2006: First National Congenital Heart Lobby Day A Huge Success

The event was a joint partnership of the Adult Congenital Heart Association (ACHA), the Congenital Heart Information Network (CHIN) and the Children’s Heart Foundation (CHF).
- By Paula Miller

The First National Congenital Heart Lobby Day was held on February 8, 2006, in Washington, D.C. It was a huge success. The event was a joint partnership of the Adult Congenital Heart Association (ACHA), the Congenital Heart Information Network (CHIN) and the Children’s Heart Foundation (CHF). Thanks to the liaison efforts of Dr. Gerard Martin, Chair of the Section on Congenital and Pediatric Heart Disease of the American College of Cardiology, this effort was also endorsed by the American College of Cardiology (ACC), the American Heart Association (AHA), and the American Academy of Pediatrics.

The evening before the event, participants met for dinner and a get-together in the party room at the home of Dr. George Ruiz of Children's National Medical Center. A special thanks to Dr. Ruiz and Dr. Karen Kuehl for hosting this event. It was a terrific opportunity for everyone to get to know each other before the actual Lobby Day event.

On Wednesday morning, 78 passionate lobby day participants joined together for a training breakfast at the Capitol Hill Club sponsored by the American College of Cardiology (ACC). Attendees included adults and children with congenital heart defects, their friends and families, and medical professionals, and represented 27 states. Presentations were made by Amy Verstappen, ACHA Executive Director and President and Molly Nichelson of ACC about our goals for the day and being an effective lobbyist.

Among the attendees were 2 families in which both the parent and child both had CHD. The age range of congenital heart patients in attendance ranged from 12 to the mid-sixties. Fourteen health professionals were in attendance, including Dr. Mike Landzberg, Dr. Tom Graham, Dr. Elyse Foster, Dr. Gerard Martin, Dr. Karen Kuehl, Dr. George Ruiz, Disty Pearson, MHP, PA-C, Michelle Nickolaus, CRNP, Michelle Ouellette, RN PNP, Dr. Curt Daniels, Libby Sparks RN, MS, and Dr. Michael Earing, plus the whole staff of the Columbus, Ohio ACHD clinic. The rest were a mix of ACHD patients, spouses, offspring of ACHDers (adults and children), teens and children with CHD, parents, and siblings. One attendee had her first surgery in 1947.

After the breakfast, participants began the day-long lobbying event. Over 75 congressional visits, targeted to the staff of members of the Health and Human Services subcommittees of the Appropriations Committees in the House and Senate, were made. In addition, supporters from around the country sent over 50 letters that were hand-delivered to over 20 congressional offices. The Capitol Hill Club was available to the participants throughout the day for them to re-group, write follow up letters, and confer. A van, funded by Actelion Pharmaceuticals, transported attendees to their appointments at House and Senate offices. The goal of the day was to educate lawmakers about CHD and to ask Congress to fund outreach and research efforts to identify and learn from adults with congenital heart defects. This goal was clearly achieved.

On the whole, attendees found the congressional staffers to be interested and responsive, and many new connections were made. ACHA will continue to develop these new legislative connections to identify potential partners for new legislative efforts. The lobbying effort will continue and efforts to introduce budget appropriation language into the next budget remain a goal. This event was a crucial first step towards meeting the unmet needs of the congenital heart community.

At the encouragement of legislative assistants, ACHA submitted "report language" to the Appropriations Committee in charge of health funding. Along with a budget, each Appropriations Committee also submits an accompanying report, which becomes part of the Congressional Record. Language referencing a given issue and calling for action is often the first step on which future funding builds. The wording submitted by ACHA is as follows.

The Committee (the Appropriations Committee) recognizes that congenital heart disease (CHD) affects 1 in 120 babies born in the United States and that the success of early medical interventions has resulted in 1.8 million CHD survivors. The Committee commends the NHLBI for convening a working group to address this issue, and supports its recommendation that action be taken to prevent needless disability and premature mortality in this rapidly growing population. The Committee urges the NHLBI to work with the CDC, the Adult Congenital Heart Association, and others to develop outreach efforts to reach the many CHD survivors currently "lost" to cardiac care and "to create a national adult congenital heart disease registry and research network".

If you were not able to come to Washington on February 8, 2006, you can still help. Write your Senator and Congressmen and ask them to urge the Appropriations Committee to include this language in this year’s budget report. Let them know we were on Capitol Hill asking for funding for a CHD registry. Tell them your personal story. In addition, take this opportunity to educate them about CHD. We encourage you to include the following important points:

  • Heart defects are the most common birth defect.
  • Childhood heart surgery has created a new population of survivors growing by 5% a year.
  • Surgery is not a "cure" - many heart defect survivors face a high risk of additional heart problems.
  • No effort is being made to track and study the first generation of heart defect survivors
  • Research is needed on population numbers, health status, and long-term outcomes in congenital heart disease
  • Patients, families, and doctors alike are making decisions without needed information.
  • Planning is needed to meet the growing needs of this new population.
  • An ACHD registry may also prevent heart defects by identifying genetic causes.

Names and contact information for your Senators and Congressman/woman can be found at www.house.gov and www.senate.gov. Include your full name and address when writing.

ACHA expresses its deepest appreciation to every one of the Lobby Day Attendees and to all of the supporters, for taking the time, effort, and often significant expense to make our voices heard. ACHA would like to give special thanks to Mona Barmash of CHIN and Bill Foley of the CHF; to Molly Nichelson, Moira Davenport, Leslie Edsall, and Dr. Gerard Martin of the ACC: to Jennifer Watson of Actelion for facilitating the van funding, to Bill Psolka, our photographer, and to Disty Pearson, PA, Dr. Karen Kuehl, Dr. George Ruiz, Amy Simmons and Tasheea Nicholson. This event would not have been possible without all of you.