You Can Help Secure $15 million for MS Research

Twenty seven members of the Senate have signed on in support of an increased investment of $15 million for multiple sclerosis research. Now the Senate Defense Appropriations Subcommittee will decide whether MS will receive this funding. One of your Senators serves on this committee, and it's important that they hear from people like you who support this effort. To find out which one, click here.

Take Action Today

• Call your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
• Make an appointment to visit with your Representative or their staff while they are home in your district during the June 30-July 4 recess.
• Attend a community or town hall meeting. Call the district office for a schedule.
  

For your Representative's contact information, visit http://www.house.gov/.

You can use these talking points and background when you speak with your Senator:

• As a member of the SenateAppropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs.
• 27 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
• [Share how MS has impacted you personally]
• Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
  More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
  

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

You Can Help Secure $15 million for MS Research

More than 60 members of the House of Representatives have signed on in support of an increased investment of $15 million for multiple sclerosis research. Now the House Defense Appropriations Subcommittee will decide whether MS will receive this funding. If your Representative serves on this committee, it's important that they hear from people like you who support this effort. Click here to check.

Take Action Today

• Call your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
• Make an appointment to visit with your Representative or their staff while they are home in your district during the June 30-July 4 recess.
• Attend a community or town hall meeting. Call the district office for a schedule.
  

For your Representative's contact information, visit www.house.gov.

You can use these talking points and background when you speak with your member of Congress:

• As a member of the House Appropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs.
• 63 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
• [Share how MS has impacted you personally]
• Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
• More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.

House Passes Landmark Disability Rights Bill

The ADA Amendments Act of 2008 overwhelmingly passed the House on June 25 by vote of 402-17. This is a a historic move that aims to maintain the original intent of the Americans with Disabilities Act.

Congressman Steny H. Hoyer (D-MD) spoke at a press conference yesterday (see photo) in support of the bill. He was backed by people living with disabilities, advocates, members of the employer community, and other congressional leaders. Hoyer was the lead sponsor of the original ADA, the major civil rights movement that became law in 1990.

Court decisions over the past decade have excluded individuals who should have been covered under the ADA. For people living with multiple sclerosis, medications and medical devices can give the perception that someone is fully functional. That can lead some employers to erroneously deny them their ADA protections. This bill helps to preserve those protections for poeple living with disabilities.

Read New York Times coverage of this legislation.

National Call-In Day to Support the ADA Amendments Act of 2008

Join disability advocates from across the country today for a National Call-In Day urging your Representative to support the ADA Amendments Act of 2008.

Call 1-800-828-0498 to contact the Capitol Switchboard, who will connect you with your Representative's office.

When you talk with your Representative, ask them to help restore protections for people with disabilities by voting in favor of the ADA Amendments Act when the bill comes to the House floor this week. The ADA Amendments Act of 2008 will preserve protections under the Americans with Disabilities Act (ADA) and reverse restrictive judicial decisions that have left people with multiple sclerosis unprotected from job discrimination.

In addition to the Call-In day, please send your Representative a quick e-mail. Click here and scroll down to take action.

Talking Points for Call-In

• I urge you to vote in favor of the ADA Amendments Act of 2008 as reported out of committee with no amendments when the bill comes to the floor the week of June 23.
• The ADA Amendments Act will help restore protections for people with disabilities by striking the right balance between protections for people with disabilities and the obligations and requirements of employers.
• This bill specifically overturns Supreme Court decisions that have caused too many people with disabilities to lose important protections granted under the ADA.
• The bill clarifies that Congress intended the ADA's coverage to be broad, to cover anyone who faces unfair discrimination because of a disability.
• In addition, the bill clarifies the current requirement that an impairment must substantially limit a major life activity in order to be considered a disability, and it prohibits consideration of mitigating measures such as disease modifying therapies in the determination of whether an individual has a disability.
  

Background
On June 18, the House Judiciary and Education & Labor Committees overwhelmingly supported the ADA Amendments Act. This bill is the product of meaningful negotiations and discussions between the disability community, business and employer groups, Members of Congress, and congressional staff. The National Multiple Sclerosis Society fully supports this negotiated bill.

Since its enactment in 1990, the ADA has transformed our nation. One goal of the ADA is to protect people with disabilities from discrimination at work and in public life. Unfortunately, court decisions over the last decade excluded individuals, who should have been covered under the ADA. These judicial restrictions block people with conditions such as multiple sclerosis, epilepsy, diabetes, cancer, heart disease and bipolar disorder from seeking protections against employment discrimination under the ADA.

Please join our efforts to restore protections under the ADA for people with multiple sclerosis. Remember to join the National Call-In Day on Tuesday, June 24 (call 1-800-828-0498) and send an e-mail to your Representative asking them to support the ADA Amendments Act of 2008.

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

In the News: ADA Restoration Act

Two groups that have been at odds — people with disabilities and American businesses — have put aside their differences to design a bill that now seems on an improbable fast track through Congress.

Advocates for people with disabilities say that recent court rulings have made the employment protections of the disability civil rights law almost meaningless, especially to people with diabetes, epilepsy, cancer, and mental illness ... the result is that two House committees are taking up the ADA Restoration Act. The bill's backers hope to give President Bush something he can sign by the end of July.

This is an excerpt from a June 18 story on NPR by Joseph Shapiro. Read more or listen to the radio clip here.

Congressman Russ Carnahan (MO) Recognizes 100-Member Congressional MS Caucus

Congressman Carnahan Press Release

Congressman Russ Carnahan one of the founding members of the MS (Multiple Sclerosis) Caucus, is pleased to announce that more than a hundred members have signed onto the group since its inception last year.

"It was a privilege to establish the MS Congressional Caucus along with my colleague Dr. Michael Burgess of Texas. I’m pleased to announce the Caucus now has surpassed 100 Members of Congress," said Carnahan.

"A member of my staff inspired me to get more involved with fighting MS, and I am encouraged to see other Members of Congress are making it a priority as well," said Congressman Michael C. Burgess, M.D.

Last year, the Defense Appropriations bill made MS eligible for research dollars under the Peer Reviewed Medical Research Programs for the first time ever. While this was an important step, Congressman Carnahan and his colleagues believe that a specific program for MS research should be designated under the Congressionally Directed Medical Research Programs (CDMRP).Congressman Carnahan led the effort to request $15 million for MS research at the CDMRP again this year.

A multi-Member letter of support was submitted to the Appropriations Committee with 63 signatories earlier this year.Carnahan became familiar with MS after a family member was inflicted with the disease and was encouraged to become more involved in combating the disease by the active Gateway Area Chapter of the National MS Society. Read more.

In the News: Plight of the Underinsured

The following editorial ran in today's New York Times...


It is well known, by now, that almost 50 million Americans lacked health insurance for all or part of last year. What is less well known is that 25 million Americans who did have health insurance often found it pitifully inadequate when a medical crisis hit. They were only marginally better off than those who had no coverage at all.

That is the disturbing finding of a survey by the Commonwealth Fund, a private foundation specializing in health policy research, that was published by the journal Health Affairs. The survey found that some 22 million adults with health coverage all year still spent a large chunk of their incomes — at least 10 percent for middle-class families — for out-of-pocket medical expenses. Another 3.4 million were saddled with high deductibles that would cause financial problems if they became ill.

Conservative health theorists and insurance industry leaders have long argued that the best way to slow soaring health care costs is to force people to pay a significant share of the bill so that they will buy medical services more judiciously, and sparingly. But as out-of-pocket expenses and deductibles have risen, many families are instead postponing or forgoing treatment.
Many of those surveyed had put off seeing a doctor when sick, failed to fill prescriptions or skipped tests, treatments and preventive care. About half had difficulty paying their bills; many took out loans, mortgages or credit card debt to pay them.

Middle-income families have increasingly been hit hard. The rates of underinsurance among families earning more than $40,000 a year nearly tripled from 2003 to 2007. Most worked for small businesses with poor coverage or had to buy costly, bare-bones individual policies on the private market. A typical family might have to cope with rising premiums, high deductibles, benefit limits that exclude or cap treatments and substantial co-payments for each service.
Cutting health care costs and reducing the number of uninsured Americans are critical priorities for this country. But the health care debate needs a wider focus to also address the plight of the underinsured. Insurance plans that discourage needed care will only cause greater sickness and higher costs down the road.

In the News: Two Approaches to Health Care

The Kaiser Family Foundation reported today that presumptive Democratic presidential nominee Sen. Barack Obama (Ill.) and presumptive Republican presidential nominee Sen. John McCain (Ariz.) have "sharply different approaches" to health care and other issues. Read more in the Washington Post.

MS Activists Go to Washington

In early May, thousands of MS activists visited and contacted their legislators in Washington about the need to increase federal investment in MS research.

On May 8, 2008, MS activists flooded Capitol Hill with visits and emails, urging Congress to secure $15 million in federal funds for MS research. More than 400 MS activists representing every state traveled to Washington, DC, to help shape this and other policies that impact the lives of people living with MS. More than 37,000 activists — and many of you — supported those on the Hill by sending emails to your legislators.

This increased funding would help to provide the resources necessary to further identify and pursue environmental risks, new treatments, and a cure for the more than 28,000 U.S. veterans diagnosed with MS and more than 400,000 people living with the disease nationwide. Find out more.

U.S. Veteran Living with MS Testifies Before Congress

Story Suggests Gulf War Service, Multiple Sclerosis Could be Linked

U.S. veteran Bob Wolz from Kentucky believes his multiple sclerosis diagnosis could be linked to his military service. He shared his story in testimony before the Senate Appropriations Committee, Subcommittee on Defense, today. Watch the video here (Real Player).

Following is an excerpt from his testimony…

I am a retired Sergeant First Class in the U.S. Army. I served more than 20 years as a Chemical, Biological, Radiological, and Nuclear Specialist, with two tours in Korea and Germany, the Gulf War, Operation Iraqi Freedom, and various stateside units. I believe my MS is a lingering wound from my tour of duty in the Gulf War.

My resulting disease and disabilities have been deemed service connected by the VA. I served with the First Armored Division, 69th Chemical Company during Operation Desert Shield and Operation Desert Storm. In March of 1991, we were in Kuwait living and working within the dark clouds of the burning Kuwaiti oil wells. Additionally, I was located within the downwind hazard plume from the Khamisiyah Pit demolition that contained sarin and cyclosarin…

One day after a mission, I showered and attempted to trim my fingernails. I was a soldier, but my left hand could not squeeze the clippers to accomplish this simple task … After numerous tests, my MRI revealed a 19 millimeter lesion on my C4 vertebrae; 1 millimeter on my C1 vertebrae; and numerous lesions scattered on both sides of my brain. In 2006, I was diagnosed with multiple sclerosis.

Thousands of veterans could share similar stories. Recent studies confirm that combat veterans have an increased risk of developing MS. More than 28,000 veterans with MS are currently receiving VA care.



Congress currently is looking at a Defense appropriation that would provide $15 million for MS research through the Congressionally Directed Medical Research Programs, administered by the Department of Defense. Read more about this issue.

In the News: Physicians, caregivers step into their patients' shoes

9News Colorado reports on the Consortium of Multiple Sclerosis Centers meeting last week in Denver...
May 30, 2008
by TaRhonda Thomas


Dr. Kathy Hanlon often treats patients with Multiple Sclerosis; but she has never experienced the crippling pain and physical difficulties they experience – until now.

"We hear what they say and what they feel, but being in their skin is another world," said the neurologist as she prepared to step into the Multiple Sclerosis simulator. The virtual device, developed by Biogen and the RJO Group, lets people feel the symptoms of MS. Gloves mimic tingling in the hands. A triggered treadmill illustrates difficulty in walking. A trick cup shows just how hard it is for people living with Multiple Sclerosis to pick up things.

"Multiple Sclerosis is a disease where the body's immune system makes a mistake and attacks the brain over and over again," said Dr. Timothy Vollmer, who will soon serve as the medical director of the Rocky Mountain Multiple Sclerosis Center.

"The most common symptom is fatigue," he added. "Sensory problems, vision loss, numbness tingling… Anything the brain does, which is some form of human behavior, can be affected by this disease."

It is estimated that about 400,000 people in the United States suffer from MS. John Brako is one of those people. He attended the Consortium of Multiple Sclerosis Centers' annual conference which was held in Denver this week. "I hate having it," the 43-year-old struggled to say.

He says that people often wonder what he's going through. "'Why are you in a wheelchair?' They always ask me," he said. Doctors say inventions like the MS simulator could help patients, physicians, caregivers and family members better understand the struggles of living with MS. Read the complete story here.