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Socioeconomic Impact of Childhood

Cancer: TMC Case Study

Daniel Sparks University of California, Berkeley Tata International Social Entrepreneurship Scheme Tata Medical Center, Kolkata, West Bengal, India June-July 2014

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TMC Kolkata History and Mission

Prior to Tata Medical Center in Kolkata, the number of patients from

Northeastern India and its neighboring countries seeking care at Tata Memorial Hospital

in Mumbai was approaching twenty-five percent of its total patients. Without a

comprehensive cancer care facility in Northeast India, these patients had little choice but

to travel long distances for quality care. First conceptualized by Ratan Tata in 2004, TMC

Kolkata was built in the hopes of providing Northeast India with a state-of-the-art cancer

care and research facility. The Tata Medical Center and Tata Eastern Medical Trusts were

created to fund and oversee the operation of the hospital, providing over Rs 350 crore in

funding support. In May of 2011, TMC Kolkata opened its doors, offering therapeutic,

diagnostic, paraclinical and support services. The medical center seeks to provide quality

and affordable care to cancer patients while functioning as a not-for-profit oncology

hospital. The hospital was founded with the mission of providing the best care possible to

patients regardless of their socioeconomic status. Under the TMC model, fifty percent of

patients receive free or subsidized care. The number of registered patients at TMC

continues to increase, with the hospital now registering over 10,000 people per month

from all over India, Bangladesh, Bhutan, and Nepal. With a current bed capacity of 167,

TMC Kolkata is expanding the hospital by an additional one hundred beds as well as

breaking ground for the Tata Translational Cancer Research Center, a world-class cancer

research facility.

Introduction to Challenge

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Tata Medical Center in Kolkata is a not-for-profit oncology hospital. As part of its

mission, TMC reserves fifty percent of its hospital beds for free or subsidized treatment.

Accordingly, the hospital was built with the hope of serving all levels of society

regardless of economic class. As a basic financial model, it was thought that private ward

patients, by paying double cost, would subsidize the care of patients financially in need.

Other general ward patients would pay at cost for treatment, meaning the hospital makes

no profit from their care. This, in addition to funding support from various trusts and

funds such as Tata Steel Cancer Fund, would ensure affordable and accessible treatment

for all patients as well as a sustainable financial model for the hospital. However, this

model relies heavily on a relatively even number of private and general ward patients

coming into the hospital for care. In reality, patients requiring some amount of outside

funding, particularly for cancer patients whose treatment costs are quite high, are much

more common to TMC Kolkata than are private ward patients. Consequently, the demand

for financial support exceeds the hospital’s current ability to provide the necessary funds

to patients seeking care.

The lack of funds is particularly devastating for families with children being

treated for cancer. Many families are forced to sell assets, borrow money, and scrap

savings to afford care for their child; otherwise, families are left with no choice but to

forego treatment or accept much lower quality care. In order to better meet the funding

needs of patients and maintain a sustainable financial model, it is critical for the hospital

to better understand the socioeconomic impact of cancer on families and the various

measures people take in order to afford cancer care. By better understanding the root of

financial difficulties and the socioeconomic impact of cancer on families with a child in

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need of care, funds may more efficiently be distributed to families who require it the

most.

Research

This study looks in depth at the socioeconomic impact of childhood cancer on

families. Few assessments of the socioeconomic impact of cancer exist in developing

countries, and no studies have been completed specifically regarding the socioeconomic

impact of childhood cancer on families in India. Several recent quantitative studies have

focused on the economic costs of cancer treatment and the discrepancy of care between

affluent and poor patients, but, again, no studies to our current knowledge detail the

socioeconomic impact of childhood cancer on families. Research was conducted using a

questionnaire in an informal interview setting. A sample size of forty patients at TMC

Kolkata was used to collect data. In order to more accurately understand the

socioeconomic impact of childhood cancer and achieve the best results for the purpose of

our study, the families interviewed all have children who are currently in the maintenance

stage of cancer treatment. As a result, families have a closer approximation to the total

cost of their child’s treatment, making the socioeconomic impact of cancer on these

families more transparent.

Data:

Data was collected from forty patients at TMC Kolkata through a process of

informal interviews. All families interviewed have children who are in the maintenance

stage of cancer treatment so as to best capture the socioeconomic impact on families. The

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questionnaire, comprised of twenty-five to thirty questions, covers family demographics,

income, treatment expenses, and other circumstances faced by the family throughout the

duration of treatment. The sample population represents three countries: India, Bhutan,

and Bangladesh. Seventy percent of patients included in the study are being treated for

pre B Acute Lymphoblastic Leukemia; cases of T ALL, Acute Myeloid Leukemia,

Burkitt’s Lymphoma, Neuroblastoma, Sarcoma, and Wilm’s Tumor are also represented.

Seventy-five percent of patients surveyed permanently reside in West Bengal, while

Orissa, Uttar Pradesh, Bihar, and Jharkand are also represented. Twenty-four out of forty

patients are male, and the average age of patients interviewed is just over six years old,

with a range of three to fifteen years old. The average family size is five members with a

median of four members.

Moreover, The median income of families included in the survey is INR 7,500,

with a minimum of 1,500 and maximum of 500,000. It is important to note that the

distribution of income in this study is extremely skewed: two families account for nearly

three quarters of total income. Treatment costs, which include healthcare expenses from

all hospitals visited by the patient, amount to, on average, INR 538,570 with a medium of

four lakh. These figures highlight the significant discrepancy between treatment cost and

family income; consequently, the demand for funds is extremely high, with a high rate of

borrowing and dependency on funding organizations such as Indian Cancer Society and

the Chief Minister’s Fund.

Families’ socioeconomic class is identified according to the Kuppuswamy

Socioeconomic Scale. The scale is divided into five categories of socioeconomic class:

upper, upper middle, lower middle, upper lower, and lower. Based on parents’ education

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level, occupation, and monthly family income, families are scored from zero to twenty-

nine. Of the forty families included in this study, the following numbers represents each

class: twelve lower middle, ten upper lower, sixteen upper middle, and two upper.

However, these figures may be deceiving. Outside of the few patients at the absolute tier

of income earners in India (i.e. the two families categorized as upper class), all families

interviewed were to some extent financially vulnerable and subject to some degree of

negative socioeconomic impact. For the most part, vulnerable families were forced to sell

assets including land and jewelry, redistribute income away from other members of the

family, commit large out-of-pocket expenditures and borrowing, and forego employment.

Missed employment or loss of job as a result of the child’s cancer treatment presents

significant opportunity costs to the families, who, in addition to high treatment costs, lose

flow of income for varying amounts of time.

While the quantitative statistics taken from the study provide useful insight into

the socioeconomic impact of cancer as well as demographics and factors leading to

financial difficulties for patients at TMC Kolkata, the qualitative results of the study

provide meaningful information on the struggles and sacrifices families endure in order to

afford care for their child. In this way, the personal anecdotes of families convey the most

critical and useful findings of this study. The stories of several of these families are

detailed below. The level of sacrifice and socioeconomic impact of cancer is very much

influenced by families’ initial socioeconomic level, as determined by income, assets,

family size, and other social factors. The families depicted below represent three general

socioeconomic classes: upper, upper middle, and lower middle. These anecdotes are

intended to highlight the varying degrees of socioeconomic impact that cancer has on

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families and emphasize the will of families to take every measure possible to ensure their

child the best chance of survival.

Family A

Patient A, age three, was diagnosed with pre B Acute Lymphoblastic Leukemia in

October of 2013 and is currently in maintenance. Family A is a nuclear family of four

residing in Kolkata, West Bengal. The father of Patient A received a post-secondary

degree and runs his own IT company, earning 5,000 US dollars a month. From this,

Family A is in the .1% of income earners in India. To date, treatment for their son has

cost INR four lakh. Because of the family’s income, they do not qualify for any funding

from the hospital or non-profit health organizations. Moreover, the father’s personal

private insurance policy provided under employment for his company covers the bulk of

the cost. Family A’s income and insurance status place them in very select groups in

India: only fifteen percent of Indians have some degree of health insurance, and on

average out-of-pocket spending on treatment expenses account for over forty percent of

total spending by cancer-affected families (“Economic Burden”). Thus, Family A’s

income and socioeconomic status provided the opportunity to afford treatment for their

son without undergoing large out-of-pocket expenditures or borrowing money. In fact,

Family A has not been forced to sell any assets or borrow money in order to afford care.

Certainly, this is not to say that cancer has not affected the family’s lifestyle. The

emotional trauma of having a child diagnosed with cancer plays a significant role in

shifting family dynamics. The parents were unable to provide their other son with the

attention and care that they would have otherwise, and the family settled into more

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hygienic practices as they adapted to life with a child cancer patient. The family made the

necessary adjustments to ensure the best chance of curing their son’s cancer, namely

missing work and centering their lives around the child’s treatment schedule. Still,

according to the father the “economic impact has not been so bad.” Because he runs his

own company, it was relatively easy for the father to adjust his work schedule and be

there for his son’s treatment. In addition, the father now has the opportunity to work more

hours that his son is in maintenance, allowing the family to earn back any foregone

income and cover the increasingly high cost of care.

Consequently, the socioeconomic impact of Patient A’s cancer has been limited;

aside from foregoing luxuries such as a trip to Florida, USA and sacrificing time for the

child’s treatment, the family has, on the whole, been able to cope financially without

jeopardizing future income, their status in society, and most importantly the child’s

quality of life. Families like Family A play an integral role in the TMC financial model.

Because Family A is able to afford care on their own without funding support, they are in

turn subsidizing care for less fortunate families. Unlike most families, Family A did not

have to worry about affording treatment for their son, and they certainly never considered

abandoning treatment because of high costs.

Family B

Patient B, age five, was diagnosed with Acute Lymphoblastic Leukemia in

September of 2011. Family B lives is a joint family residing in Kolkata, West Bengal.

Both of Patient B’s grandmothers live with them as well as his nine-year-old brother. As

is the case with many patients at TMC, Patient B sought care at a hospital prior to TMC,

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costing the family INR 10,000 before being referred to TMC. Once treatment began, the

father would miss two to three days of work per week in order to be there for his son. As

a result, the father was released from his job as a sales area manager for a toy company, a

position earning him INR 15,000 a month. Suddenly, Family B had no flow of income to

support their family of six, a particularly devastating dilemma given the health of several

other family members. Patient B’s older brother is bed-ridden with cerebral palsy and has

suffered several other health complications. The family had already spent one and a half

lakh to treat the eldest son’s complications from cerebral palsy prior to Patient B’s cancer

treatment. In addition, Patient B’s maternal grandmother is bed-ridden, leaving the

parents to look after three individuals in critical need of care. The cost of the child’s

treatment was high and could not be afforded without some sort of outside financial

support. After paying two and a half lakhs, the family received support from the Indian

Cancer Society. Still, by this point the family had already borrowed INR 50,000. More

complications arose from the eldest son’s condition, costing the family another INR

20,000 and stretching the ability of the parents to look after both of their children and the

ailing grandmother. The family’s insurance covered two and half lakhs of medical

expenses, an amount that quickly vanished given the number of medical complications

experienced within the family.

As aforementioned, Patient B’s cancer treatment has impacted the family

significantly, especially in terms of socioeconomics. The father was unemployed for five

months before finding employment for another company, offering an example of the high

opportunity costs associated with cancer treatment. The foregone income left the family

no choice but to borrow more money from friends and relatives. Even the transportation

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costs of INR 1,000 from their home to TMC are difficult to afford. While the family can

still afford the basic necessities, they must be extremely cautious when it comes to

personal finances. The family has not left home for more than one day since 2005 aside

from travel for treatment purposes. Therapy for the oldest child has ceased due to lack of

funds, and he is not the only child in the family in need of special attention. Patient B is

autistic and in need of special schooling and therapy. Nonetheless, the family does not

have the financial capacity to send him to the appropriate school and remains

preoccupied with completing the child’s cancer treatment.

In this instance, cancer has drastically affected Family B. Affording cancer care

for the child has pushed the family into debt and forced them to sacrifice care for other

members of their family. While the family initially led a modest life under a stable

income, the father must now work to pay back loans and pay for additional treatments.

Nonetheless, Family B views life as invaluable. Given the mental condition of both of

their children, the parents have opted to do what many families in India would not do in

their situation: fight and care for their children to the best of their ability. Families like

this show the power of the human will and highlight the importance of better

understanding the socioeconomic impact of cancer. Although at first glance Family B

appeared to be in relatively sound financial shape (given assets and income), cancer has

lowered their socioeconomic status and put them in a position of dire need for funding.

Family C

Patient C, age thirteen, has struggled with his health since 2010. The child began

treatment at Tata Medical Center nine months ago for pre-B Acute Lymphoblastic

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Leukemia. Prior to receiving care at TMC, the family, who permanently reside in East

Midnapur, West Bengal, traveled extensively across the region for care from various

hospitals. These various hospital visits cost the family two and half lakhs. Upon coming

to TMC, the family spent another two lakhs for treatment before receiving funds from the

Indian Cancer Society. From the very onset, affording treatment for Patient C has been

extremely difficult for the family. The father is a farmer and earns his living through

work as a day laborer; he does not own any land himself, and his monthly income varies

from INR 2,000 to 3,000 depending on the season. The father must support his wife and

four children on this income, qualifying the family for a ration card. The parents were

unsure of how they were going to pay for the high treatment cost and were concerned

treatment may have to be abandoned. Hearing his parents’ concerns, the child said to his

parents, “Take me home and let me die.” He did not feel his life worthy of his family’s

sacrifices. The child happens to be extremely intelligent and excels in his studies. The

parents refused to yield to their son’s wish, instead opting to find any way possible to

afford care. The family borrowed one lakh from friends and family, promising to pay it

back at some point later on. In addition, the child’s school organized a fundraiser for his

treatment, providing the family with another source of funding.

The child’s three siblings also made sacrifices for him. Because the two eldest

brothers were not performing well in school, the parents saw it fit to abandon their

education; now, the brothers are in Delhi learning how to make clothes. Once they

become tailors, the brothers will be able to provide the family with additional income.

Still, the parents are losing sleep over how they will pay back their loans. They have

already sold what little land they owned, in addition to selling jewelry and other assets.

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The father has missed nine months of work to be there for his son’s treatment, presenting

significant opportunity costs in foregone income. His wife and daughter currently reside

in a makeshift home, where they are in increasing need of a nutritious food source. The

parents are also concerned for one of the older brothers, who suffers severely from a

psychological disorder, but they have decided through cost-benefit analysis to focus their

energy and resources on treating their youngest son’s cancer.

The family’s current position is dire. The family was poor to begin with but could

at least afford the basic necessities as well as provide all of their children with a basic

education. However, the cost of their child’s cancer treatment has significantly altered the

family’s socioeconomic status: they have no permanent home or consistent food source,

and they have no way of paying back their loans. Even with funding from TMC, the

family’s finances have suffered greatly, and they simply cannot afford to take things

more than one day at a time.

Bhutan

Not enough data was collected from Bhutanese patients to allow for a comprehensive

comparison between Bhutanese and Indian healthcare policy with specific regard to

socioeconomic impact of childhood cancer. Nonetheless, of the few Bhutanese families

included in this study, the socioeconomic impact of their child’s cancer was far less for

these families than that of their Indian counterparts. As a welfare state, the Bhutanese

government provides universal healthcare. In addition, the government pays for travel

expenses from Bhutan to Kolkata, as well as living expenses while the patients are being

treated. Like most of the Indian parents interviewed in the study, Bhutanese parents

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stopped work for the duration of their child’s treatment; however, the Bhutanese system

provides workers paid leave under these circumstances. As a result, the socioeconomic

impact of childhood cancer for Bhutanese families appears to be limited, especially

compared to that of Indian and Bangladeshi families.

Cancer Stigma

The cancer stigma that exists in many communities further influences the

socioeconomic impact of childhood cancer. This presents an additional burden to families

who already face difficulties in affording the costs of cancer care. Due to a lack of

awareness or education, people in such communities hold false beliefs regarding cancer;

in many instances, they believe cancer to be a communicable disease and associate the

family with inauspiciousness. Several families in this study were significantly impacted

by a cancer stigma and uneducated community beliefs. For example, Patient D was

diagnosed with pre B ALL at age four. In addition to financial concerns, the family also

faced ostracism within their community. Patient D’s uncle has not been able to marry,

and the family has similar concerns that no one will marry their daughter as a result of

their son having cancer. In these cases, families lose their place within the community,

impacting all members of the family including, in extreme cases, distant relatives. Thus,

the socioeconomic impact of childhood cancer extends beyond finances; oftentimes

families’ place and status in society are lowered, affecting families’ ability to live and

interact in their communities.

Socioeconomic Impact

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This study provides greater insight into the socioeconomic impact of childhood

cancer. Given the time allotted for the study, a sample size of forty patients only was

collected. Under ideal circumstances, a much larger sample size would be collected in

order to provide a more thorough synopsis of socioeconomic impact of childhood cancer

at TMC Kolkata. As emphasized in the previously mentioned case studies, the findings of

this study suggest that all families outside of those identified as Upper Class (according

to Kuppuswamy Scale) experience some socioeconomic impact as a result of their child’s

cancer treatment expenses. Middle and low-income families are prone to catastrophic

spending, or health care expenditures that total greater than forty percent of family

income. Moreover, both middle and low-income families are financially vulnerable as a

result of cancer treatment expenses for their child. In order to afford care, the selling of

land, jewelry, and other assets is commonplace. In addition, other family members are

forced to make sacrifices, such as foregoing education or personal health expenditures.

Most importantly, primary income earners miss periods of employment to be there for

their child. This opportunity cost of missed employment for parents of child cancer

patients is extraordinarily high. All families involved in the study experienced periods of

missed work, with the amount varying from one to fourteen months. This means that, in

addition to high treatment costs, families lose their flow of income, placing even greater

financial burden on the families.

Furthermore, the socioeconomic impact of childhood cancer appears to be

ongoing. As aforementioned, all members of the family are affected by a child’s cancer,

whether it be through the families’ ability to afford education, forced employment for

additional income, or the inability to marry as a result of the cancer stigma that exists in

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many communities. Thus, it is critical that research on the socioeconomic impact of

childhood cancer continue in order to better understand the generational impact on

families. The short-term results of this study suggest that families outside of the Upper

Class are susceptible to socioeconomic impact and are financially vulnerable, resulting in

foregone income, large debt, selling of assets, and significant sacrifices on the part of all

family members. However, the long-term impact remains unclear given the limited time

capacity of this study. In better understanding the short and long-term socioeconomic

effects of childhood cancer, funds and various funding schemes on the part of both public

and private sector may be enacted to minimize these impacts, which appear to affect all

members of the family for years to come.

Moving Forward:

There is no easy solution to reducing the socioeconomic impact of childhood

cancer for families. Much of the problem lies in government healthcare policy and

various other factors that lie outside the control of TMC Kolkata. Without greater

government spending on healthcare and more cooperation between the public and private

sectors, healthcare costs will continue to hinder family socioeconomics, especially given

the predominant lack of insurance coverage in India. With that said, it is absolutely

critical that TMC Kolkata remain true to its mission. The hospital’s aim of reserving fifty

percent of its hospital beds for free or subsidized care is both ambitious and noble.

However, three years after its opening, the hospital has seen the difficulties underlying

this mission. This model is heavily dependent on outside organizations such as Indian

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Cancer Society for funding, and patients who require some extent of funding far

outnumber financially autonomous patients.

Still, TMC Kolkata does have the power to reduce the socioeconomic impact of

childhood cancer. This study suggests that families’ socioeconomic status, in addition to

treatment costs, is further impacted by transportation costs, living expenses, and the high

opportunity cost of foregone income through missed employment during the child’s

treatment. It is in these areas that TMC Kolkata can make the biggest difference.

Premashraya, the up-and-coming housing facility for Tata Medical Center, will have

space for 200 patients and 300 family members. By providing free or subsidized housing,

Premashraya will greatly reduce the burden of living expenses for families during their

child’s treatment. Initiatives like this support TMC’s mission of providing healthcare to

all classes of society and present a more sustainable financial model for patients.

Government initiatives such as subsidized transportation costs for cancer patients will

help to further reduce the socioeconomic impact of cancer. Thus, there are ways to reduce

the socioeconomic impact of cancer on families, and TMC is at the forefront of providing

quality healthcare while bearing in mind the socioeconomic costs of care. In maintaining

its mission of accessibility and affordability, TMC has the potential to serve as a model

for other hospitals throughout India.