Wednesday, April 22, 2015

Taking Action at Walk MS

This spring, at several Walk MS locations in Washington, participants took a moment to sign letters to their members of Congress asking for support for two important issues impacting the MS community:

  • The Ensuring Access to Quality Complex Rehabilitation Technology Act (H.R. 1516) streamlines access to individually configured products like manual and power wheelchairs and seating and positioning systems. These medically necessary products are vital to helping people with more severe disabilities including progressed MS—remain independent, active members of their community.
  • The Advancing Research for Neurological Diseases Act (H.R. 292) fills a research hole by creating a data collection system that will help identify risk factors for developing neurological diseases, which could one day lead to a cure.

Collectively, 62 walk participants composed letters—which we then scanned and emailed to their members of Congress. These letters were delivered to six Congressional offices on behalf of the MS community. Thank you for making your voices heard!

Update: In July 2015, thanks in part to the work of MS activists, H.R. 292 passed the House as part of the larger 21st Century Cures Act (H.R. 6). The next step is for the Senate to act, which is not expected until this fall. The Society will continue to advocate for this legislation then.

If you’re ready to support issues that affect the MS community, take action now! Ask your member of Congress to protect access to complex rehabilitation technology and pledge your support to the ADA.

Congressman Kilmer Participates in Walk MS: Bainbridge Island
Rep. Derek Kilmer (center) and Walk MS participants
We were very pleased to have Congressman Derek Kilmer participate in Walk MS: Bainbridge Island this year. 

Congressman Kilmer has demonstrated his ongoing commitment to issues that affect the MS community by supporting robust research funding for the National Institutes of Health, as well as respite programs to support family caregivers. He and his staff regularly meet with MS activists to discuss the needs of the MS community—from research funding to access to treatment. (Here is a blog post from 2013 with a great update from Rep. Kilmer on his visit with some MS activists on Bainbridge Island.) 

Thank you, Congressman Kilmer, for being a part of the movement to end MS!

Thursday, March 26, 2015

Greater Northwest Activists Take On DC!

Two weeks ago, along with 350 other activists, staff, and volunteers from National MS Society chapters across the country, our Greater Northwest Chapter delegation traveled to Washington, DC to participate in the Society’s annual Public Policy Conference.

Our activists ready to meet with their members of Congress
We bring a small delegation of volunteers each year, and in our selection process we prioritize engaging both new and current activists and ensuring that key congressional districts are represented. 

This year, our six volunteers advocated for three issues:
  1. Funding for MS research through the National Institutes of Health and the MS Congressionally Directed Medical Research Program;
  2. The “Ensuring Access to Quality Complex Rehabilitation Technology Act,” to make it easier for people with MS to access the mobility devices they need; and 
  3. The “Advancing Research for Neurological Diseases Act / 21st Century Cures Initiative,” to collect data on neurological conditions like MS to help us better understand the disease and obtain more accurate incidence and prevalence rates.


A Society delegation presents Senator Patty Murray (center) with her award.
One of the highlights of the trip included honoring Washington Senator Patty Murray with Senator of the Year, the Society’s highest honor for elected officials. The Chapter's Washington Government Relations Committee Chair, Nora Gibson, presented the award, and recognized Senator Murray’s work as a powerful advocate for families affected by MS. We are certainly proud to have the Senator’s work and the work of our chapter recognized at the national conference!


MS Activists Nora Gibson and Steve Ehlert
On Wednesday, March 11th, our activists conducted 16 visits with their members of Congress. Our Washington State activists had in-person meetings with both of their Senators, and activists Gayle Rundstrom, Steve and Vicki Ehlert, and Nora Gibson shared powerful stories with our Representatives. Thanks to the work of activist Doug Toelle, we received a commitment from Alaska Representative Don Young’s office to be a co-sponsor for the neurological disease data bill (H.R. 292). In addition, Montana activist Lora Waid forged new connections with staff members in the office of Representative Ryan Zinke, a freshman legislator from Montana. 

Rep. Zinke's staff with activists Lora & Doug
Lawmakers see us as a credible source of information for what matters to the MS community. Of the 18 members of Congress that represent our Chapter area, six are members of the Congressional MS Caucus—demonstrating their commitment to taking action on issues related to our work.  Together, our legislative champions, terrific volunteers, and online network of MS activists are playing a critical role in bettering the lives of people affected by MS.

Congratulations to our activists for a successful trip and for bringing awareness of key issues affecting people living with MS to our members of Congress. Thank you for your commitment to our work and for serving as dedicated leaders in the MS movement. You help us support the Society’s goals to shape federal policies and programs to better meet the needs of people living with MS. 

Washington MS Activists with Senator Maria Cantwell

Are you ready to take action? Sign up for our MS Action Alert Network here.

Monday, February 2, 2015

Success in Olympia: State Action Day Recap


Another successful State Action Day has come and gone, and what a day it was! MS Activists came from all corners of the state -- as far as Spokane, Granite Falls, and Vancouver -- to be a part of the event. 

Here’s a recap of what MS Activists were up to on January 27, 2015: 

  • More than 40 MS activists came together in Olympia to show their support for people living with MS and conducted over 75 in-person visits with lawmakers
  • At home, activists spread the word via social media and sent more than 80 messages to their legislators 

Together, we successfully raised awareness and made a powerful ask for increased funding for special needs transportation -- services that help people with disabilities get where they need to go. Access to transportation is a major issue for people living with MS. Mobility impairments and fatigue are some of the most common symptoms of MS, and as the disease progresses, many individuals are no longer able to drive.

People with MS and other mobility challenges need and deserve the opportunity to access jobs, shopping, church, and community activities, so they can live as full a life as possible. Washington’s lawmakers have the ability to improve the lives of people with MS by increasing funds for special needs transportation. 

Rep. Linda Kochmar (left) with MS Activist Cermit Rickey (center).
The special needs transportation fund breaks down barriers to transportation for people who are unable to drive because of a disability or age. It funds projects that help local communities offer efficient, coordinated transportation services, such as paratransit or non-profit transportation programs. While paratransit programs are required under federal law, local transit agencies often have a difficult time funding them. 

We can do better—and that’s where we need your help! MS activists are working together to ensure that our state provides adequate funding for accessible transportation. We asked lawmakers to support an additional $160 million in special needs transportation funding in the next transportation package. This ask resonated with many legislators who continue to express their support for this request.

Commissioner Mike Kreidler speaks to the group.
Finally, we were honored to host special guests Insurance Commissioner Mike Kreidler and Senator Joe Fain. Commissioner Kreidler spoke to the group about critical insurance issues affecting the MS community, including increasing transparency in prescription drug formularies and improving provider networks. Senator Fain energized the room with his overview of key transportation issues and the value of constituent voices in moving issues forward.

Thank you to all of our activists for raising awareness and speaking up on behalf of the MS community. If you weren't able to attend, you can still make a difference! Email your legislators today and ask them to fund accessible transportation. 

Questions? Want to get involved? Let us know.

Monday, January 19, 2015

Join MS Activists in Olympia next week!

State Action Day is just around the corner. This annual event brings together MS Activists from all over Washington to raise awareness of issues affecting the MS community among our state legislators. If you are new to advocacy, but still want to attend -- don't worry! We will provide ample information before and during the event to get you up to speed. 

Our elected officials want to hear what matters to their constituents. Together, we will bring them the stories of people living with MS and we help change laws. Still not convinced? Here's some of the reasons you should attend State Action Day:


  1. To build a relationship with your legislator. If you already have one, consider it a visit to a friend. Your legislator represents YOU and wants to hear about issues relevant to your life.
  2. To stand in solidarity as an MS community, to speak out on behalf of all the 12,000 people living with MS and the 72,000 people in our state affected by MS 
  3. To make a statement. As our state legislators make decisions, we want them to keep the needs of people of MS in mind. We will help them understand what issues matter to our community. 
  4. To make a difference. Together, four years ago, we passed a law that allows more MS specialists to practice in our state. Three years ago, we stopped people with MS from losing their health care. Two years ago, we made sure everyone with MS has access to affordable and comprehensive health care. Last year and this year, we are continuing our work to support accessible transportation options to help people with MS get where they need to go. Help us make change.
  5. To build awareness. Our presence at the Capitol (in our orange scarves) brings attention to our cause! It also educates you on current issues that you can share with others who care about the MS community.

I hope you can join me and other MS activists in Olympia on Tuesday, January 27th to share important issues affecting the MS community with our legislators. 

Registration is still open! 

Sign up at www.nationalmssociety.org/WAactionday 
or by calling 1-800-344-4867, option 1.

Tuesday, October 14, 2014

Protecting Access to Disease Modifying Therapies in Montana

Commissioner Lindeen and MS Activist Deanna McCann
Many people living with MS rely on disease modifying therapies to delay and reduce symptoms of the disease. These medications can be very expensive, and high out of pocket costs can hinder access to treatment.

In Montana, and many other states, insurance plans typically cover these medications in specialty prescription drug tiers requiring patients to pay 20, 30, even 50 percent of the drug cost in co-insurance. The financial burden placed on patients relying on specialty tier medications is often much higher than cost-sharing for other tiers of prescription drugs and plan benefits.

An inquiry by the National MS Society and its activists resulted in a change that will make it easier for consumers to access the medications they need. The Montana Commissioner of Securities and Insurance, Monica Lindeen, investigated the cost-sharing structures proposed by insurers for 2015, and objected to some of the plans.  As a result, insurers now offer plan options with graduated co-pays, ensuring that consumers on those plans will pay no more than $250 per month for their disease-modifying MS therapies.

Press at the National MS Society office in Billings, MT
In addition, the Commissioner’s office will make sure healthcare navigators are trained to help individuals who need high cost medications select a health insurance plan that is best for their needs.

On Friday, October 10th, Commissioner Lindeen hosted a press conference at the National MS Society's office in Billings and invited MS Activist Deanna McCann to speak on behalf of people affected by MS and other chronic diseases. Deanna 
shared her story of being diagnosed as a young mother unable to pay the high cost for disease modifying medication and thanked Commissioner Lindeen for changing the way Montanans will pay for their specialty tiered medications. 

The work of activists like Deanna makes a difference in the lives of people affected by MS. The National MS Society continues to monitor insurance market plans across the country to ensure access to quality and affordable health care. As Deanna notes, “insurance coverage can be confusing to anyone.” With the help of MS activists, we can promote education, transparency, and access for people living with chronic conditions.

Read more about the press conference here.

Want to share your story? Ready to take action? Contact us!

Tuesday, September 30, 2014

Activists Speak Up During August Recess

MS Activists meet with staff from Sen. Cantwell’s office
Activists across the chapter took part in August recess visits to their members of Congress. A group of Seattle activists met with U.S. Senator Maria Cantwell’s Legislative Counsel for Health, Nico Janssen. Jonathan Sari writes:

"As MS activists, we shared our stories and thanked the Senator for supporting NIH funding and joining the MS Caucus. We asked for support for CDMRP and FDA funding, co-sponsorship for the Ensuring Access to Quality Complex Rehabilitation Technology Act, and her vote on the United Nations Convention on the Rights of Persons with Disabilities. Nico took our materials, took notes, and reminded us of the Senator's “yes” vote for the treaty the previous times it was up for a vote. All-in-all, he was quite supportive and understood the needs of the MS community. We got a photo for the blog and booked a successful meeting."

Congratulations to our activists on a successful visit! If you’re interested in conducting a meeting with a local, state, or federal legislator, contact us.

Friday, September 12, 2014

Bike MS cyclists voted and the results are in!

At this year's Bike MS: Deception Pass Classic, our MS activists built on the momentum generated at Walk MS this past spring by polling participants on which policy issue they think matters most to the MS community, asking "What's the most important thing politicians could be doing to help people living with MS?"

Nearly 150 cyclists voted in our poll. Sixty-nine percent ranked ensuring affordable and adequate health care coverage as the most important issue, followed by increasing funding for MS research (22%) and funding accessible transportation (9%).

Cyclists also took photos in our advocacy photo booth (view more photos from the booth) and signed up to receive Action Alerts. Welcome to our newest activists and thank you to Walt Corneille, Lisa Boon, and Martin Boon for their help at the booth.