“Sir, I don’t have the money for the test,” said Vijay, a low-income lung cancer patient from Hyderabad. His oncologist replied, “Without the money, he has only a few months left.” The test — a 12-gene next-generation DNA sequencing panel — could have guided a life-saving treatment plan.
Genomics-informed precision medicine, or targeted therapy, offers the right treatment to the right patient at the right time, making previously untreatable cancers treatable. Yet, these breakthroughs, along with the latest treatments such as immunotherapy, monoclonal antibodies, and proton therapy, remain out of reach for many people from low and middle-income backgrounds.
Take 70-year-old Aslam, who has oral cancer. Immunotherapy for him would cost nearly ₹10 lakh annually, adding to the ₹25 lakh he has already spent over five years. His son, an IT professional, exhausted insurance, savings, and even sold their ancestral land to continue the treatment.
Financial toxicity is the least assessed and most devastating toxicity of cancer. It impacts not just the person with the disease but also his family and the following generations. From selling assets to skipping meals to afford treatment, the burden often traps thousands of families in a cycle of generational poverty that is economic, social, and nutritional in nature.
Public and private healthcare
One of the key barriers to equitable cancer care is its cost, which includes both direct medical expenses, such as diagnostics, medicines, and hospitalisation, and non-medical expenses such as travel, lodging, and food. Afreen, a cancer patient, exemplifies this struggle: “I had ₹500. I spent ₹200 on travel and ₹200 on medicines. I have ₹100 left. How will I go home?”
Private and public insurance schemes, such as Ayushman Bharat, pay only for inpatient costs. Outpatient expenses such as diagnostic workups, post-discharge care, and follow-up tests must be paid out-of-pocket (OOP) by patients. Such expenditure constitutes nearly 50% of total healthcare costs.
India’s public health expenditure has always been less than 2% of GDP. Consequently, public hospitals often face shortages of healthcare personnel, diagnostic and treatment facilities, and essential medications. Delays in diagnostic tests and surgeries further strain the system. This burden is compounded by the fact that many cancer cases are diagnosed at advanced stages, leading to higher treatment costs and poorer outcomes.
Given the limited public health facilities, private healthcare is a thriving business. The Indian hospital market is valued at close to ₹8 lakh crore with a CAGR of 8%. Is letting private healthcare thrive going to worsen the financial toxicity of cancer?
Addressing financial toxicity
In India, public healthcare is a State subject. To finance the direct medical cost of cancer care, some States such as Delhi, Maharashtra, Punjab, and Kerala have implemented several schemes. To support direct non-medical costs the Indian Railways and Air India offer discounted fares, whereas States such as Himachal Pradesh and Haryana provide free bus travel for cancer patients.
Additionally, efforts from NGOs and networks have also helped. For example, the National Cancer Grid has reduced the cost of 40 high-value cancer drugs by 82% through pooled procurement. The Cachar Cancer Hospital and Research Center in Assam has adopted a holistic approach to reduce OOP, along with accommodation, meals, and temporary employment opportunities for caregivers accompanying patients.
Only a strong political will and strategic investment in the public health system will address the financial toxicity of cancer. However, until government spending on public health improves, nonprofits play a crucial role in reducing this problem. By working at the grassroots level and conducting pilot projects, they can generate evidence that governments can scale up to inform policies.
In India, nearly 3 lakh nonprofits are registered on the Darpan portal managed by NITI Aayog, with over 85,000 focused on health and family welfare. But only a fraction of these specialise in cancer care. Larger nonprofits work across the cancer care continuum, from prevention to treatment. Smaller ones often operate in niche areas, such as by assisting low-income patients with paperwork, securing funding, and arranging essentials.
Individual philanthropy, impact investments, and corporate social responsibility (CSR) funding are central to financing nonprofits. Under India’s CSR Act of 2014, companies meeting certain criteria must allocate funds for social causes. In 2022–23, the healthcare sector received over ₹6,800 crore in CSR funding. However, granular data on specific areas like cancer remains limited.
The Forbes’ 2024 report showed that the combined wealth of India’s 100 richest individuals surged to ₹8.4 lakh crore. A growing segment of the population has surplus wealth that can be donated while they benefit from tax exemptions. Critical catalytic capital would enable younger nonprofits to establish themselves and scale their impact. However, individual philanthropy is lagging far below its potential.
With a rising pollution, rapid urbanisation, and unhealthy lifestyle changes, the health and financial toll of cancer is set to rise significantly. Indian philanthropy, CSR initiatives, government funding, and nonprofits hold the power to alleviate the economic burden of cancer care.
Vid Karmarkar is the founder of Canseva Foundation; Parth Sharma is a community physician, public health researcher and the founder of Nivarana
Published – February 05, 2025 12:47 am IST
