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.

Tuesday, August 26, 2014

MS Activists Meet with State Senator Joe Fain

Lisa and Martin at the Society's
Day of Activism in Olympia
This summer, MS activists have been keeping the issue of special needs transportation fresh in the minds of legislators. In July, MS activists Lisa and Martin Boon met with State Senator Joe Fain, who serves in a budget leadership role for the Senate Transportation Committee, to ask what can be done to move a statewide transportation funding forward. Martin Boon writes:

"We were glad to meet with the Senator in our district. He was still optimistic with the progress being made toward a solution for transportation funding. We feel he heard our concerns on how important supporting and funding transportation is for all special needs transportation users, and especially the constituents living with MS within the 47th District and our State."

Senator Joe Fain
"We were pleased that the Senator was aware that many of Washington’s special needs grant requests go unfunded, that this fund needs to be protected and enhanced, and that inaction by legislators in Olympia could adversely affect those depending on this transportation assistance, for their day-to-day lifestyle."
 
Interested in making visits to your state or federal legislators? Let us know

Tuesday, July 15, 2014

More funding for accessible taxis in Seattle!!

The regulation of  ride service companies like Uber, Sidecar and Lift has taken up much of the Seattle City Council's agenda the past few months and in a surprising twist, people with MS now stand to benefit from the discussions. The City Council first passed some regulations in March only to see them overturned amid opposition from ride service advocates. In the resulting negotiations, individuals with MS and others who need accessible taxis won big, as a new surcharge on ride service companies will put more accessible taxis on the road.

A great article from the Seattle Times lays out the details. While it may take some time before we see if the law works as intended, it's great to see that Seattle's elected officials are responsive to the particular needs of people with physical disabilities. This may stem from Seattle Mayor Ed Murray's time in the legislature where, at the request of MS Activists and other disability advocates, he was often supportive of efforts to make the state more accessible.

If you live in Seattle, what's your experience with accessible taxis? Are they easy to find? Responsive? We'd love to know your experience.

Tuesday, June 10, 2014

How to stay current as an MS Activist

Given the crazy world of politics, it can be quite difficult for individuals to stay up to speed on various issues. The political environment can change on a dime, as current events shake up the status quo and push politicians towards action, or sometimes inaction. However, the best activists are the ones who have the most current information and can be seen by elected officials as a trustworthy sources.  

To help MS activists stay up to date, we know you need information - and lots of it. To make that happen, we have a variety of communication channels. 

Here are a few of them:
Twitter - follow us @JimFMovesMS and @MSActivist to see what we are doing on your behalf.
Action Alert emails - sign up at NationalMSSociety.org/MSActivist to get information about advocacy and ways you can take action.
Monthly teleconferences - the first Monday of the month at 12:15 p.m., Activists can learn about our advocacy work in detail. The number is 888-279-3775, 4001#. This month's recorded call is available at the bottom of this page .
Our website - find out more about our current priority issues (and now easily available on your phone!).

Do you like to receive information another way? Let us know and we'll see what we can do. 




Tuesday, April 29, 2014

MS Activists Walk the Walk (and Talk the Talk!) in Seattle

MS activists take action in many ways, whether it's meeting with their legislator, telling their story, determining policy priorities on our Government Relations Committee, or taking advantage of virtual advocacy opportunities through blogging, Twitter, or our MS Action Network.

At Walk MS: Seattle, our volunteers (including MS activists Holly Hawker and Karl Schiller) reached out to future activists by spreading the word about the Greater Northwest Chapter's advocacy work at our MS Activism booth.

Hundreds of participants interacted with our booth at the Gas Works Park rest stop by participating in our “bean poll” (voting on which policy issue matters most by placing a bean in one of three jars), taking a photo in our MS Activism photo booth, or signing up for our MS Activist network email list.




Our Activism Booth by the Numbers:
  • 4: Number of wonderful volunteers at our booth!
  • 400: Walk participants who participated in MS activism booth activities
  • 113: Photos taken in our MS activism photo booth.
  • 3: Photos that Blitz, the Seattle Seahawks mascot, took in our booth.
  • 222: People who ranked "increasing funding for MS research" as the most important thing politicians could be doing to help people living with MS. (That's 54% of the votes.) 
  • 22: New activists signed up for our MS Action Network. Welcome!
For more photos from the booth, visit our Facebook page.

These were just a few simple ways to engage participants and raise awareness about our chapter’s advocacy work. How are you spreading the word about MS? To volunteer or get more involved, contact us!

See you at next year's Walk!

By Linnea Nasman
MS Advocacy Volunteer