Lack of awareness, agency, finances: Why women with cancer suffer more

This piece is supported by the Pulitzer Center. 

When I first met Amrita Singh at Gadge Maharaj Dharamshala, a subsidised hostel for cancer patients close to the Tata Memorial Hospital in Mumbai, it was hard to believe she had cancer. Of medium build and height, dressed in a lime green salwar-kurta and her long hair tied in a bun, Amrita looked healthy. 

There was an air of intelligence about her but it was clear she liked to keep to herself.  She opened up when her friend at the dharmshala, Tulasi, another breast cancer survivor, spoke to us. The naturally charismatic Tulasi had us in splits and listening to her, Amrita slowly opened up. 

At 34, Amrita had been told to get her affairs in order. Her breast cancer had progressed to stage 4 and spread to her liver, lungs and skin. After two years of living in Mumbai, often without a permanent shelter and little money, the doctors at the Tata Memorial Hospital had told her that they have done all they could for her and she should spend the rest of her days with her family in Delhi.

Amrita’s cancer was detected at stage 3. Her economic condition, the Covid pandemic and the national lockdown – all played a part in delaying treatment and eventually the outcome. Even when she reached India’s best cancer care institute in Mumbai, she did not quite understand the extent of her disease or the next steps to take.

Breast cancer is the most common (26 percent) cancer in Indian women affecting about 200,000 women annually. Not only are breast cancers detected in advanced stages in India, they face a far poorer prognosis here. While the average five-year survival rate in Western countries–USA, Sweden, Japan and Australia is 80-90 percent – and in Asian countries – China, South Korea, Singapore and Turkey – is 76-82 percent, it is only 52 percent in India. 

This means almost half of the women with breast cancer do not survive past five years of their diagnosis. Not just breast cancer, most women with cancer in India die young, without proper care and often poorer than before, as we see further in the story. 

Across the world, cancer is among the top three causes of premature deaths among women. “Of the 2·3 million women who die prematurely from cancer each year, 1·5 million deaths [65 percent] could be averted through primary prevention or early detection strategies, while a further 800, 000 deaths could be averted if all women everywhere could access optimal cancer care,” said the Women, Power and Cancer commission of The Lancet in 2023.  

The report further stated that regardless of geographic region or economic resources, women are more likely than men to lack the knowledge and the power to make informed cancer-related healthcare decisions. They are also more likely than men to suffer financial catastrophe due to cancer, with dire consequences for their families, even if quality cancer care is available.

In this second part of the series on Gender and Cancer, we at BehanBox, will explore the various barriers to seeking cancer treatment. We explore why despite a relatively lower cancer rate, Indian women suffer from preventable cancers, face delays in diagnosis, have difficulty in accessing cancer centres and suffer greater indebtedness.

Girls less likely to get treatment

While there is no difference in cancer incidence in boys or girls, there is a skew in childhood cancer diagnosis in favour of boys. A 2023 study of three cancer centres and two population-based cancer registries showed a disproportionately higher registration of cancer cases in boys than girls with the bias more pronounced in North than South India. 

Delhi had a sex ratio of 2 boys for 1 girl registered for cancer care while in Chennai, it was 1.44 boys for 1 girl. The male bias was pronounced at registration or diagnosis but was not apparent for treatment and more so in private institutions, the study found. Further it found that fewer girls than boys underwent stem cell transplantation (curative treatment for some blood cancers that costs Rs. 15-20 lakh in India). 

Maya Prasad, Professor, Pediatric Oncology, Tata Memorial Hospital, Mumbai said that their own hospital records show that the sex ratio for cancer registration has improved in the last couple of years; it was 2.2: 1 in 1985, 2.08: 1 in 2015 and it is 1.8: 1 in 2023. However, there is still some abandonment of treatment that they see in both the genders, but more so in girls. She said there could be some undercounting of the phenomenon since there could be many girls who may not come to hospitals and may have missed being diagnosed. “The data from India are not very robust because they are obtained from hospital-based cancer registries and do not reflect the true population-based incidence,” Prasad said. 

Vandana Mahajan, cancer survivor and palliative care counsellor who volunteered at the Tata Memorial Hospital, Mumbai and is member of Lung Connect India Foundation, a patient support group, told me about a 3-year-old girl Simran (name changed) from a village in Maharashtra diagnosed with bilateral Retinoblastoma cancer. She was treated in Chennai when she was 10-months old but the cancer recurred during the COVID pandemic. It was incurable and Simran was in a lot of pain.

“Morphine is not an expensive drug and I managed to arrange it for her but her mother told me that Simran’s grandmother would not give her money to travel or buy medicines for her saying that she is a girl and will die anyways so why spend on her,” Mahajan said. 

Cases like Simran were commonplace in paediatric cancer wards but things are changing now. Shalini Jatia is the officer-in-charge at the ImPaCCT Foundation that provides holistic support for  children with cancer at the Tata Memorial Hospital. She said the treatment abandonment rate in childhood cancer cases was as high as 25 percent in 2010.  Further, most of the treatment refusal happened in the first six weeks of the diagnosis. 

Upon following up with the families that stopped treatment, the social workers realised financial constraint was the top reason followed by lack of belief in curability of cancer and gender bias. Since then, the foundation has created a social support team to help families navigate the health system, find accommodation and help fund their investigations and treatment. Every family has a social worker assigned to them and special attention is paid to mothers who are taking care of their child alone so that they complete the treatment. These efforts paid off and the abandonment rates have fallen to 3 percent in 2022, Jatia said. 

The eldest of four daughters and one son, Amrita was married off at 13. “There were three more [sisters] after me so my parents wanted to get married early,” she told me. From a small village in Dumka, Jharkhand, Amrita moved to Delhi, 1365 km away. She had only completed the eighth grade, there was no time to have an aspiration for herself, and within a year she gave birth to her son, Mohit, and later had two daughters. Her husband worked as a parking assistant, Amrita stayed at home taking care of household chores. They had little money but no complaints.

The first time she felt a lump in her left breast, it was 2020 during the COVID pandemic. India was just opening up after ending the first national lockdown—one of the harshest in the world with all means of transport and movement restricted. The healthcare sector was deeply affected with most private hospitals closing down their OPDs and even the All India Institute of Medical Sciences, India’s premier tertiary public health institute in the national capital,  shut its OPD for over three months. 

Amrita’s husband was out of work during the lockdown and the family barely made enough for two meals a day. There were times when the family relied on food distribution drives near their home for meals. When her neighbourhood private practitioner told her that the blood results showed cancer, Amrita went to a government hospital near home where they did additional tests and biopsy but the whole process took two months. Then, Amrita found out that she had stage 3 breast cancer and surgery was no longer an option.  They were then referred to Rajiv Gandhi Cancer Institute and Research Centre where they started on chemotherapy but the hospital often had stock outs of the medicines. 

“They told us to buy the drug which cost Rs. 50,000 per chemotherapy session, we couldn’t afford that,” said her 19-year-old  son, Mohit, who has accompanied her mother from the first day of the diagnosis.

Amrita’s experience was not an outlier, the Covid pandemic severely impacted oncology services in India and led to 54 percent reduction in new patient registration, 36 percent reduction inpatient hospitalisations, 37 percent reduction in patients getting outpatient chemotherapy, 49 percent reduction in surgeries and 23 percent reduction in patients accessing radiotherapy. Further, cancercare services were disrupted more in tier 1 cities (like Delhi) than tier 2 cities according to a 2021 study published in The Lancet Oncology. 

One of the reasons the Singh family could not seek treatment in Delhi was because of the exorbitant out-of-pocket expenditure– the state had not implemented Pradhan Mantri Jan Arogya Yojana which gave a health insurance coverage of Rs. 5 lakh to families below the poverty line. While Delhi had the Delhi Arogya Kosh scheme with similar coverage, the family was not aware of it nor did the hospital tell them about it.

Amrita had to abandon the treatment in Delhi and she went to Jharkhand to her parent’s house to figure out the next plan of action. There, she was told there were two options—go to Kolkata or Mumbai for treatment. The family decided to come to Mumbai and get treated at Tata Memorial Hospital.

Again, Amrita and Mohit with two of her relatives came to Mumbai for treatment. Her husband stayed in Delhi to earn and look after her daughters. Amrita had sold some of her jewellery and arranged for Rs 100,000  to come to Mumbai. They stayed in a low- cost rental home for two months but soon ran out of money while undergoing investigations.

By then the cancer had spread to her right breast and had progressed to stage 4. She was told she would need 18 sessions of a drug that cost Rs. 80,000. Similar roadblock as before –  no money. “We asked the doctor to tell us what to do. We have no money left,” Mohit said.

A 2023 analysis of more than 12,000 cancer patients published in Frontiers showed that more than hospitalisation, it is outpatient treatment–medicines and investigations– that is more expensive and causes more impoverishment. The out-of-pocket expenditure was higher for private institutes and for patients without state-sponsored insurance. On an average, cancer patients spent Rs. 331,000 on out of pocket expenditure annually–almost two times of the per capita income in India of Rs 169,000. 

Ignorance, low income, and low priority

Amrita’s case is not an exception: in India 50 percent of breast cancer patients are detected in stage 3 and 4.  While India has started a population based screening for oral, breast, cervical cancers in health and wellness centres since 2017, the implementation is poor as we saw in the first story of the series. Only 0.9 percent have ever been screened for breast cancer, according to the National Family Health Survey 2020-21.

In the case of breast cancer, even a self-examination can lead to early detection but most rural Indian women do not know about it. In a 2018 study among 1000 rural women from Wardha, Maharashtra, one-third of the respondents had not heard of breast cancer and more than 90 percent of women in both rural and semi-urban areas were not aware of self breast -examination. 

The same Wardha study also included interviews with 212 breast cancer patients and found that more than half of them had a delay between symptoms and first consultation of three months on an average. The study found the most common reason for patient’s delaying seeking a diagnosis was painlessness of the breast lump and lack of knowledge about breast cancer and even after diagnosis, many patients delayed beginning the treatment due to the high cost of the treatment. 

Some of this is because in a patriarchal family system women feel uncomfortable talking about their private parts and symptoms of gynaecological cancers – excessive bleeding during periods, foul smell in vaginal discharge, lumps in the breast and painful sex – even with their husbands who are the main decision-makers, said Vandana Mahajan, the palliative counsellor. 

This is why breast, ovarian, endometrial and cervical cancer is detected late because women suffer the first symptoms in silence, she said. “I have seen women, both in rural and urban India, who have detected a [breast] lump, told no one about it till it reaches a point where there is an abscess because they are not even empowered to take care of their own health,” said Mahajan.  

Further, elderly women often have delayed treatment because they are dependent on their children to take them for hospital visits and confuse cancer symptoms with those of other chronic health issues, found the Wardha study.

A delay of a month in cancer treatment increases the risk of death by 10 percent, a 2020 study published in BMJ showed. This further perpetuates the myth among people that cancer is a disease with little return on investment due to low survival rates. 

Further, it is difficult to convince women to invest time and money and overcome social norms to seek care because they have internalised their expected roles as nurturers. “Women do not prioritise their health, it’s always their family or children. Their position in the family along with lack of knowledge and power in their ability to make decisions are reasons why women present with cancer at a late stage,” said Ishu Kataria, Senior Public Health Researcher, Center for Global NCDs, RTI International. 

Impact on families and finances

Given that cancer affects younger women in low and middle income countries leading to premature death and disability, the impact on their family is deep. Women are not central not only in direct care-giving for their children, but more broadly in society, playing key roles in socialisation, education and health of children. A mother’s death has complex effects on the children and the families they leave behind, said the Lancet’s 2017 study on the global burden of women’s cancer.  

Women are also already at an disadvantage when it comes to social status and access to wealth and further, they are more likely than men to risk the financial catastrophe cancer brings, with dire consequences for their families, And this is the case even when quality cancer care is available, showed The Lancet Oncology’s ‘Women, Power and Cancer’ Commission quoted earlier. 

The commission conducted an original analysis of data from the ASEAN Costs in Oncology (ACTION) study involving 3285 women in eight countries who had been newly diagnosed with cancer at various sites and survived at least 12 months of follow-up. They found that women spent  80.2 percent of their overall annual household income on cancer-related costs in the 12 months following diagnoses, which amounts to a median of $2285 [Rs 190,000]. Further, those in lower-middle income countries spent a median of 161.2 percent of their annual household income on cancer costs–catastrophic health expenditure is defined as out-of-pocket spending exceeding 40 percent of nonfood consumption. This means that most of these families would be in deep debts due to catastrophic healthcare expenditure.  This is why there needs to be gendered investment in cancer care, the Lancet commission argued. 

Despite being married at a very young age, Amrita’s strength through her ordeal are her son Mohit and her mother in Jharkhand. Her husband sent her money now and then but it was her  mother who found ways to send her money most of the time. Her brothers were not supportive of her or her parents.  Amrita and Mohit wanted to shield her daughters as much as possible from her ordeal and so returned to Jharkhand when all treatment options were exhausted.

When the last hope fades

Amrita’s family has borrowed heavily to continue her treatment in Delhi and Mumbai. It was a chance encounter with another patient’s relative at the OPD of the Tata Memorial Hospital that led Mohit to the Gadge Maharaj Dharamshala. Still without money, she and her son stayed in the building’s courtyard for three months before approaching various trusts for funds. Later, Mohit arranged for money to stay in the dorm inside the hostel and for continuing her treatment. 

The two stayed in the fifth floor dorm of the dharamshala meant for female patients. For Rs. 3000 per month, each patient got a bunk bed, common bathroom and washroom and three meals a day. Despite being highly subsidised, they were three months behind on rent when I met them in December 2023. 

Amrita told me that 95 percent of her treatment was done and the drugs were no longer working. She appeared stoic about her fate. The hospital staff had said that there is a slim chance that a clinical trial might help her. That was the only hope she articulated when I asked her how she felt and if she was willing to go out and see a bit of the city before returning home. She had only been to Siddhivinayak temple in the city and not many other places in the last two years of her stay in Mumbai. “I am waiting for the call from the hospital, I can’t go anywhere,” she told me.

In April 2024, when I spoke to her son on the phone, he said that the trial didn’t work for her. “We were told to go home, we stayed in Delhi for some time and now have come to her native place in Jharkhand,” Mohit told me. Amrita is now weak and on pain medicine.  For the last two years, Mohit has been by his mother’s side – he was a 17-year-old who had not yet given his 10th grade exam. Now he has finished 12th grade but he has decided to quit studies. He had dreams of being a model but the last two years have made him choose a more pragmatic dream – finding a regular job. 

In June 2024, when I spoke to Mohit, he said that Amrita is in severe pain and has not slept for the last 10 days because of this. The cancer has spread to her lungs and the throat and she is having difficulty in breathing and swallowing food. The pain medicines that the palliative department of the Tata Memorial Centre had given her had run out. They were relying on pain medicines available off the counter but the medical facilities in Dumka are unreliable, he said.  They are staying with his aunt and her family who have been helping the family to take care of Amrita.

With only a few weeks left, Amrita’s husband and daughters are travelling to Dumka to see her in two days, Mohit told me.  He has started working as a day labourer in the meanwhile to pay for the medicines. His last job–working in a tea stall–was better than nothing, he told me. 

Postscript: Amrita Singh passed away on the morning of June 12, 2024 surrounded by her family. 

This is the second instalment of a three-part series on gender and cancer. Read the first part here. It was first published on Behanbox, a gender journalism platform in India.

The writer is an independent journalist based in Ahmedabad. She writes on gender, healthcare and other developmental issues. This piece is edited by Malini Nair, a consulting editor with Behanbox, and a culture writer with a keen interest in gender.

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