Friday, June 29, 2012

The National MS Society's position on the Supreme Court ruling

Holly's post yesterday is a great reminder of the importance of the Affordable Care Act for the MS community. Here's the Society's official position on the ruling:

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis.
Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:
  • Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
  • Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
  • Elimination of annual limits: Similar to ―lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care.
  • Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
  • Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
  • Pathway for Biosimilars: The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies.
Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive.
On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness—typically diagnosed between the ages of 20 and 30s - prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court.
With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization. Our approach is to support legislation that is in line with those principles. We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS.

Thursday, June 28, 2012

The Supreme Court got it right this time!

Thank you Supreme Court! The Affordable Care Act is safe.

I don't know about you, but this morning was very emotional for me. I was somewhat prepared for the terrible news that the mandate was overturned (and the law gutted), but the shock and excitement that (almost) the entire law was upheld completely overwhelmed me. As activists we have supported Congress and our President in their effort to enact this monumental bill and desperately hoped for this outcome.

Although the States may opt out of the Medicaid requirement, Governor Gregoire has committed to continuing the process to help insure 500,000 Washingtonians through the expanded Medicaid   program. Jay Inslee has been an outspoken supporter of this law. Even Attorney General McKenna (who joined the lawsuit that got us to this point) expressed support for most aspects of the law in an interview with Robert Mak (KING5) today - although his support of the Medicaid expansion is questionable " long as the State can afford it". Governor Gregoire said that for the first few years, the federal government pays 100% of the Medicaid expansion, then 95%, then 90% going forward. I think we can come up with 10% of the cost of insuring an additional 500,000 citizens in our state.

Congratulations to our entire community!

Enjoy what this day means...

Cheers - Holly Hawker

Friday, June 22, 2012

Anniversary of the Olmstead Decision

While I don't usually just like to cut and paste from other sites, I thought it'd be worthwhile to share this press release from the White House about the anniversary of the Olmstead decision - a monumental Supreme Court decision that affirmed the rights of people with disabilities to live in their own home. It's a good overview of what the federal government is doing to promote the needs of people with disabilities.

Olmstead Anniversary
Please see announcement below from the White House as we observe the Olmstead anniversary.
Office of the Press Secretary
June 22, 2012
On Anniversary of Olmstead, Obama Administration Reaffirms Commitment to Assist Americans with Disabilities
On June 22, 1999, the Supreme Court ruled in Olmstead v. L.C. that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA).  The Obama Administration has made significant progress continuing to enforce Olmstead as well as more broadly helping to level the playing field for people with disabilities.
“Olmstead affirmed the rights of Americans with disabilities to live in their communities,” said President Obama.  “As we mark the anniversary of this historic civil rights decision, we reaffirm our commitment to fighting discrimination, and to addressing the needs and concerns of those living with disabilities.”
In April of this year, the Department of Health and Human Services (HHS) announced the creation (  of the Administration for Community Living (  (ACL), which brings together key HHS organizations and offices dedicated to improving the lives of those with functional  needs into one coordinated, focused and stronger entity.  ACL combined the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities into a single agency that supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia. This agency will work on increasing access to community supports and achieving full community participation for people with disabilities and seniors.
HHS also has worked closely with the Department of Housing and Urban Development (HUD) to develop and subsidize rental housing for very low-income adults with disabilities and implement the new Section 811 Project Rental Assistance Program, which will assist extremely low-income adults with disabilities in accessing integrated affordable housing.  Last month, HUD announced ( a new $85 million funding opportunity under the Section 811 program for state housing agencies that meet certain eligibility criteria, including having a partnership with a state health and human services agency and Medicaid agency, to provide essential support and services  that help people live in integrated settings in the community.  This funding opportunity works to align critical health and housing services and aims to assure integration by promoting Medicaid efforts to serve people in the most appropriate integrated setting.
The Department of Justice also continues to enforce the ADA and Olmstead.  Over the last three years, the Civil Rights Division at the Department has been involved in more than 40 Olmstead matters in 25 states.   Recently, in Virginia, the Department entered into a landmark settlement agreement ( with the Commonwealth, which will shift Virginia’s developmental disabilities system from one heavily reliant on large, state-run institutions to one focused on safe, individualized, and community-based services that promote integration, independence and full participation by people with disabilities in community life. The agreement expands and strengthens every aspect of the Commonwealth’s system of serving people with intellectual and developmental disabilities in integrated settings, and it does so through a number of services and supports.  The Department has a website ( dedicated to Olmstead enforcement, which includes links to settlements, briefs, findings letters, and other materials.

Monday, June 11, 2012

What if you bought a health insurance plan and it only covered generic drugs?

Seattle Times columnist Denny Westneat wrote a piece this weekend on the impact of a generic-only health insurance plan on a gentleman recently diagnosed with cancer. The column describes an attempt this past spring by Lifewise (a subsidary of Premera) to drop non-generic prescription drug coverage for its individual plan members. The Office of the Insurance Commissioner (OIC) and groups like the National MS Society and the American Cancer Society have been fighting this change though the insurers are pushing hard to sell health insurance plans with only minimal coverage. The big question - where do you draw the line between selling a comprehensive health insurance plan and an affordable health insurance plan? The National MS Society and other chronic disease groups believe a health insurance plan should cover your health care needs, no matter what condition you have. Some insurance companies just want to sell cheap insurance plans. What should we allow in the marketplace?

Friday, June 8, 2012

And why is non-profit advocacy so important???

Lots of good stuff on the internets these days. Check out this article from a former Capitol Hill staffer and patient advocate on why we need to be doing what we are doing: Don't give up on advocacy

He points to some pretty strong evidence as to the power of non-profit advocacy - at least 28 states have smoking bans in place. Before the American Cancer Society took up this banner, only 1 state had such a law. Pretty cool, eh?

What makes a good advocate?

Here's a great blog post from an MS Activist about how to do advocacy well: Effective Advocacy is Personal.

I really like how the author writes about the power of a personal story. It's so true that a legislator can oppose you on policy grounds, but they can't oppose your story. You may not win every time, but if you share your story, you can make a personal connection with that person, and over time, you'll win more often than you lose.

One of the reasons I came to work for the National MS Society is because of the opportunity I have here to tell stories that need to be told. When I was working in Olympia for a state senator, so rarely would we actually talk to someone impacted by the policies we were making. We'd talk to lobbyists, business leaders, executives, but rarely would we actually talk to the people whose lives were going to change because of these decisions that would be made. Imagine how different the world would be if people with MS had a seat at the table whenever laws were made that impact their lives. It's possible - we can do that. We just have to work together.

Wednesday, June 6, 2012

What makes a community accessible to all? We need your input...

The City of Seattle and its Waterfront Program are committed to creating a waterfront for all that reconnects the city to its waterfront and improves access and mobility for everyone. Join Waterfront Program staff and the Seattle Commission for People with disAbilities for a roundtable discussion of critical issues and priorities to consider when designing for all levels of mobility.

Accessibility Discussion
Wednesday, June 20, 2012
3:30 p.m.
2100 Building
2100 24th Ave. S., Seattle

ASL interpretation will be provided.

Please RSVP or request other accommodations by June 15 or call 206-499-8040.

The 2100 Building is an accessible venue located on 24th Ave. S. between S. Hill St. and S. Walker St., one block east of Rainier Ave. S. It is served by the 7, 9, 34, 42 and 48 buses and is about half a mile from the Mt. Baker light rail station. Parking is available on the street and in a street level garage accessed from the alley.

Monday, June 4, 2012

Who benefits from health care reform in Washington?

Washiington's Office of the Insurance Commissioner (OIC) asked this question and they have a pretty good analysis that describes the number of people, county-by-county, who will benefit from the Affordable Care Act.

The OIC report shows that people in every corner of the state will benefit. Take a look at the report to see how many of your neighbors will have access to health insurance in 2014.

The Presidential Campaign and MS

Both candidates in the race to be our next president have intimate connections with multiple sclerosis. Mitt Romney's wife, Ann was diagnosed with MS in the mid-90's and served on the board of a National MS Society chapter in Massachusetts. Barack Obama's father-in-law also lived with MS, and his wife Michelle has talked publicly about the impact that had on her life.

Now, we get a campaign video talking about the impact that MS had on the Romney family. Check it out here:

And for some good perspectives within the MS community on the overall impact of the experiences, visit our friend Trevis Gleason's blog post on this topic.

Friday, June 1, 2012

Political debates of the future

As a hub for technolology, it makes sense that Seattle would be on the cutting edge of innovative ways to engage the public in the political process. One exciting opportunity is a gubernatorial debate scheduled for October 6 in Seattle, being organized as part of the Seattle Center's Next 50 celebration. The debate will have intense audience participation and allow folks both in the audience and those watching the debate online or on TV to participate as well via text messaging and Twitter.

Learn more at

Mark your calendars for October 6. Stay tuned for more information. And thanks for our friends at AARP for letting us know about this opportunity.