2013 Policy Priorities
The Adult Congenital Heart Association (ACHA) is the only organization dedicated to advocating on behalf of those with congenital heart defects (CHD) across the lifespan.
ACHA strives to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy, and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community.
ACHA is the only organization dedicated to advocating on behalf of those with congenital heart defects across the lifespan.
The federal government is the largest funder of congenital heart disease research and surveillance efforts. As a key player in the successful future of those living with CHD, ACHA urges Congress to partner with us in our efforts to improve and prolong the lives of those with CHD.
Advance CHD Research and Development Across the Lifespan
The Adult Congenital Heart Association recognizes that there is a serious gap in information about the rapidly growing congenital heart disease population. Recent estimates suggest there are over 2 million people living with congenital heart disease and more than half are likely adults. However, there is little data on demographics, disease course, quality treatment options or outcomes.
Strengthen the Centers for Disease Control and Prevention (CDC)
The CDC is the federal agency responsible for creating information and tools that people and communities need to protect their health - accomplished, in part, through health surveillance, health promotion and prevention.
- Ensure lawmakers allocate the necessary resources to the CDC to further develop congenital heart disease surveillance across the lifespan.
- Support the CDC in their efforts to gain better understanding of the public health impact of congenital heart disease across the lifespan.
- Collaborate with the CDC in health promotion and prevention efforts related to lifelong impact of congenital heart disease.
Support the National Institutes of Health (NIH)
As the Nation’s research agency, the NIH works to enhance health, lengthen life, and reduce the burdens of illness and disability.
- Ensure Congress provides sustainable funding for the essential NIH research efforts.
- Promote the expansion of NIH multi-centered research activities related to congenital heart disease to address the lifelong burden of this disease.
Promote Access to Recommended Specialized Care
The Adult Congenital Heart Association endorses the findings of the American College of Cardiology (ACC) and American Heart Association (AHA) 2008 Guidelines for the Management of Adults with Congenital Heart Disease, as well as the ACC 32nd Bethesda Conference Report, which state that all adults born with complex congenital heart defects should receive lifelong care from congenital heart specialists.
Accessibility of Trained Specialists
There is a significant lack of trained specialists to meet the needs of the growing population of adults with congenital heart disease.
- Promote the development of clinical training opportunities within the NIH.
Quality Centers of Care
ACHA supports the development of standards of quality for ACHD care centers. Currently, there is no centralized database to collect information to be used to assess quality and outcomes.
- Promote NIH development of infrastructure to facilitate data collection to be used in quality assurance practices.
Affordability of Healthcare
Healthcare costs continue to rise, preventing many from receiving necessary and life sustaining treatment for issues related to congenital heart disease.
- Monitor and support effective implementation of healthcare initiatives that lead to access to affordable care.
- Monitor and support Social Security Administration efforts related to implementation of revised disability guidelines for children and adults living with congenital heart disease.
Increase Awareness of CHD
Increased awareness of congenital heart defects through ongoing education efforts directed at lawmakers and federal agencies will improve informed decision-making.
- Encourage lawmakers to join the Congressional Congenital Heart Caucus and promote expansion of the Caucus to the Senate.
- Educate lawmakers about the public health burden of congenital heart disease, the serious gaps in data, and related federal agency efforts.
- Educate and support federal agencies including, but not limited to, the National Center for Advancing Translational Sciences (NCATS), the Patient-Centered Outcomes Research Institute (PCORI) and the Agency for Healthcare Research and Quality (AHRQ) in their role to improve outcomes for those living with congenital heart disease.