TOMORROW: SOCIETY HOSTS LIVE WEBCAST ON PROGRESSIVE MS

On May 23, 2012, the Society is hosting a live nationwide Webcast “The Next Frontier: Understanding and Treating Progressive MS.” The Webcast features a panel of experts and will take place from 7:00 to 8:00 p.m ET. In order to participate in the webcast, you must register online by clicking here . 

Topics for the webcast include:

• Why aren't there more therapies for people with progressive MS?
• What do we know about what causes progression in MS?
• What are the challenges faced in understanding and treating progressive MS?
• What’s on the horizon in terms of preventing progression and repairing the nervous system?
• What’s being tested right now for people with progressive MS? What can people do now to maximize their quality of life?  

The expert panel will be moderated by Dr. Timothy Coetzee, Chief Research Officer of the National MS Society. The panelists for tomorrow’s webcast are Peter Calabresi, MD; John DeLuca, Ph.D, ABPP; and Daniel Reich, MD, Ph.D. Dr. Calabresi is a Professor of Neurology and the Director of the Johns Hopkins Multiple Sclerosis Center. Dr. DeLuca is the Vice President for Research at Kessler Foundation Research Center, a Professor of Physical Medicine and Rehabilitation and of Neurology and Neuroscience at UMDNJ-New Jersey Medical School. Dr. Reich joins the panel from the Neuroimmunology Branch of the National Institute of Neurology where he is Chief of the Translational Neuroradiology Unit, as well as an Adjunct Professor in the Neurology Department at Johns Hopkins University School of Medicine.

Tomorrow, registered participants will be able to ask their questions to the panelists in real-time. We look forward to hearing from you tomorrow!

HOUSE COMMITTEE APPROVES $5 MILLION FOR MS RESEARCH IN THE CDMRP

On May 17th, the House Appropriations Committee approved its Fiscal Year 2013 Defense Appropriations bill that includes funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP). The Committee approved $5 million for MS research—which is an increase over FY 2012’s funding level of $3.8 million. The CDMRP is a peer-reviewed program that funds high-risk, high-reward research.

At the Society’s 2012 Public Policy Conference in March, MS activists urged their federal lawmakers to support $10 million for MS research in FY 2013. Representatives Michael C. Burgess (TX-26) and Russ Carnahan (MO-3) championed a bipartisan Dear Colleague letter that with urging from MS activists around the country, 66 other Representatives signed on to supporting $10 million for MS research in the CDMRP. The Society is very pleased with the Committee’s recommendation for $5 million for MS research. In the continued difficult budget climate, programs are typically flat funded if not decreased. The Senate is expected to begin working on its Defense Appropriations bill in the near future, so a lot of work remains—but in the meantime, this is great news for MS research funding. Great work, MS activists!

VA PILOT MAKES IPADS AVAILABLE TO SOME FAMILY CAREGIVERS

This summer, the Veterans Affairs (VA) Department will provide 1,000 family caregivers with Apple iPads to help improve at home care for veterans. The iPads are part of the pilot project Clinic-in-Hand and will come with health care applications and applications integrating the VA data system. Clinic-in-Hand is a project through the VA to help improve veterans’ access to mobile applications. In early 2013, the VA applications store will launch and the applications available from the pilot project will be available to all veterans. Clinic-in-Hand is being developed by a Washington, D.C.-based verified Service Disabled Veteran Owned Small Business, District Communications Group LLC.

Primary caregivers currently enrolled in the VA’s Comprehensive Assistance for Family Caregivers program will be invited to participate in the Clinic-in-Hand pilot project, and 1,000 eligible participants will be randomly selected this summer. The Comprehensive Assistance for Family Caregivers program is part of the 2010 Caregivers and Veterans Omnibus Health Services Act.

The Caregivers and Veterans Omnibus Health Services Act makes a number of other new services available for family caregivers including a monthly stipend, travel expenses, access to health insurance, mental health services and counseling, comprehensive VA Caregiver training, and respite care. Eligibility for these services is limited however to veterans who sustained a serious injury (including traumatic brain injury, psychological trauma or other mental disorder) incurred or aggravated in the line of duty, on or after September 11, 2001. Click here to see if you or someone you know is eligible and to learn more about the available benefits.

Currently few MS caregivers are using high-tech medication support systems, caregiver trainings, and caregiving coordinated care systems—not because of lack of interest, but because of lack of access. Veterans living with MS and their caregivers who meet eligibility requirements under the law could gain access through this great new pilot project.  Congrats to the VA for making this progress possible!

FEDERAL FRIDAYS

Breaking News: CRPD.  As many of you are aware, we have been engaged with many other organizations in working to secure leaders in the Senate to champion ratification of the Convention on the Rights of Persons with Disabilities (CRPD).  More recently we engaged Chapters and MS Coalition members to urge President Obama to transmit the CRPD to the Senate so it can begin the ratification process – yesterday we received notice from the White House that it is ‘expeditiously’  transmitting the CRPD to the Senate for ratification.  We will continue to engage and will work with our Activists to build support for this treaty in the Senate.  Thanks to everyone who had a chance to send a message to the Obama Administration on this!

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‘Old Drugs, New Tricks’.  That’s how a recently announce initiative between the NIH’s new translational science institute is characterizing a bold initiative being undertaken with Pharmaceutical companies to determine whether existing older therapies can have new applications.  An initial $20 million has been allocated to this effort.

The UFAs.  One source of funding for the Food and Drug Administration (FDA) are user fees on drugs and devices.  Congress is currently working on passage of the Prescription Drug User Fee Act (PDUFA) and the Medical Device User Fee Act (MDUFA) among other FDA related legislation.  The National MS Society has taken an active role in support of these efforts – it’s critical that these laws be re-authorized so that the FDA has the funding necessary to ensure the safety and efficacy of drugs and medical devices.

Sequestration.  On January 1, 2013 sequestration will take place in order to cut federal spending.  This was part of last summer’s Budget Control Act that created a Super Committee to devise spending reductions.  Should the Committee and Congress not act on those spending reductions (which they didn’t), then a ‘trigger’ would kick in on January 1, 2013 (which is currently the plan) to make automatic cuts.  These cuts will be felt – they won’t be fluffy little symbolic cuts.  One area that will take a hit is medical research – Research America has issued a report called Sequestration:  Health Research at the Breaking Point that details the impact sequestration could have on medical research. 

Medicare Fraud Bust.  107 individuals have been arrested in the largest Medicare fraud case ever.  The alleged fraud amounts to $450 million.  And now the Feds are looking into possible over-payments totaling $5.6 Billion to 2600 drug stores for prescriptions.  Expect greater enforcement by the Feds as they crack down on fraud and abuse within the Medicare system. 

Can we handle the truth?  Americans spend, on average, double what other people spend around the world on their health care.  We spend between one-third and two-thirds more than 12 other advanced nations.  So since we’re spending as though we’re paying for Cadillac coverage, that must mean that we’re seeing Cadillac results right?  Of course you know the answer, and it’s a big ‘no.’  For more on the truth, click here

Veterans and Transportation.  U.S. Secretary of Transportation Ray LaHood is engaging the veteran community in a national online dialogue regarding transportation issues impacting U.S. military veterans.  To register and provide input go to www.projectaction.org

IBM Analytics & MS.  IBM announced that researchers from The State University of New York (SUNY) at Buffalo are using IBM analytics technology to study more than 2,000 genetic and environmental factors that may contribute to multiple sclerosis (MS) symptoms.

Where do we need Docs?  Most people involved in the health care realm realize that there is a shortage of doctors in America, a shortage likely to be exacerbated when 30+ million previously uninsured Americans obtain insurance as part of the Affordable Care Act.  The Washington Post has created a map showing where we need the doctors.

Should the DOJ enforce laws?  Yes, silly question.  Of course the Department of Justice should be enforcing our laws, including the Americans with Disabilities Act.  Well some in Congress are pushing legislation and amendments that would specifically prohibit the Justice Department from enforcing a law regarding access to pools.  It really is quite unbelievable and the President announced that he’ll veto the appropriations bill if such an amendment is added.

Cost of Drugs.  This is no surprise to people with MS who are currently taking a therapy but Kaiser Health News had a piece focused on the fact that patients are bearing more and more of the cost of specialty drugs.  This is an issue of great concern to the National MS Society and we continue to explore various options to help address the issue.  Kaiser’s story featured comments from our Vice President of State & Local Government Relations, Bari Talente.

Spying on Russia.  Well, this story isn’t really about that, but it’s about the technology once employed in spying on Russia.  It’s now being used to help patients and their caregivers.  (I never thought I’d be able to sneak in a photo of a spy plane into Federal Fridays!)

America in 2030.  A recent report made startling predictions about Americans and our weight and predicted that by 2030, fully 42% of Americans will be obese unless we change course now.

Seeing a Doctor.  Kaiser Health reports that in the past decade the difficulty in accessing health care has become significantly worse for tens of millions of Americans under age 65, including those who have health insurance.

That’s it for now – have a terrific weekend!

Ensure Equal Access to Swimming Pools for People with Disabilities

In 1990, Congress passed the Americans with Disabilities Act (ADA) with broad bipartisan support and President George H.W. Bush signed it into law. This historic achievement granted people living with disabilities the rights they deserve and protection from discrimination due to a disability. Specifically, it protects people with disabilities in employment settings, state and local government activities (such as public education and voting), public accommodations (such as hotels and restaurants), commercial facilities, transportation, and telecommunications.

Since its enactment, the ADA has been strengthened through amendments and many regulations that clearly spell out the rights of people with disabilities. Nonetheless, the ADA has yet to be applied and enforced for some activities and services, including ensuring equal access for people with disabilities to swimming pools. Access to swimming pools is as important for people with disabilities as it is for everyone else. Swimming is an important part of participating fully in one’s community and engaging in social interaction with friends and family. In addition, for many people with disabilities, swimming is a critical means of exercise that helps maintain strength and independence.

Initial guidelines on the accessibility of swimming pools were issued in 2002 and since then, have been incorporated into more official guidelines in preparation for the required formal rulemaking process. Recently, there have been efforts by certain opponents to further stall the final rule and to deprive the Department of Justice of their authority to enforce them. Either of these actions would weaken the intention of the ADA and leave people with disabilities waiting even longer for their rights to equal access to swimming pools.

Click here to contact your members of Congress about this important issue. Your emails will state that people with disabilities have the same rights as everyone else to use swimming pools and will urge your members of Congress to oppose efforts to stall this regulation.