I'm an MS Activist

State Success: New Jersey Governor Signs MS Task Force Bill

2012-01-30T10:10:00.002-05:00

A bill sponsored by Senator Fred Madden (D-Washington Township) that would establish the New Jersey Multiple Sclerosis Task Force within the Department of Health and Senior Services (DHSS) was signed into law earlier this month. This legislation will establish a 14-member committee, made up health officials, representatives of the Society, and people living with MS, to develop strategies and provide recommendations that will improve the lives of people living with MS in New Jersey.

This is a great victory for the New Jersey Metro and the Greater Delaware Valley chapters of the National Multiple Sclerosis Society. These chapters have worked diligently with MS activists to push forward this legislation to address the unmet needs of people with MS in New Jersey. Click here to read the full story.

Neurologists in Short Supply for MS community

2012-01-19T10:46:00.000-05:00

This month, the President of the Upper Midwest Chapter of the National MS Society and the CEO of the American Academy of Neurology co-authored a letter to the editor to bring attention to the neurologist shortage we have in this country. This is a significant issue that needs to be addressed given that that one out of six people in the United States — nearly 52 million— has a neurological disorder. In addition, a study done by ABT Associates found that 72.2% of patients saw a neurologist for usual care of MS. There is also cause for alarm in the military – last March the United States Army issued a memorandum highlighting the shortage and its impact on our troops. Click here to read the memorandum for the United States Army.

Among other efforts, the National MS Society is supporting legislation that creates 1000 new residencies and a proposal to include neurologists in the Medicare payment incentive program. The current Medicare payment system creates a disincentive to enter neurology and that needs to be fixed as one part of a broader solution to the shortage issue.

New York Times Highlights Progress in MS Therapies

2012-01-10T17:56:00.001-05:00

Last week, The New York Times ran a story in its Science section on the impressive development of new therapies that have given those living with MS hope and a better quality of life. Today, thanks to research, there are eight FDA-approved disease-modifying drugs that reduce relapses and slow the progression of MS, as well as treatments approved to manage symptoms related to MS. The Society’s Chief Research Officer Dr. Timothy Coetzee is quoted in the article stating that “We have a disease that’s gone from having no treatments 20 years ago to having multiple treatment options. There is a growing recognition that M.S. is becoming a manageable disease.” This article is a testament to the progress that has been made, as well as a reminder of work remaining that will move us closer to a world free of MS. Click here to read the full story and hear from people with MS who have benefitted from MS therapies, as well as other MS experts, most of whom are affiliated with the Society.

Additionally, ABC News highlights treatment advances for MS. Click here to check it out.

Funding Victories and Two-Month Extension of Important Medicare Policies

2011-12-28T11:17:00.000-05:00

As the calendar year draws to a close, the Society is pleased that Congress was able to pass a short-term package that ensures that physicians treating Medicare patients will not face a steep cut in reimbursement rates, as well as extends an exceptions process for Medicare beneficiaries to ensure that they can continue receiving

outpatient physical, speech and occupational therapy services. A longer term solution is needed though--past this package's February 29, 2012 deadline--to ensure that Medicare beneficiaries continue to have access to health and therapy services well into the year. Congressional leadership has already appointed some conferees who are charged with developing this longer-term solution. Stay tuned for updates and opportunities to weigh in about these important Medicare policies!

Shortly before Congress addressed Medicare reimbursement and therapy caps, it also completed work on Fiscal Year 2012 appropriations. Each year, MS activists participate in the federal appropriations process—visiting and contacting their members of Congress repeatedly throughout the year to help ensure that MS research and programs important to people affected by MS continue to be funded at robust levels. Congress and the President are under tremendous pressure to cut spending in the face of historic budget deficits and while programs are being trimmed, the Society is pleased to report that the ardent work of MS activists has paid off and MS research and programs will be funded at the following levels in FY 2012:

MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS research in the CDMRP will receive $3.8 million. This is a funding stream that exists solely because MS activists urged Congress to create it and with the FY 2012 funding, MS research has received a total of over $20 million through the CDMRP over five years.

Lifespan Respite: Lifespan Respite Care programs help support, expand and streamline the delivery of planned and emergency respite services supporting our nation’s 65 million family caregivers—including those who care for people living with MS. Lifespan Respite will receive $2.495 million in FY 2012, offering states more funding to sustain or enhance their statewide respite systems.

National Institutes of Health (NIH): The NIH is the single largest source of biomedical research funding in the world and sponsors a majority of the MS-related research carried out in the United States. In FY 2012, NIH funding is increased by $300 million over FY 2011 levels—with total funding of $30.7 billion. The Society is pleased that as part of NIH funding, $10 million is provided to implement the Cures Acceleration Network (CAN) that will help speed the translation and application of discoveries and get effective therapies to the people that need them quicker.

Food and Drug Administration (FDA): FY 2012 funding for the FDA was finalized in mid-November as part of a separate package and the FDA will fortunately receive a $50 million increase over last year’s level—for a total of $2.5 billion. Funding for the FDA will help ensure that drugs and medical devices are safe and effective.

Social Security Administration (SSA): While the Society worked with many other advocates to increase funding for the SSA in FY 2012, the SSA will receive a $400 million cut in FY 2012--being funded at $10.984 billion. Significant cuts the SSA’s administrative budget can result in longer turnaround times for approval of disability benefits so the Society will monitor this potential impact.

Happy Holidays and Safe Travels

2011-12-23T11:28:00.000-05:00

As the holidays approach, the National MS Society’s Public Policy Office wishes to thank our more than 64,000 network of MS activists around the country who made phone calls, sent emails, attended town meetings, joined our MS Activist blog and followed us on our @MSActivist twitter account. It’s through our collective, multi-faceted effort that we have been able to continue making progress and while we know new battles lie ahead, the Public Policy Office wants to share its appreciation for the terrific efforts of 2011. We look forward to engaging together again in 2012!

For anyone traveling during the holiday season, we urge you to check out the Transportation Security Administration's(TSA) toll-free helpline number at 1-855-787-2227, prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. Click here for more information.

Thank you for your continued participation and support.

Another Step Forward for the MS Community – Addition of Advanced MS to Compassionate Allowances Listing Will Help Speed Disability Applications

2011-12-19T17:08:00.000-05:00

Good News! Due to the hard work of MS Activists over a series of months, the Society recently learned that it has been successful in working alongside the Social Security Administration (SSA) to add aggressive and advanced forms of MS to the “Compassionate Allowance” listing. Society staff and volunteers have been in conversations with SSA to better understand the Compassionate Allowance process and blog readers may remember that two MS activists—Dr. John Booss and Yvonne Brown--testified at a March 2011 Social Security hearing requesting that MS be added.

So what does this victory mean for people living with MS? The Compassionate Allowances Program expedites the review of Social Security Disability Insurance (SSDI) applications for diseases and other medical conditions that invariably qualifyfor disability insurance based on minimal objective medical information. The benefit of this is two-fold: it gets the sickest and most severely impacted applicants approved for Social Security Disability more quickly and it alleviates the backlog of applications for others in line.

This is a real victory for the MS community!!! This victory is a great example of non-legislative advocacy and, how using our collective voices can lead to real change. We just want to say THANK YOU again for your dedication and commitment to a world free of MS.

Stay tuned for more to come.

Wondering How the New Health Care Law Is Going to Impact You and Your Family?

2011-12-15T14:27:00.000-05:00

The National MS Society believes that all individuals regardless of health or disability, employment status, age, claims history or risk should have access to affordable, quality health care. Thanks to the Affordable Care Act (ACA), signed into law by President Barack Obama on March 23, 2010, our current health care system will improve by increasing access to health care coverage, helping keep costs down, and offering new protections for people who have health insurance.

Understanding the new health care law can be tricky because of the intricate and multi-faceted provisions in the law. We want to help you understand what it means for you and your family so that you can be an informed consumer. A poll conducted by the Henry J. Kaiser Family Foundation found that many Americans are unaware of or confused by major provisions in the law. The Kaiser Family Foundation has created a new interactive feature in order to help people understand the impact of the Affordable Care Act will have on their lives. We urge to click here to check it out.

Additionally, the Kaiser Family Foundation has created an animated video to show people how their health insurance coverage could change as the new health care reform law continues to be implemented. Click here to watch the video and better understand the reform from real life situations.

Creating a Path to Employment for People with Disabilities

2011-12-14T16:35:00.000-05:00

Finding employment in this economy is challenging for everyone but specifically, can be for people with disabilities. People with disabilities generally have a 13 percent unemployment rate, which is about one and a half times the rate of those without disabilities.

Last week, the Obama Administration proposed a rule that would require federal contractors and subcontractors to set a goal of having 7% of its workforce be comprised of people with disabilities. The rule would provide new opportunities for employment for people with disabilities by requiring federal contractors to devote more resources to recruiting efforts to hire more disabled workers, improve training programs and update data collection.

Currently, there are about 200,000 total federal contractors taking in approximately $700 billion in annual contracts. Approximately 170,000 of those contractors would be impacted by the rule--those that have at least 50 employees and have a minimum of $50,000 in government contracts. The Department of Labor will be taking comments on the rule for 60 days before proceeding with final approval next year. The Secretary of Labor Hilda Solis says that "this proposed rule represents one of the most significant advances in protecting the civil rights of workers with disabilities since the passage of the Americans with Disabilities Act." Click here to read the press release from the Department of Labor.

Bill Introduced to Help With High Costs of Prescription Drugs

2011-12-13T09:37:00.001-05:00

The National MS Society sends a special thank you to Reps. Hank Johnson (GA-04) and Walter Jones (NC-3) for introducing the “Part D Beneficiary Appeals Fairness Act” (H.R.3613) last week. This bipartisan effort, which introduced with 33 original cosponsors, would grant people with disabilities and seniors on Medicare Part D facing the high cost of drugs placed on the “specialty tier” an appeals process to help combat high cost.

Approximately 25 – 30% of people with MS rely on Medicare for health coverage. Private and employer health insurance plans classify prescriptions using tiers to differentiate among generic, brand name and “non-preferred” brand name drugs. In Medicare Part D, plans are allowed to place any medication costing more than $600 is automatically placed on a specialty tier that requires patients to pay a co-insurance or percentage of the drug cost. Drugs to help manage MS can exceed $30,000 per year or more than $800 per month out of pocket. MS therapies are routinely positioned among the top 12 drugs most often found on a specialty tier—making people living with MS who need the drugs to stay healthy pay a 25 to 33% co-insurance. This places a substantial financial burden on people living with MS—with some choosing to forego treatment simply because they cannot afford their prescriptions.

Rep. Johnson’s bill would offer patients unable to shoulder the high cost of specialty tier drugs an appeals process or “tiering exception”—specifically, they would be appealing to pay a lower cost-sharing amount. The appeals process is available on every other drug tier in Medicare and this bill would simply ensure this consumer protection was applied to every tier, even the most expensive drugs that are especially hard to afford. As a result of this bill, people living with MS would be assured to have a means to appeal to have better access to critically important prescription drugs that slow the progression of this incurable disease and help reduce the frequency and intensity of flare-ups. Click here to read the press release from Rep. Johnson.

Society Submits Recommendations as Funding Levels are Finalized

2011-12-08T15:07:00.000-05:00

Each year, Congress is tasked with passing the federal budget that funds federal departments, agencies, and programs. Through the federal budget cycle, funding levels for agencies and programs important to people living with MS like Medicare, Medicaid, Social Security, and the National Institutes of Health are decided—which in turn, impact access to health and other services like respite care and the amount of funding available for MS research. This complex process is supposed to be completed each year by the start of the fiscal year—October 1—but in the recent past, has not been. Congress has instead passed what is known as a “Continuing Resolution” (CR) that maintains or "flat funds" programs to give Congress more time to complete appropriations.

The federal government is currently operating under one of these CRs that is in place through December 16. Over the next few weeks, Congress will be deciding whether to wrap remaining appropriations bills into a large package called an “omnibus” or pass another CR. Whichever path is selected, to help ensure that programs and services for people with MS receive adequate funding, the Society is sending a letter to Congressional leadership and appropriators to recommend robust levels for the following: MS research in the Congressionally Directed Medical Research Programs (CDMRP), the National Institutes of Health (NIH), a new program aimed at expediting development of effective drugs called the Cures Acceleration Network (CAN), the Lifespan Respite Care Program that supports family caregivers, and the Social Security Administration. Click here to read the Society’s letter. Funding for another Society priority—the Food and Drug Administration—has already been finalized and fortunately received a $50 million increase over last year’s level.

MS Activists Taking Action and Making a Difference

2011-12-07T16:34:00.000-05:00

Great job MS activists!—we had over 2,500 MS activists take action last week which directly helped the Multiple Sclerosis International Federation get to their goal of over 20,000 signatures on a petition asking employers and decision makers to remove the barriers that prevent people with MS from finding and staying in work. This petition—which was ultimately signed by 23,987 people from 143 countries was delivered to the UN High Commissioner for Human Rights on the eve of the International Day for Persons with Disabilities. To read more about the petition and its delivery, click here.

Lifespan Respite Program Reauthorization Update

2011-12-07T09:42:00.006-05:00

Thanks to Rep. Langevin(RI-2) and McMorris Rodgers(WA-5), the Lifespan Respite Care Reauthorization Act of 2011(HR 3266) was introduced in late October. Since then, the bill has been referred to the House Energy and Commerce Committee and picked up seven additional bipartisan cosponsors.

This bill is a bipartisan effort to reauthorize the Lifespan Respite Care Act of 2006, which provides funding to states to establish coordinated systems to improve delivery and quality of respite services for caregivers. Sixty five million family caregivers provide 80% of our nation’s long-term care, permitting loved ones to remain in their communities and avoid or delay premature admission to costlier institutional facilities. However, caregiving can be a stressful job and respite offers a short-term break to caregivers so that families remain healthy. The particularly important thing to note about Lifespan Respite is that it supports caregivers “across the lifespan”--from disabled children to adults—so that families affected by MS regardless of their age would be eligible.

To hear a real world story of the toll that can be placed on families and the importance of respite care, watch this YouTube video of Kim who has lived with MS for over 30 years. She is testifying before the Texas legislature, asking them to protect and preserve funding for respite services for Texans. The Texas Legislature faced a $27 BILLION shortfall this spring, but partly due to Kim’s engagement in MS Activism and compelling testimony, the respite care program was one of the few human services programs that was not cut.

So far, thirty states and the District of Columbia have been able to start better coordinating respite services because of the Lifespan Respite Act of 2006. This is a great foundation but reauthorizing the program would help ensure that family caregivers get the support they need. Click here to take action today and ask your U.S. Representative to support reauthorizing the Lifespan Respite program.

Deadline for Medicare Open Enrollment Nearing

2011-11-30T12:48:00.000-05:00

If you are enrolled in a Medicare Prescription Drug (Part D) plan or a Medicare Advantage (Part C) plan and need to make changes to your coverage for 2012, you must do so December 7, 2011. This Open Enrollment period started in mid-October and ends earlier this year than usual. Unless you are able to qualify for a special enrollment opportunity, through December 7th is the only time you can make changes like the following: join a Medicare Prescription Drug plan; switch between Medicare Prescription Drug plans; drop your Medicare Prescription Drug plan; switch from original Medicare to Medicare Advantage (or vice versa); or switch between Medicare Advantage plans.

If you need more information or assistance in making these decisions by December 7th, we urge you to visit this website or call 1-800-MEDICARE (1-800-633-4227).

Be Part of the Worldwide Movement: Sign Petition Today to Support Access to Work

2011-11-28T14:27:00.000-05:00

An international instrument demonstrating the rights and dignity of persons living with disabilities, the UN Convention on the Rights of Persons with Disabilities celebrates its fifth anniversary on December 3rd.As part of a worldwide campaign, the National MS Society is joining other international MS organizations in an online petition asking employers and decision makers to remove the barriers that prevent people with MS from finding and staying in work.

Work is a fundamental aspect of our lives. It provides not only a salary, but a sense of self-worth, an opportunity to lead an independent life and to be a fully integrated member of society. People living with multiple sclerosis (MS) and other chronic, fluctuating diseases are often marginalized by society and their rights to access work are at times not recognized by employers or safeguarded by law in their country. Some barriers to work can be easily removed through small changes to the workplace. Flexible hours, seated rather than standing work and a place to rest during the day could be the differences that enable some people with MS to stay in work for longer.

To play a significant role in the worldwide MS movement, click here to sign the online petition today. The petition--which urges positive changes that will enable people with MS to work--will be delivered to the High Commissioner for Human Rights Navanethem Pillay. The High Commissioner's office leads the global effort in identifying, highlighting and developing responses to today's human rights challenges. Thanks for taking action!

Grants Announced to Support Housing for Low-Income People with Disabilities

2011-11-21T12:17:00.000-05:00

Last week, the U.S. Department for Housing and Urban Development (HUD) announced $749 million in grants to support housing for very low-income seniors and persons with disabilities. The grants will help nonprofit organizations in 42 states produce accessible housing, offer rental assistance, and facilitate supportive services to an estimated more than 4,800 total elderly households and persons with disabilities. The Society applauds Congress’s bipartisan efforts that made this funding possible so that very low-income people with disabilities can more quickly access housing that meets their needs. To learn more about these grants and to see if your state received any funding, click here.

2011 Hall of Fame Honorees--MS Activists Recognized for their Advocacy Efforts

2011-11-15T14:20:00.001-05:00

We want to congratulate all of the MS Activists recognized at the National Multiple Sclerosis Society’s 2011 National Conference for their invaluable contributions. Each year, local volunteers receive national recognition in various categories for their dedication and outstanding service.

The amazing volunteers pictured below are helping to improve the lives of people living with MS through advocacy-- using their voices and leadership to drive policy changes and move us closer to a world free of MS. Click here to learn how each honoree is advocating at the state or federal level and witness the incredible difference they are making. You are an inspiration to all of us!!!

To follow the great example of these activists, be sure you are signed up to receive the Society’s federal action alerts and federal policy updates. Click here to sign up.

Meet this year’s honorees!

Kim Campbell - South Central Region

Karen Knable Jackson - National Capital Chapter

Ken Jones - Greater New England Chapter

Joel I. Kahn - Ohio Valley Chapter

Sarah Mayfield - Eastern North Carolina Chapter

Dr. Ed Nightingale - Upper Midwest Chapter

Rachael Stacom - New York City – Southern New York Chapter

Pam Trosino - Greater Delaware Valley Chapter

Thinking of our Nation's Veterans

2011-11-13T12:02:00.003-05:00

Bob

On this Veteran's Day weekend, MS Activist Bob Wolz with the Kentucky-Southeast Indiana Chapter has a special message:

"On behalf of the National MS Society, I would like to thank our veterans past and present that have served our country. I would especially like to thank my fellow veterans with MS who served and/or are serving our country. After I retired, I was missing a purpose in my life. After my diagnosis of MS in 2006, I found my new mission in life--advocating for everyone with MS, but specifically my fellow veterans with MS. In our current journey, we do not wear battle fatigues but the orange uniform of MS. I wear my uniform proudly and will continue to stand up, speak for, and be a leader for my fellow veterans.

Bob Advocating
for People with MS
in Washington, D.C.

In keeping with my Army Warrior Ethos.... I will always place the mission first - advocacy. I will never accept defeat. No is not in my vocabulary. I will never quit - regardless of how bad MS treats me or people try to disregard our fight. I will never leave a fallen comrade. For those that cannot or will not, I will be their eyes, ears, and heart. We will not be forgotten."

With Bob, the National MS Society thanks our nation's veterans for their service and dedication and their families who support them.

Update: Lives Worth Living Documentary

2011-11-09T16:27:00.001-05:00

We know that some of you were disappointed that you were not able to see the film Lives Worth Living on PBS at the end of October. This is the riveting documentary about the disability rights movement. Good news!!! There are still opportunities to see the film in some areas of the country. Click here to find out if it is showing in your area.

To learn more about the film, click here.

People with disabilities using their voice at the polls

2011-11-08T16:50:00.003-05:00

More people with disabilities are exercising their right to vote and making a difference. A new study conducted by two Rutgers University professors, Lisa Schur and Douglas Kruse, found that 14.7 million people with disabilities (57%) cast their ballots in 2008, while 64% of people without disabilities voted. While people with disabilities are still voting at lower rates than the rest of the American population, the gap is closing, research shows.

In 2010, among those that were eligible to vote, people with disabilities voted at a rate of 42.8% while people without disabilities voted a rate of 45.5%. As you can see, people with disabilities are making a significant contribution to the political process in our country. Despite the many barriers that people with disabilities face while trying to vote such as inaccessible buildings and transportation, they are making their presence known.

Click here, to read the full study.

In honor of Election Day, we would also like to highlight the state of Oregon for its effort in making voting more accessible for people with disabilities. County election workers are using iPads to help people vote by going to parks, nursing homes, community centers and other places that might have people who need assistance with voting. Check out what Oregon is doing to get more people with disabilities to the polls-this may be an idea worth pursuing in other areas of the country.

Lifespan Respite Care Reauthorization Bill Introduced to Support Family Caregivers

2011-11-04T13:06:00.001-04:00

The National MS Society and MS activists around the country applaud Representatives Jim Langevin (RI-2) and Cathy McMorris Rodgers (WA-5) for recently introducing the Lifespan Respite Care Reauthorization Act of 2011(H.R. 3266). This bipartisan effort is critically important for people living with MS and for their family caregivers. Up to one quarter of individuals living with MS will need long-term care services at some point. Often, a family member steps into the role of primary caregiver, becoming some of the 65 million family caregivers that provide 80% of our nation’s long-term care.

Despite the many benefits of family caregivers, it can be a stressful and draining job. Passing this bill and reauthorizing the Lifespan Respite Care Program would help ensure that short-term care that allows family caregivers to take a break from the daily routine and stress of providing care remains available.

There are many families who desire better access to respite care so that loved ones can remain at home and their family caregivers can strike a proper balance between caregiving responsibilities and other responsibilities, like work. In fact, the National MS Society, family caregivers and other Lifespan Respite supporters are gathered in Phoenix, Arizona this week for “The Many Faces of Respite, the 2011 National Lifespan Respite Conference and grantee meeting.

Conference participants applauding family caregivers

Check out this great YouTube video of Representative Langevin addressing the Conference attendees about the importance of family caregivers and the need for everyone to be involved in reauthorizing this program. Check back in a few days and the Society will have an action alert through which you can easily ask your U.S. Representative to cosponsor H.R. 3266.

Reminder: Tune in and watch Lives Worth Living, today, October 27, 2011 at 10pm

2011-10-27T12:17:00.002-04:00

We posted about it a few weeks ago and today’s the day! Don’t miss out on watching this powerful and moving film that captures the historical perspective of the Disability Rights Movement in the United States. Lives Worth Living is sure to inspire you—as it showcases stories told by the movement’s pioneers, bold legislators, and other important advocates who demanded equal rights and were victorious in enacting the Americans with Disabilities Act (ADA)—landmark legislation that guarantees people with disabilities the equal access they deserve. As a result of these activists’ work and the ADA, important strides have been made in terms of getting more people with disabilities into the workplace and making public transportation systems and public spaces like hotels and retail stores more accessible so that people with disabilities are integrated in their communities. MS activists all over the country have helped make these sorts of vital changes happen.

This film is made possible through the Emmy® Award-winning PBS series, Independent Lens and is produced and directed by Eric Neudel. The documentary airs at 10pm eastern, so be sure to check your local tv listings.

Watch tonight and spread the word to your family, friends, and social networks! We encourage you to share your thoughts on the film by posting comments on our blog!

To learn more, click here.

Need to make changes to your Medicare Prescription Drug (Part D) or Medicare Advantage coverage?

2011-10-24T17:10:00.016-04:00

Now is the time to do it! The Annual Open Enrollment period began October 15^th, and will end on December 7^th. This is earlier than it has been in the past, and the only time you can switch prescription drug plans during the calendar year unless you qualify for a special enrollment opportunity. We strongly encourage you to take advantage of this opportunity to review your coverage choices and change plans if another option better suits your needs. If you are happy with your coverage, review any changes your plan intends to make for 2012 to make sure. Current enrollees should receive an Annual Notice of Change (ANOC) from their plan highlighting any scheduled changes to the premium and other out-of-pocket expenses for plan enrollees. The ANOC will also tell you if there will be any changes to the formulary scheduled for 2012. Copies of these notices may also be requested directly from the plan. Changes made to drug plans will be effective on January 1, 2012 and remain in effect for the year.

Be sure to share this information with family and friends that rely on a Medicare drug plan so they don’t miss the December 7^th deadline.

For additional information on Medicare, click here.

A Must-See Documentary on the History of America’s Disability Rights Movement

2011-10-13T14:17:00.006-04:00

On October 27, 2011 at 10pm (Eastern Time), PBS will feature Lives Worth Living, an independent film that explores the challenges people with disabilities encountered before having equal access to schools, apartment buildings, and public transportation. Produced and directed by Eric Neudel, the film is told from the perspective of the disability rights movement’s pioneers, legislators, and other important advocates who for decades fought for equal rights and were victorious in enacting the Americans with Disabilities Act—landmark legislation that guarantees people with disabilities the equal access they deserve.

This powerful and moving film is made possible through the Emmy® Award-winning PBS series, Independent Lens. On October 27, be sure to tune in and watch a transformative film about the powerful movement that vastly improved the conditions for people living with a disability in the United States.

To learn more, click here.

As Super Committee Deadline Approaches, Call Your Members of Congress This Wednesday - Friday

2011-10-11T17:25:00.012-04:00

This Friday, October 14th is the deadline for Congressional Committees to submit recommendations for federal deficit reduction to the Joint Select Committee on Deficit Reduction (or "Super Committee"). The Super Committee is a bipartisan, bicameral body tasked with developing a plan that cuts $1.5 trillion over the next ten years. These are very serious conversations and decisions and as the process moves forward, we must work to ensure that federal cuts don’t harm critical programs for people with chronic diseases and disabilities, including people living with multiple sclerosis.

The National MS Society sent a letter to each member of the Super Committee urging it to protect MS research in the Congressionally Directed Medical Research Programs (CDMRP), research funding at the National Institutes of Health (NIH), Medicaid, Medicare, and Social Security. To read the Society's letter, click here.

Congressional input is valuable. As the October 14th deadline approaches, take a few minutes this Wednesday through Friday to call your members of Congress and let them know what is important to you. Talking points and phone numbers are listed below.

• Call 1-866-414-6376 to reach your U.S. Representative. You will hear a pre-recorded message. Enter your zip code using the numbers on your touch-tone phone. You will be connected to your Congressperson’s office.

• Call 1-866-414-7494 to reach your U.S. Senators. Again, you will hear a pre-recorded message and will need to enter your zip code. You will then be asked whether you want your call to go to your state’s junior Senator or your senior Senator. After making your selection, your call will be directed to the appropriate office. You should make a phone call to each Senator’s office.

• Be sure to call your U.S. Representative and both U.S. Senators—every member is important!

Here is a sample script you can use:"Hi, my name is ____(name)______. I’m a voter from ____(give your home town)___ as well as an advocate for the National MS Society. May I please speak to the staff person who handles health care issues?

Talking Points to Health Staffer:Today, the National MS Society is joining with other patient advocacy groups to ask Members of Congress to consider how deep cuts in health spending will impact patients.

Reducing investment in medical research and public health care coverage may save money now, but this will lead to even higher costs in the future if the health of Americans decline as a result of the cuts. Protecting investments in health includes areas such as:

• Protecting funding for MS research in the Congressionally Directed Medical Research Programs and National Institutes of Health and,

• Maintaining entitlement programs for persons living with disabilities by rejecting changes to Medicaid, Medicare, and Social Security, which would result in reduced access to and/or quality of services for eligible individuals.

Dramatic cuts in these two areas would dramatically impact me [and my family]. [Share your personal story.]

Please tell Representative/Senator ___(insert name)____ to consider the impact that cutting health spending would have on me and the rest of the nation. Thank you."

National Disability Employment Awareness Month: Recognizing the Contributions of People with Disabilities

2011-10-05T15:05:00.005-04:00

Through Presidential Proclamation, President Barack Obama publicly declared October 2011 as National Disability Employment Awareness Month. This proclamation recognizes the contributions that people with disabilities make every day and the vital role they play within our nation’s workforce and society.

The proclamation for the National Disability Employment Awareness Month was first introduced more than 20 years ago and while significant strides have been made—for instance through passage and enforcement of the Americans with Disabilities Act—there remains great room for growth. President Obama explains, “Unfortunately, the unemployment rate for people with disabilities remains too high -- nearly double the rate of people without disabilities -- and reversing this trend is crucial." To combat this issue, the Administration is promoting initiatives that will integrate people with disabilities and the elderly into our workforce in a more effective way. This includes more hiring of persons with disabilities, ensuring the workplaces are accessible, and promoting accessible public transportation.

To read the full Presidential Proclamation, click here.

Grants Announced Supporting Employment and Retention of People Living with Disabilities

2011-09-30T16:35:00.006-04:00

On September 27, 2011, The U.S. Labor Department allocated more than $21 million to seven states under the Disability Employment Initiative to improve employment services for those unemployed, underemployed, and/or receiving Social Security disability benefits. California, Hawaii, Ohio, South Dakota, Tennessee, Washington and Wisconsin received new grants and Alaska, Arkansas, Delaware, Illinois, Kansas, Maine, New Jersey, New York and Virginia received continuing grants. The two government agencies funding this initiative are the US Labor Department's Employment and Training administration and its Office of Disability Employment Policy.

The goal of Disability Employment Initiative is to ensure that all workers, including those with disabilities, will be able to benefit from employment and retraining services, so that they can attain permanent employment opportunities. Projects funded through these grants vary but include: hiring staff with expertise in disability and workforce issues; supporting collaboration across multiple workforce and disability service systems; and expanding the workforce development system’s participation in the Social Security Administration’s Ticket to Work Program by requiring participating state workforce agencies or local workforce investment boards to become employment networks.

This is important progress and a great accomplishment for the disability community. The Society will keep working to ensure equal access. For more information on the grants, click here.

Greater Access to Rail Stations for Americans with Disabilities

2011-09-23T09:57:00.004-04:00

United States Transportation Secretary Ray Lahood took a step in the right direction last week when he announced that individuals with disabilities will have greater access to intercity, commuter and high-speed train travel. This change will require new station platform construction or renovation to allow people with disabilities to get on and off any car on a train. Passenger railroads must provide level-entry boarding at new or altered stations in which no track passing through the station and adjacent to platforms is shared with existing freight rail operations.

This change is possible through an amendment of the U.S Transportation (DOT) American with Disabilities (ADA) regulations. This new ruling takes into consideration the needs of individuals with disabilities and paves the way for new initiatives.

For more information, click here.

What Could Happen to Social Security?

2011-09-01T15:12:00.002-04:00

On August 22, the Associated Press published an article about the increasing need for Social Security disability benefits, in light of the continued economic downturn, the related pressures it places on the Social Security Administration, and Social Security’s projected long-term solvency.

Social Security is far more than a retirement program--more than one-third of all monthly Social Security checks go to people who are not retired. At least 11 million people with disabilities, their spouses and children receive Social Security benefits and this includes some people living with multiple sclerosis (MS). If you live with MS and are unable to work due to an MS-related disability and/or other conditions, you might be entitled to Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits.

Multiple sclerosis can be an extremely expensive disease to manage, with most people with MS being prescribed one of the “disease modifying therapies” and four to six other medications to ease symptoms and help maintain a high quality of life. Combined, drugs to help manage multiple sclerosis can exceed $30,000 per year or more than $800 per month out of pocket. The Social Security benefits people living with MS and other disabilities receive helps keep them out of poverty. More than one-half of disability insurance beneficiaries rely on Social Security for at least 75 percent of their income.

In the 25-month period ending in October 2010, the number of claims pending a disability medical decision rose from 556,670 to 851,812, an increase of 53 percent. Despite these unprecedented challenges, the Social Security Administration (SSA) continues to utilize its resources to clear more hearing cases. Processing time for a hearing has been reduced from 491 days for all of FY 2009 to 377 days in the month of October 2010. SSA is on track to meet its commitment to eliminate the backlog, but needs continued resources to do so.

The National MS Society has supported annual appropriations for the SSA to continue driving down disability backlogs, improve services to people with disabilities, increase efficiency, and keep pace with the rising demands of the American public. As the newly-formed Congressional “supercommittee” considers ways to significantly reduce the nation’s long-term deficit, changes to Social Security are possible. The Society will continue collaborating with other disability organizations to help ensure that any changes to this program do not happen to the detriment of persons living with disabilities. To learn more about the importance of Social Security and possible changes, click here.

Q & A on Essential Health Benefit

2011-08-15T13:22:00.004-04:00

Confused about healthcare reform? You’re not alone – it’s complicated! To shore up your understanding of some basic concepts or provisions in the Affordable Care Act (ACA), we’ll include a single question and answer each week. Send your suggestions about which concepts, terms, key dates or other aspects of healthcare reform you’d like a Q and A on in future editions of Federal Fridays via e-mail to Kim.Calder@nmss.org.

We’ll start this week with a question about the Essential Benefit Package.

Q: What is most important to understand about the “essential benefit package”?

A: To help standardize health insurance policies and coverage, Congress included a list of 10 items and services as the “essential benefit package” in the Affordable Care Act. This list is only an outline however, and the difficult task of further defining the amount and scope of these essential benefits was left up to the Secretary of HHS to clarify through future regulations.

The law also requires the benefit package to be “like a typical employer-based plan”. Advocates and other stakeholders have been speculating about how HHS will interpret all of this, and hope to see the proposal (regulation) before the end of 2011. Note that the essential benefits will be required in all individual and small group policies sold as of 2014 as well as new Medicaid coverage.

10 Essential Health Benefits categories required under the Affordable Care Act:

Ambulatory patient services
Emergency services
Hospitalization
Maternity and newborn care
Mental health and substance use disorder services, including behavioral health treatment
Prescription drugs
Rehabilitative and habilitative services and devices
Laboratory services
Preventive and wellness services and chronic disease management
Pediatric services, including oral and vision care

Debt Ceiling Deal Reached!

2011-08-04T10:57:00.004-04:00

Earlier this week Congress and the Administration brought together a debt ceiling deal that avoided possible U.S. Government Default and implemented a structure by which the debt ceiling will be raised, spending cuts will be enacted, and further automatic cuts will happen should Congress and the Administration not agree on additional savings.

The debt ceiling agreement and subsequent actions in Congress are important to the National MS Society because it is estimated that approximately 40% of people living with MS rely on Medicaid or Medicare or a combination of both for their health care needs. Changes to these programs are therefore quite important and a top priority for the Public Policy Office.

In addition to agreeing to hold a vote on a Balanced Budget Amendment to the U.S. Constitution, the ‘Budget Control Act’ encompassed the following two key components:

1. Nearly $1 Trillion in cuts over 10 years by enacting discretionary spending caps

• The President gets authority to immediately increase the debt ceiling by $400 billion (to take us through Sept 2011) then another $500 billion happens automatically unless Congress passes a measure of disapproval (which would then be vetoed).

2. Creation of a 12 Member Joint Select Committee on Deficit Reduction in Congress to identify another $1.2 to $1.5 Trillion in cuts by November 23, with votes taken by December 23.

• Often referred to as a ‘super committee, it must identify and Congress must enact $1.2 trillion in debt reduction by end of year or a trigger kicks in which will sequester that amount through automatic, across the board cuts. (For a Q & A on the Committee see Kaiser Health)

• If the committee approves and Congress passes debt reduction less than $1.2 trillion, the automatic spending reductions would make up the difference. For example, if Congress only enacts $800 billion, then $400 billion will happen through across the board cuts.

• The committee can consider any part of the budget including entitlements (such as Medicaid) and revenues.

• Cuts to entitlements (to elicit savings) are likely to occur through policy changes, or structural reforms of the program(s). Policy changes could include greater state flexibility and federal waivers (impacting Medicaid possibly).

• If at least $1.2 trillion in savings is enacted, then the debt ceiling increases again, dollar for dollar, automatically, which will take us through 2012.

The debt bill exempts Social Security, Medicaid, and low income entitlement programs from sequestration, however, if the $1.2 billion in savings is not enacted, then Medicare provider and plan reimbursement can be cut but up to 2% as part of the sequester. The across the board cuts through sequestration would be split, 50% defense and 50% non-defense spending which creates incentive for the super-committee to actually put forward a plan.

The Society is pleased that Medicaid has been spared immediate cuts and has been exempted from potential across the board cuts down the road. We thank champions on Capitol Hill for helping make this happen. Moving forward, the Society will continue to collaborate with organizational partners to educate Capitol Hill about the importance of programs like Medicaid, Medicare, and Social Security to people living with disabilities. Stay tuned for opportunities to weigh in with your members of Congress and help protect these vital programs! If you are not signed up to receive the Society’s federal action alerts, be sure to sign up through this site (www.nationalmssociety.org/MSActivist) TODAY!

[For additional information on the financial burdens facing people living with MS, here is a fact sheet]

21st Anniversary of ADA

2011-07-29T16:06:00.033-04:00

On Tuesday, July 26th, members of Congress and about 200 Americans gathered in the Dirksen Senate Building to celebrate the 21st anniversary of passage of the Americans with Disabilities Act (ADA). This wasn’t just a day to savor how far the ADA has brought our country, but to see how much further we have to go in the fight for equality. Health and Human Services Secretary Kathleen Sebelius commemorated the anniversary with words of encouragement for all that has been done since the implementation of the ADA 21 years ago. Secretary Sebelius also spoke on areas she sees for more progress, such as accessible taxis in all of D.C. and more support for caregivers including through the Lifespan Respite Care Program.

President Obama through a Presidential Proclamation commemorating the anniversary stated: “Equal access, equal opportunity, and the freedom to make of our lives what we will are principles upon which our Nation was founded, and they continue to guide our efforts to perfect our Union. Together, we can ensure our country is not deprived of the full talents and contributions of the approximately 54 million Americans living with disabilities, and we will move forward with the work of providing pathways to opportunity to all of our people.” President Obama put into words what so many Americans felt on that day in July, 21 years ago. He went on, encouraging “Americans across our nation to celebrate the 21st anniversary of this civil rights law and the many contributions of individuals with disabilities.”

At the celebration, Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5) addressed the crowd--which was full of persons living with disabilities who know firsthand how the law has positively impacted their lives. These legislators—who were integral to the law’s passage—discussed the importance of this anniversary, with Congressman Hoyer admitting it is the victory of which he is most proud. I met with Senator Harkin last year at the 20th anniversary of the ADA. I cannot believe it has been a year since the celebration at the White House. That was a monumental experience for me, and for all of those who today—because of the ADA and its commitment to ensuring equal rights to all—do not face as many road blocks. Today I may not be in a wheel chair, I may not have any sort of obvious physical problems, but the ADA affects my life every day. In college, I am protected by the ADA. I invoke my rights whenever I have to take a test; because of my disease and its impact on me, I am allotted more time. I am also allowed a note taker to better help me study for exams. The ADA protects me when I have a relapse- my teachers cannot legally persecute me because of my disability.

On the anniversary of the ADA, I collected a list of what differences were made because of this bill. In one hour, I counted over 30 resources made more accessible because of the ADA. To think of what life would be like today if handicapped accessible bathrooms, wheelchair ramps, automatic doors and hundreds of other installations were not around, is a life I try to not imagine. This country is a leader in declaring equality for all citizens—including those who live with disabilities. In joining the movement, you show your support in fighting for equality for all.

Senator Harkin looked back on the days before ADA and the differences the bill has made.

Congressman Hoyer spoke on the importance of the ADA and the road ahead for those with disabilities.

Surveillance Act Introduced

2011-07-22T11:05:00.012-04:00

On Wednesday, July 20, 2011, the National Neurological Diseases Surveillance System Act (H.R. 2595) was introduced. Last Congress, it was introduced and known as the MS and Parkinson’s Disease Registries bill, but the legislation was broadened before it was passed by the House of Representatives to include all neurological diseases. If enacted, this legislation will bring us yet another step closer to a world free of MS. This bill would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) that will track and collect data about neurological diseases, including MS.

Currently, no accurate estimates are available to help us better understand the complexities and intricacies of the MS population.

As a person living with MS, I was shocked to learn that the last national study of incidence and prevalence of MS was conducted 36 years ago - in 1975! Can you imagine trying to formulate an accurate hypothesis and conduct scientific studies with data almost four decades old? H.R. 2595 would fix this problem by aggregating all existing de-identified information in one central location for neurological diseases, and thus it will eliminate road blocks for researchers due to the lack of knowledge that inhibits their work.
Over the past forty years, technology like the MRI and other innovative tools have developed that allow doctors to diagnose MS better than ever before. With these advancements has come an increase in detection of MS yet we still don’t know answers to fairly simple questions like— how many people are currently living with MS in the US? Where do people with MS live? What ratio of people living with MS are women versus men? By structuring a centralized system to track important data, H.R. 2595 would enlighten researchers by answering these fundamental questions, helping them solve the puzzle of MS and discover better treatments and one day, a cure. With this increased knowledge both private and public research entities, like the National MS Society, the National Institutes of Health (NIH), and the Congressionally Directed Medical Research Program (CDMRP) can more precisely focus research efforts and ensure that limited research dollars are being maximized.

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!

Briefing on Capitol Hill

2011-07-14T16:49:00.014-04:00

On Tuesday, July 12th the National MS Society hosted a briefing on Capitol Hill for members and Congressional staff focusing on the importance of MS research. Minneapolis neurologist Dr. Jonathan Calkwood gave a presentation on current MS research efforts and highlighted that since 1946 the National MS Society has invested over $725 Million dollars on research. During a Q & A period Dr. Calkwood talked extensively about the shortage of neurologists in general, but that the shortage for neurologists who specialize in MS is an even bigger problem.

Congressional MS Caucus co-chairs, Missouri Congressman Russ Carnahan (MO-3) and Texas Congressman Michael Burgess, MD (TX-26), provided opening comments at the briefing. Ted Thompson, Vice President of Federal Government Relations, highlighted the Congressmen’s work noting that they are true legislative champions for people living with MS. Burgess and Carnahan were instrumental in the push for CDMRP funding.

Public Policy Office intern Channing Barker spoke at the briefing as well, providing the perspective of a young person living with MS and stressed how critical continued NIH and CDMRP research funding is for her and all people with MS.

To Join The Movement, click here!

Dr. Jonathan Calkwood shares the importance of MS Research

Caucus Co-Chair Congressman Carnahan

Caucus Co-Chain Congressman Burgess, MD.

Congresman Carnahan, Channing Barker, Congressman Burgess MD., and Carrie Lamb

Channing Barker shares her story of living with MS.

How Important is Your Neurologist?

2011-07-01T16:10:00.004-04:00

When I can’t walk or am unusually clumsy, I call his office. When my body loses sensation due to lesions on my brain, he is my go-to guy. If my sight gets a little fuzzy from possible optic neuritis, I make an appointment. These situations are true for many people living with MS - calling their neurologist to get every new symptom checked out. Yet, this critical reaction may be forced to change in the future, as it is expected the number of neurologists who enter the MS field will decrease considerably.

I have seen my neurologist twice in the last six months. A predicted shortage of neurologists could cause those vital appointments to come to a screeching halt for me and others like me. As the number of neurologists specializing in MS decreases, the number of people diagnosed with this dastardly disease continues to rise, ironically due to the advances in neurological diagnostic tools. The specialist's base of patients will grow, thus making it harder for patients to get a timely appointment. And with a disease like multiple sclerosis, time is of the essence for treatment of a relapse.

This past year, the public policy office worked with Congressman Michael Grimm along with nine other original co-sponsors on the PATH Act- Improving Physician Access in Teaching Hospitals (H.R. 2224) to prevent a physician shortage in the United States. Congressman Grimm introduced the PATH Act in the middle of June.

Now it’s your turn to take action for H.R. 2224!

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!

Olmstead Anniversary

2011-06-27T09:35:00.015-04:00

In June 1999, I was a ten-year old sweating it out in the fields of an Oklahoma summer. Little did I know what a Supreme Court decision that month would mean for my future. On June 22, 1999, the Supreme Court ruled “that under the Americans with Disabilities Act (ADA) unjustifiable institutionalization of a person with a disability who, with proper support, can live in the community is discrimination.” In its ruling, the Court said that” institutionalization severely limits the person's ability to interact with family and friends, to work and to make a life for him or herself.” (U.S. Department of Health and Human Services, Administration for Children and Families website)

For those of us who don’t remember, the Olmstead case was brought to court by two women from Georgia who were developmentally challenged. Even though the women, L.C. and E.W., were told by health professionals that they could be cared for in a community based program, they were receiving no such thing. Rather, L.C. and E.W. were receiving treatment at a state-run institution at Georgia Regional Hospital, Atlanta. L.C. filed a suit against the state alleging that it failed to place her in a community based program once her “treating professionals determined that such placement was appropriate.” (law.cornell.edu)

In the end, “the Supreme Court found that unjustified isolation is properly regarded as discrimination under the Americans with Disabilities Act, and required that the women be served “in the most integrated setting appropriate to [their] needs.””(Olmstead v. L.C., June 1999, p.6) In the Olmstead decision, the Supreme Court established specific conditions when community-based services were required for persons with disabilities: the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others. (Olmstead v. L.C., June 1999, p.1)” (http://www.hcbs.org/glossary.php#)

Now 22 years old and living with the diagnosis of multiple sclerosis (MS), I see the remarkable achievements made by those living with MS, mental illness, paralysis, etc. The Olmstead anniversary is one to remember the importance of community integration, celebrate the great strides made by people with disabilities, and strengthen rather than weaken important programs like Medicaid that support home and community-based care. Along with the Americans with Disabilities Act, the Olmstead case gives advocates like us hope that we will achieve more in the coming years for all with disabilities. Join the Movement!

President Barack Obama looks at a painting presented to him by artist Lois Curtis, center, during their meeting in the Oval Office, June 20, 2011. Joining them are, from left, Janet Hill and Jessica Long, from the Georgia Department of Labor, and Lee Sanders, of Briggs and Associates. (Official White House Photo by Pete Souza)

Photo from:

http://www.whitehouse.gov/blog/2011/06/22/olmstead-champion-meets-president

Act Today to Preserve Funding for MS Research

2011-06-21T16:59:00.006-04:00

With your help over the past four years, we’ve been able to get $17 million dedicated to MS Research through the Defense Department’s Congressionally Directed Medical Research Programs (CDMRP) . This week the House of Representatives is scheduled to vote on the FY 2012 Defense Appropriations bill that includes an additional $3.8 million for MS Research. There may be efforts to reduce or completely eliminate CDMRP and lose the momentum of the cutting edge research underway. It is important that you act now to urge your Representative to continue funding for the CDMRPs!

Emerging evidence indicates a potential link between combat service 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." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.

Contact your Representative today and remind them of the importance of maintaining these programs that could lead to better treatments for MS in the future!

Urge Your Senators to Support MS Research

2011-06-01T16:52:00.008-04:00

A few weeks ago, MS activists helped garner support in the U.S. House of Representatives for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP). In just a few short days, MS activists sent over 1,700 emails to Capitol Hill and in response, 50 members of the House signed on to a bipartisan letter circulated by Representatives Michael Burgess, M.D. (TX-26) and Russ Carnahan (MO-3).

This week, MS activists must take quick action again--this time, to urge your Senators to support funding for MS research in the CDMRP. Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) have circulated a bipartisan Dear Colleague letter on the Senate side. The deadline is next Monday, so take action today and urge your Senators to support this vital programmatic request for MS research!

Emerging evidence indicates a potential link between combat service 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." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.

Click here to take action today!

Help Urgently Needed to Maintain MS Research Funding

2011-05-10T12:51:00.003-04:00

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

2011-04-28T10:07:00.002-04:00

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

2011-03-22T17:42:00.001-04:00

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

2011-03-18T18:32:00.003-04:00

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

2011-02-02T17:18:00.001-05:00

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.

Lifespan Respite Featured on New York Times Blog

2011-01-04T11:20:00.002-05:00

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease. Often, a family member steps into the role of primary caregiver to be closer to the individual with MS and involved in care decisions. This is typically less costly than placing an individual in a long-term care facility and also keeps the individual in the community and in their home. Caregiving can be a stressful job, however, and respite is often sought.

Respite care is short-term care that helps an individual or family take a break from the daily routine and stress of providing care. It is an essential part of the overall support that families need to provide quality care and keep their loved one at home, by providing quality time to care for themselves. A federal program was started in 2006 to help establish or enhance statewide respite systems that serve regardless of age or disability. This program--the Lifespan Respite Care Program--offers great assistance and hope but has been severely underfunded.

The New York Times blog recently featured Lifespan Respite and the Society urges individuals and chapters to post comments about their personal experiences with caregiving or needing caregiving and the benefits of the Lifespan Respite Care Program. Robust funding for the Lifespan Respite Care Program is a priority for the Society and we have worked in close collaboration with the National Respite Coalition on this issue. Click here to read the blog article and post a comment.

ADA Settlement with QuickTrip Corporation

2010-12-29T11:06:00.003-05:00

The U.S. Department of Justice filed a lawsuit against QuikTrip Corporation, owner and operator of QuikTrip gas stations, convenience stores, truck stops and travel centers, in the U.S. District Court for the District of Nebraska on July 15, 2010, alleging that its facilities are not accessible to persons living with disabilities. A Consent Decree was approved by the Court on July 19, 2010 that establishes a $1.5 million fund to compensate any individual who experienced discrimination in violation of Title III of the Americans with Disabilities Act at QuikTrip owned locations. Claims must be filed by January 15, 2011. To learn how to file a claim, click here.

Society's Joyce Nelson Thanks Senator Byron Dorgan

2010-11-22T14:04:00.000-05:00

(left to right): Shawn O'Neail, Vice President of Federal Government Relations; Senator Byron Dorgan (ND);
Joyce Nelson, President & CEO; David Chatel, Executive Vice President of Advocacy

During her visit to Washington, D.C. last week, President & CEO of the National MS Society Joyce Nelson visited Capitol Hill to thank Senator Byron Dorgan (ND) for his lengthy service in the United States Congress and for his bold activism as Senate Co-Chair of the Congressional MS Caucus. Retiring this year, Senator Dorgan served six terms in the U.S. House of Representatives and was elected to the U.S. Senate in 1992. Under his leadership and in close collaboration with Co-Chair Orrin Hatch (UT), the MS Caucus has grown to an impressive 23 members. True to the Caucus's mission, Senator Dorgan has helped raise awareness about MS, actively engages in discussions about access to quality health care, and seeks and pursues creative solutions to the challenges facing people living with MS and their families.

One of his most notable achievements, Senator Dorgan introduced and has helped shepherd through the Senate the National MS and Parkinson's Disease Registries Act (S. 1273). Currently, a national coordinated system to collect and analyze data on MS and other neurological conditions does not exist. Broadened in the House to the National Neurological Disease Surveillance System Act (H.R. 1362), this legislation could help uncover and inform promising areas of research, such as genetic and environmental risk factors and support the discovery of disease therapies, treatments, and one day--a cure. The National MS Society applauds Senator Dorgan for his long-time commitment, as he has undoubtedly helped move us closer to a world free of MS.

Senator Robert P. Casey, Jr. (PA) will serve as MS Caucus Co-Chair, alongside Senator Orrin Hatch, in the 112th Congress.