Tuesday, June 26, 2007

MS Issue Updates and Ways to Take Action

Influence MS Research Funding Over Fourth of July
The opportunity to secure a $15 million Defense appropriation for multiple sclerosis (MS) research through the Congressionally Directed Medical Research Programs (CDMRP) is expected to be decided in late July. One of the last and best ways to make an impact on this bill is when Congress is home for the Fourth of July recess.

Here is what you can do to support funding for MS research. Schedule a meeting with your senators or representative in their local office any time during July 1 - 9. Just call and ask for an appointment to talk about funding for MS research. Click here to find your legislators' district office contact information.
Legislators are increasingly joining us in support of MS research through this new funding stream. Research into possible environmental triggers of MS could lead to a better understanding of the disease and move us closer to a world free of MS. Click here for more background on this issue.

Senate is Debating Generic Biologics Issue
The issue of generic biologic drugs, also called follow-on biologics, has been gaining national attention recently. The Senate currently is debating legislation that would allow for a regulatory pathway for safe, effective, affordable, and comparable versions of biologic drugs — the Access to Lifesaving Medicine Act of 2007 (S. 623 and H.R. 1038).

Biologic (also known as biological or biotech) drugs are produced from living cell cultures rather than synthesized chemically. The generic drugs that are currently available are all synthetically exact copies of the brand name original, based on a precise chemical composition. Generic versions of biologic drugs, on the other hand, would need to allow for nuances in the cell cultures while meeting certain parameters that are strict enough to ensure they are just as safe and effective as the originals.

This issue is especially timely. To support a pathway for generic biologic drugs, call your senators today. Call 1-800-828-0498 and ask for your senator. You can use the following bullets to help with your conversation:
  • Support a workable pathway for follow-on biologic medicines like the one that is outlined in the Access to Lifesaving Medicine Act.

  • A drug is not effective if it is not affordable.

  • Provide a clear framework for FDA to use its scientific expertise to approve safe and comparable products — a framework free of the need for additional congressional action or unnecessary potholes.

  • Do not delay patient access to lower-cost treatments that are safe and effective. At the same time, provide fair exclusivity to innovator brand companies.
Read the news article about of one Washington state man who shares his family's story of multiple sclerosis, the cost of fighting it, and the need for more affordable versions of biologic drugs for MS and other diseases.

Small Increases to NIH Funding, but Respite Care Left Out
Both the House and Senate Appropriations committees have indicated a slight funding increase for NIH, based on their recently reported Labor-HHS funding bills. The House’s Labor-HHS bill allocated a 1.9% increase to NIH, while the Senate version gave a 2.8% increase. Even though the Senate bill is a greater percent increase, the overall funding allocated is actually $1.9 billion less than the House version. No increase is guaranteed given the current fiscal climate, so support for NIH funding is still needed. Click here and scroll down to send a quick e-mail to your representative on this issue.

Unfortunately, neither of those proposed increases includes funding for the state grants promised through the Lifespan Respite Care Act that passed Congress last year. However, the House is expected to propose an amendment with a funding request of $40 million for this purpose in the next few weeks. We will continue to keep you updated.

President Vetoes Stem Cell Bill … Again
On June 20, President Bush vetoed the Stem Cell Research Enhancement Act (S. 5). In addition to the veto, Bush issued an executive order directing the NIH to continue pursuing alternate forms of stem cell research. This order is not useful however as NIH already has been conducting this type of research for more than 20 years.

The stem cell bill now will head back to the Senate for an override attempt. The Senate is expected to have at least 66 of the 67 votes required to override the veto; while the House will be many votes short. In an alternate attempt to successfully enact embryonic stem cell research legislation, the Senate Appropriations Committee has attached a similar version of S. 5 to the Labor-HHS funding bill. This will now head to the Senate floor for a vote. As it progresses, we will notify you of any MS activism that could help this cause.

Monday, June 25, 2007

Family Endures MS and Expense of Fighting It

The U.S. Senate currently is debating legislation that would allow for a regulatory pathway for safe, effective, affordable, and comparable alternatives to biologic drugs. This issue is gaining attention nationwide. A Washington state man tells his family's story of multiple sclerosis, the expense of fighting it, and the need for more affordable versions of biologic drugs for MS and other diseases. Read the complete story here.

Friday, June 8, 2007

MS Activists Participate in Stem Cell Event

MS activists nationwide have been leaders in speaking out in support of expanded stem cell research. MS activists who joined in the stem cell event yesterday in the U.S. Capitol included (in back from left to right) Sharon Dodge, Rob Engel, Bev Thomas, Yvonne Brown, Janet Abrams, Philip Fryer, Karen Jackson, and David Powell. These MS activists represented the Maryland and National Capital chapters.

Stem Cell Bill Passes, Moves to President's Desk

The House of Representatives passed the Stem Cell Research Enhancement Act (S. 5) yesterday with a bipartisan vote of 247 to 176. Thanks to the thousands of MS activists who contacted your representatives in Congress recently in support of this issue. Several MS activists participated in an event lauding the passage of the bill in the U.S. Capitol Building following the vote. They joined Speaker of the House Nancy Pelosi (CA) and Senate Majority Leader Harry Reid (NV), along with House champions Mike Castle (DE), Dianne DeGette (CO), and Jim Langevin (RI).

Photo right: Senator Tom Harkin (IA), Senate sponsor of the stem cell bill, speaks with MS activists before the event, including Rob Engel upper left and Janet Abrams seated.

The bill is now on its way to the president’s desk, but he has vowed to veto any legislation lifting his ban on federal funding for additional embryonic stem cell lines. If a veto occurs, the bill will return to the Congressional chamber of origin — in this case the Senate — for an override attempt. A two-thirds majority is necessary to override a presidential veto. While the votes are close, it is possible that the Senate will have the 67 votes necessary. We will keep all MS activists up to date as this progresses in the coming week.

Photo left: Senator Harry Reid (NV) comments on the bill alongside MS activists and representatives from other patient groups.

Monday, June 4, 2007

In the News: Gulf War Veteran Tells Story of MS; Symptoms Could be Linked to Combat Service

Bob Wolz blamed dehydration and the blazing sun for his mysterious blackouts during the first Gulf War. But he had no idea what to think when his left arm and leg got weaker and thinner than his right limbs. The problems continued after he returned home, and last year, two years after retiring from the military, doctors diagnosed Wolz with multiple sclerosis — which the Army veteran now considers a lingering wound from his first tour of duty.

This is an excerpt from a front-page article in the Sunday issue of the Louisville Courier-Journal by reporter Laura Ungar. Click here to read the entire story. Congress currently is considering a $15 million Defense appropriation that would help fund related research into the potential triggers and treatments of MS.