India’s inadequate paediatric cancer care infrastructure leaves many families struggling for treatment, highlighting the urgent need for better facilities, support services, and policies across the country.
Paediatric cancer care requires specialised facilities designed to meet the specific needs of children. Photo: St. Jude India ChildCare Centres, Delhi
It was at the peak of the covid-19 pandemic that four-year-old Devansh Das began to feel extremely unwell. He had a persistent high fever and severe vomiting. Initially, everyone suspected a covid-19 infection. However, after numerous tests ruled out various infections and diseases, the diagnosis finally settled on blood cancer.
Devansh, a resident of Baleshwar in the eastern Indian state of Odisha, could not get a diagnosis from any health facility in his city. He was referred to Bhubaneswar, the state capital, where the cancer was finally detected.
“We were emotionally devastated. It is not easy to hear that your child has a deadly disease like cancer. I used to cry a lot. I still cry whenever I am reminded of those days,” says Devansh’s mother, Sasmita Malik, her eyes welling up with tears.
Devansh’s father, Sanjay Das, is a college teacher. At the time of the diagnosis, he was teaching at the Government College of Baleshwar. Despite the common belief that government employees can easily access treatment in government hospitals, especially for diseases requiring tertiary care, this was not the case for paediatric cancer. The facilities for childhood cancer are so limited that proper treatment is often unavailable.
“We had to treat him in a private hospital as the government hospital did not have adequate facilities. We have spent Rs 15 lakh so far [about US$18,000], and Devansh’s regular tests continue, incurring ongoing costs. We still have to travel to Bhubaneswar for these tests, adding to the expense of travel, tests, and doctor’s consultations,” Malik says, explaining that three years have passed since Devansh recovered.
Four-year-old Devansh Das was diagnosed with blood cancer, leaving his family in financial hardship. Photo: Sasmita Malik
The family has faced significant financial hardship, collecting money through various means. They took out a bank loan that will take years to repay, and many friends and relatives contributed to their fund. Despite this support, their struggles are likely to continue for a long time.
State of paediatric oncology in India
The good news is that children generally respond to cancer treatments like chemotherapy much better than adults because they are less likely to have comorbidities; consequently, they have higher chances of survival. The bad news in India is the lack of specialised healthcare facilities.
India lacks a robust infrastructure for paediatric oncology. A 2023 multi-institute study led by the National Centre for Disease Informatics and Research (NCDIR), Indian Council of Medical Research, Bengaluru, highlighted the dismal state of childhood cancer treatment infrastructure in the country. Less than half of the hospitals surveyed had a dedicated paediatric oncology department—41.6% of public hospitals and 48.6% of private ones. Of the tertiary hospitals managed by NGOs, 64% had dedicated departments, but the number of such hospitals is very low.
Childhood cancers affecting children under the age of 14 comprise 4% of all cancers reported in the NCDIR’s National Cancer Registry Programme (NCRP). The four most common cancers in children in this age group are leukaemia (47%), lymphoma (13%), bone cancer (8%), and brain and central nervous system (CNS) tumours (7%), according to findings from Hospital-Based Cancer Registries under the NCRP.
Dr Anita Nath, a scientist with NCDIR and the lead author of the study, says these childhood cancers are physically and cognitively debilitating and can lead to either short-term fatal consequences or long-term adverse effects from prolonged illness and treatment. Treating these cancers requires a multidisciplinary approach through care coordination by a dedicated paediatric oncology department.
Among the 92 hospitals providing secondary care, 36% had provisions for treating childhood cancers. Childhood cancer care services were provided through general oncology departments catering to all age groups. As with most cancer-related healthcare services, childhood cancer treatment services are primarily located in urban areas.
Nath adds that paediatric cancer care requires specialised facilities designed to meet the specific needs of children, usually through a team that includes paediatric oncologists, surgeons, radiation oncologists, and paediatric oncology nurses. Additionally, supportive care services such as psychologists, rehabilitation specialists, and social workers are essential to cater to young patients’ growth and developmental needs. Childhood cancer survivors also need follow-up care to monitor their health for many years after completing treatment.
Challenges of childhood cancer
Cancer in children is devastating for families. Learning that your child has a life-threatening disease is emotionally taxing; and caring for a child who doesn’t understand the severity and necessity of their treatment is challenging.
"In our hospital, we have a playroom with a school teacher, music, games, movies, and various therapies. All of this is part of the treatment."
“Children are not merely young adults. Their treatment requires an understanding of their bodies and the way their bodies respond. They also have special needs as they don’t know what they are going through. We have to examine them daily; treatment is often prolonged and complex, with lots of invasive interventions. This can make them fearful and uncooperative. Therefore, we have to create an environment where they feel secure and comfortable. In our hospital, we have a playroom with a school teacher, music, games, movies, and various therapies. All of this is part of the treatment,” says Dr Sandeep Jain, paediatric haematology oncologist at Rajiv Gandhi Cancer Institute, New Delhi. The paediatric unit of the hospital is designed to be child-friendly, with cartoon-themed walls, bright colours, and colourful furniture.
Jain emphasises that in addition to medical treatment, children require attention to their development, growth, mental health, and psychological wellbeing. Parents also need support as they manage the care of other children in the household. Childhood cancer impacts the entire family, including the siblings of the patient.
Need for comprehensive care
NGOs such as St. Jude India ChildCare Centres are working to fill some of the gaps in paediatric cancer care. Cancer treatment can take months, requiring family members to stay with the child for extended periods. St. Jude provides free accommodation to such families.
“We provide safe and hygienic accommodation near major cancer treatment hospitals. Children have a higher chance of survival [compared to adults], but they need to be protected from infections. People from rural India and lower economic strata travel to cities for cancer treatments and cannot afford high hygiene costs. That’s where our centres come in. It’s like community living in our centres. Every family gets a cooking station in addition to living facilities,” says CEO Anil Nair.
NGOs in India like St. Jude India ChildCare Centres are working to fill some of the gaps in paediatric cancer care. Photo: St. Jude India ChildCare Centres, Delhi
“There should be a comprehensive and holistic view of cancer care. Every cancer facility should ensure proper accommodation for families. Many families are lured into unhygienic housing by touts, which adversely impacts a child’s treatment. Lack of decent accommodation also leads to the abandonment of treatment, as chemotherapy can last for six months or more. Thus, this should become part of how we treat childhood cancer,” Nair continues.
“Infections are very dangerous for children. In my clinical experience, nearly half the deaths related to childhood cancer are because of infections, not the disease itself."
Dr Rayaz Ahmed, haematology oncologist at Max Super Speciality Hospital, Delhi, agrees protection from infection is a key element of care for children with cancer. “Infections are very dangerous for children. In my clinical experience, nearly half the deaths related to childhood cancer are because of infections, not the disease itself. The patient’s body is immunocompromised after chemotherapy. If a child gets an infection during treatment, it can become fatal,” he says.
St. Jude has also published a book titled Happy Healthy Meals, which includes 21 recipes of healthy and tasty food. “Children need to consume homemade food, but they also look for taste and won’t eat just for the sake of health. We collected innovative recipes from our different centres, developed by parents. It is a valuable resource for anyone dealing with a child with cancer,” Nair says.
Writes Dr Arpita Bhattacharyya, senior consultant in the Department of Paediatric Haematology and Oncology at Tata Medical Center, Kolkata, in the preface of the book: “Nutrition is one of the most important aspects for children undergoing treatment for cancer. Due to the effects of chemotherapy, and sometimes radiotherapy, these children suffer from significant loss of appetite, nausea and vomiting, mouth ulcers, pain in the throat and mouth, diarrhoea, constipation, and abdominal pain. These conditions, either alone or in combination, lead to poor oral intake and weight loss.”
She adds that “fresh home-cooked food is always better for the child than expensive supplements”. “It is not only important to understand what foods are good for the child, but also what would be acceptable and enjoyable.”
Nutrition is one of the most important aspects for children undergoing treatment for cancer. Photo: St. Jude India ChildCare Centres, Delhi
The book features recipes like “oats idli,” developed by Srinivas Aratia from Andhra Pradesh for his nine-year-old son Hemeshwar; and “ragi and paneer paratha,” developed by Manisha Kumari for her six-year-old daughter. Both ragi and paneer are highly nutritious. Kumari’s daughter Pranjali doesn’t like either ragi or paneer, but this combination is among her favourites. There are also many recipes using beetroot, which is excellent for increasing haemoglobin levels—a crucial need for blood cancer patients.
Calling for stronger policies
According to Nath, there is an urgent need in India to develop a national childhood cancer policy focusing on early detection, affordable care, and comprehensive support services at public health facilities. She further says that expanding universal health coverage to include childhood cancers through India’s Ayushman Bharat PM-JAY scheme—the world’s largest publicly-funded health insurance programme—would ensure high-quality healthcare services for optimal childhood cancer care.
In 2022, a committee of the Upper House of Parliament made critical recommendations regarding paediatric cancer. The committee noted that early diagnosis of paediatric cancer is essential to increase the chances of successful treatment. It recommended that health personnel should be trained and sensitised to ensure they deal with these children with respect and compassion, and that primary health centres “must have trained healthcare professionals for early cancer detection and screening and be sensitive while handling children likely to be suffering from cancer”. Following the committee’s recommendation, the National Health Authority developed standard treatment guidelines for over 1,600 procedures, including 12 exclusively for paediatric blood cancer.
Until such policies are put in place, children like Devansh will continue to face significant challenges. Now eight years old, he has resumed schooling and participates in sports activities. However, he often has to take leave to travel to Bhubaneswar for tests, and his ordeal will continue for years to come.
コメント