An update on the generic only issue

This summer, the National MS Society has been closely watching the development of Washington Insurance Commissioner Mike Kreidler's rules that require insurers to offer brand name prescription drug coverage rather than just coverage of generic drugs. As people with MS know, there is no generic drug to treat MS (the brand name drugs on the market will have a "generic" biosimilar in the future due to the Affordable Care Act) and so an insurance policy without brand name drug coverage is just about meaningless to someone with MS.

We sent out an Action Alert on this issue and 137 people responded - an incredible response, but one that shows how important the issue is to people with MS. MS Activists also spoke at a recent hearing in Olympina on the issue.

Along with other chronic disease organizations like the American Cancer Society and the Arthritis Foundation, we submitted a statement to Commissioner Kreidler in support of the regulations. See that statement here.

Fore more information on the issue, see this blog post or this news article that mentions multiple sclerosis as a reason why the changes needs to be made.

Over 50 Organizations, including the National MS Society, unite for a presidential campaign forum on disabilities

Here's a press release I ran across that may interest many in the MS community:

The National Forum on Disability Issues, scheduled for September 28^th in Columbus, Ohio is set to provide presidential and state candidates with the opportunity to provide their positions on a wide variety of disability issues directly to the disability community.

The Forum has also officially launched their new, interactive website, www.nfdi.org and encourages Americans with disabilities, their families and caregivers, and the organizations that serve them to visit the site and attend the Forum.

This website provides important information for attendees, sponsors, media, and all Americans concerned with where the 2012 Presidential candidates stand on issues critical to the 57 million people with disabilities in this country. The forum will be held from 12:30pm- 3:30pm EST on September 28, 2012 and will feature time slots for the candidates to share their visions for the future of disability policy. President Barack Obama and presumptive Republican Presidential candidate Governor Mitt Romney, as well as U.S. Senator Sherrod Brown and Republican challenger Josh Mandel, the Ohio Senate candidates, have been invited.

“The National Forum on Disability Issues, the only national Presidential event to focus on issues specific to the disability community, is a great opportunity for both President Obama and Governor Romney to make their stances on disability issues clear. Over 14.7 million Americans with disabilities voted in the 2008 election. With 1 out of every 5 Americans living with a disability today, their voices and their votes will play a critical role in the 2012 election,” said Sue Hetrick, Director of Public Policy/The Ability Center and Coordinator of the Ohio Disability Vote Coalition. “We are thrilled to launch our new website, and encourage everyone to visit it, register to attend or watch the webcast, and add your support to our call for the Presidential campaigns to come to Ohio and speak about the issues that matter the most to the disability community.”

The forum is sponsored by over 50 organizations, including:

National

• American Association for People with Disabilities
• American Association on Health and Disability
• American Diabetes Association
• American Physical Therapy Association
• Amputee Coalition
• Association of Assistive Technology Act Program
• Association of University Centers on Disabilities
• Bender Consulting
• Caring Across Generations
• Consortium for Citizens with Disabilities (CCD)
• CSAVR
• Disability Rights Education and Defense Fund (DREDF)
• Easter Seals
• Epilepsy Foundation
• Hearing Loss Association of America
• Hemophilia Federation of America
• Jewish Federations of North America
• Jewish Funds for Justice
• Lutheran Services in America
• Mosaic
• National Association for Homecare and Hospice
• National Association of State Head Injury Administrators (NASHIA)
• National Association of States United for Aging and Disability
• National Center for Learning Disabilities
• National Council on Aging
• National Council on Independent Living
• National Diabetes Association
• National Disability Rights Network
• National Down Syndrome Society
• National Federation of the Blind
• National Multiple Sclerosis (MS) Society
• National Organization on Disability
• National Youth Leadership Network
• Paralyzed Veterans of American
• PHI National
• Self Advocates Becoming Empowered (SABE)
• Sibling Leadership Network
• The Access Center for Independent Living
• The Arc of the United States
• The Daniel Jordan Fiddle Foundation
• United Cerebral Palsy
• United Spinal Association
• Yoshiko Dart

State/Local

• CareSource
• Down Syndrome Association of Central Ohio
• Mary Cariola Children’s Center
• Ohio Abilities Network
• Ohio APSE
• Ohio Association of Goodwill Industries (OAGI)
• Ohio Disability Vote Coalition
• Ohio Down Syndrome Advocacy Network (ODAN)
• Ohio Olmstead Taskforce
• Ohio SILC
• The Arc of Ohio
• The Ohio State University Nisonger Center (UCEDD/LEND)
• University of Cincinnati UCEDD/LEND

For more information about the forum, please contact Sue Hetrick / 866-575-8055 / shetrick@abilitycenter.org.

For Sponsorship Information Contact: Kate Josephson / 202-776-0406 / kjosephson@ucp.org.

Want to know more about the new health care law?

Here's your opportunity. The US Department of Human & Health Services is hosting a teleconference to help you learn about www.HealthCare.gov - a great website to help you learn about the Affordable Care Act. Sign up for the August 21st webinar (11am Pacific time) here.

Other webinars can be found here, though most of them are targeted to specific regions.

If you want still more information about the Affordable Care Act, two great websites at the Kaiser Family Foundation and Families USA.

You can also learn about the National MS Society's efforts around health reform on our website.

Senator Murray raises awareness of MS

In a recent press conference discussing the debt, Senator Patty Murray (Wash.) talked of the struggles her family faced growing up because of the impact of her father’s MS.  Her stay-at-home mom had to not only be the caregiver to seven children, but not to her husband as well AND become the breadwinner. 

Senator Murray is a member of the MS Caucus and a supporter of many of the National MS Society's priority issues.

Interested in how the federal health care law will affect women?

"Health Reform Has Washington Women Covered" Workshops

There's a new health reform law that will give women better access to the health care you need at a price you can afford. You can learn more at an upcoming workshop in your community. You'll learn how the health reform law is already working in our state, the benefits & protectons on the way, and how a recent Supreme Court decision impacts the law. 

Seattle/Tacoma - Tuesday, July 10th, 6:30- 8:00 PM
Highline Community College, Building 8, Mt. Olympus Conference Room
South 240th Street & Pacific Highway South, Des Moines

RSVP: Maha Jahshan (maha@weareoneamerica.org, 206-452-8408)

Everett - Thursday, July 19th, 6:30- 8:00 PM 
Everett Community College, Gray Wolf Hall
2000 Tower Street, Everett
RSVP: Courtney Normand (courtney.normand@ppvotesnw.org, 425.870.9688 )

Yakima - Thursday, July 19th, 6:30- 8:00 PM
Planned Parenthood Health Center
1117 N. Tieton, Yakima

RSVP: Jen Ham (jen.ham@ppvotesnw.org, 509.834.3990) 

Please RSVP to join us, or to let us know you'll need a language interpreter, childcare, or disability accommodation.  Don't see your community on the list? Let us know and we may bring a future workshop to you.  

Looking forward to seeing you at a workshop soon! 

Emily at Northwest Health Law Advocates

Should health insurance plans be required to cover MS drugs?

Insurers in Washington are looking for ways to cut the cost of their individual plans. One option is to remove brand name drug coverage. Premera did that in its Lifewise catastrophic plan a few years ago, and when Regence and Group Health tried to counter by doing the same, the Insurance Commissioner's office stepped in to say that access to at least some brand name drugs must be available for those that need them.

To learn more about this trend, check out this recent article that cites the high cost of MS drugs as a reason why people need insurance coverage.

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.

Background

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.