Petition

CHD is the #1 birth defect and cause of death in children in the U.S.

1 in 100 babies are born with CHD with approximately two million adults living in the United States with a heart defect.

There is no cure for CHD, and the majority require lifetime medical care. Due to lack of funding, the U.S. does not have a national database to track these patients. Some statistics from 2018 show that: 1 in 77 babies are born with a CHD of which 1 in 4 are categorized as critical or severe and lead to a lifetime of disabilities. As comparison: Down Syndrome births are 1 in 800, with childhood cancer rates coming in at 1 in 6250.

The most current data available from CDC shows that in 2013 CHD hospitalization costs were $6.1 billion dollars. The American Heart Association confirmed an update with our team in January 2021 that through their CHD Research Awards program, the AHA is planning to fund more than $14.3 million in CHD research over the next several years. Per Forbes and Charity Navigator, American Heart Association reported $854 millions dollars in 2019, with $610 million dollars coming from private donors. This is an uneven scale of support.

The funding they have allocated for CHD is not remotely enough. The American Heart Association (AHA) states that CHD is 60 times more prevalent than childhood cancer, yet research is only funded at one fifth (1/5) the level. Our own child’s Explanation Of Benefits is well over $2.5 million dollars, and Luke is only 3 years old.

The American Heart Association continuously utilizes the stories of CHD families in their marketing and fundraising efforts yet reroutes their funding to support acquired heart disease. While we support those afflicted with acquired heart disease, CHD is both grossly underfunded and underrepresented.

In their campaigns, the AHA also does not address the fundamental differences between CHD and acquired heart disease. Some of which include:

– The cause(s) of CHD are still not known.

– There is no cure for CHD. Diet and exercise will not prevent our need for surgeries and procedures or the progression of symptoms due to our aging, malformed hearts working harder.

– In many CHD patients, CHD requires multiple surgeries and procedures that require life-long care. CHD patients suffer from PTSD, anxiety, depression, body image issues, child-bearing issues and more.

– CHD requires care from specialists. A general cardiologist is not trained to treat a patient with CHD. A cardiologist that specializes in Adult Congenital Heart Diseases must complete an extra two-year fellowship to sit for the board exam. Although AHA contributed to the guidelines of care, which includes the plan for a patient to transition from pediatric to ACHD care, they do not publicize this critical information in their marketing efforts that mention CHD.

– AHA is a billion-dollar organization. While they have pledged funds to CHD research through The Children’s Heart Foundation, it is a minimal amount compared to the overall funding they receive. Although they use CHD children in fundraisers such as “Jump Rope for Heart” and “Heart Ball,” they will not disclose the amount of funds they raise through these efforts or the amount they actually donate to CHD annually.

– AHA has never publicly differentiated Congenital Heart Disease and acquired heart disease which hinders progress that CHD organizations work toward to promote awareness.

– AHA uses CHD patient stories during Heart Month and in their Go Red event to express the idea that 80% of heart disease is preventable, which dismisses and diminishes the CHD experience.

– AHA has taken credit for research and advances in Congenital Heart Defects, when in reality most surgical procedures such as the Fontan, Blalock-Taussig shunt, Rastelli, The Ross, and others were not supported or funded by AHA.

Alongside families inflicted with CHD, please join our Bright Heart Foundation during Bright Heart Month by signing this petition to ask the American Heart Association to implement major changes in their funding, so we can strive towards eradicating the #1 cause of children’s deaths. We are asking American Heart Association to:

1. Recognize CHD as its own entity, and truthfully present factual information in their marketing and fundraising efforts.

2. Stop using CHD patients and families to talk about acquired heart disease. Instead, support them by giving them platforms to share their own experiences with CHD.

3. Contribute to CHD awareness by focusing efforts on sharing information on the alarming facts and statistics, lifelong care, getting the right care, and differentiating between acquired and Congenital Heart Disease.

4. Promote the ACHD guidelines and the need for specialized care for CHD patients.

5. Be transparent about the amount of money AHA allocated to CHD research yearly. A great way to start is when a CHD child or adult is leveraged in marketing for AHA programs (like “Jump Rope for Heart” or “Heart Ball”) or as an honoree for a gala, the percentage of proceeds going towards CHD research and initiatives should be denoted.

6. Meet with and collaborate with CHD organizations like Bright Heart Foundation to create a task force focused on improving awareness, pediatric research funding, and support groups.

American Heart Association, we urge you to stand with Bright Heart Foundation and become a champion for change for those living with Congenital Heart Defects and for those that will be born in the future with this condition. In doing so, you will demonstrate your commitment to the lives and health of families who have lifelong battles ahead of them.