Introduction

The past century witnessed remarkable advancements in the treatment and curability of paediatric cancers. Yet, significant disparities persist between outcomes in high-income and low-and middle-income countries (LMICs). In India, the evolution of paediatric oncology has been both challenging and inspiring—shaped by visionary leadership, gradual institutional development, and the emergence of a vibrant community of clinicians and researchers.

Historical Perspective

The foundations of paediatric oncology in India were laid by pioneering clinicians who recognised childhood cancer as a distinct medical discipline. Dedicated units emerged at the Cancer Institute, Chennai and Tata Memorial Hospital (TMH), Mumbai, between 1970 and 1990. The journey of early paediatric oncologists was marked by limited drug access, inadequate supportive care, and pervasive nihilism among healthcare providers and policymakers.

My first encounter with paediatric oncology was as a medical student in the early 1990s, witnessing the tragic death of a 13-year-old child with acute lymphoblastic leukaemia following sudden hematemesis—when only whole fresh blood was available for transfusion. During my postgraduate training at Government Medical College, Kottayam, the department head—a visionary—recognised the need for a dedicated oncology ward and posted us to formulate protocols. Challenges were immense: high infection-related mortality due to a lack of antibiotics, bleeding due to absence of blood components, and a dearth of psychosocial support for families. Parents were often forced to travel to cities like Ernakulam to procure antibiotics and platelet components.

A subsequent training stint at the Cancer Institute, Chennai, revealed the immense potential of structured paediatric oncology care. Since then, the speciality has grown tremendously - these are truly exciting times.

Epidemiology and Data Evolution

Reliable data on childhood cancer in India was lacking until the National Cancer Registry Program of the Indian Council of Medical Research (ICMR) released the first population-based report (2001 - 2004) in 2006. Today, there is detailed epidemiological data on paediatric cancers.

In 2025, India launched its first dedicated Paediatric Cancer Registry, spearheaded by the paediatric oncology community. Earlier this year, a population-based childhood cancer registry for Greater Chennai was released, reporting an incidence of 136 per million (2022 - 2023) and a two-year survival rate of 60%. Disease-specific registries, beginning with retinoblastoma, are also underway. Additionally, situational analyses published by ICMR and ongoing SIOP mapping projects are enriching our understanding of care delivery gaps.

Workforce Development

Until 2008, training in paediatric haematology-oncology was largely confined to informal institutional fellowships. Since then, structured programmes such as Doctorate of Medicine (DM) and Fellowship of the National Board (FNB) have greatly expanded training capacity.

The Paediatric Haematology Oncology (PHO) Chapter of the Indian Academy of Paediatrics (IAP), established in 1987, now has over 1,280 members. Its flagship initiative, the National Training Program in Practical Paediatric Oncology (NTP-PPO), has conducted more than 100 workshops since its inception in 1996.

Research in Paediatric Oncology

Research has been pivotal in improving childhood cancer outcomes globally, and India is now making meaningful contributions. Historically, multi-institutional and multidisciplinary research efforts - such as CALGB, CCG, UKALL and SIOP - have transformed paediatric cancer treatment paradigms.

India’s first intensive protocol-based treatment was the MCP-841 protocol for acute lymphoblastic leukaemia, developed in collaboration between the Cancer Institute, Chennai, and the International Network for Cancer Treatment and Research (INCTR) in the early 1980s. This protocol doubled event-free survival rates from 20% to 40% and was later adopted by TMH and AIIMS, New Delhi.

Recognising the need for collaborative research, the Indian Paediatric Oncology Group (InPOG) was formed in 2008. It later evolved into the INPHOG Research Foundation, registered as a Section 8 entity in 2021. INPHOG now has 23 subcommittees covering malignant and non-malignant disorders. As of May 2025, it has 59 institutions as members and 265 delegates from across the country. INPHOG also provides clinical research/data entry personnel to the institutional members. Help with setting up clinical trials units and biostatistical support for studies are also ongoing activities. Many studies like the ICICLE study in ALL, and C2S study in survivorship are creating an impact in paediatric oncology. It is definitely an exciting time for paediatric oncology research in India.

Multi-Stakeholder Engagement

Collaborations between government initiatives and NGOs have significantly improved treatment adherence by supporting children and families. Many state governments now cover the entire treatment journey for children with cancer, while NGOs have established accommodation facilities near treatment centres.

The Indian Childhood Cancer Initiative (ICCi), launched by the St. Jude Global Alliance in 2023, is a multi-stakeholder platform aiming to develop a national childhood cancer policy. Its mission is aligned with the WHO Global Initiative for Childhood Cancer: to achieve 60% survival and 100% access by 2030. Task forces under ICCi are working on access, workforce training, drug and diagnostics availability, psychosocial support, palliative care, research, supportive care and awareness.

Persistent Challenges

Despite tremendous progress, challenges remain. Delayed diagnosis and misdiagnosis are common, driven by low awareness, illiteracy, limited access, and socioeconomic barriers - especially in rural areas. Out-of-pocket expenses remain a significant hurdle in LMICs like India. Treatment abandonment rates are still estimated at 20–30%, compounded by unstructured referral systems and insufficient paediatric oncology facilities.

Emotional Burden

Paediatric oncologists often form deep emotional bonds with their patients and families, making the experience of relapse or death particularly distressing. Communicating bad news repeatedly can lead to compassion fatigue and burnout. Physicians are increasingly faced with ethically complex situations - such as families requesting futile treatments or the struggle of arranging finances. The emotional and mental toll on healthcare professionals cannot be underestimated.

Young Paediatric Oncologists: Voices from the Field

In my interactions with young paediatric oncologists, a common concern is the lack of employment opportunities. Paediatric oncology requires multidisciplinary teams and infrastructure not universally available. Despite these constraints, many young professionals remain committed, even willing to relocate to underserved areas. Since paediatric oncology is relatively new, resistance from traditional medical and radiation oncology teams - who have long managed childhood cancers - can be discouraging.

Conclusion

Paediatric oncology in India has come a long way - from humble beginnings to a structured and vibrant field. Today, it stands poised for transformation, powered by dedicated professionals, growing research ecosystems, supportive policies and compassionate NGOs.

While the road ahead includes significant challenges - ranging from infrastructure gaps to emotional tolls - the foundation has been laid for a future where every child with cancer in India receives equitable, comprehensive, and effective care. With sustained investments in training, research, policy, and partnerships, we can ensure that no child is denied the chance to survive - and thrive.