Introducing Every 100th Heart Coalition for CHD Advocacy
Recently, a new initiative known as Every 100th Heart (EHH) was announced, aiming to significantly raise national awareness and advocacy efforts for congenital heart disease (CHD). This coalition is a groundbreaking move towards uniting the voices of patients, families, and healthcare professionals to prioritize CHD within federal health policy discussions. The alarming fact that nearly one in 100 newborns is affected by this condition highlights the urgent need for improved representation and funding in the decision-making process at the federal level.
Understanding the Impact of Congenital Heart Disease
Congenital heart disease remains the most prevalent birth defect in the United States, impacting millions across different age groups. Financially, CHD contributes to more than $6 billion in hospital costs every year, while pediatric conditions account for around 15% of all pediatric hospital charges despite only making up a small percentage of the population. This disparity illustrates the significant burden placed on families and the healthcare system.
The Coalition's Mission and Goals
Every 100th Heart aims to change this narrative by developing a national policy agenda focused on CHD. The coalition's mission includes raising awareness about these conditions among policymakers and the public while advocating for practical policy changes that can enhance the quality of life and survival rates of those affected by congenital heart defects. By bringing together influential organizations, they hope to foster a united front that amplifies the voices of those impacted by CHD.
Founding Organizations and Their Roles
The inception of Every 100th Heart is backed by well-respected organizations that span decades of advocacy and care for the CHD community. These include Additional Ventures, the Adult Congenital Heart Association (ACHA), the American Heart Association, the Children's Heart Foundation, and others. Together, they provide a wealth of experience focused on improving care and outcomes for individuals with heart defects.
Advancing Advocacy Through Collaborative Efforts
Mark Roeder, President and CEO of ACHA, expressed the organization's commitment to expanding its advocacy efforts to encompass a broader range of issues affecting patients. He noted that together with Every 100th Heart, they could tackle challenges such as insurance barriers and access to necessary treatments for congenital heart diseases.
Future Events and Opportunities for Engagement
One exciting opportunity on the horizon is the National CHD Advocacy Summit scheduled in Washington, D.C. This event will occur soon and is designed to empower patients, families, and healthcare professionals through training sessions, networking opportunities, and educational engagements with policymakers. It provides a perfect platform for advocates to unite and amplify their collective voice.
A Call to Action for All Stakeholders
As the Every 100th Heart coalition embarks on this critical journey, the leaders ask for community-wide support. They recognize that transforming the landscape of congenital heart disease care requires a comprehensive approach that spans research, clinical care, and policy. Together, they can ensure that those with CHD receive the highest quality of care and access to innovative solutions that can improve their lives.
Frequently Asked Questions
What is the Every 100th Heart coalition?
Every 100th Heart is a national coalition aimed at advocating for congenital heart disease awareness and prioritizing it in federal health policy.
Why is congenital heart disease important to address?
It affects nearly one in 100 babies and leads to significant healthcare costs, yet the community feels underrepresented in policymaking.
What goals does the coalition have?
The coalition seeks to raise awareness, advocate for policy changes, and improve the quality of life for individuals living with CHD.
Who are the founding members of Every 100th Heart?
Founding members include Additional Ventures, Adult Congenital Heart Association, American Heart Association, and others focused on advancing CHD care.
How can individuals get involved with the coalition?
Individuals can participate in events like the National CHD Advocacy Summit and support advocacy efforts for congenital heart disease.
