#USA #Washington #Congenital Heart Disease #Every 100th Heart #Advocacy Coalition

Every 100th Heart: A Game Changer in Congenital Heart Disease Advocacy

On February 3, 2026, leaders from the congenital heart disease (CHD) community gathered to unveil Every 100th Heart (EHH), a national coalition that seeks to elevate the discussion of CHD within federal health policy. This initiative unites patients, families, and healthcare professionals to ensure that CHD receives the attention and funding it desperately needs.

The Impact of Congenital Heart Disease

Congenital heart disease remains the most prevalent birth defect in the U.S., impacting around 1 in 100 babies. Furthermore, it affects millions of children and adults throughout the country. Despite its prevalence, the CHD community has long felt neglected in terms of representation and funding within federal policymaking circles.

CHD incurs over $6 billion annually in hospital costs, and conditions related to pediatric heart disease account for approximately 15% of all pediatric hospital expenditures nationwide, despite CHD patients constituting merely 1% of the population. This disparity underscores the pressing need for a unified voice to advocate for better policies, funding, and resources for those affected by CHD.

Goals of the Every 100th Heart Coalition

The mission of Every 100th Heart is clear; the coalition aims to reshape the narrative surrounding CHD by:
1. Advocating for federal policy priorities: EHH is committed to driving home the urgent need for legislative action and national attention to congenital heart disease.
2. Raising awareness: The coalition seeks to educate policymakers and the public alike about the realities and challenges facing the CHD community.
3. Developing policy solutions: By proposing actionable solutions, EHH aims to enhance survival rates, improve life quality, and expand access to care for individuals living with CHD.

A Collective Effort

Founding members of the Every 100th Heart coalition include reputable organizations such as Additional Ventures, the Adult Congenital Heart Association (ACHA), the American Heart Association, the Children’s Heart Foundation, Conquering CHD, and the Mussallem CHD Alliance. These organizations bring a wealth of experience and dedication to the table, having fiercely advocated for the Congenital Heart Futures Reauthorization Act in 2024 and other critical initiatives.

Mark Roeder, President and CEO of ACHA, emphasized the coalition's role, stating, “Through Every 100th Heart, we look forward to expanding our advocacy into critical policy areas such as tackling insurance barriers and advancing access to essential CHD treatments.”

Emily Holubowich, National Senior Vice President for Federal Advocacy at the American Heart Association, remarked, “CHD is often a lifelong journey for families, marked by financial challenges and care gaps. This coalition will help us advocate for necessary federal investments in research and care innovations.”

Raising the Voice of Advocacy

Addressing the complexities of congenital heart defect care necessitates a robust commitment to innovation across research, clinical practice, and policy. Orin Herskowitz, President of the Mussallem CHD Alliance, noted that the coalition aims to facilitate this through coordinated efforts with lawmakers, ensuring that solutions are aligned with the needs of congenital heart patients.

The Every 100th Heart coalition is also organizing a National CHD Advocacy Summit scheduled for May 19-20 in Washington, D.C. This summit will serve as a significant gathering for CHD advocates to gain training, engage in networking, and educate themselves on best practices in policymaking advocacy.

In Conclusion
As Every 100th Heart takes its first steps, it aspires to forge a future where congenital heart disease receives the attention it deserves, both in the legislative sphere and in public consciousness. For additional information about the coalition, interested parties can visit Every 100th Heart or follow them on Instagram and LinkedIn at @Every100thHeart.

Together, the voices united under Every 100th Heart are poised to create a lasting impact on the lives of all those affected by congenital heart disease.