Did you know the Washington State Legislature has been cutting medical research funding?

It’s not well very known, but since 2005, the state of Washington has been funding innovative scientists in our own backyard who are dedicated to finding cures for diseases like MS through the Life Sciences Discovery Fund (LSDF). The funding for this research has come from the multi-billion dollar tobacco settlement that then-Attorney General Christine Gregoire negotiated to compensate for increased health care costs from tobacco use. Unfortunately, this funding has been cut more and more as the budget crisis in Olympia worsens.

I was reminded of this state program by a recent article in the Puget Sound Business Journal that highlights the recent round of grants. While there aren’t any that relate to MS this year, one of the largest grants ever by the LSDF went to Benaroya Research Institute in 2007 to focus on improved diagnosis and treatment of autoimmune diseases. That grant has since been used to leverage millions more in funding from other institutions like the NIH.

I’ve been looking for an excuse to highlight the LSDF on this blog, because it’s a great example of what more the Legislature could do if it had more funding. The LSDF has been continually raided by legislative budget writers to pay for other state programs like education and health care. It was initially expected to fund $350 million in research over 10 years but only will be able to fund $7 million in research this year. That's too bad because we have so many smart scientists who are willing to work harder and smarter to find cures to diseases like MS, but don't have the funding to do it.

Advocacy: speaking out on behalf of an individual or community

Advocacy takes place in many shapes, forms, and colors. Sometimes it's sticking up for yourself when your insurance company tries to deny your claim or your family members disagree with your decisions about how to take care of yourself. Sometimes you advocate for yourself, sometimes you advocate for others.

When you advocate for yourself and others at the same time, it's an especially powerful statement. Check out this recent letter to the editor about someone who is sticking up for herself and the MS community in voicing her concerns about recent proposals to cut Disability Lifeline - an important health care program for people living with MS.

How do you advocate? If you are looking for a way to advocate, check out this Action Alert that makes it easy to share your voice with elected officials.

Washington's budget becomes a little more clear...

Down in Olympia, the House Majority released its draft budget this morning. We are still analyzing it to see how it lines up with our priorities, but from a first glance, it's good news. The budget retains Basic Health and Disability Lifeline, and refrains from making major eligibility cuts to long term care. Budget writers have seen good news in recent weeks with an increase in available funding due to increased tax revenue and a decrease in demand for state services.

The Senate will release its draft budget shortly and then the two chambers will negotiate to come up with a final budget. All indicators point towards the legislature getting out on time, finishing up on March 8, though there is still plenty of time for that prediction to change.

If you are curious what an actual state budget looks like, check out the highlights, the agency break down, and the budget bill.

This afternoon, MS Activist Veronica Chase will be traveling to Olympia with me to share her perspective on the House budget. The hearing starts at 3:30pm and can be viewed online. We expect a packed house as other organizations like our own share their thoughts on the budget as well.

On Friday, I mentioned that I'd be testifying in favor of the health insurance exchange bill in the Senate Health & Long Term Care Committee. Yesterday's hearing saw a packed room and a long list of people wishing to testify. As such, we ran out of time before I could share my testimony, but there were many people in the room who shared our sentiment. Check out the hearing below - there were some very heated exchanges over the course of the hour plus hearing:

Another legislative update...

As the legislative session progresses, I want to provide you with another update so you know how the Legislature is dealing with the issues impacting the MS community. The budget remains the most pressing issue but legislators were rewarded this week with a positive revenue forecast, giving more leeway to budget writers as they figure out how to balance the budget while protecting important services like health care and education. We’ll be watching for the draft budget to come out in the next week or so, though it’s too early to say how our priority programs (long term care, Basic Health, Disability Lifeline, and Medicaid) will fare.

Unfortunately, our bill to limit out of pocket costs died in the Ways and Means Committee last week. A fiscal note was placed on it at the last minute (after our Day of Activism) and that made our work much more challenging. Thanks to many of you who reached out to your legislators to move the bill forward. We are looking at an alternative measure to achieve the same result and we are optimistic that in the end, we will find a way to limit prescription drug costs. Your presence at the Day of Activism has helped to remind legislators that they must find a way to deal with the high cost of health care for people with a chronic disease – so thank you for putting a face to the MS community. Our bill received some positive attention in the press – click here and here for those articles. If you look closely at the KIRO 7 segment, you’ll see MS Activists Dr. Eugene May and Lenita Fryxell at the 0:50 mark, waiting their turn to testify in favor of the bill.

On a positive note, legislation to create a health insurance marketplace moved out of the House this past week. We ran an Action Alert encouraging legislators to support the bill and we’ll be continuing to push for its passage through the Senate. On Monday, I’ll be in Olympia testifying in favor of the bill, reminding legislators of the need to promote more affordable and comprehensive health insurance for people living with MS. We are optimistic that the bill will provide protections for people with MS and other chronic diseases, but it’s too early to know for sure so stay tuned. Legislators have until March 8 to pass the bill before the legislative session is scheduled to wrap-up. If you haven’t already, use the Action Alert to send a message to your legislator, reminding them that health insurance exchanges will benefit the MS community.

To continue your advocacy efforts, I encourage you to attend the local “Town Halls” that many (but not all) legislators are hosting this weekend. Ask the offices of your legislators if they are hosting a town hall or look at this list. If you go, be sure to wear your orange scarf and don’t be afraid to ask legislators what they will do to protect services for people with MS and other chronic diseases. Ask them if they believe we should make cuts to long-term care. This is a great opportunity to introduce your friends and self-help group members to advocacy. Let me know how it goes! And share your story – tweet about it, post on Facebook, Facebook, or Facebook or just tell your family over dinner why advocacy is important to you.

And there’s more you can do to help raise awareness of MS. The Greater Northwest Chapter’s MS Ambassador program reaches out into the community to educate, inspire, and build awareness of the MS movement. Local Sam’s Clubs are raising money for us and we need people to run a booth on the following times. If you are interested in helping out or signing up to be an MS Ambassador, please email Lauren Spero, our volunteer manager-extraordinaire.

Friday, February 24
Auburn: 12 – 4pm
Renton: 12 – 4pm
Saturday, February 25
Auburn: 12 – 4pm
Renton: 12 – 4pm
Friday, March 2
Auburn: 12 – 4pm
Renton: 12 – 4pm
Saturday, March 3
Renton: 12 – 4pm

Finally, to stay up to date on our advocacy work, keep checking back here. Members of our state-wide Activism Committee will also be providing updates to the blog so be sure to check back on a regular basis. You can also visit our federal advocacy blog to stay informed of our efforts in Congress.

That’s it for now – thanks for your work in moving the MS community forward.

Meeting with Legislative Leadership

This morning, I had the privilege of meeting with Senator Lisa Brown, the Senate Majority Leader of our state legislature. Senator Brown has been a long time advocate for health care issues in our state so it was fitting that she met with a number of health care advocacy groups to talk about the budget.

In particular, Senator Brown spoke to the importance of saving many important health care programs - like Basic Health, Disability Lifeline, Medicaid, and Apple Health for Kids. Many people may wonder why the state has so many programs to take care of people's health care needs. A disease like MS has many faces and so do the citizens of our state. The health care needs of a child differ greatly from that of someone who can't work because of a disability and those may be different needs than a low-income worker who doesn't get health insurance through their job. Together, these programs make up the state's safety net. And they are carefully coordinated, because we know that today's worker may be unemployed tomorrow and their health care needs won't change even though their employment situation does.

When we see cuts in one state program, it impacts another. And for the last three years, we've been seeing deep cuts to all sorts of programs in the state's safety net. Plus cuts to K-12 education, colleges & universities, public safety & corrections, and our state parks. Nothing has been spared from the economic downfall.

During the economic downturn, legislators have been making significant reforms to deliver state services more efficiently. They've saved taxpayer money by reforming services like Disability Lifeline and Basic Health, but they likely can't keep reform their way out of our current $2 billion budget shortfall without significantly impacting people who depend on the state's safety net - including many people who live with MS.

At the meeting, health care advocates, including myself, urged Senator Brown to stop making cuts to our state's safety net. Too many people with MS rely on the state for their health care needs and they don't have anywhere else to turn if these cuts go through. In the afternoon, we shared this same message with Senator Karen Keiser, the Chairperson of the Senate Health & Long Term Care Committee. She's on our side, but it won't be easy to convince the public that these programs must be saved, no matter what it takes.

It's Time for Action

Welcome Activists to the first posting for It’s Time for Action! - the Washington edition. As Chair of Washington's Activism Committee and a member of Washington's Government Relations Committee of the National MS Society, I am hoping that this blog will be your go-to spot for information and the Call to Action for legislative activity in Washington state and beyond.

In Washington, three chapters of the National MS Society have a presence: the Greater Northwest Chapter, covering western and central Washington, the Inland Northwest Chapter covering eastern Washington, and the Oregon Chapter which includes Clark County in southwest Washington. We join forces in our advocacy efforts so while you may see some references to the Greater Northwest Chapter in our advocacy work, we actually represent all three chapters.

In addition, the Greater Northwest Chapter covers Alaska and Montana - two states with their own Government Relations Committees made up of locals who understand the issues facing people in their states. You'll hear more about these states on this blog as we move ahead.

For now, back to Washington state - With the toll our damaged economy is taking on the state budget, it is more important than ever that our legislators hear from this community. Washingtonians living with MS and other disabilities have been particularly hard hit over the last several years and Olympia needs to hear us and protect us!

There is an opportunity coming up for you to get your voice heard. Add this to your calendar, wear your orange scarf, and show Olympia that our community is vast, strong, and WE VOTE!

January 30th – Day of Activism in Olympia at the Capitol Building
If you have never attended the Day of Activism – you are in for a treat! This event includes an intensive educational session, speeches from legislators/staff members, and a lot of camaraderie among fellow activists before we head out to meet with our Senators and Representatives. Our legislators know that when the orange scarves arrive on campus, it’s time for business! Please bring along a few others – strength in numbers!

Maybe you want to carpool? Put it out there and see if someone else in your area needs a ride or wants some company for the drive to Olympia.

The special session is already underway and legislators are already considering how to balance the budget in light of the expected $2 billion shortfall. This is the place to find updates on the status of issues crucial to the MS community. Please take action when you see the Action Alerts. The Action Alert system is an easy and effective way to tell our state government that we are here and we are paying attention!

Again – welcome! Check back soon for more information about upcoming Activism events and remember…It’s Time for Action!

Cheers! - Holly Hawker