Health Care Reform

Beyond the Shouting

Article Highlights:
  • MDA's Advocacy team identifies several health care issues of importance for those within the MDA community.
by Annie Kennedy on October 1, 2009 - 10:59am

QUEST Vol. 16, No. 4

Unless you spent the past several months stranded on a desert island, you’re probably aware that the Obama administration has been involved in debate over proposed health care reform.

Annie Kennedy

Through the confusion, flaring tempers and protests that dominated the summertime news reports, one important point became clear: Americans are passionate about the future of the system that’s supposed to care for them.   

As a key stakeholder in these discussions, I hope you’ve taken some time to understand and reflect on what the proposed health insurance changes could mean for you and your loved ones, and which changes might have a profoundly positive impact on your access to medical care and quality of life.

MDA has been engaged in some of these discussions about health care reform and we want to be sure we’re reflecting the needs of our MDA community as the conversation continues over the coming weeks.

MDA has identified several issues as priorities.  

Comparative Effectiveness Research: The efficacy of medical interventions and treatments should be measured by clinical effectiveness, not cost effectiveness, and should be outcome-based.

Evidence-Based Medicine: Increased emphasis should be placed on establishing and implementing clinical care standards based on solid scientific evidence that they work.  

One Size Does Not Fit All: All patients are not created equal and thus blanket policy changes aimed at reducing spending may actually cost more money within specialized patient communities.

Portability and Better Coordination of Medical Care: Our current system of fragmented medical care often has devastating implications for our community.

If you have not already done so, please share your thoughts and concerns with us online on myMDA’s advocacy pages, or by e-mailing our advocacy team at, or by contacting your local MDA office at (800) 572-1717.

MDA also strongly encourages you to reach out to your elected officials to make sure they’re considering your needs when shaping these critical policy changes. Contact information for your congressional representatives can be found at or by calling your local MDA office at the number listed above. Check MDA’s Advocacy Web pages for news as the health care debate evolves, as well as for updates on other important legislation we’re tracking.  

Remember, your elected officials need to hear from you. Please help us ensure that the priorities and concerns of our neuromuscular community are well-known by our congressional leaders by joining your voice with ours; there is great strength in our MDA community.

MDA’s Advocacy Department recently launched a quarterly e-newsletter, MDA Voice. If it hasn’t arrived in your e-mail inbox, sign up on the Advocacy page or contact your local office (800-572-1717).

Annie Kennedy is MDA’s vice president for Advocacy. She’s based in Washington, D.C.

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