Diversity, equity and inclusion are central to ACHA’s mission. Congenital heart disease (CHD) affects 1 in 100 babies born each year, regardless of their race, ethnicity, socioeconomic background or gender. ACHA embraces the rich diversity that comes with having different heart defects and experiences, and we are committed to improving health outcomes and access to care for all adults living with CHD.
In July 2020, the CEO Task Force on ACHD Health Disparities and Diversity was created. The work of these 20 individuals representing patients, board members, medical professionals and staff, culminated in a comprehensive report with the recommended key concepts:
Acknowledgment: It is important to acknowledge that ACHA has been unintentionally and unconsciously biased in the past. Now is the time for us to take intentional steps to be welcoming and inclusive of all people living with ACHD.
Baseline understanding: Increased focus on gathering and analyzing demographic and social determinants of health data for patients in specialized heart care—and those who are not—is foundational to ACHA’s current and future outreach and awareness actions.
Trainings: At all levels of the organization (staff, board, peer mentors, committee members, event volunteers, members), training sessions are a critical and worthy investment of time and money—the starting point to encouraging a culture of diversity, equity and inclusion (DEI).
Recognition: We do not have the internal expertise to properly train, market and organize when it comes to issues of DEI. We need to collaborate with external experts.
Messaging: Important steps are a review of selected ACHA communications assets for any unintended biases, as well as the development of an organizational DEI statement/policy to intentionally guide our future thoughts and actions (which is shared above).
Missed opportunities: There will be many missed opportunities if we do not place organizational focus on DEI—for new stories, new volunteers, and most importantly, to help the many adults with CHD who right now are facing many barriers to care.
The ACHA Board of Directors concurred with these key concepts and endorsed the formation of a standing Diversity, Equity and Inclusion (DEI) Committee to move this work forward. This diverse group of patients, providers, staff and board members will recommend initiatives that ensure ACHA’s research, outreach and advocacy work are supportive and representative of all impacted by CHD.
The members of the DEI Committee are:
- Heather Abbott, New York, NY
- Shantelle Bartra, Fort Myers, FL
- Binta Baudy (co-chair), Houston, TX
- Claudia Norman, New Britain, CT
- Paulina Perez, Jackson, MI
- Mark Roeder, Baltimore, MD
- Arwa Saidi, MB, BCh, MEd, FACC, Winter Park, FL
- Rashmi Thapa, Rochester, MN
- Susan Timmins (co-chair), Holmes Beach, FL
- Jessica Vargas-Miranda, San Diego, CA
- Nolan Warthen, Astoria, NY