WHA77 Side Event Congenital Anomalies and Universal Health: Leaving No One Behind

The World Health Assembly (WHA) following the United Nations High Level Meeting on Universal Health Coverage is an important opportunity to hear how countries are progressing on achieving health for all around the globe. But often the needs of individuals born with congenital anomalies born with congenital anomalies who require specialty healthcare aren’t considered in the design of essential benefits for universal health care programs. Several countries have taken bold steps to prioritise and invest in the provision of specialised care to address this gap. But many more need to step up to the plate to ensure true universal health care and coverage for all. 

For this reason, IF together with its partners organised an in-person WHA side event titled ‘Congenital Anomalies and Universal Health: Leaving No One Behind’. During this side event on May 27th, 2024 it was discussed what resources are needed 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. Speakers at the side event shared key lessons learned and explored ways to integrate the screening and management of congenital conditions into national and sub-national policies as a critical contribution to addressing the SDG 3 targets. For instance, by improving access to essential medicines, expanding financial protection for surgical and medical treatment, and including congenital anomalies in Maternal, Newborn and Child Health and Noncommunicable Diseases strategies.

Date: May 27th, 2024
Time: 8:30 – 10 AM
Location: World Council of Churches, Rte de Ferney 150, 1202 Genève, Switzerland
Collaborating partners: International Federation for Spina Bifida and Hydrocephalus, Children’s HeartLink, Global Alliance for Rheumatic and Congenital Hearts, Operation Smile, MiracleFeet, Jhpiego, Global Alliance for Surgical, Obstetric, Trauma, and Anaesthesia Care – G4 Alliance

Speakers

• Bistra Zheleva, Vice President of Global Strategy and Advocacy, Children’s HeartLink
• Dr. Anshu Banerjee, Director, Maternal, Newborn, Child and Adolescent Health and Ageing World Health Organization
• Amy Verstappen, President, Global Alliance for Rheumatic and Congenital Hearts
• Joumana Atallah & Laura Alvarez, Patient Advocates 
• Dr. Bina Valsangkar, Principal Technical Advisor, Maternal Newborn Health, Technical Leadership & Innovations (TLI), Jhpiego
• Dr. Sylvia Roozen, Secretary General, International Federation for Spina Bifida and Hydrocephalus
• Dr. Salimah Walani, Global Policy and Advocacy Advisor, MiracleFeet
• Dr. Ruben Ayala, Chief of Policy and Advocacy, Operation Smile
• Natalie Sheneman, Advocacy Manager, Global Alliance for Surgical, Obstetric, Trauma, and Anaesthesia Care – G4 Alliance
• Dr. Sreehari Nair, former Child Health and RBSK State Nodal Officer, Kerala Department of Health

Goal WHA77 Side Event

The goal of this side event was to advocate for health investments, policies and programs that provide access to prevention and care for persons born with congenital anomalies in line with the universal health care agenda. 

The key audience included:

• Policy makers: Country Ministry of Health representatives at the World Health Assembly
• Influencers: Leading global health organisation representatives/ global health thought leaders and advocates
• Funders: Global governmental and private donors
• Promoters: Traditional and social media 

Key Policy Asks 

As policymakers on local, regional, state, and international levels, it is imperative to address the needs of children and individuals with congenital anomalies within universal healthcare frameworks. Therefore, it was recommended that policymakers do the following:

• To ensure that the needs of children and persons with congenital anomalies of all ages are included in universal health care programs;
• To raise awareness of the needs, rights and dignity of children and persons with congenital anomalies of all ages in line with the principles of the UN Convention on the Rights of Persons with Disabilities;
• To increase investments for the prevention and care for persons with congenital anomalies, throughout the entire lifespan, including transition to adulthood;
• To actively involve and consult persons with congenital anomalies and their representative organisations in policy making relevant to their lives, needs and realisation of their human rights; 
• To implement policies, programs and awareness campaigns to address the barriers which persons with congenital anomalies and their families encounter in regards to accessing health care, whether they are attitudinal, communication, physical, policy, programmatic, transportation or social. 

Social Media Toolkit 

The Social Media Toolkit for the WHA77 side event, titled ‘Congenital Anomalies and Universal Health: Leaving No One Behind,’ contained a comprehensive array of resources aimed at amplifying advocacy efforts for global commitments to address congenital anomalies and universal health. This toolkit provided an assortment of links, hashtags, key recommendations for policymakers, and messages tailored specifically for social media platforms. Each element was crafted to engage audiences and encourage action.

You can find the Meeting Recording here