NEW DELHI: Fifteen-year-old Shivam Kumar has to travel over 1,000 km twice a month, from Patna to Delhi's AIIMS, after his cancer relapsed in 2024.
In 2020, Kumar, the youngest of six children, was diagnosed with non-Hodgkin lymphoma, a group of blood cancers that develop in the lymphatic system. He was treated at AIIMS, Patna.
However, when his cancer relapsed four years later, he was referred to AIIMS, Delhi, as his diagnosis was unclear. He was subsequently diagnosed with Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL), a rare, slow-growing type of blood cancer, at the premier institute.
The boy, who had to drop out of school after Class 3 due to his illness and treatment, is now on the road to recovery and will be returning home soon.
But the ordeal is not over for him and his family. Having recently undergone a bone marrow transplant, he will have to travel from his hometown to Delhi for mandatory routine check-ups every three months. Shivam Kumar is not alone.
Hundreds of children with cancer in India have to travel long distances, often taking more than two hours on average, to reach specialised paediatric cancer centres for treatment, according to a first-of-its-kind study recently published in the UK-based Journal of Cancer Policy.
The study, conducted by leading Indian cancer specialists, including experts from AIIMS, Delhi, has pointed out that the uneven geographical distribution of childhood cancer centres forces families, particularly those in rural and underserved areas, to travel long distances to access care.
This not only delays treatment but also exacerbates financial hardship, widens disparities in treatment outcomes and increases the risk of treatment abandonment.
Speaking to this newspaper, Kumar's mother, Geeta Devi, 45, said the burden of travelling had added to their woes. “Travelling from Patna to Delhi twice a month is really challenging,” said Devi, whose husband earns Rs 10,000 a month.
When the family first came to Delhi, they had to stay at a Rain Basera (night shelter) near AIIMS, which provided temporary free accommodation, beds, blankets and basic facilities for outstation patients and their families.
It was a stroke of luck that they connected with CanKids KidsCan, a national society working for change in childhood cancer care in India. The family stayed at one of its centres, where they received financial, psychological and emotional support, as well as nutritious food.
Shivam, who can now celebrate Diwali with his family, said he wants to resume his education.
“I just want to go back to school again,” said the boy in a feeble but confident voice, as he realised that his cancer treatment was finally on the right track after months and years of struggle.
According to Poonam Bagai, Founder and Chairman of CanKids KidsCan, “We must go beyond helping families travel long distances for treatment to building stronger childhood cancer care networks that bring quality care closer to home. And we must not forget the children who never reach a cancer centre at all. Every child deserves timely access to quality care, financial protection and a fair chance of survival.”
Childhood cancer remains a significant health challenge in India, where access to specialised paediatric oncology services is limited, the study said, pointing out that early diagnosis and prompt initiation of treatment are crucial for improving survival outcomes.
Yet, many children face delays due to systemic barriers in healthcare delivery.
Manraj Singh Sra, the study's lead author, said the researchers found that most families had to undertake long journeys to reach specialised paediatric cancer centres. “The average travel time was about two hours and 40 minutes each way, and 60% travelled more than two hours.”
“Children with solid tumours, which often need surgery and radiotherapy, travelled further than those with blood cancers,” Sra told this newspaper.
The study, which analysed data on more than 22,000 children with cancer, found that the highest number of patients were from Uttar Pradesh (5,057 or 22.6%), followed by New Delhi (4,287 or 19.2%), Tamil Nadu (4,010 or 18%) and Andhra Pradesh (1,354 or 6.1%), among other states. It highlighted the need for policies to expand paediatric oncology capacity beyond major urban referral centres.
It suggested strengthening regional treatment networks and improving referral systems to reduce delays and disparities in diagnosis and treatment, thereby improving childhood cancer outcomes in India.
The study, which included only children who eventually reached a hospital, also found gender differences in access to paediatric oncology care.
Sra, who works with the Association for Socially Applicable Research (ASAR), Pune, an organisation focused on research, awareness and action on social issues, said boys were more likely than girls to travel for over an hour, a finding that echoes earlier evidence that families are more willing to invest time and money in healthcare for sons.
The findings “demonstrate that the majority of children with cancer in India face substantial travel burdens to access specialised care, with significant disparities by sex and disease types,” the study said.
The research, which represents the first large-scale quantitative assessment of geographical access to paediatric cancer care in India using individual patient-level data, estimated motorised travel times to hospitals for 22,328 children with cancer treated at three major hospitals — the All India Institute of Medical Sciences (AIIMS), Delhi; the Rajiv Gandhi Cancer Institute and Research Centre (RGCI), Delhi; and the Women's Indian Association (WIA) Cancer Institute, Chennai — between 2005 and 2019.
Of the patients, 67.5% (15,067) were male and 32.5% (7,261) were female, while 54.2% (12,093) had been diagnosed with solid malignancies. The study found that patients treated at WIA had the longest median travel times and the highest proportion of prolonged journeys.
In contrast, those treated at RGCI had the shortest travel times.
“The findings reveal fundamental structural challenges in the current distribution of paediatric oncology services and highlight the urgent need for strategic expansion of treatment facilities in underserved areas,” said experts from the Department of Medical Oncology and Haematology, AIIMS, Kalyani, West Bengal; Department of Medical Oncology and Pediatric Oncology, Cancer Institute (WIA), Chennai; Dr BRA Institute Rotary Cancer Hospital, AIIMS, Delhi; and Department of Preventive Oncology and Public Health, Cachar Cancer Hospital and Research Centre, Silchar, Assam.
“Addressing these geographic barriers through enhanced referral systems, transportation support, and targeted interventions for vulnerable populations will be essential to achieving equitable access to high-quality childhood cancer care services,” they added.
The study, however, noted that the government had taken steps in recent years to improve access to cancer care. These include expanding universal health coverage through its flagship Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana, increasing cancer care at the secondary level by establishing day-care cancer centres in all district hospitals by 2028, and strengthening tertiary cancer care through the establishment of 19 State Cancer Institutes and 20 Tertiary Care Cancer Centres.
Comparing travel times in other countries, the study said that in high-income countries such as the US, the median travel time to the nearest paediatric oncologist was 20 minutes, with only 16.7% of patients having to travel for more than 60 minutes.
In Japan, the median travel time to designated hospitals for childhood cancer treatment was 37 minutes, while only 21.7% of patients had to travel for more than 60 minutes to access care.
However, in middle-income countries such as Saudi Arabia, 32% of patients travelled for more than three hours to reach treatment centres. In Colombia and Brazil, children also had to travel substantial distances to access chemotherapy and radiotherapy services.
The study said these “similarities suggest that access challenges in India may share commonalities with other developing nations, potentially driven by vast geographic expanses and limited healthcare infrastructure. Similar challenges have also been reported in India in access to palliative care, blood banks, and community health centres.”
Globally, nearly 400,000 children and adolescents aged 0-19 are diagnosed with cancer annually, with nearly 90% of cases occurring in low- and middle-income countries (LMICs). According to GLOBOCAN data, nearly 1.4 million new cancer cases are diagnosed annually in India, of which 3-5% occur in children.