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Legislative Liaisons meet with Rep. Ilhan Omar of Minnesota

Two Hill Days, More Co-Sponsors for our House Congressional Bill, and a Trip to the House Floor — We’re Back in DC!

May 28, 2019

NAAF’s sixth Day on Capitol Hill for select Legislative Liaisons took place on Thursday, September 12, and was our largest yet, as 22 liaisons and 12 additional family members, plus four NAAF staff and our friends from the Health and Medicine Counsel of Washington (HMCW) met with the offices of 51 congressional representatives and senators, to ask they do the following:

1) Advance medical — and alopecia areata — research by providing the National Institutes of Health with at least $41.6 billion for Fiscal Year 2020 (an increase of $2 billion).

2) Work to ensure the following “four pillars” of patient protection are included in any serious Congressional 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.

3) Cosponsor H.R. 3332, legislation to provide coverage for wigs as durable medical equipment under the Medicare Program.

At Wednesday afternoon’s prep session with HMCW, we learned our bill H.R. 3332 (see below) had gained three new co-sponsors in just five days. We then enjoyed a wonderful dinner together where friendships were formed or resumed. Even though seven of the Legislative Liaisons and their family were joining us for the first time in DC, they fit right in with the veterans, who made them feel welcome and an essential part of the team. Then came Thursday morning, and after a breakfast and review, we set off for Capitol Hill, where we posed for a large group photo as well as many other individual and smaller group pics. A friendly Capitol Police officer let our children climb to the very top of the steps, while us jealous grownups set our cameras to zoom to get some adorable photos. Then it was time to split into groups organized by state, and set off to speak with our lawmakers.

“It was an awesome experience in all aspects,” says Julie Mitchell, attending her first Hill Day with her daughter Lila. “I liked being with people who had done it before, so it was a learning experience.” Also attending for the first time was Lara Burrows with her daughter Sophie, who says, “Sophie’s day on the Hill was terrific. I was so blown away by what a well-organized and productive two days it was.”

In addition to our own day on The Hill, NAAF representatives played a significant role in the Hill Day organized by the American Academy of Dermatology Association (AADA) who invited members of the Coalition of Skin Diseases (CSD) to accompany them on meetings with elected officials that previous Tuesday, September 10. NAAF Communications Director Gary Sherwood, who also leads the CSD advocacy task force, facilitated a prep session that outlined the Coalition’s legislative goals and incorporated role-play to give new patient advocates an opportunity to rehearse telling their stories while asking legislators for their support.

Also involved in this event were Northern Virginia Legislative Liaisons Christine Gauthier and Natalie Mamerow. Natalie was once a congressional staffer and presented on best practices for meeting with a legislative office. Then she, Christine and Gary joined with groups of dermatologists on the AADA’s Hill Day to provide the patient perspective to legislators and their staff.

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

2019 Research Funding Opportunities Announced at Dermatology Meeting
NAAF Travel Grant Awardees Report from the 2019 World Congress of Dermatology