Childhood Clubfoot Correction Leads to a Lifetime of Benefits
Navigating life with a disability in countries with limited infrastructure and social support can be exceptionally difficult.
For caregivers and families, disability takes an economic and social toll.
In a recent study, mothers in low- and middle-income countries (LMICs) perceived having a disabled child as worse than death. The burden of caregiving for people with disabilities in LMICs has been mostly neglected—including the physical, financial, social, and emotional consequences.
The responsibility of caring for children with disabilities, like untreated clubfoot, falls predominantly on women and mothers.
Caretakers in many contexts suffer from discrimination and stigma—including mothers who may be blamed for giving birth to a child with a birth defect or disability—while entire families are often negatively affected by stigma and diminished opportunities for education, jobs, and participation in community life.
Proven Benefits of Global Health Investments
By investing in the healthcare and assistive technology needs of children with disabilities, philanthropists, donors, non-governmental organizations, and countries not only improve individual lives, but they also unleash global economic potential and build the long-term capacity of healthcare systems.
If treated, the $130,000 lifetime return on investment applied to approximately 200,000 children born with clubfoot in LMICs each year equates to $24 billion in additional earnings added to world economies over the course of their lives.
Prioritizing clubfoot treatment also expands and strengthens the health workforce. Investing in physical therapists, orthopedic surgeons, and nurses–the staff needed to treat clubfoot–contributes to the same medical systems that help children and adults with other musculoskeletal and physical difficulties. Treating each case of clubfoot has enormous personal and global benefits.
For people living with disabilities, the consequences can be way worse.
Compared to children without disabilities, children with physical or developmental impairments are 49% more likely to never attend school, 42% less likely to have foundational reading and math skills, 41% more likely to feel discriminated against, and 51% more likely to feel unhappy. In addition to the enormous health and social consequences children with disabilities face, they also bear direct and indirect financial costs. People living with disabilities and their families spend significantly more of their income on healthcare, assistive devices, transportation, and other services just to achieve the same or similar standard of living as individuals without disabilities. They are also 50 times more likely to acquire catastrophic healthcare costs.
Finally, 80- 90% of people with disabilities of working age in low-income countries are under or unemployed.
When children born with clubfoot benefit from high-quality treatment, they avoid all of this. With effective treatment, many barriers for a healthy and productive life fall away, such as the stigma of disability and mobility challenges, allowing children to fully participate in their communities and to thrive. Children who are treated will also earn an estimated average of $120,000 more over the course of their lifetimes than they would living with a severe disability—a 240 to 1 return on the initial investment of $500 spent on clubfoot treatment within the first year of birth.
In the last 20 years, global donors have invested a collective $103 billion in development assistance dollars (2019 USD) to save and improve the lives of children around the world—and enormous progress has been made.
As a result, the mortality rate for children under five dropped by half from 78.3 deaths per 1,000 in 1999 to 37.7 in 2019. The combined efforts of philanthropists, governments, and health systems can make incredible progress possible, especially with pooled resources and coordinated attention toward achievable goals. Since the 1980s, illness and fatality related to guinea worm, leprosy, polio, and HIV have decreased significantly around the world as a result of global health community action—and funding.
Unbeknownst to many, external congenital anomalies, of which clubfoot is one of the most common and serious, cause more health loss (defined as death, illness, or disability) in children than any infectious or parasitic disease combined—conditions you hear about far more often, like malaria and HIV/AIDS.
Due to global birth rates, 90% of new clubfoot cases occur in LMICs where treatment is unavailable or very limited.
Global investment can solve the global clubfoot burden.
Whether by surgery (until the early 2000s) or through the Ponseti method thereafter, thefact that clubfoot is highly treatable is what makes it virtually hidden from public view in countries like the United States and other developed nations. Of the 550,000 people living in the US today who were born with clubfoot, virtually all benefited from some form of treatment.
Together we can facilitate the same outcomes in LMICs. Clubfoot has remained largely absent from the priority lists of government and large foundation donors, as well as the multilateral organizations that set global health agendas. While addressing clubfoot aligns with UN and WHO initiatives, clubfoot has not benefited from a dedicated strategy or campaign bolstered by multilateral support. In fact, despite how common it is, clubfoot is not even measured or tracked as a discrete condition by the influential Global Burden of Disease (GBD) Study, making it more difficult to measure and compare its share of the disease burden in LMICs.
Engaging local partners and providers, expanding access to services, and integrating treatment into the existing public health systems has enabled treatment for tens of thousands of children in LMICs between 2000 – 2022. Thanks to targeted efforts by MiracleFeet and its local partner NGOs, several LMICs are already reaching more than 50% of babies born wit clubfoot, including Tanzania, Bangladesh, Liberia, Paraguay, Nicaragua, Zimbabwe and Sri Lanka. Twenty years from now, with wide scale investment and action, we can prevent millions of children from living with this disability. An investment of $160-$200 million over the next twenty years can ensure every child born with clubfoot receives the care they deserve. This is a fraction of what has been spent to end other conditions that have comparable impact on a child’s quality of life. By doing so, we can prevent a painful lifelong disability, and transform the trajectory of young lives around the world forever.
References
1. Spiegel E, Jondhale S, Brajkovic I, Nesbit KC, Allen IE, Bhutani V, et al. Valuation of Quality of Life in Pediatric Disability in a Developing Country. J Child Neurol. 2018;33(9):601-9.
2. Thrush A, Hyder AA. The neglected burden of caregiving in low- and middle-income countries. Disabil Health J. 2014;7(3):262-72
3. Seen, Counted, Included: Using data to shed light on the well-being of children with disabilities. New York: UNICEF; 2021.
4. World Report on Disability 2011. WHO Guidelines Approved by the Guidelines Review Committee. Geneva2011.
5. Kuper H, & Heydt, P. . The Missing Billion: Acces to Health Services for 1 Billion People with Disabilities. The Missing Billions Initiative; 2019.
6. Seghers F. Preventing lifelong impairment: Access to clubfoot treatment in low- and middle-income countries. Clinton Health Access Initiative; 2021.
7. Mortality rate under-5 (per 1,000 live births). In: Bank W, editor. 2020.
8. Organization WH. Global Health Estimates 2019: Disease burden by Cause, Age, Sex, by Country and by Region, 2000-2019. In: Organization WH, editor. Geneva: World Health Organization; 2020. p. https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/globalhealth-estimates-leading-causes-of-dalys.