Friday, July 31, 2009
View the news coverage here:
With help from the Oklahoma Chapter of the National MS Society, Mr. Simmons will remain in his current facility for now.
Wednesday, July 29, 2009
With a name like the Affordable Health Choices Act, you'd think the health-care reform bill that passed the Senate Health, Education, Labor and Pensions Committee this month would have made an effort to provide affordable health choices. But instead, the bill includes a provision that would create a 12-year market exclusivity period for brand-name biologic drugs. This would drive costs to consumers above even current levels, making the title little more than a mockery.
Biologic drugs, medical therapeutics derived through biotechnology techniques, are an important and ever-expanding field of prescription drug innovation... Prices for a single course of a brand-name biologic can soar into the tens of thousands of dollars, and this is not likely to change soon. Big pharmaceutical companies maintain that a lengthy exclusivity period in addition to the patent protection they already receive is necessary to drive continued innovation...
The Obama administration has favored a seven-year exclusivity period, characterized as a "generous compromise"...
There is still time for action. In the House, a pending amendment would offer a similar 12-year exclusion period, but there is an alternative: a bill put forth by Reps. Henry A. Waxman (D-Calif.) and Nathan Deal (R-Ga.) that would limit the exclusion period to five years. If Congress is serious about health-care reform, it must take another look at whether its legislation truly balances incentives for innovation against the need for price competition.This is an excerpt from a July 28 editorial in The Washington Post. Read the full article here.
Tuesday, July 28, 2009
The group that organized this disability awareness event included several individuals who live iwth multiple sclerosis. Carol Fulkerson, vice chair of the Oregon Chapter government relations committee, was a primary organizer. See Carol interviewed in this story. View it here.
Monday, July 27, 2009
This is an excerpt from a June article in Forbes. Read the full story here.
Thursday, July 23, 2009
Top priority issues discussed included the National MS and Parkinson’s Disease Registries Act
Congresswoman Mary Jo Kilroy (OH) is living with multiple sclerosis and was elected to her first term in the United States House of Representatives in 2008. At the briefing, Representative Kilroy spoke about how living with MS has impacted her life but not stopped her from pursuing her goals.
Emerging evidence shows a potential link between the incidence of multiple sclerosis and combat service. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." Dr. Heidi Maloni, an Adjunct Professor of Nursing at The Catholic University of America and Trinity University DC and the National
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Four of the six multiple sclerosis treatments are biologic drugs that can cost more than $30,000 per year. Biologic drugs are produced from living cell cultures rather than synthesized chemically as in traditional drugs. No generic (or follow-on versions) of biological therapies are available because the Food and Drug Administration (FDA) does not yet have the authority to review those drugs.
Congress must pass legislation in order to create a regulatory pathway for the FDA to approve safe and effective follow-on versions of biologic drugs. The House Energy and Commerce Committee has jurisdiction to help provide the FDA a pathway for the review and approval of follow-on biologics.Take Action!
- Check to see if your Member of Congress sits on the House Energy and Commerce Committee. Click here to view the full committee list.
- Call the Capitol switchboard at 1-800-828-0498 to be connected with your Member of Congress.
- Mention the Promoting Innovation and Access to Life-Saving Medicine Act (H.R. 1427) as an ideal model for providing the FDA with a competitive, science based generic biologics pathway.
- Ask them to leave the science of medicine in the hands of the FDA by providing a clear pathway free of regulatory hurdles.
For the estimated 400,000 Americans living with MS, this legislation brings the promise of safe, effective, affordable, and comparable biologic alternatives. As legislation moves forward, the Society will continue to advocate for a clear pathway that provides fair exclusivity to innovator companies.
The FDA does not have the authority to review applications for generic or follow-on alternatives to biologic drugs like other counties do. Because no generic versions of these drugs exist, the cost of biologic treatments can keep them out of reach for those who need them.
More affordable follow-on versions could provide safe alternative treatment options and help alleviate the cost burden on families living with chronic diseases. Additionally, legislation to introduce a competitive pathway for follow-on biologics can help spur new innovation within the medical research field.
Thursday, July 16, 2009
Visit www.serve.gov. Post an MS volunteer opportunity. Find an MS volunteer opportunity.
The White House will be promoting this effort all summer and will help draw a new stream of potential volunteers from across the country to the MS movement. Together, we can mobilize the millions.
Friday, July 10, 2009
Take Action Today! Click here send an e-mail to your legislators
The National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273) calls for establishing separate, permanent, and coordinated MS and Parkinson's disease registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) using an incremental, science-based approach. The last national study on incidence and prevalence rates on MS was conducted in 1975 - a lot has changed in 34 years. These registries will help determine incidence and prevalence rates and lay a foundation for better evaluating and understanding MS issues such as geographic clusters, variance in gender ratio, changes in health care practices, and changes in disease burden.
The MS and Parkinson's disease registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and results could be used to provide consistency and coordination in addressing treatment of these and other neurological diseases.
These new guidelines allow for federal funding of research using many existing stem cell lines that until now relied on private funding. In addition, the guidelines allow for research on future stem cell lines derived consistent with the ethical standards set in the guidelines. The Society is hopeful that the new stem cell guidelines will help advance the field of biomedical research and provide a solid ethical basis for the federal funding of promising stem cell research.
On June 9, Senators Ted Kennedy (MA) and Christopher Dodd (CT) announced the "Affordable Health Choices Act," which is currently being debated in the Health, Education, Labor and Pensions (HELP) Committee. Senator Max Baucus (MT) is leading a bi-partisan effort in the Finance Committee to create a separate but complementary budget neutral health care reform bill.
The House of Representatives is moving health care reform legislation through three committees that have jurisdiction over health issues: Energy and Commerce; Ways and Means; and, Education and Labor. These three committees, or Tri-Committee, released their united health care reform proposal on June 19.
Click here to learn more about the three key legislative proposals in Congress as reported by the Kaiser Family Foundation. Keep in mind these proposals change on a daily basis.
The National MS Society continues our advocacy efforts on health care reform. We are pushing for the inclusion of long-term care provisions, eliminating the Medicare 24 month disability waiting period, and language that would create a clear pathway, free of regulatory hurdles for the approval of generic biologic drugs.
Tuesday, July 7, 2009
President Barack Obama on Tuesday welcomed progress on health care overhaul as Senate Democrats and the administration closed in on a deal with hospitals to help pay for his proposed expansion of medical coverage to the uninsured.
Several officials said Monday that after talks involving the White House and Sen. Max Baucus, the chairman of the Senate Finance Committee, that hospitals were on the verge of agreeing to reduce their anticipated payments from Medicare and Medicaid by about $155 billion over a decade. The government could use the money to help provide health coverage to millions who now lack it....
Obama wants to sign a comprehensive bill in October that would reduce health costs and provide coverage to the nearly 50 million uninsured Americans. The next few weeks are critical in Congress as various committees craft legislation that Democrats hope the House and Senate can vote on before the August recess.
This is an excerpt from a July 7 article by the Associated Press. To read the full article, click here.
Monday, July 6, 2009
By Michael Kuhne, Daily American Correspondent
Our Town newspaper
Thursday, July 2, 2009
JOHNSTOWN — Local veterans and members of the National Multiple Sclerosis Society gathered in the Holiday Inn along Market Street Wednesday to recognize U.S. Rep. John Murtha for securing funds for medical research.
Approximately $5 million has been allocated to the society through the U.S. Department of Defense. Murtha secured the funding through the Congressionally Directed Medical Research Program.
“We’re here to thank Congressman Murtha and to talk about an important program in achieving funding for medical research,” said David Chatel, executive vice president of advocacy for the organization.
The funding has been the result of efforts by society members and veterans seeking more research to answer questions about the disease, board Chairman Robert Bernstein said.The primary purpose of the event is to understand what MS is, how it affects people and what the society is doing to stop it, he said.
The National Multiple Sclerosis Society attempted to secure an appropriation for research in 2007, but did not. The organization was later recognized by Congress and added to the Congressionally Directed Medical Research Program.
“We recognize the tremendous need for MS research,” Pittsburgh division board member Geoff Kelly said. “We understand our activists have a vision of a world without MS; make no mistake, we will get there.”
Tom Caulfield of the Veterans Leadership Program of Western Pennsylvania stated during his speech that many cases of multiple sclerosis among veterans are linked to combat service. This link is most clear among Gulf War veterans and could be due to a neurotoxin, said Caulfield, who donated $500 to the organization.
National Multiple Sclerosis Society vice president of federal government relations Shawn O’Neail said this could be because there is more data available on veterans from the Gulf War than Vietnam War veterans.
O’Neail said a study of Kuwaiti residents shows the number of multiple sclerosis cases doubling in the last six years, indicating a possible environmental trigger for MS.
The event closed with an award ceremony for Murtha’s contribution and a short speech from activist Angela Gorzelsky, who suffers from the disease. Murtha was unable to attend to the event. The award was accepted by the congressman’s district director, Mark Critz.
“Everything we can do comes from everybody out there,” Gorzelsky said. “It really will make a difference.”
More information about the National Multiple Sclerosis Society can be found online at www.nationalMSsociety.org/PAX or by calling 1-800-FIGHT-MS.