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Lobby Day 2007

The prediction of a major winter storm in Washington, DC, on February 13, 2007, did not stop 74 congenital heart advocates from 19 states from attending the second National Congenital Heart Lobby Day on Capitol Hill.

By Paula Miller

The rain, snow, and ice that did, in fact, fall all day could not diminish the enthusiasm displayed by those passionate about congenital heart disease (CHD).

Attendees came from as far as California to as close as DC itself. Two thirds of those attending were adult congenital heart disease (ACHD) patients, parents, spouses, or children of ACHDers, and one third were health professionals. The patients ranged in age from 14 to 61 years old. Attending ACHD health care professionals included Dr. James Perry; Nicole Boramanand, APRN; Dr. Michael Landzberg; Dr. Michael Singh; Disty Pearson, PA-C; Dr. Marlon Rosenbaum; Dr. Dawn Calderon; Dr. Gary Webb; Rita Novello, RDCS; Desiree Fleck, CRNP; Deborah Shellenberger, PA-C; Michelle J. Nickolaus, RN; Dr. Wendy Book; Dr. Michael McConnell; Connie Nixon, RN; Jenne Hickey, RN; Lindsey Cook, FNP; Libby Sparks, CNP; Dr. Craig; Dr. Masato Takahashi; Jane Sowinski, RN; Dr. Joseph Kay; Kathryn Richardson, RN, MSW; and Mary Brandon, RN.

For the second year in a row, participants gathered in the community room of Dr. George Ruiz’s home the night before Lobby Day 2007 for dinner and fellowship. Dr. Ruiz, an ACHD cardiologist who is currently serving as a White House Fellow, also gave a brief, humorous, yet insightful presentation, about having an effective Lobby Day. A special thanks to Dr. Ruiz for hosting this event once again, to Philips for its unrestricted educational grant to support the event and to Rita Novello for securing this connection.

Bright and early on Tuesday morning, participants met in the lobby of the Holiday Inn, White House/Central, for a short bus ride to the Capitol Hill Club which would serve as the “briefing area” for the day’s activities. The American College of Cardiology (ACC) again generously sponsored ACHA’s Lobby Day effort, and thanks to ACC staffers Molly Nichelson and Shane Osborne, the facilities available to our lobbyists were again first-rate. Following a delicious breakfast, ACHA’s Legislative Committee Co-Chair Disty Pearson, PA-C; Amy Verstappen, ACHA President and CEO; and Molly Nicholson of ACC opened the day’s activities with presentations about the goals for the day and how to be an effective lobbyist. The group then broke into lobbying teams, organized by states and regions, and received their schedule of appointments—the result of many hours of hard work by ACHA staffers Katie Freedman and Sarah Sharpless; ACC staffer Clare Davis; and ACHA volunteers Jeannette Milliner and Annie Saylor.

Throughout the day, teams of ACHA lobbyists visited 83 Senate and House offices. Between legislative visits, participants were able to return to the Capitol Hill Club to regroup, eat lunch and/or write thank you letters. A van, funded by Actelion Pharmaceuticals, was available during the day to transport lobbyists from one office building to another. While most appointments were with legislative aides, 17 occurred with the lawmaker present.

The meetings focused on educating legislative aides and legislators about CHD and asking for their support of report language calling for funding for health education and research funding in the area of congenital heart disease. (See sidebar below.) ACHA achieved report language in last year’s Senate Budget report, but due to the vagaries of the budget process, all report language was stripped from last year’s budget. This year, our goal was to have even more legislators indicate their support from both sides of the aisle.

The goals of Lobby Day 2007 were clearly met. Most congressional staffers were interested and responsive to the presentations by attendees, and the signs that our language will again be included in the budget were promising. Several staffers remembered us from last year. Most said they would send letters of support for the report language that is submitted. Local ACHA groups will be organizing follow-up visits with their legislators this summer to reiterate our request and further educate the lawmakers about CHD.

If you were unable to come to Washington on February 13, it is not too late! Write or visit your local Senators and Congressmen and educate them about CHD. Tell them your personal story and ask for them to support report language in the 2008 budget. Let them know that ACHA was on Capitol Hill asking for this funding. The ACHA office is available to help you in any way you need.

Read ACHA's pitch: Fund Health Education and Research in Adult Congenital Heart Disease

What is “Budget Report Language”? What does it do? Why does it matter?

Most Americans are aware that Congress creates a budget specifying funding for hundreds of line items mandated by legislation and/or the appropriations process. But few Americans are aware of another way in which the budget process directs federal activity—budget report language. When the House and Senate budget committees each prepare the draft budget, it is accompanied by a budget report. By inserting language regarding an unmet need, Congress can indicate its desire that action be taken, but avoid mandating specific funding. Report language is often used to address health concerns, since it allows the National Institutes of Health (NIH) to independently determine levels of research funding based on its own expertise, while at the same time indicating congressional interest in action. Every year, Congress asks the NIH to tell it what action it has taken to address the report priorities. Many health advocacy groups like ACHA lobby for report language inclusion.

To see many examples of health-related report language, including the language ACHA submitted in 2006, go to www.thomas.gov, and click on Appropriations Bills. Then click on the Senate Labor/HHS/Education subcommittee budget report, and scroll down to the National Heart Lung and Blood Institute (NHLBI) section. Here is the language that ACHA will be submitting for inclusion in the 2008 budget:

The Committee recognizes that congenital heart disease is a new chronic disease affecting 1.8 millions Americans. It 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 patient associations and other appropriate public health agencies to develop education; and research initiatives targeted to the life-long needs of congenital heart defect survivors.