Another win for the MS community - this time in the courts

It's very difficult to sort through the news and find good things happening to the MS community. Sure, there are some stories about new drugs coming on the market, but for people with progressive MS or those unable to afford their drugs (and heck, for anyone with MS), it's still a tough go.

However, the National MS Society took to the courtroom for the latest advocacy battle to increase access to medical care for people with MS. And a settlement was just announced that allows people who don't show improvement in their health to still qualify for much needed Medicare services like skilled nursing and rehabilitation therapies. Formerly, the "improvement standard" required that individuals must show improvement to received care rather than just have a demonstrated need. This is incredibly significant for people with a progressive condition like MS or Alzheimer's.

This New York Times article has a good summary of the effort that led to this decision. It's something that the MS Activists everywhere can be proud of. In Washington, we are tackling a similar challenge to get rid of the improvement standard in private health insurance. Unfortunately, because of our state laws, we can only impact plans sold in the individual and small group markets, not the self insured market that large companies like Boeing or Microsoft use to provide health care to their employees. Stay tuned for more information about how you can help this effort.

How are you your own self-advocate?

Advocacy is all about sticking up for something or someone. My type of advocacy means sticking up for the MS community when laws are being debated that impact people with MS. It's systems advocacy. But another type of advocacy that can't be understated is self advocacy. The National MS Society has all sorts of resources to help you be a self advocate, your own advocate.

I frequently talk to people who have great success stories of self-advocacy. It's neat to hear how just a little bit of persistence can pay off. This article in the Wall Street Journal has some great suggestions as to how you can be a self-advocate for yourself if you are on Medicare.  Over half of people who appeal a denial for a Part B claim are successful. Pretty good odds as I see it.

If you have questions about self-advocacy, or want some tools to help you be the best self-advocate, give us a call: 1-800-344-4867.

How are you your own self-advocate?

Answer the call - become an MS Volunteer

Earlier this week I was honored to be invited to the Greater Northwest Chapter's Annual Meeting in Seattle. The positive and exciting information shared regarding the "state of the chapter" reinforces my belief that the National MS Society is a strong and efficient organization that is committed to supporting everyone living with MS and, ultimately, a life free of MS.

Awards were presented for Corporate Partner of the Year, Distinguished Service, MS Achievment, and close to my heart - Volunteer of the Year.  This year the award for Volunteer of the Year went to a dear friend of mine (and probably of a lot of you too) - Trevis Gleason. You may know Trevis from numerous speaking engagements and his blog for Everyday Health (http://www.everydayhealth.com/blog/trevis-life-with-multiple-sclerosis-ms/).

What you may not know is that Trevis is kind of considered the best "ask" in the business and he has been known to open a lot of wallets for MS with his efforts. This time when Trevis got up to accept his award and "ask" something of all of us, it wasn't to open our wallets, but to ask all of us to commit to promoting Volunteering with the MS Society. He asked us all to commit 20 minutes per week telling our story and encouraging as many people as we can to volunteer. You can do that - right?

There are so many different opportunities to contribute to the work of the National MS Society - participate in the Walk and BikeMS, work in the office a few hours per week, help with a support group (or start your own), provide peer support or, like I do, get involved in Advocacy. We need all the voices we can get contacting our federal, state, and local representatives to educate them on the needs of the MS Community. Join us in Olympia for the Day of Activism in January - our legislators pay attention to those orange scarves! http://www.nationalmssociety.org/chapters/was/volunteer/index.aspx

Please honor my friend Trevis and his wish to increase the volunteer efforts at the National MS Society. As someone famously said "it takes a village" and we ARE that village - 20 minutes is all we ask.

Hope to see you in Olympia! - Holly

Holly Hawker
Chair, Activism Committee

Now want to learn about your own health insurance plan?

Now that you know all about our country's health insurance system, you can get up to speed on what's actually covered in your health insurance plan.

For more information, check out this notice from Washington's Insurance Commissioner:

New health reform requirement helps consumers compare plans: A part of the federal Affordable Care Act taking effect next week requires all health plans to provide current and potential enrollees with new tools to help them understand what’s covered in the health plan and how much services will cost. Starting Sept.23, when a health plan renews or if consumers are searching for a new plan, the insurance company must provide a standard form explaining what it covers, how much specific benefits cost, and a standard glossary of health coverage and medical terms. The new Summary of Benefits form (http://cciio.cms.gov/resources/files/sbc-sample.pdf) will give:

·         Answers to important questions such as the overall deductible, if there’s an out-of-pocket limit, if clients need a referral to see a specialist and why these questions matter.

·         A list of common medical events and what clients will pay if they use a preferred provider or an out-of-network provider, and any limitations or exceptions.

·         Examples of what the plan covers and what it doesn’t cover.

·         A sample of typical coverage and costs for two conditions: Having a baby and managing type 2 diabetes.

Want to learn about health insurance, but don't know where to start?

Health care. Health insurance. Health reform. What do these words even mean? How is anyone ever supposed to learn about our health care system? I think we may have an answer.....read on.

The health care reform law is very complex and no one has the time or expertise to read through the whole law. It's actually a combination of two laws passed by Congress, so you'd have to read through this 974 page compilation of the two laws or review each of the 55 page and 2409 page bills to get through everything that we know as the Affordable Care Act.  Don't ask me how you add up a 55 page bill and a 2409 page bill to get to 974 pages - I'm not a math major.

And yet before you can even begin to understand the new law, you of course have to understand the system it was designed to change. So it's not easy, not simple, and not for the faint of heart. We've seen a few resources to help people understand the health care law (like this great Youtube video) but they don't go into many details to help your average consumer understand our current health insurance system.

I've found something that may answer some of your persistent questions: Health Insurance 101, a comprehensive, easy to read introduction to health insurance from Community Catalyst and the Center for Health Insurance Reforms at Georgetown University Health Policy Institute.

The website explains our current system and how the Affordable Care Act will change it. It has some disturbing information, especially the memo that details how insurance companies deliberately set out to exclude people with a chronic disease from their plans.

Now, the website only goes into the details of health insurance - it doesn't actually talk much at all about health care. But if we can understand how health care is paid for, hopefully we can get a better idea of how we can go about improving it.

Health Insurance 101. Spread the word.

When we unite, we can win.

This editorial, by two lead sponsors of the Americans with Disabilities Act, lays out a pretty convincing argument that the needs of people living with disabilities must be addressed in our national campaigns. As a huge voting bloc (57 million Americans live with a disability), the disability community should get a fair amount of attention from leading candidates for public office. However, for too long, we've been fairly un-organized and only after our narrow subset of issues. For people living with MS, that means particular attention to access to health care (like prescriptions, durable medical equpiment, physical therapy) and general accessibility within the community. Those may not be the major concerns of other people with a disability, who instead are passionate about education or other issues.

That's beginning to change. At the federal level, the disability community has long had a number of coalitions aimed at furthering the lives of people with disabilities, like the Consortium for Citizens with Disabilities. Here in Washington, the National MS Society teamed with other disability organizations like the Arc of Washington and the Directors of Disability Organizations to host a meeting of disability advocates on Friday, September 14. We met to see if we could start a disability coalition that would unite the concerns of all disability advocates in the state around a few important issues. If we could focus all of our united efforts on a common cause, I know we'd have a stronger impression on legislators than if we went at it alone. Stay tuned for more as this effort continues....

What do we want from our politicians?

Avid politicos likely heard mention of multiple sclerosis at both the recent Democratic and Republican National Conventions. With Ann Romney having MS, and Michelle Obama's father having MS, it's something that both major presidential candidates understand on a very personal basis. What does this mean for their political agendas? Great question. I think this recent guest commentary from Colorado raises some good points that I hope both campaigns think long and hard about.