“Why me, Ma?” Aarav, an 18-year-old from Mumbai, asked when he was diagnosed with Hodgkin’s Lymphoma in 2018. His dream of becoming an investment banker had shattered with the diagnosis. But he didn’t just survive – he thrived. I heard him speak at an event organised by a leading cancer hospital in Mumbai for International Childhood Cancer Day, which falls on February 15.
Unlike most teenagers of his age, whose hands are busy scrolling through social media, while one of Aarav’s hands received chemotherapy, the other clutched his accountancy books. He didn’t let cancer slow him down. Instead, he conquered it — emerging as an All India topper in the Chartered Accountancy exams. But not all childhood cancer stories see a happy end.
Aarav reminded me of Meena, a 10-year-old from Pune, whose story took a different turn. Her mother, a domestic help, was diagnosed with late-stage breast cancer. Her father, an autorickshaw driver, worked hard to ensure Meena got an education, believing it was her path to a better future. But cancer rewrote their fate. Her mother could no longer work, and her father, needing to care for her, lost days of income. With their paltry earnings dwindling further, they had no choice but to pull Meena out of school. Unlike Aarav, she wasn’t lucky – cancer didn’t just take her mother’s life; it trapped Meena in a cycle of generational poverty.
A recent National Cancer Registry Programme (NCRP) report found that childhood cancers (0-14 years) account for 4% of all cancer cases in India, while adult cases near a million annually – and these numbers are expected to rise. This leaves lakhs of children vulnerable to the hidden financial toll of cancer. Whether battling the disease or affected by a parent’s illness, children are the silent victims.
Protecting the next generation
Children are the future of a nation. To build a strong nation, we need an educated and skilled workforce. Education is also a pathway to their economic empowerment. But cancer disrupts this journey.
When a child or parent is diagnosed with cancer, schooling takes a hit. Low-income families are often forced to pull children out due to financial strain, while older siblings in such households take on caregiving or work to supplement income, limiting their future prospects.
For instance, Sridevi, a second-year college student from a low-income family from Hyderabad, had to work as a fast-food crew member and tutor school children to cover her father’s escalating oral cancer treatment costs. This impacted her academic performance and took a toll on her mental health.
Disruptions in education have a cascading effect. Studies show that children who drop out of school due to financial distress face lower lifetime earnings and higher rates of economic instability. In the context of cancer, the disease not only devastates the present generation but also risks trapping the next generation in a cycle of hardship.
The other indirect costs of cancer treatment
Loss of opportunity for education is just one example of the indirect costs of cancer treatment. Such costs includes non-medical expenses and financial losses from diagnosis and treatment. These can be as debilitating as direct medical and non-medical costs.
Loss of income is one of the most significant burdens, as patients may need extended leave or even lose their jobs. Family caregivers, often spouses or children, may also reduce work hours or quit jobs entirely, worsening financial strain.
Travel and accommodation costs add to the burden, especially for patients from rural areas who must frequently travel to treatment centers in cities. Daily living expenses rise due to special diets, hospital visits, and caregiving demands, often requiring household help or costly services.
The psychosocial and mental health impact further escalates the strain, with many patients and caregivers needing counseling or therapy, which is often unaffordable.
The role of insurance and government schemes
Government-backed health insurance programmes like Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY) have played a crucial role in reducing direct medical costs for cancer patients in India. These schemes provide financial coverage for inpatient costs, alleviating the immediate financial stress on affected families. But the indirect costs of treatment are insufficiently addressed.
Disability riders in insurance plans provide crucial financial support for cancer patients facing long-term disability. Many Indian insurers offer term plans with these riders, covering severe accidents and major cancers like breast, lung, and liver cancer. They provide income replacement or lump-sum payouts to offset lost wages, caregiving costs, and daily expenses. However, they are often excluded from standard policies, have strict eligibility criteria, or come with high premiums, limiting access for those who need them most.
To ease non-medical expenses, Indian Railways and Air India are offering discounted fares for patients and caregivers, while Himachal Pradesh and Haryana provide free bus travel for cancer patients. Additionally, monthly pension schemes in states like Haryana, Tripura, and Himachal Pradesh are helping mitigate the financial burden of indirect cancer costs.
The way forward
While policies focus on reducing direct treatment costs, easing the indirect burden – through caregiver aid, educational support, and employment protections – is equally crucial. These interventions improve treatment adherence, mental well-being, and safeguard the next generation’s opportunities.
Ensuring equitable education for cancer-affected families requires empathetic, multi-level action – from government policies and CSR funding to state income support and school-level interventions. Recognising that cancer brings not just medical but financial and emotional distress, policies must address these broader challenges. Simple yet impactful measures – use of calculators, extra coaching, extended deadlines, free school meals, and mental health support – can make education more inclusive. By integrating such interventions, we can prevent cancer from becoming a lifelong barrier to economic and educational equity.
(Dr. Vid Karmarkar is the Founder of Canseva Foundation. vid.karmarkar@gmail.com)
Published – February 21, 2025 05:00 am IST
