Cleft Care in India: A case for multiple stakeholder collaborations

By Mamta Carroll

The COVID-19 pandemic has reversed decades of progress in healthcare, poverty alleviation and mass education. The health, economic and social crises triggered by COVID-19 call for increased national collaboration and solidarity to support the most vulnerable populations. 35,000+ children are born with cleft lip and/or palate every year in India in India which accounts to 1 in 700 live births. Left untreated, this is a socio-economic problem as much as it is a medical one.

A multi-stakeholder approach along with a robust model of capacity building and awareness generation has proved tremendously successful in cleft care in India. With a lot of ground yet to cover, a synergistic approach of robust program implementation and capacity building; optimal use of government platforms for awareness and last-mile connectivity; partnership with the larger medical community; and dedicated support of corporates and private individuals has enabled organisations to support over 620,000 cleft surgeries at zero cost to the poorest and most vulnerable patients across India since its inception in 2000.

Partners play a vital role in helping create awareness and ensuring an end-to-end seamless execution of the cleft surgeries. As of date, cleft surgeries are undertaken with the support of 250 partner surgeons and 225 partner anesthetists across a network of 144 partner hospitals that specialize in cleft surgeries. Support from the private sector has a big role to play in accelerating impact on ground, especially for ignored, yet acutely important causes like cleft lip and palate. A great example of this is the launch of India’s first toll-free national cleft helpline – 1800 103 8301 by GSK Consumer Healthcare. Accessible to people throughout India who are looking for information about cleft treatment, the helpline number has been a game changer for people looking for information about the condition and its treatment, especially in remote locations and we get thousands of enquiries via the toll-free number on a regular basis.

The multi-stakeholder model combines the Government’s commitment and efforts through the National Health Mission, the expertise of an established non-profit, and the role played by India’s corporate sector under its Corporate Social Responsibility mandate.

The first lesson has to do with the importance of generating awareness. This is a condition plagued by myths and cultural beliefs, it is mostly the mother who is blamed for bearing a child with cleft. Children with clefts find it difficult to feed, eat, breathe, and speak normally. Lack of awareness about this treatable birth difference and the availability of free or affordable treatment often keeps patients and their families from accessing treatment, forfeiting their chances to live healthy and normal lives

Generating awareness about this medical condition and its treatment, both at grassroots level, and among the general population is paramount. The Government’s network of Public Health Centres (PHCs) and Asha workers, and local organizations play a huge role in addressing these issues.

A proactive multi-disciplinary intervention led approach is the second lesson that can help inform options in the wider healthcare sector. The cleft condition requires the intervention of a team of different specialists from the foetal stage itself and holistic cleft treatment starts from the day a child is born.

Creating robust local healthcare models is the third lesson for success. Researchers have found that a model which co-opts local medical professionals increases the number of procedures per hospital per year, decreases patient waiting lists, and accelerates patient follow-up. It is critical to elevate local expertise by strengthening doctors’ skills and the level of care in local hospitals. Training local doctors to deliver cleft surgeries increases the likelihood of patients benefiting long term.

Ayushmaan Bharat and the National Health Mission will play a vital role in ensuring that no one is left behind when it comes to accessibility and affordability of quality of healthcare.

2030 is a mere decade away, and the country needs all stakeholders to recalibrate, expand and co-create their approach to meet India’s commitment to SDG 3.

(The columnist is Vice President and Regional Director – Asia, Smile Train. Views expressed are the author’s own.)