This post was authored by Gerard R. Martin, MD, FACC, immediate past chair of the ACC’s Adult Congenital and Pediatric Cardiology Council.

“For the first 20 years of my son’s life, I felt as though I was driving with my eyes closed. My son was born with CHD, but during those first 20 years there was very little information available and very few support groups,” said Barbara DeMaria, a parent ambassador for the Adult Congenital Heart Association (ACHA), during the recent Congenital Heart Advocacy Day reception held at the ACC’s Heart House.

DeMaria is one of more than 100 patients, family members and health care stakeholders who attended the 7th Annual Congenital Heart Advocacy Day in Washington, DC, on March 18 and 19. The two-day event is designed to bring together congenital heart disease survivors, their families and health care providers to help educate Congress about the need for increased research and programmatic funding to help better understand the disease.

This year, in particular, attendees met with lawmakers seeking support for National Institutes of Health research funding and Center for Disease Control and Prevention surveillance efforts. In addition, they sought to recruit additional members of Congress to join the Congressional Congenital Heart Caucus.  I had the honor of speaking to and hearing from DeMaria and others the day prior to them heading to Capitol Hill.

This lobby day, of which the ACC has been a long-time partner, is one of the key ways we continue to keep up the drum beat for continued advances in treatment and care for children and adults living with the disease. Not only is congenital heart disease still the nation’s number one birth defect, there are currently more than one million adults living with congenital heart disease thanks to advances that have already been made.

It’s events like this that showcase just how far we have come, that make me encouraged about the future of care for adults and children with congenital heart disease. For me, this lobby day symbolizes the coming together of physicians, patients and families in recognition of the need for collaboration with and among each other. It is this collaboration that I believe members of Congress and others are now beginning to appreciate, understand, and reward through programs, research and initiatives that can (and in some cases already are) not only save lives, but help those with the disease live longer, healthier and productive lives.

There is still much work to do – and more Advocacy Days to be had – but working together I am confident that we can continue to make progress in the treatment of congenital heart disease patients, like DeMaria’s son, all along the care continuum.

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