Closing the Care Gap for Patients With Adult Congenital Heart Disease

Posted Wednesday, Jul 20, 2016

Philadelphia, PA – The Adult Congenital Heart Association (ACHA) announced today the launch of their ACHA ACHD Accreditation Program. This is a significant milestone as this program establishes a concrete set of criteria that strives to provide high quality care for adult congenital heart disease (ACHD) patients.

Congenital heart disease (CHD) is the most common birth defect, diagnosed in close to 1% or one in 110 births in the United States. The successes in treating pediatric patients with CHD has led to a growing, complex adult population which is now larger than the pediatric population. It is estimated that 20,000 adolescents enter adulthood with CHD each year, adding to the 1.3 million adults living with CHD in the U.S.

“Access to quality of care for adults living with CHD can be a challenge,” said Curt Daniels, MD, FACC, Chair of the ACHA Medical Advisory Board. “Those with CHD need specialized care and testing that can be best provided by ACHD specialists. The ACHA ACHD Accreditation Program is a critical landmark as it will now provide ACHD patients a means to find a high quality ACHD program throughout the U.S. It will also provide a clear road map for providers to structure and build their ACHD programs under the auspices of ACHA as a patient advocacy organization.”

In 2009, ACHA, serving as a patient advocacy organization, convened a panel of members of ACHA leadership and ACHD professionals from their Medical Advisory Board to discuss how ACHA could develop an agenda to improve the care for ACHD patients in the U.S. From this, a directive known as Vision 2020 sought to define and improve the ACHD workforce and develop an accreditation process to improve the quality of care delivered within ACHD clinics and programs throughout the U.S.

“Under ACHA’s organizational guidance, a Steering Committee was developed from the Medical Advisory Board to develop program criteria and promote a process of peer review and approval,” said Glenn R. Tringali, National Executive Director of ACHA. “We are delighted that as of July 1, 2016, the ACHA ACHD Accreditation Program enrollment process opened allowing all programs who enrolled with a pre-application to apply for accreditation.”

The ACHA ACHD Accreditation Program received endorsement from many organizations including American College of Cardiology, American Heart Association and the American Academy of Pediatrics. Prior to the enrollment opening and utilizing the Steering Committee, five Pilot Sites were chosen to apply for accreditation to help further develop the process. These sites are:

  • Cincinnati Children’s Hospital Medical Center
  • University of Colorado Hospital and Colorado Children's Hospital
  • Boston Children’s Hospital & Brigham and Women’s Hospital
  • Lucile Packard Children’s Hospital Stanford and Stanford Health Care
  • University of Washington & Seattle Children’s Hospital

All five Pilot Site programs are currently completing the accreditation process.

The ACHA ACHD Accreditation Program was partially funded by Actelion Pharmaceuticals U.S., Inc. ACHA and Actelion Pharmaceuticals have partnered together since 2007 to support the CHD community. The ACHA ACHD Accreditation Program was also partially funded by the Meil Family Foundation and the James S. Wong Private Foundation.

Interviews with ACHA medical experts and spokespeople as well as patient stories are available upon request.

Angela Murray
(267) 339-0502