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Patient Advocacy 

Advocacy Day 2014 Senate Hill Day

Left to Right: Aaron Williams, Lori Jacobi, Lucinda Beaty,Bob Flint, Sarah and Abby Chan, Marianne Peterson, Vicki Kalabokes, Bree Morse, Gary Sherwood, Jeanne Rappoport, Deirdre Nero and Dustin Lee

Legislative Liaisons Return to Capitol Hill September 2014  

Hard to believe, but the Alopecia Areata Legislative Liaison program is already two years old and only continues to grow in size and efficacy.  To celebrate its second anniversary, fifteen Legislative Liaisons from 11 states joined NAAF’s retired President & CEO Vicki Kalabokes, Communications Director Gary Sherwood, and Chief Administration Officer Jeanne Rappoport to meet with the health aides of thirty senators and congressional representatives at their offices in Washington, DC in September 2014.  The Legislative Liaisons asked for their lawmakers’ support on advancing alopecia areata research and support in three key areas, all 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 such as the JAK inhibitor studies at Columbia University which look very promising for the alopecia areata community. 
  2. Create new incentives for industry and promote treatment and diagnostic tool development by cosponsoring H.R. 3116, the MODDERN Cures Act.   
  3. Request the Center for Medicare and Medicaid Services to 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 which would remedy this situation.  Of course, we’ll keep you posted as soon as we hear more. 

Megan Reiter, a liaison who attended with her 8-year-old daughter Mia, says, “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.”

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

Sarah ChanTwenty-nine Alopecia Areata Legislative Liaisons and 61 other community group members met with 24 U.S. representatives and senators in April and May,  2014 at the legislators’ local offices in cities and towns across America. The Legislative Liaisons were encouraged to bring family and support group members, as lawmakers are often more encouraged to act when they see the numbers of their constituents who are affected by alopecia areata. When meeting with their elected officials, the Legislative Liaisons shared their alopecia areata experience and asked the lawmakers to:

  • Advance medical research by providing the National Institutes of Health (NIH) with $32 billion in Fiscal Year 2015. Legislators were also urged to inquire about opportunities for alopecia areata research through the NIH’s new Accelerating Medicines Partnership, which is currently studying rheumatoid arthritis. 
  • Facilitate treatment development through the Food and Drug Administration’s Patient-Focused Drug Development Initiative
  • Improve patient care through encouraging the Centers for Medicare and Medicaid Services to consider policy changes that would promote fairness and commonsense with the application of cranial prosthetic benefits.

Sarah Chan and her daughter meet with Rep. Jared Huffman of California

Now approaching its third year, the Legislative Liaisons 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 liaison yourself, please contact Gary Sherwood at gary@naaf.org or 415-472-3780.  

Learn about the MODDERN Cures Act.

The National Alopecia Areata Foundation is a member of the National Health Council (NHC), the only organization of its kind that brings together all segments of the health care community to provide a united voice for more than 133 million people with chronic diseases and disabilities and their family caregivers.

Made up of more than 100 national health-related organizations, NHC's core membership includes approximately 50 of the national leading patient advocacy organizations, which control its governance. Other members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical, health insurance, medical device, and biotechnology companies.

Learn more about the National Health Council.

NHC Standards of Excellence


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