Bringing Our Message to Capitol Hill

Dec 24, 2014

The Alopecia Areata Legislative Liaison program began in 2012 with just 12 volunteers who were selected for their willingness to engage congressional representatives and senators about issues involving the alopecia areata community. Since then, the program has increased dramatically both in size and efficacy. In September 2014, 15 Legislative Liaisons from 11 states joined NAAF’s retired President and CEO Vicki Kalabokes, Communications Director Gary Sherwood, and Chief Administration Officer Jeanne Rappoport to meet with the health aides of 30 senators and congressional representatives at their offices in Washington, DC. The Legislative Liaisons asked for their lawmakers’ support in advancing alopecia areata research—particularly in three key areas, all of which are critical components of the Alopecia Areata Treatment Development Program:

1)      Support an allocation of $32 billion for the National Institutes of Health (NIH) in fiscal year 2015 to provide the agency with adequate resources for expanding its alopecia areata portfolio and funding further groundbreaking medical research that looks promising, such as the JAK inhibitor studies at Columbia University.

2)      Create new incentives for industry and promote treatment and diagnostic tool development by cosponsoring H.R. 3116, the MODDERN Cures Act.

3)      Request that the Center for Medicare and Medicaid Services rewrite current policy to make Medicare benefits available to patients who require cranial prosthetics as a result of alopecia areata. As it stands now, Medicare only covers cranial hair prosthetics for “secondary alopecia” (i.e., hair loss caused by chemotherapy and other temporary reasons), and excludes alopecia areata. In the course of our meetings, we learned a California representative may soon be introducing new legislation that would remedy this situation. We’ll keep you posted as soon as we hear more.

Megan Reiter, a liaison who attended the legislative meetings with her 8-year-old daughter Mia, said, “We had such an amazing time! Mia still talks about the new friends she made—even though they are ‘big’ and not kids. She is starting to understand how she can help others with the same condition she has—and I’m just proud and happy to be part of an organization that is helping to make a real difference in the lives of the people and families that navigate alopecia areata every day.”

Now in its third year, the Legislative Liaison program is open to anyone in the alopecia areata community who wishes to establish and cultivate relationships with their U.S. representatives and senators in order to educate them about alopecia areata and encourage their support for our legislative objectives. Liaisons are assured, well-informed Americans speaking on behalf of themselves and their 6.5 million fellow citizens who share this disease. If you’re interested in learning more about the Alopecia Areata Legislative Liaison program, or even becoming a Legislative Liaison yourself, please contact Gary Sherwood at gary@naaf.org or 415-472-3780. 

Legislative Liaisons Lead Push for Research Funding, Treatment Development, and Insurance Fairness
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