Society Holds Briefing on Capitol Hill Calling for More Medical Research Funding for Progressive MS
September 17, 2013
The National Multiple Sclerosis Society hosted a briefing on Progressive Multiple Sclerosis (MS) on Capitol Hill September 12, 2013, titled: “Severe, But Untreatable: Why More Medical Research is Needed for Progressive MS.” To kick off the briefing, Congressional MS Caucus Co-chairs Representatives Michael Burgess, MD (TX-26) and Chris Van Hollen (MD-8) thanked everyone for coming and expressed their commitment to continuing to fund medical research to better understand and treat MS. Over 40 bipartisan House and Senate offices attended the briefing, as well as numerous partner organizations.
Speakers at the Capitol Hill briefing were President and CEO of the National MS Society Cyndi Zagieboylo; the Society’s Chief Research Officer Tim Coetzee, PhD; Executive Vice President of Advocacy Bari Talente; Professor of Neurology and Director of the Johns Hopkins Multiple Sclerosis Center Peter Calabresi, MD; and Karen Knable Jackson, an MS Activist and person living with Primary Progressive MS. Speakers educated the audience of Congressional staff about the significant progress that has been made the past twenty years in terms of understanding and treating MS. Speakers credited these advances largely to medical research funding provided by the National Institutes of Health (NIH) and the National MS Society. Every year, the NIH funds around $115 million in MS research and the Society funded independently or in partnership with the NIH $43.2 million in MS research in 2012. While celebrating this progress, speakers went on to highlight a significant void that exists: that people living with Progressive MS still have no treatments available to them.
Karen Knable Jackson is such a person with Progressive MS. Karen was initially diagnosed with Relapsing Remitting MS in February 1996, only to be re-diagnosed with Primary Progressive MS in 2003 as she attempted to enroll in a clinical trial. Dr. Calabresi noted that “existing disease modifying therapies are effective only for some people,” and that there are “no approved therapies for progressive MS.” Karen said that because she has Primary Progressive MS, she must live not only with common concerns of “raising children,” and “buying a home” but also not knowing how long she will be able to continue to work and whether she will end up in a nursing home.
At the Capitol Hill briefing, the Society repeatedly reiterated its commitment to increase its investment in MS research, which is part of the organization’s campaign to stop disease progression, restore function and end MS forever. The Society also called on lawmakers to increase funding for the NIH. Karen told the audience, “I sit before you to put a face to Primary Progressive MS but also to show that what is decided here on Capitol Hill has a direct effect on real people.” For her, she said, “participating in [clinical] trials offers hope for which there is no price tag.”
The Society holds at least one briefing on Capitol Hill a year to educate members of Congress and their staff about MS and typically partners with other organizations on numerous other Hill briefings.