Taking action, lifelong care, and mental health key messages at 2024 World Health Assembly

Global ARCH / Taking action, lifelong care, and mental health key messages at 2024 World Health Assembly

Taking action, lifelong care, and mental health key messages at 2024 World Health Assembly

Global ARCH played a key role at the World Health Assembly Side Event in Geneva, collaborating with allied organizations to present “Congenital Anomalies and Universal Health: Leaving No One Behind”. Bistra Zheleva, Global ARCH board member, and Vice President of Global Strategy and Advocacy at Children’s HeartLink, introduced the side event saying, “We are here on the sidelines of a very important meeting where many different topics are being discussed, including universal health coverage. Congenital anomalies are missing from the agenda. This is important because there is increasing evidence that congenital anomalies are becoming a major contributor to childhood mortality. Without addressing this, targets set for reducing childhood mortality will likely be missed.”

“With greater focus and investment, we can help give children born with a serious condition a healthier life, no matter where they are born.”
– Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization

During the WHA Side Event on May 27th, 2024, Global ARCH, along with Children’s HeartLink, Operation Smile, MiracleFeet, International Federation for Spina Bifida and Hydrocephalus, Jhpiego, and the Global Alliance for Surgical, Obstetric, Trauma, and Anaesthesia Care – G4 Alliance, discussed the resources necessary to serve children born with congenital anomalies around the globe in need of lifelong care, and how to advocate with policymakers for their inclusion in the universal health coverage agenda. The audience included policy makers; leading global health organization representatives, thought leaders, and advocates; governmental and private donors; and the media.

Dr. Anshu Banerjee, Director for the Department of Maternal, Newborn, Child and Adolescent Health and Ageing at the World Health Organization (WHO), showed that the proportion of mortality due to birth defects is close to 30%, with 90% in low-to-middle-income countries for those under 5 years of age. He stressed the importance of creating programs that can be implemented everywhere within countries and linked across healthcare systems.

The panel of patients and advocates was moderated by Global ARCH president Amy Verstappen, who spoke briefly about her own journey with complex congenital heart disease, saying “It is so important to ensure that every person like me achieves what the WHO promises each of us, which is that we will achieve the highest achievable state of health throughout our lifespan.”

Laura Alvarez, born with cleft palate and now a volunteer with Operation Smile stressed the importance of using the right terms – avoiding “defects” – and to think of people with congenital anomalies as if they were your own child, where you would want the best for them. Laura also spoke about the important of psychological care so people with congenital anomalies can have a healthy and fulfilling life with dignity, and why having a plan, like the Mental Health Action plan of 2013, is so important.

Joumana Atallah, founder of Brave Heart Fund in Lebanon gave an impassioned talk, saying “We want our children to live, so we’re going to get it done. We just have to do it.” She spoke about the necessity of collaborations between the public, private, philanthropists, and patients, so that patients receive the highest quality care.

The next panel featured representative from the International Federation for Spina Bifida and Hydrocephalus (IFSBH), Operation Smile, MiracleFeet, International Federation for Spina Bifida and Hydrocephalus, Jhpiego, and the Global Alliance for Surgical, Obstetric, Trauma, and Anaesthesia Care – G4 Alliance.

Sylvia Roozen, Secretary General at the International Federation for Spina Bifida and Hydrocephalus (IFSBH), said that society can play the part of “honest broker” between private, public and civic partnerships to bring countries and communities together to ensure the needs of the patients and their families are met. She stressed that while taking a primary prevention approach is important, we must not forget about the people already living with disability.

Ruben Ayala, Chief of Policy and Advocacy for Operation Smile, addressed the health challenges to support successful surgery, such as malnutrition, speech therapy, and mental health support to help people cope with their congenital anomaly. “The continuum is what gives people the opportunity to live a long and happy life.”

Amy Verstappen, Global ARCH President stressed the importance of lifelong care, saying that developed countries made an essential mistake that can be avoided in countries that are just developing treatment pathways for congenital anomalies: “The great new is that so many children now survive but the bad news is that it’s all a chronic disease. High-income countries did not prepare for this at all with congenital heart disease patients, so now we’re playing catch-up.”

Natalie Shenemen, Advocacy Manager, G4 alliance, a 70-member advocacy coalition to advocate for neglected surgical patients, praised their ability to collaborate around agendas to strengthen healthcare systems. She said that a Coalition can bring together messages, such as the need for mental health care to create an agenda to move healthcare forward.

Dr. Sreehari M Nair, former Child Health and RBSK State Nodal Officer, Department of Health Kerala spoke about the congenital anomalies program to reduce the infant mortality rate in Kerala, India. Since 2022, the rate of infant mortality in India has declined once they focussed on congenital heart disease, the major contributor. They improved their newborn screening and referral pathways for surgery and follow-up, including neurodevelopmental outcomes and quality of life. This program is one example of how the government used the data to make important decisions, along with the input of civil society partners.

Salimah Walani, Global Policy & Advocacy Advisor (USA), Miracle Feet, and panel moderator, closed the event, saying “I had no idea that one day we’ll all be sitting here in Geneva, convening and talking about this very important issue. So let me first and foremost thank our patient representatives. Your experiences and your stories inspire us to do, to dare to do more. And we want to make sure that no babies are left without care…Babies are not heads, feet, hearts. They are babies, and they need to be taken care of.”

Global ARCH

Nahimeh Jaffar 

Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).


Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.

Amy Verstappen, President

Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world.  Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.