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Legislative Advocacy

Thank you for your interest in advocacy. This is how engaged citizens impact the critical role the federal government plays in medical research, treatment development, healthcare delivery and insurance coverage in this country. By reaching out and building relationships with your Members of Congress, you can ensure legislators are well-educated about the issues impacting the alopecia areata community and prepared to take appropriate action to advance research and improve care. Legislative advocates for the alopecia areata community are supported by NAAF through the Legislative Liaison program.

Your two Senators and one Representative are elected to Congress to serve the people they represent. Their offices and staff rely on constituent outreach to identify legislative priorities and emerging issues. After all, it is through service to their constituents that Members of Congress remain in high-standing with voters and earn re-election. As the former Speaker of the House, Tip O’Neill, famously quipped, “All politics is local.”

The former Secretary of Defense, Donald Rumsfeld, also coined a famous phrase, “unknown unknowns,” which means you aren’t aware of the information you don’t have. Members of Congress face many “unknown unknowns” when the work to make good public policy and advance legislation of benefit to their constituents on Capitol Hill. If a constituent does not engage them, explain an issue, and ask them to take action; how would they know how to work to advance research or improve patient care on that constituent’s behalf?

Your personal outreach is what educates your Members of Congress about the issues facing the community. And the relationship you build with them is what motivates them to take action on your behalf. Members of Congress have significant authority and can bring many resources to bear. It is your voice and your story though that encourages legislators to begin working federal mechanisms and engaging government programs with the goal of improving health outcomes. 

 

The Alopecia Areata Legislative Liaisons are assured, well-informed Americans speaking on behalf of themselves and the 6.5 million fellow citizens who share this disease.  NAAF provides Legislative Liaisons with all the information needed to inform their representatives about the legislative issues that most impact the alopecia areata community, both through e-mails and informative webinars. 

Legislative Liaisons meet in April with their congressional representatives and senators at their local district offices.  The Legislative Liaisons are encouraged to bring members of their local support group to these meetings so lawmakers can see and hear how the decisions they make affect their constituents with alopecia areata.  

In September, 20 Legislative Liaisons from across the country are invited to Washington, DC to attend further meetings with their congressional representatives and senators on Capitol Hill.  Legislative Liaisons also respond to “calls to action.”  These usually entail forwarding a letter or calling the legislators’ offices to inform and urge them to act on supporting legislation affecting the alopecia areata community.  

Those interested in being a Legislative Liaison are encouraged to email Gary Sherwood at gary@naaf.org or call 415-472-3780.

By now, you need little convincing of the importance of legislative outreach. As an American citizen, you’ve experienced first-hand how Congressional action affects our day-to-day lives. The nation’s budgetary crisis means there may likely be cuts in certain fields of medical research. As an Alopecia Areata Legislative Liaison and/or a member of the NAAF community, you will be the voice demanding that research affecting the alopecia areata community be kept vibrant through continued robust funding. You will also be the voice making sure Congress knows we have waited long enough and want safe, effective treatments now.  

The National Alopecia Areata Foundation (NAAF) has a long and proud history of legislative advocacy, dating back to the 1980s when dermatologists associated with NAAF testified before Congress to make our lawmakers better aware of alopecia areata, and what needed to be done to find treatment and a cure.  Those who attended our 2012 patient Conference in Washington, DC will never forget the sight of 600 people in dark blue shirts marching to Capitol Hill to meet with their congressional representatives and senators. 

From that epoch was born our Legislative Liaison program, open to anyone 18 or older who wishes to engage their elected officials so as to maintain a legislative climate friendly to continued and increased research funding, insurance fairness, and any other governmental issue affecting the alopecia areata community.  Legislative Liaisons meet with the offices of their congressional representatives and senators both locally and in Washington, ensuring these lawmakers are kept apprised of the matters most important to those with alopecia areata and their loved ones.  

Leading these volunteers who advocate legislatively on behalf of all those with alopecia areata is another way NAAF endeavors to change lives for the better.