MS Activists Attend White House Event Celebrating the 20th Anniversary of the Americans with Disabilities Act

MS Activists Attending the White House ADA 20th Anniversary Celebration (left to right): Bill MacNally of Minnesota, Patrick Vanderpool of New York, Channing Barker of Oklahoma, and Jackie Jackson of New Jersey

(left to right) MS activists Channing Barker of Oklahoma, Patrick Vanderpool of New York, Shawn O'Neail, Jackie Jackson of New Jersey, Bill MacNally of Minnesota, and Shahieda DaSilva of New Jersey

On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law, stating that “It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.” Click here to view the full video or read the transcripts of the ceremony.

President Obama also shared his personal experience and the strength of First Lady Michelle Obama’s father, who was diagnosed with MS yet never missed a day of work and kept moving forward (viewable at approximately minute 33 of the full video). Ongoing efforts to ensure that the ADA realizes its full potential were also highlighted. These efforts include newly issued regulations from the Department of Justice protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards; upcoming rules that will promote the accessibility of websites; and the launch of the Year of Community Living initiative to uphold the principles of the Olmstead court decision and community-based care.

The celebration ceremony concluded with President Obama signing an Executive Order that establishes the federal government as a model employer of individuals living with disabilities—with the goals of better recruitment, training, and retention.

President Obama at the ADA 20th Anniversary Celebration

MS activists Channing Barker and Patrick Vanderpool with Senator Tom Harkin (IA)

Society Works with Reps. Kilroy and Thornberry to Introduce Legislation to Cover Off-Label Prescriptions for Medicare Part D Carriers

On Wednesday, July 14, Representatives Mary Jo Kilroy (OH-15) and William Thornberry (TX-13) introduced legislation that would allow Medicare Part D carriers to cover off-label drugs prescribed to people living with chronic disease, including MS, when its use is supported by peer-reviewed medical literature. The National MS Society worked closely with Reps. Kilroy and Thornberry and noted clinicians and other health organizations to draft, name, and introduce the new bill--the Part D Off-label Prescription Parity Act (H.R. 5732).

The Center for Medicare and Medicaid Services (CMS) Part D regulations currently prohibit coverage for off-label indications of non-cancer drugs other than those uses listed in designated pharmaceutical compendia included in the statute. Doctors, based on existing medical literature and their professional judgment, however, routinely prescribe medications for off-label uses, meaning the drugs are used for purposes other than those originally approved by the Food and Drug Administration (FDA). H.R. 5732 would work to correct this inequity and help people living with MS and other conditions access medically necessary and effective treatment that could vastly improve their quality of life.

To learn more about H.R. 5732, click here.

Americans with Disabilities Act 20th Anniversary Approaching

This July 26th will mark the 20th anniversary of President George H. Bush signing the Americans with Disabilities Act (ADA) into law. This landmark legislation established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities. Approaching the 20th anniversary of the ADA, the National MS Society celebrates the opportunities that the law has created and the rights that is has affirmed, while also continuing to work towards full implementation and advancement of other critical policies and legislation. The National MS Society will be participating in a collaborative ADA anniversary celebration in Washington, D.C.—“Spirit of the ADA…Lead On!” To learn more about ADA anniversary events happening in your area, click here. Further ways for MS activists to engage including instructions on how to issue a “Proclamation of Recommitment” may be found here.

Learn More About HealthCare.gov

Very recently, the Administration launched HealthCare.gov, a new online tool to connect consumers with information and resources to help them access quality, affordable coverage. HealthCare.gov makes comparison shopping easier with a new insurance finder that allows users to answer a few basic questions and receive information about insurance options that could work for them.

To learn more about this valuable new resource, join a conference call today, Tuesday, July 6th at 4:30 p.m. ET with senior Administration officials. To join the call, call (866) 793-1301 and ask for the “Health Care Website Call.” Captioning is available by clicking on this link prior to the call.

Support NIH Research and Progress

As the federal budget and appropriations process continues, it is vital for MS activists to advocate for robust funding for the National Institutes of Health (NIH). As the country's premier institution for medical research and the single largest source of biomedical research funding in the world, the NIH's work is tremendously important to people living with MS.

Click here to take action today and urge your U.S. Senators and Representative to support $35 billion for the NIH in Fiscal Year 2011.

Over the past decade, NIH's research has contributed to enhanced knowledge about the mechanics of the immune system, which in turn has led to a better understanding of MS lesions. These NIH discoveries are being used to gain more information about the potential causes of MS and different methods to alter the immune system response to treat MS. Dedicating $35 billion for the NIH in Fiscal Year 2011 would build upon this progress by permitting the NIH to pursue promising scientific and health advances for diseases and chronic conditions including MS.