The Time Is Now: New Report Calls for Global Action for Children and Adults with Clubfoot
A new report by the Clinton Health Access Initiative (CHAI) for AT2030, a UK Aid-funded program led by the Global Disability Innovation Hub (GDI Hub), aims to drive progress for children and adults with clubfoot to reach their full potential.
Clubfoot, a leading birth defect, affects an estimated 200,000 children a year, 144,000 of whom cannot access its treatment. Although it affects more children than most other structural birth defects, and even though virtually all children can achieve lifelong mobility without surgery, many governments and bilateral donors still do not view clubfoot intervention as a priority newborn health issue.
CHAI and GDI Hub feel that now is the time to address this inequality, providing momentum to a movement that began two decades ago.
The AT2030 report is the first of its kind, by a global development agency, to specifically investigate the barriers to clubfoot treatment in low- and middle-income countries (LMICs). It brought together some of the most knowledgeable stakeholders in the sector and includes a number of high-impact, evidence-based recommendations.
The report finds that in order to increase access to clubfoot services in LMICs in particular, there is an urgent need to develop global WHO guidelines to bolster government-led ownership, increase financing, and coordinate strategies for mainstreaming clubfoot’s standard of care, the Ponseti method, across health systems and with other child health services—beginning with newborn detection and referral.
“There is no consensus or agreed treatment guidelines by the WHO that include the Ponseti method. This contributes to a lack of integration of clubfoot services within government-led systems for neonatal and child health care,” the report finds. Clubfoot is included in WHO’s congenital anomaly surveillance and monitoring guidance, launched in December 2020; however, strategies related to this effort have not yet prioritized or targeted clubfoot interventions.
“It’s a preventable disability,”MiracleFeet President Daphne Sorensen said in an interview with Devex. “If we start tackling this issue in a coordinated fashion with dedicated funding and the global leadership we need, we’re talking about 4 million people living free of a major functional impairment and its stigma two decades from now.”
Indeed, the need for additional investment is a key recommendation: “[In order] to increase access to clubfoot services in LMICs, further investment is needed to achieve the vision of a world where thousands of children each year can receive treatment and therefore avoid a life-long impairment” writes the lead author. Since 2000, G7 donors have invested less than $6 million USD total in clubfoot treatment, and none of the $103 billion of development assistance invested in newborn and child health initiatives globally has supported clubfoot treatment.
GDI Hub also aims to address the issue of investment through the AT2030 programme, which established the AT Impact Fund (ATIF), designed to support disability innovation ventures to scale through the use of capital and technical assistance. MiracleFeet is one of the first organizations to benefit from ATIF.
“Increasing access to clubfoot treatment in LMICs will require a multi-faceted approach that combines interventions that address global barriers to access, encourage government and donor prioritisation, and accelerate the scale-up of models and tools that increase capacity,” AT2030 and partners conclude. They offer a detailed list of recommendations for global to national actors to create policies, train personnel, and ensure supply chains for treatment materials and assistive products.
Vicki Austin, CEO of GDI Hub, highlighted further the significance of the report: “This report wasn’t supposed to be written. The researchers discovered so much evidence related to clubfoot when writing the Product Narrative for prosthetics that we collectively felt a duty to publish it, and of course, that makes the need for it self-evident. Children and adults with clubfoot should not be left behind.” Frederick Seghers, director of global markets for CHAI, authored the report in consultation with clubfoot sector experts and partners from the AT2030 programme and ATscale, the Global Partnership for Assistive Technology.
The research is part of GDI Hub’s AT2030 work with WHO and UNICEF to drive global affordability and availability of assistive products through market-shaping, which includes the production of 26 essential Assistive Product Specifications to guide countries in assistive product provision. The WHO has also produced the Assistive Product’s List which can aid national government to prioritize assistive products in health systems supply chains. Clubfoot braces have been included in the first ever APS, a global guide for assistive technology to improve the life of millions, which WHO, AT2030, and UNICEF launched in March 2021.
Led by the Global Disability Innovation Hub and funded by UK Aid, AT2030 tests ‘what works’ to improve access to life-changing Assistive Technology (AT) for all; investing £20m over 5 years to support solutions to scale. AT2030 will reach 9 million directly and 6 million more indirectly, driving a lifetime of potential. AT2030 is operational in 31 countries globally.