By Danielle Stephens
ACHA Director of Programs
What an exciting Congenital Heart Legislative Conference in Washington, D.C., February 25-26! Teaming up together, the Adult Congenital Heart Association, Children’s Heart Foundation and the Pediatric Congenital Heart Association brought together 116 advocates from 29 states who attended more than 130 meetings with Senators, Representatives and their staffs to spread the word about congenital heart disease.
Attendees included CHD patients of all age ranges, their spouses, parents, friends—even a CHD patient’s aunt flew to represent the CHD community at our conference. Prior to our meetings on the Hill that occurred on Thursday, we had a full day of training for our advocates on Wednesday. We started off the conference training with Jennifer Page, who shared the story of her son Max, who has tetralogy of Fallot. Max has a pacemaker, but is living a full life thanks to faith and incredible healthcare. Next, Ken Woodhouse, an ACHA Heart to Heart Ambassador, who also has tetralogy of Fallot, told us about his two open heart surgeries and how he hasn’t let his CHD slow him down.
Then we heard from Dr. Kristin Burns from the National Institutes of Health about CHD research advances; Dr. Peggy Honein from the Centers for Disease Control and Prevention about public health surveillance and research activities; and Colby Tiner from the American Heart Association about the role of data in research and advocacy.
After a quick break the advocates were able to choose from two different breakout tracks: Meeting Etiquette, Digging Deeper and Empowering the Youth; or Telling Your Story. We then came back together to discuss information related to what we would be asking of our Members of Congress. All of the advocates came away from the training with complete confidence for the next day of meetings.
Later that evening we gathered for a reception where we had the fortune of honoring Congressman Adam Schiff, a representative from California’s 28th congressional district who has been a CHD champion since 2013 when he joined the Congressional Congenital Heart Caucus as co-chair. We also heard from Dr. Gerard Martin, a pediatric cardiologist at Children’s National Health System in Washington, D.C. Aside from the wonderful speakers, the reception allowed everyone to talk and meet new CHD friends.
Despite the snow and two-hour delay the next day, the advocates marched up the Hill to start their meetings at 9:30 a.m. Our last advocates returned close to 5 p.m., at the end of a very full and exciting day for the CHD community.
Although we are still following up with thank you letters and emails, from our meetings we have had two additional members sign onto the Congenital Heart Disease Caucus: French Hill (R-AR 2) and Carolyn Maloney (D-NY 12). In addition, nine House members have agreed to sign the Dear Colleague letter: Lead Author Adam Schiff (D-CA 28), Co-Author Gus Bilirakis (R-FL 12), Raul Grijalva (D-AZ 3), Eleanor Holmes Norton (D-DC), James McGovern (D-MA 2), Yvette Clarke (D-NY 9), Carolyn Maloney (D-NY 12), Charles Rangel (D-NY 13), and Sheila Jackson-Lee (D-TX 18).