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!

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.

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.

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! 

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.

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. 

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

MS Activists meet with Rep. Jessyn Farrell

Yesterday, MS Activists Jonathan Sari and Esti Mintz met with their state Representative Jessyn Farrell to continue the discussion we had during the legislative session on special needs transportation. The National MS Society is very interested in increasing funding for accessible transportation, and we have been talking with legislators about how to make this happen. As the vice-chair of the House Transportation Committee, Rep. Farrell has a particularly powerful role to play in budget negotiations. 

From left to right - Esti Mintz, Nigel Herbig, Rep. Jessyn Farrell, Jonathan Sari, Jim Freeburg

Jonathan and Esti met with Rep. Farrell as part of our Day of Activism in February - soon after they met with her, she moved into a leadership position within the Transportation Committee. Rep. Farrell was particularly interested in helping out and committed to doing whatever she can to ensure our concerns are addressed. It was great to hear her strong support for the issue - we'll definitely be working with her to make it a reality.

If you are interested in meeting with your legislators to discuss accessible transportation (or any other issue affecting the MS community), let us know and we'll help make it happen.

Medical research funding protected by Governor Inslee

Medical research advocates should be pleased with Governor Inslee's recent actions that preserved funding for the Life Sciences Discovery Fund (LSDF). On Friday, the Governor vetoed legislation that would have gutted funding for the LSDF.

The LSDF was created by Governor Gregoire in 2005 from tobacco settlement monies to invest in promising medical research in Washington state. One of the largest LSDF grants went to the Benaroya Research Institute to create an autoimmune research program to look for new treatments for conditions like MS. Since then, the Legislature has significantly reduced funding for the LSDF due to economic troubles, and proposed eliminating funding completely this year.

The Society, along with several other patient advocacy organizations, urged the Governor to veto the funding cut. Increasing funding for medical research has long been a priority for the Society, and we are pleased that medical research will continue in Washington state.

Session finishes up without a transportation package, but with a disability parking bill!

As you probably know, the legislature finished up its business late last week without passing a new transportation plan. Despite pleas from all sorts of transportation advocates (including MS Activists!), legislators could not reach an agreement about how to fix Washington's transportation problems. It's hard to know where to place the blame, but the long and short is that we won't stop talking about the need for additional funding for special needs transportation any time soon.

While talking to legislators about the need to increase funding for accessible transportation, it's become pretty apparent that this is a big issue for people with MS. The stories from people with MS show the significant need for additional transportation options for people with MS and others who can't drive. While many legislators have been sympathetic, our request has been caught up in debates around contracting, union wages, and environmental protections. We'll continue to push for more funding for special needs transportation, so if you haven't already, it's not too late to take action!

On a brighter note, our efforts to protect disabled parking for people with MS paid off. The Legislature passed House Bill 2463 last week with unanimous votes in the House and Senate. MS activists should be proud to know that our work at the Day of Activism in February paid off. Relationships that activists have built over time with their elected officials have been the key to our advocacy efforts and we are grateful that the MS community makes it a priority to get involved in government. Your work improves the lives of people with MS and for that, we are grateful!

Transportation discussion continues in Olympia...and special needs funding increases!!

In the closing days of the legislative session, lawmakers don't seem to be much closer in agreement on the specifics of a transportation package. However, they are making progress on one issue that really matters to people with MS: special needs transportation! As this article from the Seattle Times indicates, Senator King formally introduced his proposal yesterday (Senate Bills 6577, 6578, 6579), and in an exciting twist, contains even more funding for special needs transportation than we saw just a few weeks ago. His proposal now suggests increasing special needs funding by $160 million!

The special needs program funds paratransit services, like King County's Access, Snohomish County's Dial-a-Ride, and Pierce County's SHUTTLE. It also provides grants for accessible shuttles to community groups like senior centers. We frequently hear from people with MS who have a very difficult time getting around the community and we expect that this increase in funding will make it easier for people with MS to get to where they need to go when they can no longer drive.

If you haven't already, be sure to tell legislators that we need to fully fund special needs transportation! It just takes a few clicks and you can get an email off to your legislator today. 

Disability parking bill moves through the House

Earlier this week, the disability parking bill addressed at the Day of Activism passed the Washington House of Representatives. The bill is intended to crack down on the fraudulent abuse of disability parking placards, but the Society expressed concern about its detrimental impact on people living with MS. The bill moved forward after legislators removed the section that concerned MS activists, preserving parking privileges for people living with MS.

A recent article from Everett's Herald newspaper provides a good overview of the issue, and quotes the Society's advocacy director, Jim Freeburg. The National MS Society has been urging lawmakers to focus on increasing enforcement rather than taking away privileges from legitimate users. House passage of the bill suggests that lawmakers are listening.

House Bill 2463 now moves onto the Senate where it will need to receive a hearing in the Senate Transportation Committee before March 3 in order to become law.

Senate shows support for special needs transportation - you can too!

The Senate Majority Coalition Caucus released their latest proposal yesterday and it includes an additional $111 million for special needs transportation over the next twelve years. This is a significant increase over the proposal released this fall, but it still isn't perfect. The proposal neglects to include any new funding for community organizations providing special needs transportation. Instead, it allocates all of the additional funding to transit agencies offering paratransit services.

MS activists should be pleased that legislators heard our message from the Day of Activism. But we shouldn't rest. The House still needs to approve the transportation package, and this will only occur once legislators reach a consensus over reforms that the Senate is proposing. That consensus could take some time, but we hope legislators will move forward. MS activists should continue pressing legislators to take action on improving the state of accessible transportation in Washington. Too many people with MS and other disabilities need it!

MS activists should continue to talk about the importance of special needs transportation at legislators' town halls and on social media. If you are on Twitter (and now Facebook!), join the discussion with these hashtags:
#WaLeg - all things Washington Legislature
#WaTranspo - tweets about the transportation package
#KeepUsMoving - our hashtag for special needs transportation advocates
#MSactivist - for all your MS advocacy

Our Day of Activism in Olympia....Success!

Over 65 MS activists descended on the Legislature last week to talk to lawmakers about the importance of accessible transportation and disability parking for people with MS. Despite the cold, volunteers came from all over the state and met with half the Legislature - an incredible feat! It was an inspiring day and made me so proud to be a member of the MS community. 

Activists met with legislators to talk about House Bill 2463 - an effort to crack down on illegal users of disability parking placards that would restrict the ability of people with MS to get free and unlimited parking. Because of our advocacy, lawmakers removed the restrictions on parking privileges for people with MS and other mobility impairments. The bill moved out of the House Transportation Committee last week and should move forward.

Lisa and Martin Boon

Sue Dahlin-Morales meeting with Senator Andy Hill's staff

Cermit Rickey on the Capitol steps

Jane Foy and Nora Gibson

Veronica Chase discussing our priority issues.

Additionally, volunteers advocated for additional funding for accessible transportation. Too many people with MS are unable to get around their communities and the legislature should increase funding for accessible transportation (also known as the special needs transportation fund). While the legislature isn't expected to pass a new transportation package anytime soon, we will be working with them to ensure they don't forget about the transportation needs of their constituents who live with MS and other disabilities.

Insurance Commissioner Mike Kreidler (photo courtesy of Martin Boon)

One highlight of the day - Insurance Commissioner Mike Kreidler joined us to provide a quick update on the Affordable Care Act. Commissioner Kreidler is a long-time supporter of the MS community and is always a favorite speaker at the Day of Activism.

Thanks to all the Activists who attended the Day of Activism. And for all those who weren't able to attend, you can still make a difference. Email your legislators today and ask them to fund accessible transportation - it's not too late!

MS Activist to speak out about clinical trials

MS Activist Jonathan Sari just let me know that he will be speaking about the importance of clinical trials at an upcoming panel. His participation reminds me of the many ways that people with MS can be activists even when they aren't speaking to elected officials. Spreading awareness and encouraging others to take action are vital steps in strengthening the MS movement and I applaud Jonathan for his efforts.

His panel, to be held the evening of January 30th at Seattle's Town Hall, also features MS researcher Dr. Mariko Kita of Virginia Mason. For more information and registration information, visit this page.

Participation in clinical trials is incredibly important to help move MS research forward. Clinical trials often need hundreds of patients willing to see if new treatments are safe and effective. To facilitate this effort, the Society maintains a database of clinical trials that are recruiting people with MS. To learn more about these trials, visit this Society's webpage.

Jonathan will be joining us in Olympia this year to speak to legislators at our annual Day of Activism on February 5. If you see him there, be sure to ask about his participation on the panel. And don't forget - it's not too late to register for the Day of Activism!

Washington Day of Activism - it's coming soon....

Just a reminder that our annual Day of Activism in Olympia is soon upon us. MS Activists will be coming from all over Washington to raise awareness of MS at the state legislature on February 5 and we hope you will join us. Registration is still open - you can learn more details and sign up here. If you are new to advocacy but still want to attend, don't worry. We have two teleconferences planned for you so you can get up to speed. Sign up for those calls: Jan. 22 and Jan. 29.

The Day of Activism is one of my most favorite days of the year. When I took this job, I did it because I knew the stories of people with MS have the power to change laws. The Day of Activism is the day when this really happens. The real stories of the MS community are told to people in power and we make a difference.

Three years ago, together, we passed a law that allows more MS specialists to practice in our state. Two years ago, we stopped people with MS from losing their health care. Last year, we made sure everyone with MS has access to affordable and comprehensive health care.  This year, we will continue that tradition and make it easier for people with MS to get to where they need to go.

Will you join us?

Should the state have new rules for disability parking placards?

A new report to the Washington legislature recommends that the state allow fewer people with disabilities to qualify for free or unlimited street parking. This proposal, meant to crack down on fraud and abuse of disabled parking placards, may prevent many people with MS from gaining access to free or unlimited on-street parking.

The report does not propose revising eligibility for the blue disability parking placards, but instead suggests creating a new orange placard that allows for free parking and parking beyond the posted time limit. Currently, state law says that anyone with a disability placard can park in a metered space for an unlimited amount of time. This provision would be eliminated and under the new proposal, blue placards could not be used for free, unlimited on-street parking.

Nearly 700,000 permanent disability parking placards are in use throughout the state and it is thought that many of these placards are being used fraudently. The abuse seems to be most rampant in Seattle where many blocks are filled with a disproportionate number of disabled parkers during the work day. The City of Seattle has tried for many years to fix this problem and asked the legislature for a solution.

The new orange placards would have a much stricter definition of disability, and allow someone to qualify if they meet any of the four criteria:

• Cannot insert coins in parking meters or obtain tickets from ticket machines in parking lots or ramps due to a lack of fine motor control of both hands.
• Cannot reach up to 42 inches from the ground, due to lack of finger, hand, or upper extremity strength or mobility.
• Cannot approach a parking meter due to use of a wheelchair or other device.
• Cannot walk more than 20 feet due to an orthopedic, neurological, cardiovascular, or lung condition which is so severe that the ability to walk is almost completely impeded.

These criteria seems to eliminate people with MS who experience fatigue and gait, except in the most extreme circumstances.

The report also suggests additional changes to crack down on fraud, including increasing penalties for fraudulent use of a disabled parking placard. The whole report is available here. The Chapter's Washington Government Relations Committee is reviewing the report and will ensure that the legislature understands the perspective of the MS community when they are reviewing the proposal.

What do you think about this proposal? Should it be harder for people to get a disabled parking permit? What else can be done to crack down on the abuse of disability parking placards?