Legislative Liaisons Speak for YOU on Capitol Hill

Oct 01, 2018

Since this year’s Day on Capitol Hill, we have added four new co-sponsors to H.R. 2925, bringing the total number of co-sponsors to 22. This is entirely due to the hard work and tenacity of our Legislative Liaisons. 

Once again they came from all over the country — Coral Gables, Florida; Minneapolis, Minnesota; Mountain View, California; Menomonee, Wisconsin; Walpole, Massachusetts; Chicago, Illinois; Arlington, Virginia; and many points in between. Eighteen people with one thing in common — either they or someone in their immediate family had alopecia areata. So they became Legislative Liaisons, carrying our message to lawmakers both at home and in Washington, DC. September 12 was our fifth Day on Capitol Hill, bringing together a cross-section of our community’s best legislative advocates, hand-picked for their proven effectiveness as well as geographic desirability (i.e., they live in a district with a congressional representative who serves on a key committee and/or can sway others in their party to support us). In meetings with the offices of 41 senators and congressional representatives, Legislative Liaisons made the following three asks:

1) Advance medical — and alopecia areata — research by providing the National Institutes of Health with at least $38 billion for Fiscal Year 2019 (an increase of $2 billion).

2) Cosponsor H.R. 2925, legislation to provide coverage for wigs as durable medical equipment under the Medicare Program. As this is a House bill, key senators have been approached to author companion legislation.

3) Work to ensure the following “four pillars” of patient protection are included in any serious proposal to reform the healthcare system:

  • Maintain the prohibition against pre-existing condition discrimination.
  • Allow dependents to stay on family insurance until age 26.
  • Continue to prohibit lifetime and annual caps on insurance coverage.
  • Limit out-of-pocket costs for patients in a meaningful way.

“What a rewarding and fun experience the event was for me,” said Christine Gauthier, a Legislative Liaison from Alexandria, Virginia. “I look forward to the day when our efforts bear bigger and juicier fruit!” And longtime Legislative Liaison Karen Dintino of Hollis, New Hampshire, adds, “We have had so many successes through this NAAF legislative program already, and I’m more confident than ever that with our continued work that we will make great improvements to the quality of life for the alopecia community and that eventually there will be a cure!”

Interested in becoming a Legislative Liaison? Learn more about the program by contacting NAAF Communications Director Gary Sherwood at gary@naaf.org.

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