Q&A: Why WHO needs to step up when it comes to clubfoot

A clubfoot-specific strategy from the World Health Organization would embolden a global response for the elimination of one of the world’s leading congenital disorders, according to Daphne Sorensen, president at MiracleFeet, an NGO working to tackle the disability. It’s also the top recommendation in a new report by the Clinton Health Access Initiative.

Also known as talipes equinovarus, clubfoot is a congenital disorder that, if left untreated, sees feet turning inward and upward, causing severe physical disability. It affects at least 1 out of 800 births, and while 95% of cases can be treated through the Ponseti method — which uses a series of corrective plaster casts and a nighttime brace, together costing around $500 — it’s estimated that only 15% of children in low- and middle-income countries have access to treatment.

Sorensen sees limited awareness of the condition and a lack of global coordination and leadership to galvanize funding and resources as the thrust of the problem. “Tragically, as of today, there is no WHO strategy nor any adequately committed resources from global or national actors for eliminating neglected clubfoot," she said. This means millions of children are left to live with “a range of physical, social, and economic consequences that deteriorates [the] individual’s quality of life and opportunities."

According to the CHAI report, together the U.S. Agency for International Development and the United Kingdom’s Foreign, Commonwealth & Development Office have only ever invested approximately $5 million to specifically address clubfoot. None of the $103 billion invested globally in newborn and child health between 1999 and 2019 has addressed the condition.

“We need to call this out and improve the coordination and then definitely the funding piece,” Sorensen said, adding that WHO leadership would catalyze global momentum, especially when the treatment is easy to implement and low-cost.

“There is an enormous opportunity and obligation to prevent a significant physical disability for generations of children by ensuring they can access its treatment. When WHO has endorsed a strategy, we have seen remarkable progress for numerous conditions of similar consequence and prevalence,” she said.

Speaking to Devex, Sorensen discussed why access to treatment is such an issue in LMICs, why WHO treatment guidelines that include the Ponseti method matter, and how the development sector can solve the problem.

This conversation has been edited for length and clarity.

What barriers stand in the way of children accessing treatment for clubfoot?

As with other disabilities, families of children with clubfoot face significant barriers to accessing care … In high-income countries, clubfoot treatment is embedded into the health systems. Steven Gerrard, the famous U.K. footballer, was born with clubfoot. [So was] Mia Hamm, the U.S. soccer player, Troy Aikman, an American football player, Damon Wayans, the actor. All of them were born with clubfoot but you don't hear about it, you don't see any consequences or impact because they were fully treated.

In the past 20 years, funding from bilateral global health donors has been largely absent for clubfoot … It's a severely under-prioritized disability. Disability-inclusive health services, and access to rehabilitation and assistive technology have traditionally fallen through the cracks. The result now is a surging disability rate among global youth, of which congenital birth defects, and musculoskeletal conditions are major causes.

Although it's nonsurgical and easy to provide, the Ponseti method didn't gain global recognition until about 2005 and so the solvability of this condition simply missed the modern development era. The advocacy that other conditions received as foreign assistance and health priorities took shape excluded clubfoot from that conversation.

But by the same token, ending clubfoot disability could be the world's next example of what's possible ... 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.

How can these barriers be overcome?

At the country level, ministries should work to mainstream screening and treatment into newborn and child health services, policies, and plans. At the most basic level, we need midwives, birth attendants, and other primary health care workers to know about clubfoot so they can name it, recognize it, and refer it. The country-level ministries should also be collecting disaggregated data on congenital birth defects so that we can have a better understanding of the prevalence of clubfoot.

Then, going back to the donor community, we must engage donors and development finance institutions, from USAID to the World Bank, to invest more in disabilities like untreated clubfoot and also assistive technology and rehabilitation services proportional to these problems.

There are many conditions where physical therapy and rehabilitation is needed to manage a condition — but with clubfoot we're talking about a unique situation where a disability can be essentially fully prevented for 95% of children when treated. It's a preventable disability, which is a unique and very opportune space.

Based on the new CHAI report, what recommendations do you have on how to ensure all children born with clubfoot receive treatment?

Going back to introducing birth defect screening, we need to make sure that the detection and treatment is integrated into mainstream health systems in LMICs. It should not just be mainstreamed as an essential newborn and child health services, but also incorporated into government-led maternal newborn child health policies, plans, and training curriculums. With that, the call for WHO to respond with a strategy or guidelines for the elimination of untreated clubfoot, in order to coordinate resources and expertise at the highest levels, is key.

Reintroducing clubfoot to this vast audience of the global health sector working in maternal and child health could go such a long way in addressing this gap … It's not a heavy lift and if we come together to recognize that this issue exists, recognize that it's been woefully underfunded and neglected, and put together a global strategy, we can actually solve this problem.

Could clubfoot be the next elimination story? Read more about the case for universal treatment.