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13 MAY 2019

ALF Advocates for Liver Disease on Capitol Hill

Each year, as part of our advocacy mission, the American Liver Foundation brings individuals from across ALF’s nationwide liver community to visit their congressional representatives and share information about the needs of their constituents who are affected by liver disease.  Last week, sixty-two people, ages 10 to 70-plus, fanned out to the offices of 89 Members of Congress.  They came from across the country, from Maine to Hawaii; from the smallest state of Rhode Island to some of the largest—Texas and California—and represented nearly a dozen different liver diseases.  Many ALF constituencies were represented, including patients, physicians, caregivers, parents and ALF staff and Board members.

Divided into twelve groups, ALF advocates met most often with congressional staffers who generally knew little about liver disease.  The first order of business was to share information about the role of the liver, some of the different liver diseases and how these conditions affect their constituents.  Then, group members introduced this year’s legislative agenda items and shared the ways that they affect the local community as well as the whole country.  Visits concluded with thanks and an information packet for later review.

Some groups spoke directly with their Senators and Representatives: the Hawaii group met with Rep. Ed Case (D-HI) and the Indiana group, which I was honored to join, was included in the ‘Hoosier Huddle.’  This is an event attended by both Senators Mike Braun (R-IN) and Todd Young (R-IN) in which they met with constituents.

Brian Bourgault, a Shrewsbury, MA, liver transplant patient, spoke from the heart, “’Hill Day’ has special significance to me each year, as it follows directly after the Boston Marathon, the largest ALF annual event and most emotional for me.  I think of all the people involved with the ALF Boston Marathon; the patients, runners, medical professionals, volunteers and ALF staff and families who contribute an amazing amount of time and energy to engage as a team to promote the mission of the ALF.  I have this intense feeling of responsibility to represent all of them with my best when I travel to Washington DC for ‘Hill Day’ and grateful to be empowered to do so.”

This year, ‘Hill Day’ encompassed several days of events—ALF orientation and advocacy training sessions, legislative visits, and a meeting of the National Patient Advisory Committee.  In addition, we held a Congressional Luncheon Briefing, at which Dr. Jono Mermin, the Director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC spoke about the spike in infectious diseases attributed to the opioid epidemic and National Patient Advisory Committee Member Sherry Tierney spoke about her patient journey with hepatitis C and receiving a liver transplant. Additionally, we presented ALF’s 2019 Distinguished Service Awards to Senator Kevin Cramer (R-ND), Sponsor of the Access to Marketplace Insurance Act; Senator Kirsten Gillibrand (D-NY), Sponsor of the Living Donor Protection Act; Congressman Jerry Nadler (D-NY), Sponsor of the Living Donor Protection Act and Congresswoman Nydia Velazquez (D-NY), Sponsor of the LIVER Act.

Learn more about ALF Advocacy, take a look at our current legislative priorities,  send your local lawmaker a message, and sign up to receive regular updates here!

 

Tom Nealon
President & CEO
American Liver Foundation


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