Thursday, March 31, 2016

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.

Tuesday, March 8, 2016

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.