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.

Doug Toelle: Society Volunteer Hall of Fame Honoree

Congratulations to Doug Toelle, one of our MS Activists from the Greater Northwest, on being inducted into the National MS Society’s Hall of Fame for Advocacy. Doug is a dedicated MS activist who isn’t afraid to speak up about issues affecting people living with MS and other disabilities.

Diagnosed with MS in 2000, Doug is a proactive and persistent advocate who has forged strong relationships with his local, state, and federal legislators and helped move forward issues in Alaska including advancing disability awareness training for first responders, creating an employment first state, supporting Medicaid expansion, and improving access to durable medical equipment. Aside from his role as an MS Activist, Doug is a mentor to other activists, a self-help group leader, and Walk MS participant.

Great work, Doug!

Check out other chapter and national award recipients here.

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!

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.

I think we knew this already - there aren't enough MS docs out there

A new study just published by the American Academy of Neurology finds that the current shortage of neurologists is only expected to get worse in the years ahead. For someone who lives outside of a major metropolitan area like Seattle, this isn't new news. It can very difficult for patients to find a neurologist who specializes in MS care, especially in rural places like Montana and Alaska. And while the Society has been working on this issue for some time by recruiting medical students via MS fellowships, there's more work that can be done, especially by Congress.

Two years ago, MS Activists at the Society's annual lobby day in Washington, DC asked Congress to find solutions to address this issue and just last week, neurologists were again asking Congress to do the same thing. The long-standing nature of the problem and the lack of action by Congress points to the severity of the challenge we are facing, but that doesn't mean we should give up. In fact, I think it means we need to double-down on our efforts and work twice as hard until we find a solution.

And we need to be creative about our solutions. In 2011, our Chapter successfully pushed a law through the Washington State Legislature that closed a loophole discouraging foreign-educated MS specialists from practicing in the state. This legislation has already kept one MS specialist around and we hope it will continue to be useful in the years ahead as the shortage of neurologists gets worse.

What's the National MS Society doing about the cost of MS drugs?

Great question. I'm glad I asked that. A recent article in the New York Times gives a great overview of the challenge that we face in asking state legislators to put a cap on the price of MS drugs. In Washington, we supported legislation (HB 1876 and HB 2435/SB 6241) to limit the cost of drugs. Unfortunately, the bills did not pass, though we heard from several legislators that this is an issue they'd like to help us with. The American Cancer Society also pushed hard for this legislation and in tandem with other chronic disease organizations, we were able to set up a mechanism to address the issue in the future if it causes adverse selection (the spiraling of costs that could occur when people with high health care costs are separated into their own health plans).

In Alaska, we've been making great progress in pushing HB 218, legislation that would increase transparency around the use of specialty tiers. The bill is currently in the Senate Rules Committee and we are hoping it will pass before the session adjourns on Sunday.

We are also looking at this issue in Montana - the first step is documenting the extent to which people with MS are actually affected by this issue. Our Montana Government Relations Committee is very interested in learning more about this issue, so let us know if you have high drug costs.

Legislation to protect people with MS moves forward in Alaska

Around the country, the National MS Society has been pushing legislation that would eliminate the use of specialty tiers or at least shed light on the increasing trend that pushes more costs onto people with chronic disease. In Alaska, we are supporting House Bill 218 which would increase the notification requirement before specialty tiers can be implemented to 90 days. Specialty tiers are a pricing mechanism that insurers use to charge people more money depending on the cost of a drug. For example, generic drugs are often on Tier 1 and require the lowest co-pay, maybe $5 per prescription. Preferred brand name drugs may be on Tier 2, and have a $20 co-pay. Tier 3 are non-preferred brand name drugs and may cost say $50. Drugs on a specialty tier (increasingly often the MS disease-modifying therapies), may have a 20% co-insurance charge. That percentage cost adds up real quick for an MS drug that costs $4,000 a month.

A recent segment on KTUU 2 in Alaska talks about the bill and it's impact on one Alaska family impacted by MS.