ACHA has always made sure to let our community know how important research is in improving the quality of care and the quality of life for adults with congenital heart disease (CHD). It's a crucial part of our mission.
And as we announced in 2018, research is a part of our strategic plan with this overall goal: Fund research to improve the lives of CHD patients and future generations in partnership with medical professionals.
This year has undoubtedly been challenging and required a great deal of adaptability across all industries. The non-profit sector and the Adult Congenital Heart Association have been no different. Events have needed to be cancelled or rescheduled and fundraising efforts have been greatly impacted. We found ourselves needing to reimagine much of our work to fit into this new virtual space we are living in due to the COVID-19 pandemic.
Students are beginning to start or return to college. What this looks like differs for every institution of higher learning. ACHA shares some tips for reducing exposure if you are returning to campus, as well as tips for working with disability services to get accommodations as an adult with congenital heart disease (ACHD).
How did you learn about ACHA?
I was born in 1974 with single ventricle, transposition of the great arteries and coarctation of the aorta. I had four surgeries during my childhood, which included the Fontan procedure in 1985. I had done remarkably well until early in 2013 when my wife, Jacqui, had voiced her concerns that she had seen a decline in my health.
After seeing that there were no clear and concise data regarding patients with CHD and COVID-19 available across the world, ACHA’s medical leadership led the way in the creation of a dedicated database that medical providers will be using in the United States and abroad.
Last month, the Centers for Medicare and Medicaid Services (CMS) approved "Adult Congenital Heart Disease Specialists" as a unique subspecialty and designated an ACHD subspecialty code. This is a critical step to ACHD program building and improving access around the country to high-quality ACHD care. The unique distinction for ACHD allows ACHD cardiologists to be recognized by CMS—and hence other insurance companies—as a distinct subspecialty and different from general (adult) cardiology and pediatric cardiology. Without this distinct code, ACHD cardiologists are evaluated and measured the same as general cardiologists and therefore outcome data and quality metrics and measures do not fully represent the patient population or the field of ACHD.
Dear ACHA Members and Supporters,
I hope this letter finds you safe and in good health during this unprecedented time.
Over the past weeks, ACHA has remained a leader and committed to keeping the CHD community informed. More than 17,000 of you have watched our free webinars addressing COVID-19 or have accessed our COVID-19 FAQ. Through our network of ACHA ACHD accredited centers, and the dedicated leadership of our Medical Advisory Board, ACHA is uniquely positioned to gather information as this situation continues to evolve, and that is what we will strive to do. That is our commitment to you.
The Adult Congenital Heart Association (ACHA) has announced the newest additions to the organization’s Medical Advisory Board (MAB), joining dozens of other medical providers specializing in the field of adult congenital heart disease (ACHD) care. ACHA MAB members play a crucial role in offering expert opinions on research and medical developments in ACHD and the needs of the ACHD population (approximately 1.4 million Americans) to assure that organizational policies meet the highest standards of scientific need and accuracy.