Tuesday, November 27, 2007

MS Question Could be on YouTube Debate

Karen Barron from South Carolina, who has lived with multiple sclerosis for 32 years, submitted her question for the Presidential YouTube Debate tonight. It requests support for federal funding for stem cell research. View Karen's question here.

Click here for more information on the CNN debate tonight.

Monday, November 26, 2007

Insurance Stops Covering Intravenous Immune Treatment

After three and a half years on intravenous immune globulin, or IVIG, to treat her multiple sclerosis, insurance is no longer paying for Simone Biase's therapy.

"It's costing about $4,000 dollars a month," said the IVIG patient.

She's paying for it herself for now while appealing her insurance company's decision and trying to stretch her monthly treatments. Many insurance companies are clamping down on covering the costly therapy ... with devastating results for patients.

Click here to read or view this complete news story.

Thursday, November 15, 2007

MS Activism Success — New Defense Funding Available for MS Research

Your MS activism has paid off big. For the first time ever, multiple sclerosis research will be eligible for funding under the Department of Defense (DoD). Thank you.

Congress has listed MS as a research area eligible for funding under the DoD's Peer Reviewed Medical Research Programs (PRMRP). PRMRP is a sister program to the Congressionally Directed Medical Research Program (CDMRP) under DoD that we've been working toward all year. This program has a budget of $50 million that can only be spent on research areas that Congress directs. It is a new and untapped funding source for MS research, and will complement the work that NIH is doing to move us closer to a world free of MS.

The PRMRP was established in 1999 and continues to fulfill its Congressional intent by funding research of clear scientific merit with relevance to the health of the military and the American public. PRMRP Congressional appropriations have totaled $344.5 million through 2006 and funded 247 projects in more than 60 topic areas.

All year, you have advocated to Congress to provide Defense funding for MS research. While this program is not the exact line item we asked for, it is a significant gain in our effort expand research funding for MS in the federal arena.

The Society continues to carefully watch emerging evidence from Veterans' Affairs researchers and others that might point to an increased risk of MS among combat veterans. More research must be conducted to better understand a potential environmental trigger.

The Defense Appropriations (H.R. 3222) funding bill was signed by the President on November 13, 2007. As the program is implemented, we will let you know how researchers and others can apply for this funding. Thank you again for all your hard work and MS activism on this issue. We will need your voice again next year.

Wednesday, November 14, 2007

Make a Call Today to Help Fund MS Research and Respite Care

Unfortunately, President Bush vetoed the FY 2008 Labor-HHS-Education Appropriations bill (H.R. 3043) on Tuesday. Thank you to all MS activists for taking action on this important issue.

Now, Congress will attempt to override the president's veto. Take a minute today to call your members of Congress. Encourage them to override the president's veto of H.R. 3043 and support funding for critical health programs, including multiple sclerosis research and respite care. Call the Capitol switchboard at 1-800-828-0498 and ask for your Representative and both Senators.

The president's action against the health and education funding was not surprising, as he had repeatedly vowed to veto the bill. But the result is still disappointing. This bill would have provided a 3.1% increase for the National Institutes of Health (NIH), including MS research, and a 6% increase for the Centers for Disease Control and Prevention (CDC).

In addition, Congress had incorporated nearly $4 million in funding in the bill for the development of a comprehensive MS center at West Virginia University in Morgantown, W.Va. And it included $2 million for state respite care grants authorized by the Lifespan Respite Care Act (which MS activists helped pass last year).

Call your legislators today. We will continue to keep you updated on the results of the override attempt.

Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy

Monday, November 12, 2007

MS Marathoner is Inspiration for MS Activists

Woman Living with MS is Last to Finish NYC Marathon

When the elite athletes passed her, Zoe Koplowitz kept walking. When the hard-core runners went by, she kept walking. And finally, when every other one of the thousands of people in the race had finished, she kept walking.

Koplowitz, 59, crossed the finish line and completed her 20th New York City Marathon on Monday — just under 29 hours after she had started. Wearing braces on her back and knee and using purple-painted crutches, Koplowitz, who suffers from multiple sclerosis and diabetes, walked the entire route, accompanied by supporters.

This is an excerpt from a November 5, 2007, Associated Press article. To read the complete story on Zoe Koplowitz's victory, click here.

President Threatens to Veto Healthcare Funding for NIH, MS Research

President Bush is planning to veto a bill that includes critical healthcare funding for MS research at the National Institutes of Health and for a new comprehensive MS center. Click here to send President Bush a quick email. Or, if you prefer, you can call the White House switchboard at (202) 456-1414 to deliver your message.
  • Ask the president not to veto the Labor-HHS-Education bill (H.R. 3043) and to approve funding for multiple sclerosis research.
  • Tell the president that this bill brings too much hope to people living with MS and to caregivers to justify a veto.
About the Legislation
Your MS activism has helped bring more recognition for MS in the FY 2008 Labor-HHS-Education spending bill (known has Labor-HHS). Congress has incorporated nearly $4 million in funding in the bill for the development of a multiple sclerosis and neurodegenerative disease research center at West Virginia University in Morgantown, W.Va. This first comprehensive center for MS research and care in West Virginia holds great promise for people living with MS not only in the state but nationwide.

In addition to this specific funding for MS, the Labor-HHS bill includes a 3.1% increase for the NIH, a 6% increase for the Centers for Disease Control and Prevention (CDC), and $2 million for state respite care grants authorized by the Lifespan Respite Care Act (which MS activists helped pass last year).

Ask President Bush not to veto this bill and to support important funding increases for NIH and MS research.

Thursday, November 8, 2007

November is National Caregivers Month

November is National Caregivers Month, set aside to thank, support, educate, and celebrate more than 50 million family caregivers across the country. Get information and resources for those caring for someone living with MS.

Tuesday, November 6, 2007

Breaking News on NIH, MS Research Funding

Congress Could Send Funding Bill to President on Veterans Day

Breaking News: Congress is moving quickly on the fiscal year 2008 Labor, Health and Human Services and Education (Labor-HHS) appropriations bill (H.R. 3043) that funds the NIH, CDC, SSA, and other programs. You can help gain support for increased funding for MS research. The best chance of securing increased funds is to achieve veto-proof votes for the conference report in both the House and the Senate. We understand that the House intends to vote on the conference report later today.

Call and ask for their support of H.R. 3043 and a 3.1 percent increase for NIH in the Labor-HHS conference report. This bill includes important funding increases for NIH, the Centers for Disease Control and Prevention, and the Social Security Administration. It also will be a critical source of funding for multiple sclerosis research.

Senate and House Conferees Agree on Labor-HHS Bill

In a victory for medical research, a conference committee of House and Senate members on November 1 approved $29.7 billion for NIH (the leading source of research funding for MS) for FY 2008. That is an increase of $1.1 billion (or 3.1%) over the FY 2007 level. The Labor-HHS appropriation bill added $100 million to the NIH budget beyond what the Senate passed on October 23. This is major progress considering the President had proposed cuts to NIH funding. Thank you. MS activists have been taking action and encouraging support from your legislators on this issue from the beginning.

Funding for SSA
Overall, the Labor-HHS appropriation bill provides $150.7 billion in discretionary spending for education, health, labor and other agencies, such as SSA. Many disability advocacy groups have been working to address the problems associated with the backlog of disability claims and appeals at SSA. Those claims must be approved prior to receiving Social Security Disability Insurance (SSDI) cash benefits. Many people living with MS are eligible for SSDI and have endured the arduous process. To help alleviate this backlog, negotiators provided a $576 million increase (or 6.2%) for administrative costs to SSA.

Stem Cell Language Removed
The Senate Labor-HHS bill originally included language that would have expanded funding for embryonic stem cell research. However, Senators Tom Harkin (IA) and Arlen Specter (PA) removed this language in an effort to compromise. The Senate passed their bill on October 23 by a vote of 75 - 19, which is enough to override a presidential veto.

The Future of the Labor-HHS Bill

Now that the Senate and House worked out their differences, the Labor-HHS conference report goes back to each chamber for approval. In addition to the funding increases, the conference report packaged the Labor-HHS appropriations bill (H.R. 3043) with the Military Construction-Veterans Affairs appropriations bill (H.R. 2642) to make one large spending bill. This new bill is what the House and Senate will be voting on, and if it passes both chambers, it will be sent to the President. Click above to take action.

The future of this combined spending bill is uncertain. President Bush maintains that he will veto any spending bill that allocates more than he requested back in February. To override his veto, the Senate and the House must both pass the conference report with a veto-proof majority. It is anticipated that the bill will be put before the President on Veterans Day.

Follow On Biologics on Hold Until 2008

Members of the House Energy and Commerce Subcommittee on Health met on October 31 to discuss the future of the follow on (aka generic) biologics legislation (H.R. 1038). Many people living with MS and other diseases depend on biological drugs to sustain or improve their quality of life. This legislation would establish a pathway for the FDA to approve safe, effective, affordable, and comparable versions of biologic therapies for MS and other diseases. There is pressure on the House Energy and Commerce Committee to take action on this issue this year. However, the committee decided to push off working on the bill until 2008.

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 synthetically exact copies of the brand name original, based on a precise chemical composition. Follow on, or generic, versions of biologic drugs, on the other hand, would need to allow for slight 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. For MS, biologic therapies include Avonex, Betaseron, Rebif, and Tysabri.

Thank you for being an MS activist. Join the movement at http://capwiz.com/nmss/utr/0/?u=http%3A%2F%2Fwww.nationalmssociety.org%2Fadvocacy

Monday, November 5, 2007

MS and Your Career webcast

Thank you to everyone who participated in our live webcast event "MS and Your Career" on Saturday.

People living with MS in their 20s and 30s from across the country connected with others for a candid conversation about how to integrate life, relationships, and MS.
A recorded version and transcript of this webcast will be available soon. Check back at http://www.realtalkrealanswers.com/

Friday, November 2, 2007

Tomorrow - Saturday - Live webcast for young people living with MS

Join us tomorrow (Saturday, November 3) for our live webcast event, "MS and Your Career."

At 10am pacific, visit www.realtalkrealanswers.com to connect with others living with MS in their 20s and 30s from across the country for a candid conversation about how to integrate your life, your relationships, and your MS. (note: link to webcast will be available on this page a few hours prior to the event)

Simply log on and you will be able to submit questions in "real time" to be answered during the panel discussion. www.realtalkrealanswers.com