Congressional support for increased MS research grows

At the end of June, ten MS Activists met with Congressman Derek Kilmer to ask him for increased funding for MS research. They shared their personal stories, and by doing so, recruited a new ally to the MS movement. Read on to see what Rep. Kilmer had to say about the visit in his e-newsletter to his constituents:

"This week I met with the Greater Northwest Chapter of the National Multiple Sclerosis Society on Bainbridge Island. In the meeting I heard from a group of people living with MS all of whom had unique stories ranging from a teenage girl who faces occasional paralysis to a senior citizen who faces considerable challenges on a daily basis.

I joined the Congressional Multiple Sclerosis Caucus because the federal government has an important role to play to tackle challenges related to MS. First, Congress should continue to fund MS research to prevent the occurrence, slow progression, and lessen the symptoms of the disease. 

Second, Congress should continue working to ensure access to appropriate treatment, alternative therapies, and pain relief for those with MS so that they can live more comfortable and productive lives.

Additionally, Congress must support funding for the Lifespan Respite Care Program to ensure family caregivers have the support they need. And finally, Congress needs to continue to give these issues the attention they deserve. That’s why the advocacy of groups like the National Multiple Sclerosis Society is so important."

The meeting is a great example of MS Activists reaching out to a politician and asking for help to raise awareness of multiple sclerosis. Rep. Kilmer was elected to Congress this year to represent Bainbridge, NW Tacoma and the Kitsap and Olympic Peninsulas. It's pretty impressive that he came out so strongly in favor of our issues. Thank you to the MS Activists who made that possible! 

Tips on how to be an effective citizen lobbyist - from the staff of Congressman Adam Smith

Meeting with politicians and their staff is one of the best parts of my job. I'm always amazed at how easy it is to talk with our elected officials and it makes me proud to have such an open and democratic government in our country.

A big part of the job description of a politician is to meet with constituents - it's how they learn about important issues and stay accountable to voters. A politician can't be everywhere at once though and so they rely on their staff to help out with their tasks. Last week, along with MS Activists Simone Thompson and Karl Schiller, I had the opportunity to meet with his very helpful deputy district director of Congressman Adam Smith, Debra Enteman.

Karl and Simone were great in sharing their stories with Debra, and she was very helpful in giving us some tips on how to be effective citizen lobbyists. I think they are worth repeating:
1) Stay informed - learn about the issues and know what you want your elected officials to do about them.
2) Tell your story effectively - the best activists don't just have an opinion on an issue, they have a personal connection to the issue that makes it compelling.
3) Remind the elected official that you are a constituent - include your address in all your correspondence as politicians care most about voters in their district.

Congressman Adam Smith is a longtime supporter of the MS community so we didn't have to do any hard selling during the meeting. He's a member of the Congressional MS Caucus and a fervent supporter of increased funding for medical research. Still - it was a great chance to be a part of our democracy.

Karl Schiller, MS Activist and Jim Freeburg, advocacy director

Discrimination at the doctor's office

The New York Times has an interesting blog post about the prevalence of blatant discrimination towards people with disabilities at doctor's offices throughout the country. It includes comments from a prominent MS researcher Dr. Lisa Iezzoni that made me think about how much work is left to do to fully incorporate the vision of the Americans with Disabilities Act (the ADA). I frequently hear from individuals about buildings that aren't accessible, discrimination at the work place, and the lack of accessible transportation in the community - all issues that the ADA was trying to address.

While passing new laws is necessary to change behavior, it is only a part of advocacy. Implementing laws that have already passed is the much larger and often more complicated challenge. And that work takes an incredible amount of time, patience, and persistence in order to see the intent of the law actually come true.

It makes me think - where have you seen discrimination because of your MS? At your job? At the doctor's office? How much work do you think is left to make real the intent behind the ADA?

Should your rights as a person with a disability stop when you leave the country?

I think most people with MS would say that all people with disabilities around the world should have the same protections we have in the United States because of laws like the Americans with Disabilities Act (ADA). And yet our own leaders refused to acknowledge this when the U.S. Senate refused to ratify the Convention on the Rights of Persons with Disabilities (CRPD) in December, 2012. Why did that happen? Find out at a couple of events happening this week.

Many groups like the National MS Society were very active in supporting the CRPD. In fact, we helped to generate thousands of messages to our members of Congress, urging their support for the treaty. We'll be trying again this year as it agains comes up for consideration. However, it wasn't enough and we failed by five votes.

To learn more about these efforts, I invite you to participate in two events put on by our disability rights allies:

1) A conference call put on by national disability rights leaders, including U.S. Senator Tom Harkin, to discuss the plan for CRPD ratification. It will be Thursday, May 16 at 12 p.m. PT. To RSVP, click here.

2) An evening lecture at the University of Washington with three leading disability activists to explain the CRPD, examine why the U.S. Senate refused to ratify it, and explore strategies to achieve ratification of the treaty this year. It will be held this Thursday, May 16 from 5:00 p.m. - 8:00 p.m. at William Gates Hall at UW Law School. RSVP to Jodi Rose at jodir@dr-wa.org

The MS movement is stronger than ever.....A guest post from MS Activist, Simone Thompson

My life struggle with MS is painful and complicated. Knowing there are others suffering from MS is heart-breaking. MS does not discriminate. It is unrelenting.

Through pain, loss, confusion, fear and anger I finally realized the MS war is far larger than myself. I feel compelled to speak for those unable to speak for themselves. So many impacted by this life-altering disease rely on public officials to give voice and resources to aid in their battle.

I am ill, but I still have a voice!

Today, I fight for my brothers and sisters living with MS. I lend my voice to the battle for their success and cure - not just my own. Together we can win!

Directing my small voice to my local Washington State 9th Congressional District Representative, Adam Smith, I was delighted and enlightened to learn of his extensive involvement in the MS fight. Congressman Smith directly advised that he supportive of not only NIH Funding, but Representative Smith is also a member of the Congressional Multiple Sclerosis Caucus, which creates a political platform for discussing important issues for those facing MS. This caucus has two main goals: (1) Find solutions for people living with MS and (2) promote awareness and education about MS.

Congressman Smith is committed to finding solutions and cures for MS! His dedication and advocacy are truly appreciated.

I strongly suggest reaching out to your local and federal officials. Making your vote count is a priviledge and can lead to great results! Writing letters, attending caucuses and phone calls can go a very long way.

Did you know the Washington State Legislature has been cutting medical research funding?

It’s not well very known, but since 2005, the state of Washington has been funding innovative scientists in our own backyard who are dedicated to finding cures for diseases like MS through the Life Sciences Discovery Fund (LSDF). The funding for this research has come from the multi-billion dollar tobacco settlement that then-Attorney General Christine Gregoire negotiated to compensate for increased health care costs from tobacco use. Unfortunately, this funding has been cut more and more as the budget crisis in Olympia worsens.

I was reminded of this state program by a recent article in the Puget Sound Business Journal that highlights the recent round of grants. While there aren’t any that relate to MS this year, one of the largest grants ever by the LSDF went to Benaroya Research Institute in 2007 to focus on improved diagnosis and treatment of autoimmune diseases. That grant has since been used to leverage millions more in funding from other institutions like the NIH.

I’ve been looking for an excuse to highlight the LSDF on this blog, because it’s a great example of what more the Legislature could do if it had more funding. The LSDF has been continually raided by legislative budget writers to pay for other state programs like education and health care. It was initially expected to fund $350 million in research over 10 years but only will be able to fund $7 million in research this year. That's too bad because we have so many smart scientists who are willing to work harder and smarter to find cures to diseases like MS, but don't have the funding to do it.

I think we knew this already - there aren't enough MS docs out there

A new study just published by the American Academy of Neurology finds that the current shortage of neurologists is only expected to get worse in the years ahead. For someone who lives outside of a major metropolitan area like Seattle, this isn't new news. It can very difficult for patients to find a neurologist who specializes in MS care, especially in rural places like Montana and Alaska. And while the Society has been working on this issue for some time by recruiting medical students via MS fellowships, there's more work that can be done, especially by Congress.

Two years ago, MS Activists at the Society's annual lobby day in Washington, DC asked Congress to find solutions to address this issue and just last week, neurologists were again asking Congress to do the same thing. The long-standing nature of the problem and the lack of action by Congress points to the severity of the challenge we are facing, but that doesn't mean we should give up. In fact, I think it means we need to double-down on our efforts and work twice as hard until we find a solution.

And we need to be creative about our solutions. In 2011, our Chapter successfully pushed a law through the Washington State Legislature that closed a loophole discouraging foreign-educated MS specialists from practicing in the state. This legislation has already kept one MS specialist around and we hope it will continue to be useful in the years ahead as the shortage of neurologists gets worse.