Friday, March 30, 2012

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.

Monday, March 26, 2012

Celebrate The Affordable Care Act!

As we enjoy the anniversary of the Affordable Care Act and everything it is doing for all Americans, we need to keep in mind that the Law is being challenged from all directions, and most importantly – in the Supreme Court!  As this hallowed body deliberates the legality of various components of the bill, the rest of us stand to lose so much.

It is my na├»ve, hopeful, and somewhat educated belief that the Affordable Care Act will be upheld by the Supreme Court. However, that will not protect the Law from members of Congress and State government (including Washington’s own Attorney General and candidate for Governor) who want to see the accomplishments of the Affordable Care Act repealed.

 Among all of the wonderful aspects of this law, the special significance to the MS community is the protection of people with pre-existing conditions, which will fully take effect in 2014. This tenant of the Affordable Care Act alone makes this legislation the most significant legislation for people with chronic disease that we have ever experienced.

So next time someone criticizes “Obamacare”, remind yourself and them, what this law means to the MS Community. We DO Care!

 Remember – It’s Time for Action! Washington

Cheers – Holly

Thursday, March 22, 2012

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.

Thursday, March 15, 2012

MS Awareness Week

I'm often asked, "what's advocacy?" Simply put, it's raising awareness of important issues with our elected officials. Since it's MS Awareness Week, I thought it would be worthwhile to see how we are raising awareness of MS outside of the advocacy realm.

Besides Facebook, Youtube, a new social network, and a whole lot more, we are taking our message of MS awareness to the airwaves. Check out these two spots from Q13 news talking about MS Awareness Week and Seattle's Walk MS coming up on April 15. It's nice to see some publicity in our local media.

Workshop on Housing Accessibility

Seattle Office for Civil Rights and King County Office for Civil Rights are co-sponsoring a Housing Accessibility workshop at City Hall on June 6th. Two fair housing experts will speak about accessibility requirements under the Federal Fair Housing Act, the ADA and Washington State Building Code Accessibility Compliance.

The agenda includes:

8:00 – 8:30 Registration
8:30 – 8:45 Welcome and Opening Remarks
8:45 – 12:00 Design and Construction Requirements of the Fair Housing Act
12:00 – 1:00 Lunch (not provided, please plan accordingly)
1:00 – 2:00 Accessible Routes
2:00 – 3:00 Accessible Public and Common-Use Areas
3:00 – 3:15 Break
3:15 – 4:45 Practical FHA & WA State Building Code Accessibility Compliance

Please share this information with others who might be interested.

Register by emailing

Tuesday, March 13, 2012

The financial strain of MS everywhere

Members of the MS community know that MS is an expensive disease. It keeps too many people from working and the disease modifying therapies are very costly. There's repeated trips to the doctor, vacations that must be cancelled due to exacerbations, and long term care that must be planned for.

Because of that, people with MS often need extra help. And often, that help comes from the government. I just read an article in the Yakima Valley Herald about a woman with MS who needed some help from the federal government to purchase a home. With some small help to come up with a down payment, the woman is able to find a home that costs her less than she would pay in rent. Ideally, we'd all prefer to pay less taxes, but when I read about a success story like this one, I'm glad to know that we can sometimes make a small up-front investment that makes good financial sense for everyone.

Friday, March 9, 2012

Congress listens - and responds - to the MS community

Volunteers and staff from the Greater Northwest Chapter, along with members of the MS community from all over the United States, were in DC this week for the National Multiple Sclerosis Society Public Policy conference. This conference is a wonderful opportunity for activists to learn about the legislative agenda and get face time with our representatives. Lisa Emrich blogged from the meeting, so check out what she had to say.

As a past attendee, I can tell you that THIS IS THE PLACE TO BE if you want to understand what the Society’s representatives focus on and face when meeting with and educating our members of Congress. The current political climate is a little tough on us activists, but the good news is that 30 Senators and a quarter of the House are members of the MS Caucus. We have support and those members continue to come through for the MS Community.

Some policy issues and wins you may not be aware of are:

Social Security Compassionate Allowance Listing
On October 13, 2011, the Social Security Administration (SSA) added Malignant Multiple Sclerosis to the Compassionate Allowances Listing, which helps the Administration quickly identify and target the most disabled individuals for priority approval of Social Security Disability Insurance (SSDI) benefits.

Medicare Improvement Standard
In January 2011, the National MS Society joined four health advocacy organizations and a number of patients as plaintiffs in a class-action lawsuit that seeks to ensure that patients are not denied physical, speech, or occupational therapy based on the grounds that the individual’s condition is stable, chronic, or not improving, or that the necessary services are for “maintenance only.”

Improving Access to Neurological Care
In March 2011, a bipartisan bill was introduced to add neurology to the list of physicians eligible for the Primary Care Incentive Program. Under this program, the government provides a 10 percent bonus payment to primary care Medicare physicians who specialize in family medicine, internal medicine, geriatric medicine, and pediatric medicine. Including neurologists in this program will help to improve access to neurological care for Medicare patients living with MS and may encourage more doctors to choose neurology as a specialty. (Bill referred to Senate Finance Committee.)

Adult Day Achievement Center Enhancement Act (2011)
This legislation is designed to expand and enhance existing Adult Day programs that provide care and support for individuals with neurological diseases or conditions, such as multiple sclerosis, Parkinson’s disease, or traumatic brain injury. It will establish a competitive grant program to fund Adult Day programs which support the needs of a younger adult population and veterans living with neurological conditions, reduce the strain on family caregivers, and help to maintain or improve functional abilities or to prevent the onset of complications associated with severe forms of the disease or condition. (Bill referred to House Energy and Commerce, Subcommittee on Health.)

National Neurological Diseases Surveillance System Act (2011)
This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including MS. Familiar with the out-dated estimate of 400,000 Americans living with MS? We would finally get a more accurate estimate of the incidence of MS in the US. Information regarding the natural history, prevention, detection, management, and treatment of the disease, including outcome measures, would be collected and stored by the Centers for Disease Control and Prevention (CDC). Information existing in various smaller databases and registries may be combined into one larger national database with stringent privacy and security protections. (Bill referred to Senate Health, Education, Labor, and Pensions Committee.)

These issues had a lot of support in the last session and we hope the MS Caucus and the rest of Congress will take these on again this year. Please contact your congressional delegation and let them know how important these issues are to their constituents. Make a phone call, send an email, or schedule a face to face visit. Our representatives need to know that the MS community cares and VOTES!

It’s Time for Action! Washington

Cheers - Holly Hawker, Activism Committee Chair

Friday, March 2, 2012

What's Congress doing about MS?

It's always a great question - what are our elected officials back in Washington DC doing about MS? I'm about to find out as I join other MS Activists from Alaska, Montana, and around the country for the Society's annual Public Policy Conference next week. We will be lobbying members of Congress asking for additional funding for MS research and respite help for caregivers. Members of Congress have been responsive in the past - most of Washington's delegation for example, are members of the MS Caucus, dedicated to raising awareness of MS in Congress. In Alaska, Senator Murkowski has supported efforts to create an MS registry and in Montana, Senator Tester stopped by the 2011 Bike MS. It's great to see elected officials responsive to the needs of their constituents.

We all want more research to stop disease progression, restore function, and end MS forever and the federal government is by far the largest funder of MS research. We understand the need to get a handle on the deficit, but we can't do that by ignoring the pressing needs of the MS community and our efforts to find a cure for MS. So, we'll be asking members of Congress to think about the MS community when they create their budget.

To learn more about the Public Policy Conference, check out the National MS Society's blog where you can get regular updates all next week.

Competitive healthcare marketplace passes the Senate!

With the passage of HB 2319 last night, Washington state becomes one of the nation's front runners in setting up a health benefits exchange - the insurance marketplace set out in the Affordable Care Act. The marketplace will gives consumers more control, quality choices, and better protections when buying insurance. When rolled out in the fall of 2013, it will be an easy-to-use website, similar to Travelocity or Consumer Reports.

The passage of HB 2319 was a major priority for the National MS Society this past session and we are grateful to the MS Activists and legislators who pushed for its passage. We know many people with MS have a difficult time finding an affordable insurance plan with comprehensive benefits and we expect the process of comparing plans to be much simpler when the marketplace starts to offer plans.