Meenati (name changed) presented at the clinic with a painful lump in her left breast, which she had first noticed three months before. The 32-year-old West Bengal resident had never undergone breast cancer screening in her life. A local physician advised her to have a mammogram — a special X-ray of the breast and fundamental breast-imaging tool.
The report that came back said the lump was suspicious for malignancy. Meenati was advised to consult an oncologist at a cancer treatment center in Kolkata. She traveled with her husband for four hours to reach the state capital for evaluation and confirmation of diagnosis. A series of tests confirmed she had advanced stage (Stage IV) breast cancer, which had already spread to other organs.
Doctors referred her to a tertiary cancer center at Mumbai, which serves financially disadvantaged patients through public and philanthropic funding.
Breast cancer is the most common form of cancer in Indian women. It largely affects women of reproductive age. The median age of diagnosis in India is 47, meaning that half the women diagnosed with breast cancer are under 47 years old.
The mortality rate associated with breast cancer is high in India compared with any developed country, primarily due to lack of routine screening programs and health awareness. Social stigma associated with cancer diagnosis further leads to diagnosis in the advanced stage, which has lower cure rates.
A nationwide survey found that breast cancer screening among women aged 30-49 years in India is abysmally low, especially among the poor, less educated and rural population.
Diagnosis at an advanced stage often leads to protracted treatment that can result in therapy-related side-effects, high out-of-pocket payment and lower chance of survival.
Prevention and effective treatment of breast cancer requires early diagnosis, which will only be feasible by lowering the breast cancer screening age, increasing health awareness and improving access to screening services, especially in remote areas, leading to reduction of breast cancer-related mortality.
Breast cancer screening is grossly neglected at household, state and national level. At the household level, lack of awareness, stigma and economic constraints prevent many women from accessing breast cancer screening. Health is a state subject, but cancer screening has not been prioritized yet.
The lack of availability of cancer screening in public health facilities and long distances to city centers prevent many women from accessing cancer screening and diagnosis. The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke recommended breast cancer screening for women aged 30 years and above in the country, along with screening for other common cancers.
Opportunistic screening programs and occasionally organizing health camps for mass screenings at different levels of health facilities have not been enough to make a difference.
Meenati's household economic condition is very poor, and as a housewife, she had to take care of her two children and in-laws, managing all the household chores by herself. Her husband works as an agricultural laborer and had no source of stable income. They had one acre of land and no other wealth.
They were covered under a state government-sponsored health insurance scheme. They used their little savings to get a diagnosis in Kolkata and were referred to one of the largest and oldest tertiary cancer care centers in the country for treatment.
Meenati and her husband borrowed INR200,000 (USD$2,736) at a high rate of interest by mortgaging their land. He accompanied her for treatment in Mumbai. They traveled by train and stayed in a dharamshala, a rest house for pilgrims, close to the hospital. After they registered for treatment, she was enrolled as a general patient at the cancer care center and received treatment at a subsidized rate.
In the cohort of 500 breast cancer patients registered at this center and studied by the authors, over 55 percent of the patients had traveled from other states in India. On average, patients traveled more than 1,076 kilometers to seek treatment. They faced additional hardship during the COVID-19 lockdown, which increased the cost of travel, accommodation and food consumption.
The economic burden on households treating breast cancer is enormous. The average cost of breast cancer treatment at the center was INR258,095 (USD$3,531); half was for non-medical costs such as accommodation, food and travel.
The out-of-pocket payment was INR178,076 (USD$2,436) (62 percent of her treatment expenditure at the cancer care center). For private patients, the average cost of treatment was almost double that for subsidized patients (INR552,368, or USD$7,556).
Three out of four cancer patients had some form of reimbursement, but one-fourth had none. The reimbursement for cancer treatment accounted for only 27.8 percent of the total cost. Both public and private insurance solely cover hospital expenses, neglecting daycare treatment costs, which forms a significant component of cancer care.
Non-medical expenses, which account for almost half the total treatment cost, remain excluded from insurance coverage.
The financial catastrophe of breast cancer treatment is high. More than 85 percent of cancer patients have faced financial catastrophe in treating the disease, and 55 percent households were impoverished following treatment.
People resort to multiple sources of financing to be able to pay for treatment. During Meenati's entire treatment period, her husband did not work, and her children were left with their grandparents, leading to loss of education and income.
Meenati's high out-of-pocket payment was primarily due to lower reimbursement and distance to place of treatment. She got help from charitable trusts and other financial sources, but not enough to protect her from the financial toxicity of breast cancer treatment.
Just like her, many households have to sell their assets and deplete savings, which leads to financial distress and high levels of loans and debt to cover treatment costs.
The problems do not end here. After the long treatment and increased cost due to her advanced stage of breast cancer, Meenati's challenges continued during the follow-up phase. She did not come for needed follow-up treatment in Mumbai, owing to distance and financial constraints. The family had exhausted all its savings for affording systemic therapy and getting to Mumbai posed an additional burden.
Many patients discontinue treatment during the active phase of treatment due to distance, monetary problems and lack of medical insurance or reimbursement. Some of the registered patients died during the treatment period.
Despite the challenges of breast cancer treatment, Meenati found solace in the improved quality of life she experienced. Her life choices improved, but she continues to bear a financial burden. Numerous others like Meenati are unable to afford treatment in the nation's most expensive cities, where cancer centers are generally located.
Could all of this have been prevented? If Meenati had received health education and screening services in her village, she would probably have sought medical help without delay to diagnose cancer at an early stage. This highlights the importance of health awareness and access to proper screening facilities for non-communicable diseases, including common cancers.
Given the persistent lack of awareness, there is a need to increase public education about breast cancer screening through mass media.
The financial burden Meenati faced could have been mitigated if the social health insurance net had been wider, providing higher levels of reimbursement, including for daycare treatment cost. Nothing of the sort happened for Meenati and her family, who are still living in financial distress, coping with the catastrophic burden of healthcare expenses.
(Professor Sanjay K. Mohanty is Head, Department of Population and Development, International Institute for Population Sciences, Mumbai, India. Tabassum Wadasadawala is Professor, Department of Radiation Oncology, Advanced Centre for Treatment, Research and Education in Cancer (ACTREC), Tata Memorial Centre, Homi Bhabha National Institute, Kharghar, Navi Mumbai, India. Suraj Maiti is Independent Consultant at International Institute for Population Sciences, Mumbai, India. Soumendu Sen is Senior Research Fellow at International Institute for Population Sciences, Mumbai, India. This article was originally published under Creative Commons by 360info)
