Going International: The HDSA Success Story

On Thursday I leave for Prague.  Not for vacation, but for the European Huntington´s Disease Network’s annual meeting where I’ve been asked to share the grassroots success story of the Huntington’s Disease Society of America.

Three years ago, thanks to an innovative grant from the National Health Council, I began working with the HDSA.  Representing a little-known neurological condition, the organization aimed to increase its political muscle and fix some serious health policy issues affecting people with HD.

The HDSA didn’t have a ton of money (still doesn’t).  But what they had was even more valuable: A community of patients, families, medical professionals and industry partners willing to take action and speak out to their elected officials and others about the disease.

Thanks to their staff and volunteer leadership, the results have been nothing short of remarkable.

Since we launched our campaign in 2007, awareness and support for HD has grown significantly in Washington, DC.  The HD Parity Act (HR 678), which would make it easier for people with HD to receive Medicare and Social Security Disability benefits, has nearly 150 cosponsors in the House and is about to be introduced in the Senate.

While we’ve not achieved our ultimate objective – enactment of the law – we’ve seen ongoing progress towards achievement of that goal.  Just last week, the influential Kaiser Health News published an article on our efforts.  It’s now not a matter of “if” the HD Parity Act becomes law, but when.

Unfortunately, in my experience, many organizations fail to harness the power of their own constituents to achieve their objectives.  Instead, they hire lobbyists to achieve their policy objectives, wish for a celebrity spokesperson, or think getting on Oprah or The New York Times is a sure-fire way to successes  Businesses often make the same mistakes.

Spreading the word through grassroots is admittedly more difficult and time consuming, and it’s much less visible and “ego-boosting” than a high-end media placement.  But its low-cost, high-return results can achieve great things and build long-term sustainability for future efforts.  The HDSA and its staff and volunteer leaders should be commended for their committment to this cause.


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