ADVOCACY SHOULD BE PERSONAL: RECAP OF A POST BY MS ACTIVIST TAMMY PILISUK

Tammy Pilisuk is an MS activist from California who has been involved with the National MS Society for more than 20 years, as well as a health educator for more than ten. She is also a member of the Society’s Federal Activism Council, which annually reviews unmet needs in the MS community and helps determine policy priorities. Recently, she shared her advocacy insights in a post on the SurroundHealth Blog. You can read her post here.

Tammy points out that the basics of health advocacy are to know your issue(s), stay focused on key points, have a few facts, know what committees the policy maker sits on, tie it to a constituent concern, and leave a written leave-behind piece. But besides the key structural elements of health advocacy mentioned above, Tammy reminds us that advocates can’t forget why the issue is important and the difference it will make to real people. For Tammy, MS advocacy is personal—her mother has MS. In addition to being a health policy expert, Tammy finds herself in the role of affected family caregiver.

Throughout her post, Tammy talks about her own experiences with advocacy. As Tammy says, “I remind others that while policymakers can pick apart your budgetary requests, they can never argue with your story. This is where you bring the head and heart together.” Tammy often uses her mom to help her make her point while advocating, but she also uses her own life experiences. Advocacy is, and should be, personal.

In her post, Tammy takes time to teach all of us something about advocacy. Thank you, Tammy, for sharing your story!

TODAY IS WORLD MS DAY!

Today is World MS Day. Our global connections make us a powerful MS movement - we are 1000 Faces of MS. Share your story at www.MSconnection.org or globally at www.worldMSday.org and share this video with your network to raise awareness.

WORLD MS DAY IS TOMORROW!

Tomorrow, World MS Day, more than 75 countries will join together to share the 1000 Faces of MS and raise global awareness. What do you plan to do?

FEDERAL FRIDAYS

Opponent of Obamacare says she’d be dead without it.  The Washington Post has a story about a woman who voted against Obama because she didn’t think the government should tell people what to do regarding health care coverage.  Now she’s among 62,000 uninsurables set to lose coverage if the Supreme Court throws out the Affordable Care Act and says today that she’d be dead without the Affordable Care Act.

File under ‘uh oh’.  The Congressional Budget Office (CBO) projects a recession in 2013 if lawmakers fail to prevent a “fiscal cliff” of scheduled tax increases and spending cuts at the end of the year. The CBO issued a report projecting that the marginal tax rates set to rise next year and the $109 billion in automatic spending cuts mandated by the Budget Control Act will cause gross domestic product to contract by 1.3% in early 2013, but would reduce the deficit by $607 billion in 2012 and 2013. This is the first time the CBO has forecast a recession resulting from the scheduled tax increases and spending cuts.

$1 Trillion . . . that’s real money!  A recent study found that if the Affordable Care Act would go away, insurers would lose $1 Trillion and of course, 32 million Americans would continue to go without health care coverage.  HHS is now collecting video stories about how the reform law changes people’s lives. You may also find this story about ‘sick in America’ polling of interest.

New York Drivers raise $20K for pediatric MS.  Through a state license plate program the Department of Motor Vehicles collected $20,000 for MS over the past few years. 

American Research Superiority Demise.  The group United for Medical Research and the Information Technology and Innovation Fund have produced a report that paints a bleak picture of medical research in the United States as compared to countries like China.  The Chinese government plans to invest $309 billion in biotechnology over the next five years, twice the amount the U.S. government will spend on biomedical research over that period if current trends hold.  The report calls on Congress to invest $40 billion for FY 2013 in order to keep our edge.  [Note – the National MS Society is currently advocating for $32 billion for the NIH as are other organizations.  We would support higher investments in research should that opportunity arise.]

Taxmaggedon.  Every few months there seems to be a newly-minted word to describe the end-of-the-world scenarios regarding our Federal budget.  Here’s a Washington Post story talking about how the economy is already reacting to upcoming budget battles post-election.  At least one Post editorial writer doesn’t buy it, and argues that the ‘fiscal cliff’ is a myth.  In related news it appears that the President and the Speaker are looking at another staredown over the debt limit . . . let’s just hope the result isn’t another downgrading in our nation’s credit.

Virtual Docs.  Insurers are warming to telemedicine and the practice of ‘virtual doctors’.  Interesting story out of Minnesota. The chair of the FCC recently announced that he will advocate to release part of the spectrum for wireless medical devices which is pretty significant.

Biosimilars & Patient Safety.  The National MS Society strongly supported the biosimilars language that passed as part of the Affordable Care Act.  This article which appeared in a UK publication talks about how patient safety must be the first priority of the FDA as it reviews biosimilars.

Oral Medications.  Multiple Sclerosis currently has one oral medication available with several more in the pipeline.  In recent years there have also been more oral chemotherapy drugs but the challenge with new oral medications is getting insurance coverage for them – the Washington Post highlights the issue.

Partisanship on overdrive?  Former Democratic Indiana Senator Evan Bayh had a commentary in the Chicago Tribune bemoaning the state of partisanship in America today as he reflected on the defeat of GOP Senator Richard Lugar, noting that we are more polarized than any time since the 1890s.

Expanding Coverage worldwide.  The Los Angeles Times reports that the United States is falling further behind in the worldwide push to expand health care coverage and notes the China is on track to complete a three-year, $124-billion initiative projected to cover more than 90% of the nation's residents.

Is Congress getting dumber?  Hey, that’s someone else’s headline, not mine so of course not intending any disrespect!  The Sunlight Foundation completes a periodic assessment of Members of Congress and based on how they speak, determine the education level at which they’re communicating.  This Congress is, on average, at a 10^th grade level – so for any of you with sophomore’s in high school, let them know they are now as conversant as the average Member of Congress.

Wellness Incentives.  Georgetown recently release a report about various wellness incentive programs in existence.

Think like an Investor.  There’s a very interesting interview in the New York Times about how health care costs could be restrained if we looked at health care like an investor looks at his/her investments.

Free National Park Passes.  The National Park Service is issuing free passes to people with  disabilities.  Learn more at the NPS.

Google Redistricting Map.  Google has all 2012 U.S. Congressional districts mapped out, except for Kansas because they haven’t finalized their new districts.

ADVOCACY IS PAYING OFF IN RESEARCH FUNDING

Thanks to the dedication of MS activists, research funding for MS is growing at the state and federal levels!

In March of this year to coincide with MS Awareness Week, “Mission Move” was unveiled in Illinois as the third lottery ticket benefiting the National MS Society. Since the passage of “Scratch Out MS” legislation in Illinois in October of 2007, $3.9 million has been raised by lottery tickets for MS research. This research funding is only possible because MS activists from the Society’s Greater Illinois and the Gateway Chapters supported the drafting and urged introduction of legislation and helped usher the bill to passage. These funds are supporting local research at the Rush University Medical Center and the University of Illinois at Chicago and are investigating important areas like repairing damage of demyelination and maintaining function and strength through physical therapy and similar means.

Earlier this month, the New York Department of Motor Vehicles released $20,000 for pediatric MS research funding. The funds have been collecting since 2004, when the New York state legislature passed legislation allowing the National MS Society to create a custom license plate with the National MS Society logo. The license plates create awareness for MS and the $25 annual fee supports pediatric MS research across New York. This is all the excellent result of creative advocacy of the Society’s Long Island, New York City—Southern New York, and Upstate New York Chapters. From the release of the license plate funds, the National MS Society awarded $10,000 to University at Buffalo’s Jacobs Neurological Institute (JNI) and Stony Brook University on Long Island. Both universities will use the funding to advance MS pediatric research. 

Check out the great press conference, where the Society, JNI, a 14-year-old pediatric patient, and New York State Senator Mark Grisanti (R-60) were on hand to celebrate the victory.

At the federal level, MS activists have helped secure over $20 million for MS funding in the Congressional Directed Medical Research Programs (CDMRP) since 2008. MS activists are currently urging Congress to continue funding MS research in the CDMRP and though we’re far from finished, just last week got the good news that the House has approved $5 million MS research. Since 2008, the National Institutes of Health has invested $604 million in MS research across the United States. Thank you, MS activists, at the state and federal level for your commitment to creating a world free of MS!  

MAY 30TH IS WORLD MS DAY--SHARE YOUR STORY TODAY!

World MS Day is the only global awareness raising campaign for Multiple Sclerosis (MS). Every year, the MS movement including the Society comes together to provide the public with information about MS and how it affects the lives of more than two million people around the world. World MS Day was launched in 2009 with over 200 events in 67 countries and has continued to grow every year. Last year saw activities taking place in more than 73 countries worldwide!

World MS Day is a week away. Check in the next few Wednesdays as we explore 1000 Faces of MS, which puts people with MS at the heart of our campaign. 1000 Faces of MS was created to bring together stories, messages and support for people living with and affected by MS. It is an opportunity to tell your story, to share it with strangers, as well as friends, and to join the global movement of people working to raise awareness of the disease.

This week, we share that symptoms of MS are unpredictable and vary from person to person. How do you manage your most unpredictable symptoms? Share your story at www.MSconnection.org or globally at www.worldMSday.org and share this video with your network to raise awareness.

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!