Lobby Day 2012: Celebrate and Motivate

Congenital Heart Lobby Day 2012 was certainly one to celebrate!

Nearly 80 advocates gathered in Washington, D.C., on March 1 for this incredible opportunity to talk to their lawmakers about congenital heart disease. Hosted by the Adult Congenital Heart Association (ACHA) and Mended Little Hearts (MLH), this annual event brought together patients, family members, medical professionals, and supporters from across the country to connect with more than 100 legislative offices.

Advocates came from near and far, including from the West Coast. Barbara De Maria from California, also an ACHA Heart to Heart Ambassador, was one of those advocates. “I jumped at the opportunity to get on a plane and travel to D.C. to lobby for a better medical future for my 22-year-old son and the CHD community,” she says. “I couldn't think of a better way for Max to learn not only to advocate for his own healthcare, but what it feels like to have a voice in our government, and for him to appreciate the responsibility and power we have—as individuals and collectively, to be heard and to bring about change—in this case, by rallying support for policies that will affect his own heart future.”

Meredith Atkinson, a long-time advocate and former Hill staffer who was recognized at this year’s Lobby Day with a Heart Hero Award, notes the importance of ACHA and MLH coming together to advocate for the CHD cause. “I know very well that it's the job of the staffers to help their bosses (senators and representatives) find out the interests and concerns of their constituents and to then try to get taxpayer dollars sent in that direction,” Atkinson says. “If we don't ask, these Members of Congress won't ask for the money and it will go somewhere else. We not only need to ask, but we need to show that we are a large group that will continue to ask.”

“Many in the CHD community are not able to get up and have their voices heard—they are babies, children in the hospital, patients not healthy enough to travel, parents mourning losses,” Atkinson continues. “We are those who can share the message. We must get out there and pave the way for better lives for CHD patients.”

This year's message rang loud and strong. We took time to celebrate the tremendous success we have seen from our past efforts, and used that energy to continue to motivate our Members of Congress to do more!

Click here for an album of photos on the ACHA Facebook page.

At Lobby Day 2012, we asked our lawmakers to:
  • Provide funding to the Centers for Disease Control and Prevention to support data collection to better understand CHD prevalence and assess the public health impact of CHD.
  • Support the National Heart, Lung, and Blood Institute’s efforts to expand research targeted to the diverse lifelong needs of individuals living with CHD.
  • Join the Congenital Heart Caucus.

Atkinson paraphrases the general thoughts that one of Senator Mary Landrieu’s (D-LA) staffers had after hearing advocate stories, facts about CHD and what we were asking for: “Wow, I had no idea how common congenital heart disease is. Thank you for this information and the statistics. I want to go and be your ‘advocate’ before the Senator so that you can get [the money] you need.”

As patient organizations, ACHA and MLH are thrilled that we continue to grow in numbers and influence. “However, there is also remarkable power in developing partnerships with other organizations,” says Amy Basken, ACHA and MLH Advocacy Coordinator. “For this reason we need to take the opportunity to say thank you—thank you to our advocates, and thank to those partners who have stepped up to the plate for CHD.”

We would like to thank the organizations that, through their generosity, have made this event successful.

The American College of Cardiology (ACC) has provided sustained advocacy advice and material support since the first CHD Lobby Day in 2005.

Gerard Martin, MD, FACC, is immediate past chair of ACC’s Adult Congenital and Pediatric Cardiology Section. “I am so happy to see the CHD advocacy groups coming together to lobby specifically for congenital heart disease,” he says. “For too long we have had our message diluted by the competing priorities of our larger advocacy organizations. Real change is happening! Awareness and funding for CHD is increasing and lobbying is critical to maintain this momentum.”

Special thanks to ACC’s Texas Chapter for helping to build the foundation of advocate relationships by hosting our Welcome Reception on February 29. David May, MD, FACC, Governor of the Texas Chapter of ACC, explains why ACC enthusiastically supports advocacy on the part of those in the CHD community.

“As we relish the fabulous success we have achieved in the management of congenital heart disease, we must not fail to recognize the tremendous obstacles that still face these patients,” Dr. May says. “As adults, insurability and employability remain problematic. Our advocacy and support for this group is a logical extension of our need to provide patient centered care for these individuals and their families, ensuring that continued productivity and good health are within their reach.”

Thanks also to the Georgia and Iowa chapters of ACC for getting us fueled for the day through breakfast and training, and the Louisiana Chapter for supporting the travel of a few of our key advocates. Thank you also to the Hope Marietta Foundation for supporting our advocates throughout the day with the refreshment station.

We also offer sincere and abundant thanks to our current Congressional Champions: Congressman Gus Bilirakis (R-FL), for his willingness to chair the Congenital Heart Caucus in the House, and Senator Dick Durbin (D-IL) for successfully supporting the Congenital Heart Futures Act into law, through funding and now, implementation.

But most of all, thank you to our advocates. Thank you to those who give of their time, energy and resources to come together to unite their voices on behalf of the millions of people with congenital heart disease. Even those who could not join us in Washington helped to leave their mark. An additional 60 advocates reported contacting their legislators via e-mail. As Basken says, “Being an advocate means doing whatever you can, whenever you can. Anyone can be an advocate. Lobby Day is the culmination of our efforts, but to be truly successful, we must continue to develop relationships with our Members of Congress all year long.”

We are making a difference!