25 Years of Impact: Raising Our Voices on Capitol Hill

Our Greater Northwest delegation

Six volunteers from the Greater Northwest Chapter were among the more than 350 MS activists who attended the Society’s 25th Annual Public Policy Conference in Washington, DC this month.

Together, we had the opportunity to celebrate our advocacy accomplishments over the last two-plus decades, including increased access to healthcare, hundreds of millions of dollars invested in MS research, and guaranteed civil rights for people with disabilities. We also learned about current priorities in preparation for meetings with members of Congress—our chance to share our personal stories and to urge support for policies that will address the needs of people affected by multiple sclerosis.

MS activist, Gayle Rundstrom, shares her reflections:
 

Bill & Anne from Montana ready to visit with their legislators

It was a long flight from Washington State to Washington, DC, which was made even tougher by the daylight savings time change! The conference kicked off on Monday morning with a session for District Activist Leaders—volunteers who are leading the way in their community by building relationships with elected officials in their legislative districts. We discussed our key responsibilities, current policy priorities, and developed our personal stories to tell our legislators.

In the afternoon, you couldn’t help but be excited by walking into the ballroom and seeing 350 people all supporting MS issues! There was energy everywhere! We heard a presentation on the political climate by Charlie Cook, who has served as a political analyst for major news networks. There was also recognition of 2015 elected officials of the year and Volunteer Hall of Fame inductees, including our own Doug Toelle from Alaska! The evening wrapped up with a reception and opportunities to network with MS activists from around the country.

En route to a legislative meeting

Gayle & Jessica arrive at Capitol Hill

On Tuesday, we focused on learning about our priority issues. We started out with a panel discussion about the Advancing Research for Neurological Diseases Act. This legislation, which will help us better understand the size and demographics of the MS population, has already passed the House as part of the 21st Century Cures Act, but still needs to pass the Senate. A second panel discussion was on NIH and CDMRP research funding. This is a big deal because NIH funding, in particular, has not increased in the past 10 years, not even keeping up with inflation. We need both NIH and CDMRP funding to support important medical research for MS and other diseases. Other conference sessions featured top researchers and experts from around the country, and included discussions of the complexities surrounding access to affordable MS medications.

After all of this preparation, we geared up to meet with our legislators. On Wednesday, we traveled together to Capitol Hill and asked our members of Congress to support our issues. It was so wonderful to see people with orange scarves, ties, and socks, walking the halls of Congress and on the streets outside. Our smiles and hand waves were invigorating! There was a lot of energy and enthusiasm, and it was powerful day advocating for people with MS.
 

Meeting with Senator Cantwell (center) from Washington State

Congratulations to our activists for a great trip and for their successful meetings with members of Congress from Alaska, Montana, and Washington State. Our MS activists at home made a difference, too, by sending thousands of Action Alert messages to their elected officials in support of the issues Gayle mentioned above. Together, we are helping shape federal policies and programs to better meet the needs of people living with MS.

Make sure you’re getting the latest updates and information on opportunities to take action by signing up for our MS Activist Network.

Taking Action in Olympia: WA State Action Day Recap

Yet again, MS Activists in Washington State have demonstrated that together we are stronger than MS! More than 65 activists attended our annual State Action Day at the state capitol in Olympia, and conducted nearly 100 visits to their legislators.

This year's group of MS Activists!

We brought the stories of people living with MS to our state's elected officials, ensuring they understand the needs of people with MS. Our requests focused on two pieces of legislation, HB 2326 and HB 2445, both of which will improve access to information about our health care insurance and how decisions are made about benefits and care.

Thanks to all of our activists for joining us!

MS Activist Jonathan Sari shares this recap of our annual Washington State Action Day:

MS Activists ready to take action!

On a brisk February morning, committed MS Activists from around Washington State met in Olympia to further the cause of Washingtonians living with MS.

Our legislative agenda for the session was to improve transparency in our state's health insurance system. As happened each of my prior years, we heard from expert speakers

who laid out the problems that our proposed legislation was intended to remedy, along with the outcomes we expected to result from those remedies. We also were honored to hear a vision for the future outlined by our Governor Inslee.  

Governor Jay Inslee speaks to the group.

After the presentations, it was time to speak with our legislators. For Legislative District 46, those legislators are Senator David Frockt, Representative Gerry Pollet, and Representative Jessyn Farrell. We did not manage to secure meetings with Representative Pollet or Senator Frockt, but Representative Farrell graciously made time to meet with us.

It was my third year attending our State Action Day. This year, my two compatriots (who had made the hour-long drive from our North Seattle district to the state capitol each of my prior two years) couldn't attend -- so I conducted the visits on my own.

Jonathan Sari (right) at a legislative meeting last year

I arrived at Representative Farrell's office fifteen minutes early. These legislators are busy! While I waited I watched her wrap up a meeting with the fire fighters union and receive a message from the Speaker of the House -- a request that ended up limiting our meeting time. 

Representative Farrell remembered me from our earlier meetings and given our limited time, I kept our request to the basics: I asked for her support for our bills and explained that we hoped to streamline reporting and improve accountability for health insurance. She asked some good questions and although I didn't remember all of the specific answers, I promised to get answers that day. I also shared my personal experience of my own medication denial by my insurance company. I thanked her for her time, letting her know that I was following her email newsletter, and let her get to her meeting.

MS Activists meet with legislative staff.

I also dropped off the information packets with Representative Pollet's and Senator Frockt's offices. Before returning home, I reported in to Linnea, the Chapter's advocacy manager, to request the information to follow up so I could follow up that evening with Rep. Farrell.

I am glad to be a part of the Society's efforts to make government work better for those of us living with MS.

-Jonathan Sari

Visit our Facebook page for more photos of our State Action Day event.

Questions? Want to get involved? Let us know.

Riding & Voting to End MS

For the second year, MS Activists were back at the Bike MS: Deception Pass Classic ride, asking cyclists and volunteers to learn more about advocacy and cast their vote for the issue they think should matter most to our politicians.

We collected 26 letters to members of Congress, requesting support for two initiatives that impact people with MS: improved access to mobility equipment like power wheelchairs, and enhancing research and data on neurological diseases like MS.

In addition, more than 100 people participated in our bean poll, casting their vote on what they think is the most important thing politicians could be doing to help people living with MS. And the results are in!

Thanks to our MS Activists who helped staff the booth and raised awareness about the work we do to support the MS community. Interested in getting involved? Learn more!

MS Activists Help Bring Medicaid Expansion to Montana & Alaska

Together, MS activists are achieving great progress by supporting Medicaid expansion to provide quality, comprehensive care to our most vulnerable populations. Medicaid is a critical safety net for people living with MS, because: 

• Many people with MS are unable to afford insurance costs if they lose their job, due in part to the high costs of care in managing the disease.
• Medicaid has traditionally been able to fill the gap, but you have to be very low income and already disabled to qualify. 
• The new health care law gives us an opportunity to allow more people with MS (and their caregivers) to have access to quality health care under Medicaid expansion.

Read on for more details on recent legislative successes:

Medicaid Expansion Passes in Montana
In late April, Governor Bullock signed Medicaid expansion into law! This measure ensures that nearly all of the 1,700+ people in Montana living with MS can have access to affordable health insurance. It will offer low-cost health insurance to Montanans that make too much money for the traditional Medicaid program, but too little to receive subsidies on the health insurance exchange.

Photo credit: MT Governor's Office

MS activists worked hard to advocate for this issue by reaching out to their legislators in person, via phone and email, and also by submitting letters to the editor of local newspapers across the state. We also sent out an Action Alert to our MS Activist Network, and activists responded by sending emails to their legislators in support of expansion.

The National MS Society was part of a larger effort to support Medicaid Expansion. We participate in the Alliance for a Healthy Montana, a group of healthcare and public health partners working together to monitor and take action on health policy issues. We appreciate everyone’s efforts to make this a reality.

Alaska’s Governor Walker Expands Medicaid

Photo credit: AK Governor's Office

In July, Alaska’s Governor, Bill Walker, said he would expand the Medicaid program in the state using his executive power. MS activists and health advocates have been working tirelessly over the last few years to support the expansion of Medicaid in their state, but the state legislature could not agree on the path to or process for expansion.

The expansion ensures that nearly all of the 1,000+ people living with MS in Alaska have access to care, along with many others who living with chronic illnesses or disabilities. Alaska is the 30th state to accept Medicaid expansion and the state’s Department of Health and Social Services hopes open enrollment to Alaskans starting on September 1, 2015.

As a reminder, if you’re not yet on our Activist Network, sign up today to receive important updates and alerts about how you can take action. Your voice matters – thanks for being involved!

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.

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!

MS Activists meet with Congressman Adam Smith

Advocacy director Jim Freeburg, Congressman Adam Smith, and MS activist Simone Thompson

Monday morning, MS activists met with Congressman Adam Smith, from Washington's 9th congressional district. Congressman Smith has been a long-time supporter of the MS community - not only is he a member of the Congressional MS Caucus, but he's also a strong supporter for increased funding of MS research and many of our priority issues. 

When we met with Congressman Smith, he shared some of his personal connections to people living with MS and it was great to hear that he is keeping up on some of the new MS research that's happening within his district. He's definitely an engaged and informed representative of his community! 

MS activist Simone Thompson shared her story with the Congressman and encouraged him to keep up the good work. We reiterated our priority issues - funding for the National Institutes of Health, the primary government backer of medical research, and a funding stream within the Department of Defense for MS research. The meeting was especially timely given Congress's budget agreement this week - we need to make sure that all of Congress knows the importance of funding medical research.

Congressman Smith appreciated our visit and left us with a request that we keep raising awareness of MS activism within his district. That's something we can and will do. Stay tuned for more details about how you can be involved in MS activism. 

Legislators listen as MS Activists speak up

Earlier this week, we heard some exciting news coming from the Senate Transportation Committee of Washington's Legislature - at our request, they are proposing an increase in funding for the special needs transportation fund. This is the fund we've been talking about for some time and it's exciting to learn that the Senate Majority Coalition Caucus is proposing to fund the special needs program by an additional $33 million over ten years. While it's not the full level that we had hoped for, it's still an impressive figure.

Next week, legislators will be in Olympia for committee days, an annual "pre-season" of sorts to the legislative session. It's possible they will reach an agreement on a new transportation package before then, but it's no guarantee. Governor Inslee was hoping legislators would reach agreement on a package during the special session he called to entice Boeing to build their next airplane in Washington, but the special session finished up without a transportation plan.

If legislators do have an agreement on a transportation plan, MS Activists will be needed to testify in Olympia, perhaps as soon as next week. Stay tuned to the blog for more details as we learn more.

Representative Cyrus Habib agrees to #KeepUsMoving. Will you?

This morning, MS Activist Karl Schiller and I met with state Representative Cyrus Habib to ask for his help with our effort to improve transportation for people with MS and other disabilities. Karl, a constituent of Rep. Habib, shared the experiences of many people in the MS community who are not able to drive because of their MS. He attends a weekly swim aerobics class and one of the participants relies on the King County Access shuttle to get to and from class. Sometimes she'll have to wait an hour or more to get picked up from class because their aren't enough shuttles. We hear stories like this all the time.

Rep. Cyrus Habib

Representative Habib fully understands the challenges that someone with a disability faces. When he was 8, he lost his eyesight to cancer. Now, he's a Yale-educated attorney and a member of the state legislature When we asked if he would support this effort, Rep. Habib not only said "yes!" - he encouraged us to go even further and ask for a bigger package. People with MS have so many unmet needs when it comes to transportation, and while Rep. Habib has agreed to help, we need your help as well. 

We've blogged previously about town halls throughout the state where legislators want to hear from you about your transportation needs. However, because of overwhelming demand, the legislature just added three more town halls in Seattle, Bellingham, and the Tri-Cities. See below for the complete list, with the new additions in bold.

• Sept. 17 – Bellevue (Northwest Region) 6-9 p.m.
• Stevenson Elementary School, 14220 NE 8th St., Bellevue, WA 98007
• Sept. 18 – Everett (Northwest Region) 6-9 p.m.
• Snohomish County, Robert Drewel Building, 3000 Rockefeller Ave., 1st floor, Everett, WA 98201
• Sept. 23 – Wenatchee (North Central Region) 6-9 p.m.
• Chelan County PUD Auditorium, 327 N Wenatchee Ave., Wenatchee, WA 98801
• Sept. 24 – Yakima (South Central Region) 6-9 p.m.
• Yakima Area Arboretum, Garden View Rm., 1401 Arboretum Dr., Yakima, WA 98901
• Sept. 26 – Tri-Cities 6-9 p.m.
• Columbia Basin College, Gjerde Center, 2600 N. 20th Ave., Pasco, WA 99301
• Oct. 2 – Spokane (Eastern Region) 6-9 p.m.
• Greater Spokane Inc., 801 W. Riverside, Spokane, WA 99201
• Oct. 7 – Vancouver (Southwest Region) 6-9 p.m.
• Vancouver Community Library, Columbia Room, 901 C St., Vancouver, WA 98660
• Oct. 9 – Tacoma (Olympic Region) 6-9 p.m.
• Evergreen Tacoma Campus, Lyceum Hall, 1210 6th Ave., Tacoma, WA 98405
• Oct. 14 – Seattle 6-9 p.m.
• King County Courthouse, Room 1001, 516 3rd Avenue, 10th Floor , Seattle, WA 98104
• Oct. 15 – Bellingham 6-9 p.m.
• Port of Bellingham Cruise Terminal, 355 Harris Ave., Bellingham, WA 98225

Let us know if you'll be attending any one of these meetings so we can get the most current information to you. Send an email to jim.freeburg@nmss.org or call 206-284-4254, ext 40237.

What's in Obamacare for people with high out of pocket costs?

Last night, a KING 5 town hall event on health care featured a question from MS Activist, Susan Brock. The town hall, titled "Health Care: Time to Get in the Game," answered many common questions that people with MS may have about the health law, like "what will happen to me if I'm on Medicare?" or "what will happen to my coverage at work?" Susan's question may be the most important though for people with MS - "What's in the law for people with a chronic condition like MS who experience high out of pocket costs?" 

I don't think Susan's question was answered sufficiently. The panelist answering the question had just talked about help that employers will get for paying for employees' coverage and so he answered the question with that in mind. However, Congressman McDermott did point out that there are no more annual or lifetime limits that often limited coverage for someone with extremely high costs. In addition and most importantly, everyone will now have an annual cap on out of pocket expenses (roughly $6300/year - not including premiums). And if you have a lower income (say because your MS prevents you from working full time), you'll have an additional help with your out of pocket costs. So in short, there's a lot to like in the Affordable Care Act if you currently have high out of pocket costs.

The KING 5 special will be on the air again on KONG 6/16 Sunday, September 7 at 6:00 p.m. and again on NWCN Monday, September 9 at 8:00 p.m. It's also available online - look for Susan's question at the 4:08 mark during the third segment. 

Keep checking back on this blog for more information on the new health care law. There's lots more to come! And if you want to know more about how you will be impacted by the health care law, speak to an MS Navigator at 800-344-4867 or check out more MS-specific information on our website.