Friday, July 31, 2009

Disabled Veteran with MS Fights Eviction

Disabled U.S. veteran Mike Simmons lives with multiple sclerosis. Recently he faced eviction from the Norman Veterans Center in Oklahoma, where he has lived for five years. With the help of other activists, Mr. Simmons fought the eviction. He reached out to his elected officials and local news media to raise awareness for his situtation.

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

In the News: Biotech Bottleneck

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

In the News: Oregon Officials are "Disabled for a Day"

This KTVZ-TV News 21 video reports that seven perfectly able people were put to the test. "They are city officials, they work with police departments, they design neighborhoods, and they engineer structures." On this day, they navigated the streets in a wheelchair.

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

In the News: Volunteer Lawyer for MS and Chronic Diseases

After New Jersey anesthesiologist Patti Klein was diagnosed with multiple sclerosis in 2006, she and husband Martin Shenkman threw themselves into fundraising for the National MS Society. Along with their five sons (ages 17 to 24) from previous marriages, their Norfolk terrier Elvis and a group of friends dubbed the "Tax Team," the couple has raised $44,000 in MS walkathons. But Klein and Shenkman, both now 52, realized there was something even more productive he could do: provide free advice on special legal issues confronting those with MS and other chronic diseases.

This is an excerpt from a June article in Forbes. Read the full story here.

Thursday, July 23, 2009

Congressional Multiple Sclerosis Briefing

Several Members of Congress and Department of Veterans Affairs (VA) researcher spoke yesterday at a briefing on Capitol Hill to discuss multiple sclerosis, its impact and its prevalence. The well-attended briefing focused on the increased prevalence of the disease among U.S. veterans and the need for increased federal investment in MS research.

The National Multiple Sclerosis Society, in cooperation with Congressmen Russ Carnahan (MO) and Michael Burgess, M.D. (TX), co-chairs of the Congressional Multiple Sclerosis Caucus, hosted the briefing for Members of Congress and congressional staff. Congressmen Carnahan and Burgess both addressed the audience and spoke of the importance of this issue and their work in Congress to address MS.

Top priority issues discussed included the National MS and Parkinson’s Disease Registries Act
(H.R. 1362/S. 1273), that would create a national coordinated system to collect and analyze data on MS or Parkinson’s in the United States, and the pursuit of a $15 million appropriation specifically for MS research in the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense, which is funded under the annual Defense appropriations bill.

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
Clinical Nursing Director at the Department of Veterans Affairs MS Center of Excellence-East in Baltimore, shared her expertise on MS, discussed her experiences working with members of the U.S. military and their families living with this disease, and presented findings and theories about the increased risk of MS among U.S. combat veterans.

Wednesday, July 22, 2009

New MS Contribution on the Delaware Tax Form

People filling out Delaware state income tax forms next year will see a new option to make a donation to the Delaware Chapter of the National MS Society. The chapter’s MS Advocacy Group (right) — a collection of dedicated, motivated MS activists — helped pass legislation that added an MS contribution to the tax form. Delaware activists spent more than six months pursuing this legislation. They traveled frequently to the state capital and worked closely with state legislators to make it happen.
For more information, contact the Delaware Chapter.

Tuesday, July 21, 2009

Help Support Follow-On Biologics Legislation

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

United We Serve

The National MS Society is supporting the White House national volunteer initiative United We Serve.

Visit 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

Support Creating a National MS Registry

Ask your Senators and Representative to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273). The legislation, supported by our Congressional MS Caucus and the Bicameral Congressional Caucus on Parkinson's Disease, would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.

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.

NIH Releases New Stem Cell Guidelines

The National Institutes of Health (NIH) issued its final guidelines on stem cell research on Monday, July 6 pursuant to President Obama's March 9 Executive Order lifting the previous Administration's ban.

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.

Health Care Reform Update

It is an exciting time in Washington, DC as efforts around comprehensive health care reform continue to move forward in Congress on an aggressive timeline. Legislation is expected to move through Congress by the August recess.

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

In the News: Obama Sees Progress on Health Care Overhaul

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

In the News: Veterans with MS Gather in PA to Recognize Congressman Murtha

Study shows link between Gulf War service and MS
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 or by calling 1-800-FIGHT-MS.