Federal Focus

2008 Public Policy Conference Review

MS Activists Take to Capitol Hill

The National Multiple Sclerosis Society 2008 Public Policy Conference was a great success! On May 8, more than 400 MS Activists took to Capitol Hill and spoke with their Members of Congress about three key issues of importance to the MS Community. Speaking directly with your legislator and their staff is one of the most effective ways to advocate, educate, and have your message heard.

These 400 individuals, compromised of volunteers and Society staff, represented all 50 states in the U.S. Their advocacy efforts will help shape issues that impact the lives of people living with MS and their families. The three key policy issues and action items were discussed on May 8th were:

• Urging Representatives to co-sponsor the brand new National MS Disease Registry Act (H.R. 5874), which will establish a registry within the Agency for Toxic Substance and Disease Registry (ATSDR) to help determine an accurate measure of the incidence and prevalence of MS in the United States;

• Supporting federal investment in MS research through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD); and,

• Asking Senators and Representatives to co-sponsor the Ending the Medicare Disability Period Act (S. 2102/H.R. 154), which would phase out, over 10 years, the Medicare 24 month disability waiting period.

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Society Chairman Testifies Before Congress in Support of Stem Cell Research

On May 8th, Weyman Johnson, the Society's Chairman of the National Board of Directors, provided testimony to Congress in support of embryonic stem cell research. Weyman lives with MS and is a long time supporter of MS research and embryonic stem cell research.

Weyman's testimony was particularly powerful on a day when 400 other MS activists were in offices across Capitol Hill influencing public policy decisions. Weyman's testimony included the following statement: "Embryonic stem cell research remains one of the most promising avenues of research to cure diseases and end suffering. I am not a scientist, but I am an observer of science. And I know that science is a matter that requires some patience. That's why we must not abandon the important work done to date with embryonic stem cell lines. The research must continue. So we can improve the lives of people with chronic diseases and conditions. So we can improve the lives of families for generations to come. For my grandchildren and for yours."

To learn more about the hearing you can visit the Energy and Commerce committee's website at http://energycommerce.house.gov/cmte_mtgs/110-he-hrg.050808.StemCell.shtml.

Stem cell research will likely be a key issue in the next Congress, and the Society will be active in the promotion of legislation to support more research.

MS Answers

Treatment

Dr. Schapiro

Clinical Professor of Neurology
View BIO

Q :
My daughter in-law has just been diagnosed with MS. She has been treated with a 5 day course of high dose oral Prednisone (1200 mg) daily and has no relief of symptoms since completion 5 days ago. What is the effective time frame for steroids? What is the usual recommended next course of treatment?
A :
This is the kind of question that cannot easily be answered without taking a proper history and doing a proper examination. It is a specific medical question for a specific patient. Steroids are anti-inflammatory medications and take swelling down. It may take a week or two to see if the effect is not there. Often they work quickly but if they have done nothing after two weeks, I would assume that they are not going to. The next course of treatment depends on so many variables that are patient specific but rehabilitation should not be ignored. Obviously immune modulation and chemotherapy are options.
5/15/2008 7:14:44 PM
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DISCLAIMER: Please be aware that this information does not necessarily represent the opinion of the MS Society of Canada, and is not intended as medical advice. For specific advice and opinion, always consult a physician.
© 2008 Multiple Sclerosis Society of Canada | www.mssociety.ca

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=1772

The Scientist : NewsBlog :First embryonic stem cell trial stalled

Posted by Andrea Gawrylewski

[Entry posted at 15th May 2008 03:41 PM GMT]

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The FDA has delayed approval of an application for the first human embryonic stem cell clinical trial by Geron Corporation, the company announced yesterday.
Geron's compound, GRNOPC1, is a cell-based therapy to treat spinal cord injury. Yesterday, the FDA told Geron verbally that they were placing the Investigational New Drug submission of the treatment under a clinical hold. The company is awaiting a formal letter.
Thomas Okarma, Geron's president and chief executive officer, said in a press release: "We are disappointed with this action given the interactions we had with the FDA over four years leading to the filing, and the breadth and depth of the submission, some 21,000 pages, predicated on those discussions with the agency."
Ren Benjamin, an analyst with Rodman & Renshaw, told Bloomberg News that the FDA's decision was not surprising. The agency held a meeting last month to consider what guidelines to recommend for sponsors developing human embryonic stem cell-based therapies. Celia Witton, spokesperson for the FDA, said at that meeting that the agency had to process a tremendous amount of information before they can decide how to properly regulate trials for new therapies.

http://www.the-scientist.com/templates/trackable/display/blog.jsp?type=blog&o_url=blog/display/54647&id=54647
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