Childhood Cancers In India; Worrisome Numbers, Unaware Parents, Anxious Experts

Growing up, we came across a lot of sick people, but meeting a child with any illness, especially cancer is the most disturbing. The birth of a child is the most celebrated day in a family. It is a gift from the almighty and seeing this child suffer at the hands of cancer is unimaginable. However, childhood cancer is a hard fact. 

According to the World Health Organisation (WHO), every year globally an estimated 4,00,000 children and adolescents (0-19 years of age) are diagnosed with cancer. India’s childhood cancer burden is around 20 per cent i.e, 75,000 children are diagnosed with cancer every year. And with changing lifestyles this number is increasing.

As of 2020 it is estimated that 18.1 million people are suffering from cancer and this number is increasing daily. Today cancer is a pandemic, affecting almost every family. Almost everyone today has a near or a distant relative, friend or known to suffering from cancer. Compared to adults, cancer in children is rare. 

The types of cancer are also different. Adults are more likely to suffer from breast cancer, colon cancer and lung cancer. But children suffer most commonly from acute lymphoid leukaemia (ALL), others being Ewings sarcoma and neuroblastoma and this is what makes childhood cancers special. 

The cure rates of ALL in children of 2-6 years is 94.1  per cent as of 2015 and 91.9 per cent in children younger than 15yrs in High-Income countries. The outstanding outcomes of these cancers make them special, especially in an economy where the government and other agencies are still triaging their resources, this is one disease which should get priority.

The current scenario in India is improving. As per the study by Kulkarni et al four decades ago, the diagnosis of ALL (Blood Cancer) was a death statement for any child but by improving healthcare facilities we are improving response rates to almost 70 per cent as compared to 90-95 per cent in high-income countries. 

This is not just the story of ALL, other childhood cancer fare even worse. As per WHO >80 per cent of children with cancer are cured in High-income countries as compared to 30 per cent in low-income countries.

These stark differences can be due to a lot of reasons including lack of awareness. A lot of people consider childhood cancers a myth and hence delay reporting the symptoms to their doctors, resulting in late diagnosis. Also, there is a lot of mistrust in modern form of therapies especially chemotherapy. People often are worried about the long term side-effects to the heart, the lungs etc with these meds, but what is important is addressing the current problem of cancer at hand, and this dilemma also delays decision-making by the family resulting in advanced diseases.

The complete treatment of a child with ALL is approximately USD 103,250 which is equal to approx. Rs 80 lakh, however, our Indian peers are doing the same treatment in Rs 3 -7 lakhs, making it affordable to the masses. In a country with an average per capita income of Rs 1,35,600, even this is a huge cost of treatment. 

A lot of people can’t even afford the investigations required to get these diseases diagnosed, treatment is a dream for them. The availability of specialist centres dedicated to the treatment of childhood cancers are also scarce in the country. 

These kids are not just small adults, there are a lot of problems faced by the medical staff right from blood sampling to coping with the mood swings, and making these kids feel comfortable enough to let them examine hence a trained medical staff including the pediatric hemato-oncologist to nursing staff is a must. The family seeking a cure for their child has to overcome these hurdles and the chances of treatment abandonment and loss of follow-up is very common in our country leading to dismal outcomes.

As a country, we should come forward for our tiny toddlers, for the future of this country with a plan. This should be focussed on raising awareness, so that parents seek medical attention on time, and are diagnosed in early stages, while they are still salvageable. Access to these facilities should be universal, and not just limited to premiere institutes. Government should focus on training the manpower for the same and establishing healthcare units in every state. Research in childhood cancers should be encouraged.

The cost of investigation and treatment is a big burden to many families, exhausting them completely. With schemes like Ayushman Baharat, MJPJAY, Govt is making efforts but we need to increase accessibility of these schemes. CM Fund, PM fund are available, but time taken to procure them is really long. 

There are also a lot of NGOs like TATA trust, the CIPLA Foundation, CanKids and a lot of others helping in this fight against childhood cancer despite these, the families are often struggling to manage the financial aspects of treatment.

Finally in any cancer, a lot of emphasis is made on early diagnosis. For early diagnosis, the parents and caregivers of children, should be aware of red flags. These include prolonged fever, weight loss, fatigue, decreased appetite, night sweats, enlarged lymph nodes, swelling elsewhere in the body or in the abdomen, fatigue, unexplained bleeding or aches and pains, headaches, vision disturbances and so on. If the child is suffering from any of these symptoms, the paediatrician should be contacted immediately.

Dr Shweta Lunkad

Guest Author Consultant Haematologist and BMT Physician At Ruby Hall Clinic