It has been more than a year. There are usually no surprises when you work in the same field for almost two decades. You know what to expect before it occurs. Treating children with cancer is an emotional rollercoaster. One gets to handle sick children in pain, anxious parents in denial, well-meaning aggressive relatives, depressed families, happy, elated children on the path to recovery, love, life, stress—you name it. But nothing could have prepared us for this decision made by a young couple from a village around 300 km away from where we work. They did not want to treat their three-year-old daughter, who had just been diagnosed with cancer. Why? Because there was no one to feed their buffalo back home.
It is not rare for families to decide to abandon treatment for their child. In a more developed economy with a social security system that recognises the child as a person, parental consent is often not needed to administer lifesaving treatment. Parents who refuse treatment for potentially curable diseases can have their children taken away and placed in foster homes or institutions until their treatment is over. But for us, at least until now, that is not an option. We still depend on the “parent’s willingness to treat” their ward.
We see abandonment of treatment in almost 10% of the children we diagnose with cancer. The reasons are many. In most cases, families do not want to live in another city, especially an expensive one such as ours, and fend for themselves until the treatment is over. Even if we take care of treatment completely, there are still out-of-pocket expenses. As a team handling this issue frequently, we have ready solutions: travel support, food for parents, lodging nearby, etc. But nothing could have prepared us for the buffalo. Keeping the buffalo alive was more important than treating the girl; the buffalo was expensive, provided their daily livelihood, and they made every effort to save its life.
Childhood cancer survival rates have improved dramatically over the last four to five decades. This has come with better tools for risk stratification and supportive care. The medicines we use in cancer care remain largely the same. Doses are now better adjusted so that a cure does not come at the cost of long-term side effects. Children improve, and the majority are cured. They go on with their lives and grow up to be productive citizens who contribute to the nation’s economy.
However, cure rates are not uniform globally. It is estimated that around 400,000 children aged 0–19 years are diagnosed with cancer annually. Of these, approximately 90% are in low- and middle-income economies with weaker health systems and networks to provide early and immediate healthcare. Consequently, cancers go undetected, untreated, or undertreated, leaving us with no defined denominator to calculate outcomes. Estimates suggest that childhood cancer survival rates range from 15–45% in such countries, compared to over 80% in high-income countries, where cure rates are determined solely by the biology of the disease rather than logistical barriers to treatment.
In 2018, the World Health Organization launched the Global Initiative for Childhood Cancer, bringing together hospitals, foundations, professional organisations, and individuals with the common goal of improving childhood cancer outcomes. The initiative aims to raise survival rates to at least 60% by 2030, breaking the unacceptable reality that cancer outcomes depend on where a child is born. Since this declaration, systems have been established where none previously existed, enabling early diagnosis, timely referrals, treatment, and palliative care when a cure is not possible.
On 11 February 2025, WHO announced a groundbreaking initiative in collaboration with St Jude Children’s Hospital, USA. Through their Global Platform for Access to Childhood Cancer Medicines, critically needed cancer drugs will be provided to Mongolia, Uzbekistan, Ecuador, Jordan, Nepal, and Zambia at no cost, ensuring an uninterrupted supply of quality medicines. This initiative addresses supply chain issues, drug tendering, quality assurance of generics, and cold chain maintenance. It is expected to reach 120,000 children in low- and middle-income countries over the next few years.
There are several such initiatives led by the International Society of Paediatric Oncology, the International Paediatric Association, Childhood Cancer International, and similar organisations. These efforts aim to raise awareness, train healthcare workers for early diagnosis, and empower patients to advocate for their rights.
Back home, India still has a long way to go before we reach the standards of developed economies. As a heterogeneous country, there are wide disparities in care, even within the same city and for the same diagnosis. Recently, we analysed the outcomes of children treated under a uniform protocol for Acute Lymphoblastic Leukaemia, the most common childhood cancer, at our centre. Over 7.5 years, we diagnosed 432 patients. Of these, 43 children discontinued treatment before it could start, and 10 were lost to follow-up. Twenty-one children died within the first two weeks of hospitalisation, highlighting delays in referral and the advanced stage of disease at presentation. In 2024, nearly 30% of our patients presented with a white blood cell count exceeding 100,000/mL, a stark contrast to figures in the West.
Why do patients abandon treatment? The most cited reason is financial constraints. According to NITI Aayog, around 7% of India’s population is pushed into poverty each year due to healthcare costs. While our centre provides free or nominally priced treatment through Ayushman Bharat and other government schemes, abandonment persists due to deeper social issues. Many families cannot afford to stay in another city, even if treatment costs are covered, because the father must continue working to support the family.
Despite initiatives like Beti Bachao, Beti Padhao, we still see families reluctant to treat a girl child or bring a healthy boy to the hospital for bone marrow donation to save his ill sister. Myths about cancer and its treatments abound, exacerbated by the expanding field of alternative medicine, which falsely promises “no side effects” and leads to preventable deaths.
Two years ago, we launched survivor clinics, a hugely successful initiative. Survivors who have reintegrated into society speak to current patients and parents, reassuring them that treatment is possible and that a normal life awaits beyond the struggle.
As we observe another International Childhood Cancer Day on 15 February, the steps ahead are clear.
– A uniform cancer registry is needed to track all diagnosed children, regardless of healthcare sector.
– A structured referral system must be in place to prevent overburdening tertiary centres.
– Universal healthcare must be genuinely universal, ensuring care based on diagnosis rather than financial status.
– Strengthening healthcare chains from Ayushman Bharat Health and Wellness Centres to district hospitals and medical colleges is crucial.
– Early detection measures should be integrated into the Rashtriya Bal Suraksha Karyakram, adding indicators like anaemia and white reflex to facilitate community-level diagnoses.
The possibilities are immense.
This week, an 18-year-old boy with leukaemia, nearly taken home because his parents needed to “prepare for his sister’s wedding,” managed to persuade them to let him continue treatment.
As a society, we frequently discuss individual rights—our right to choose our pronouns, whom to marry, where to work, what to wear, and what to eat. Life is all about choices.
But what about the right to live—or at least the right to fight for life? Should age matter? The right to live must be universal. We need to be the voice for those who have none.
About The Author
The writer is Additional Professor and Head of the Department of Paediatric Haematology Oncology, Postgraduate Institute of Child Health, Noida. She serves as the Chair of the Childhood Cancer Working Group of the International Paediatric Association. The views expressed are personal
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