS research in the CDMRP in Fiscal Year 2012. Click here to take action and urge your U.S. Representative to support $15 million for MS research!

Society Volunteers Testify at Social Security Administration Hearing

On March 16, 2011 two volunteers from the National MS Society testified in front of senior government officials at the Social Security Administration’s Compassionate Allowances Hearing. The Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under for disability benefits based on minimal objective medical information. To see the current conditions listed on the Compassionate Allowances program, click here.

Over the past few years, the Society has been working with the Social Security Administration to discuss the possibility of adding severe forms of multiple sclerosis to this list. Because of the varying symptoms and progression of the disease, the Social Security Administration was particularly interested in finding a quantitative way to characterize how a person with MS could qualify for this expedited approval process. As part of this process, the Society suggested a medical expert and a person living with MS to testify at the Compassionate Allowance Autoimmune Disease Hearing.

Dr. John Booss, a retired neurologist and long-time activist, spoke to the panel about the scientific and clinical background of MS. Additionally, Dr. Booss offered a potential model to determine whether a person with MS should qualify for a compassionate allowance determination. Yvonne Brown, an activist from Maryland, spoke about her personal struggle applying for Social Security Disability Insurance, notably the years she waited to be approved. She pointed out that if the Compassionate Allowances program was expanded, less people would have to endure the extremely long wait-period to receive benefits. To see video of the testimony or download the presentations, click here.

The Social Security Administration is now in the process of consulting with other internal experts about the appropriate diseases to add to the Compassionate Allowances List. When a new version is released, the National MS Society will communicate the information to our activists.

Dr. John Booss testifies at a Social Security Administration hearing

Yvonne Brown, MS activist, testifies at a Social Security Administration hearing

Society Awards 2010 Representatives and Senator of the Year and Congressional Staffer of the Year

During the 2011 Public Policy Conference, the National MS Society awarded its 2010 Representative of the Year awards to Representative William “Mac” Thornberry (TX-13) and James R. Langevin (RI-2), its 2010 Senator of the Year award to Senator Robert P. Casey, Jr. (PA), and its Congressional Staffer of the Year award to James “J.P.” Paluskiewicz, Legislative Director for Representative Michael C. Burgess, M.D. (TX-26). The Society thanks these federal legislators for their commitment to improving the lives of people affected by MS and looks forward to continuing to work with them during the 112th Congress.

Rep. Thornberry (TX-13) Receives the 2010 Representative of the Year award
at the PPC. Rep. Thornberry is joined by MS activists from Texas.

Representative William “Mac” Thornberry (TX-13) is an instrumental member of the House Multiple Sclerosis Caucus and has been a strong supporter of the Society’s mission since being elected to office. In 2010, he introduced the Part D Off-Label Prescription Parity Act (H.R. 5732), which would allow Medicare coverage of medication prescribed for an off-label use when such use is supported by peer-reviewed medical literature.

Rep. Langevin (RI-2) Receives the 2010 Representative of the Year award at the PPC.
Rep. Langevin is joined by MS activists from Rhode Island.

Congressman James R. Langevin (RI-2) has an incredibly strong track record of advocating and supporting benefits, programs, and services that help people with MS and other disabilities including: robust funding for and speedy reauthorization of the Lifespan Respite Care Program; advocating for provisions in health care reform legislation that would improve the lives of persons living with disabilities; and support of $15 million for multiple sclerosis research in the Congressionally Directed Medical Research Programs (CDMRP) in Fiscal Year 2011.

MS activists from Pennsylvania on Capitol Hill.

Senator Robert P. Casey, Jr. (PA) has been a long-standing supporter of the Society’s policy agenda and in the 112^th Congress, assumed Co-Chairmanship of the Senate’s Multiple Sclerosis Caucus. In 2010, Senator Casey supported increased funding for MS research in the CDMRP, increased funding for the Lifespan Respite Care Program and advancement of the National MS and Parkinson’s Disease Registry Act, now titled the National Neurological Disease Surveillance System. Senator Casey has also been the primary sponsor of the MS Awareness Week Resolution in the Senate.

Support MS Activists on Capitol Hill

Click here to support important advocacy of fellow MS activists! Last Wednesday, March 9, 350 MS activists representing every state in the country met with their federal legislators on Capitol Hill as part of the National MS Society's 20th annual Public Policy Conference. MS activists discussed three priority issues:

• Improved Access to Neurological Care (S. 597): Neurology is the only group of physicians who are responsible for coordinating overall patient care that are left out of the incentive in the Affordable Care Act and MS activists are seeking to correct that inequity. With nearly 75% of people living with MS depending on a neurologist for regular care of their condition, inclusion of neurologists is vital.

• Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495): MS activists urge support of this legislation that would sustain and grow Adult Day programs by establishing a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis (MS) and similar diseases.

• MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS activists have successfully advocated for a new federal funding avenue that thus far, has yielded approximately $13 million for MS research. MS activists are requesting $15 million in appropriations for MS research in the CDMRP in Fiscal Year 2012.

Support the work of fellow MS activists and urge your federal legislators to support these important policies that will improve the lives of people living with MS! Click here to take action today!

MS Activists on Capitol Hill - 20th Annual Public Policy Conference

The Minnesota Chapter Visiting a Senate Office

The Alabama - Mississippi Chapter in Front of the U.S. Capitol

MS Activists from California Meeting with Congresswoman Barbara Lee (CA-9),
Sponsor of the Adult Day Achievement Center Enhancement Act (H.R. 883)

National Caregiver Support Line for Veterans and Their Caregivers

The Department of Veteran’s Affairs (VA) has opened a toll-free National Caregiver Support Line for caregivers of veterans living with the effects of war, disability, chronic illness, or aging. The Support Line will be housed at the Canandaigua VA Medical Center in New York and will serve as a primary resource and referral center for the caregivers of our nation’s veterans. The Support Line will be answered by VA staff members who are licensed clinical social workers. The staff at the Support Line will be able to provide callers with information about the VA and community caregiver support resources and “warm” referrals to Caregiver Support Coordinators located in every VA Medical Center, with emotional support being stressed as an integral part of the Support Line service. Staff at the Support Line will also be able to help caregivers with inquiries about veteran’s benefits.

The National Caregiver Support Line was launched February 1, 2011 and will be open Monday through Friday from 8:00 am until 11:00 pm (EST) and from10:30 am through 6:00 pm (EST) on Saturdays. The toll-free number is 1-800-260-3274. For more information about the VA’s National Caregiver Support Line, click here.