Keeping In Touch

As our newly elected and incumbent representatives and senators prepare to take up the nation’s business this month, I’m reminded of a quote by former Secretary of Health, Education and Welfare and Common Cause founder John Gardner: “The citizen can bring our political and governmental institutions back to life, making them responsive and accountable, and keep them honest. No one else can.”

A wonderful example of this came along a few months ago, when the Centers for Medicare and Medicaid (CMS) attempted to address widespread vendor fraud and an increased citizen demand for power wheelchairs by making it harder to get them approved. The new eligibility requirements for complex power mobility devices limited access only to those unable to transfer by standing and pivoting.

At MDA we immediately realized that people with progressive diseases, who may be able to do a pivot transfer today but not tomorrow, would have been denied approval for the advanced wheelchairs necessary for independence, health and safety.

In addition, CMS reduced power chair reimbursements to vendors by up to 41 percent, further burdening consumers and organizations like MDA, which provides those we serve with $2,000 in financial assistance toward the purchase of a wheelchair prescribed by an MDA clinic physician.

Inspired in significant part by MDA, there was an outpouring of protest. Letters came from national organizations and individuals concerned about losing benefits and independence. MDA National Chairman Jerry Lewis and the Steering Committee of the MDA National Task Force on Public Awareness each wrote forceful letters urging that the policy be postponed and re-evaluated.

I’m pleased to say the planned changes were revised just days before they were to take effect. The revision maintains the eligibility of people with “a neurological condition, myopathy or congenital skeletal deformity.” In addition, some power chair reimbursements to vendors were slightly increased.

Clearly, it pays to be vigilant.

Vigilance also should be the watchword when preparing your 2006 tax returns, as the article on page 44 explains. And don’t overlook the sources of help outlined in “Assistive Technology Funding Challenge,” page 46.

If your New Year’s resolutions include having fun (and I hope they do), check out the cover story about swimming with dolphins (page 40) or learn about accessible travel options in “Oh, the Places You Can Go” (page 34).

At MDA, our New Year’s resolution is to continue the pursuit of our primary goal: finding cures and better treatments for muscle-wasting diseases. Following the many remarkable research advances of 2006, this year promises to be extraordinary. Just see the dozens of reports in “Research Updates” (page 16).

Along with discovery and triumph, 2007 undoubtedly also will hold many challenges for all of us. I wish you the best and leave you with the reminder that, with MDA, you don’t face your challenges alone.

Gerald C. Weinberg President & CEO

6 Quest

QUEST

The Magazine of the Muscular Dystrophy Association

MDA was founded in 1950 by adults with neuromuscular diseases and parents of children with these disorders. It’s a voluntary health agency working to defeat neuromuscular diseases through worldwide research, comprehensive services, and professional and public health education.

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2007, No. 1