In the early years of its work, Asraya, an all-women charity that supports patients at the Regional Cancer Centre in Thiruvananthapuram, faced an unexpected challenge. Niyaz (18) needed a leg amputated, and his family had no money to pay for the treatment. Until then, the group’s members had offered basic assistance to patients at public hospitals in their spare time. This was the first time they raised money for treatment itself.
“We were apprehensive about fund collection. The treating doctor said that we could save his life with timely treatment. Niyaz recovered and grew up into a fine young man. It gave us the confidence,” says Santha Jose, who founded Asraya in 1996.
That confidence expanded the group’s work from supporting patients to helping rebuild families. Its education assistance alone has reached close to 2,000 children, many of whom have gone on to become doctors, nurses, engineers and chefs.
Niyaz’s story illustrates how a cancer diagnosis can push an already vulnerable family into a financial crisis, making external support crucial to accessing treatment. Three decades later, as the government moves to bring down the prices of 137 anti-cancer medicines, oncologists point out that the cost of cancer care extends far beyond the price of drugs.
Mind and body
For patients, treatment often feels harder than the diagnosis. “Cancer treatment involves chemotherapy, radiation and immunotherapy, which can have side effects such as fatigue, nausea, changes in appetite and pain,” says Dr Vaishnavi Joshi, consultant in medical oncology at Aster CMI Hospital, Bengaluru. These symptoms limit patients’ daily functioning and their ability to work. Hair loss and physical change can wear down self-confidence and independence, she adds. Patients who cannot work or manage routine tasks may feel they have lost control.
Dr Manjunath N M L, senior consultant in GI oncology at HCG Cancer Hospital, Bengaluru, says doctors often miss this disruption. “In addition to treating the condition, the patient needs to be assisted in coping with all the changes going on in his or her life,” he says. Even when treatment goes smoothly, fatigue, nausea, pain and loss of appetite affect a person’s ability to handle chores and activities that once felt normal.
The emotional burden is harder to measure, and in India it is often carried in secret. Dr Vibhor Gupta, medical director at the American Oncology Institute, Hyderabad, says the wait for a diagnosis causes “deep shock and fear,” pulling people out of their normal lives. “In India, cultural differences and societal taboos make this struggle much harder,” he adds. Fear of judgment often forces patients into silence. They hide the illness to avoid pity, unwanted sympathy or being treated differently.
The fear does not end with treatment. “Even after treatment, physical changes leave lasting scars, making patients hyper-aware of every minor ache and terrified that the disease might return,” Dr Gupta says.
Dr Joshi describes distress at every stage, from understanding the illness to waiting for results. Caregivers carry their own share, she says, juggling care with their personal and professional lives, and the hospital visits and money worries produce much the same distress as the patient’s.
When treatment turns debt
Of the different dimensions of cancer’s impact, the financial burden is perhaps the most quantifiable. A 2021 review in Lancet Oncology examined 22 Indian studies on the cost of cancer care. It found that around half of patients in the country struggle financially to manage their treatment. The situation in Kerala, known for high out-of-pocket spending whatever a person’s means, is similar.
One in three households with a cancer patient spends more than half its per-capita annual expenditure on hospitalisation. To cover this, families turn to distress financing: they borrow, pawn jewellery, use up savings or sell assets. This was the main way to pay for more than 60% of hospitalisations in rural India and 40% in urban India. Financial toxicity was linked to poorer quality of life, mounting debt, children entering the labour market early and patients abandoning therapy. Kochi-based oncologist Dr Aju Mathew was among the researchers.
The costs go beyond the hospital bill. Dr Manjunath lists diagnostic tests, hospital visits, surgery, radiotherapy, supportive therapy, travel and even accommodation, plus income lost when the patient or a caregiver cannot work. Dr Gupta says these “hidden financial costs and lost earnings create heavy mental pressure for families already struggling to cope.”
The question not asked
The review also pointed to a gap in the consultation room. “How long will I live and how much will I have to spend for it?” is the basic question every family carries to the oncologist. Busy schedules, and the shock of a fresh diagnosis, often mean it goes unasked.
“It is the right of the patients or family members to ask questions, and at the same time the duty of the treating doctor to explain the disease and treatment,” says Dr Mathew, oncologist at MOSC Medical College, Kolenchery. “In some cases a doctor may prescribe chemotherapy to extend life for a couple of months. But the patients assume it would cure them and are willing to take the expenses even if it is beyond their financial capacity.” Families in Kerala, he adds, feel social pressure to choose the best hospital whatever their finances.
Dr Joshi makes the same point. Oncologists, she says, should discuss the type of treatment, the expected cost and, where needed, alternatives.
Patient wellbeing
Dr M R Rajagopal, founder chairperson of Pallium India in Thiruvananthapuram, says this is where the system’s design shows. “Clinical medicine often cannot offer the mental, social and spiritual wellbeing of patients. We need more patient supportive initiatives,” he says.
He stresses that treatment must be balanced against quality of life. A therapy that adds months but leaves a patient in constant distress, or pushes a family into debt, he says, cannot be counted a success on the strength of the scan alone. He also warns that a health system built around diseases tends to overlook the health-related suffering of the people who have them. Pain, breathlessness, fear and exhaustion go unaddressed because they are not the target of treatment.
Dr Gupta agrees that “true healing cannot happen through medical care alone.” He calls for awareness, less stigma, lower indirect costs and “steady, respectful emotional support that helps patients feel understood rather than helpless.” Many Indians, he adds, suffer or die from treatable cancers because they do not know the disease can be cured or lack timely guidance.
That is the gap Asraya has tried to fill, one family at a time, for three decades. Lower medicine prices are an important step towards making cancer care more accessible. But they cannot compensate for lost wages, depleted savings or the emotional strain carried by patients and their families. The price of the medicine may come down. The bill that cancer leaves behind often lasts much longer.
