One early morning in mid-June, Santosh Devi and her husband Khemchand rode their friend’s motorcycle from their house in Peepli village in Moradabad district of Uttar Pradesh to the Moradabad railway station 70 kms away. They were taking their eight-year-old son Shivam to Safdarjung Hospital in New Delhi. Shivam had Acute Myeloid Leukemia or AML, a severe form of blood cancer, and had been treated for a while at the Delhi hospital last year.

During Shivam’s treatment last year, the family stayed and slept in the hospital’s corridors, along with many other families. Although Shivam’s treatment was largely free, the family had to spend on food and travel. In about a month, Khemchand exhausted almost all the money he had. Meanwhile, Shivam began to recover. His improvement and the family’s cash crunch drove Khemchand to request Shivam’s doctor to suspend treatment so that the family could go back to their village for a while. When the doctor told Khemchand that Shivam’s treatment was incomplete, Khemchand promised her that they would return. But they did not.

“We didn’t have enough money and Shivam looked fine,” said Khemchand. “We have two other children to look after.”

Khemchand ignored the doctor’s follow-up calls. AML treatment takes about six months. In medical parlance, the family had abandoned Shivam’s treatment. Treatment abandonment is a significant cause for low survival of children suffering from cancer in countries like India.

No money, no treatment

A study in 2010 co-authored by Ramandeep Arora, a consultant pediatric oncologist at Max Super Specialty Hospital in New Delhi, estimated that about 40,000-50,000 new cases of childhood cancer occur in India every year. While the survival rate of leukemic children in high income countries is about 90%, it is about 60% in India. Leukemia is the most common cancer in children.

Another study that analysed data of 762 leukemic children in a hospital in north India showed that parents of 45% of children abandoned treatment. Researchers found that more than 95% of the treatment abandonment cases occurred for lack of money. The total cost to a family to treat a child with cancer is a complex mix of the direct cost of treatment and indirect costs that include loss of wages and paying for food, lodging and transport for the family.

“If everything is free and the family doesn’t have a place to stay or food to eat, it doesn’t work,” said Poonam Bagai, founder and chairman of CanKids, a non-profit organisation in Delhi that works on improving survival of the children suffering from cancer.

No free lunch

After abandoning Shivam’s treatment last year, his family did not consult any other doctor because he appeared well. Then suddenly one morning in June Shivam’s gums started bleeding. The family knew that this is a symptom of leukemia. Khemchand called Meenakshi Yadav, a social worker with CanKids. Yadav had helped the family admit Shivam in Safdarjung Hospital last year. She asked Khemchand to come back to the hospital.

When the family reached the hospital, Yadav spoke to the same doctor who attended to the boy last year.

“She refused to take up Shivam’s case sensing that his condition is very severe,” Yadav told Khemchand. “She said maybe you could try the All India Institute of Medical Sciences.”

When asked the doctor about the case, she said, “I can’t say much. The family didn’t meet me.”

When a disappointed Khemchand gave Devi the news, her forehead creased. “Why? What do we do now?” she said while caressing Shivam’s head. He was sitting lethargically in her lap. Khemchand consulted his younger brother Rinku who had accompanied them. They spoke to Yadav again who advised them to go to AIIMS, and also arranged lunch for the family.

“It is unlikely that another doctor would take up Shivam’s case at this stage, but the family should try,” said Yadav.

Nine-year-old Mohini who has cancer in her right eye, has been sleeping with her uncle and grandmother outside a metro station near the All India Institute of Medical Sciences. (Photo: Ankur Paliwal)

In the evening, the family could buy dinner only for Shivam. “A bowl of lentils and two chapatis cost us Rs 30,” said Rinku. “We can’t afford this food.”

They did not eat anything and slept somewhere in the hospital. They woke up early to be amongst the first few in the queue outside the pediatric outpatient department at AIIMS.

“The person at the counter said that the doctor meets patients with appointment,” said Rinku. “He gave us an appointment for two days later.”

Hungry and hassled in the June heat, carrying Shivam in their arms, the family looked around for food. Khemchand had heard that free food is distributed outside the hospital. He and Rinku stood in the long queue but gave up in sometime. The family decided to go back to their village.

“Our doctor didn’t meet us and there was no guarantee that the new doctor will help us,”said Rinku. “We could have still waited, but what about food? We thought we will think what to do at home.”

The family reached home that midnight and Devi cooked dinner – their first full meal after previous day’s lunch.

The family did not go for their appointment at AIIMS. “We did not want to go through the same experience,” said Rinku.

Support systems

Sometimes families abandon treatment because they have more faith on self-styled godmen. Bagai recalled a case in which a family abandoned treatment and went to a godman who gave them a 100% guarantee to cure their child, while the doctor had told them there were only 30% chances of survival. In other cases, the abandonment is cancer specific. Retinoblastoma or cancer in the eye has a higher abandonment rate. About 50% families abandon treatment the moment doctors say that the affected eye needs to be removed. This is why the parents of two-year-old Manish from Gorakhpur abandoned his treatment.

“They get scared and think things like who will marry the child when she or he grows up,” said Amita Mahajan, pediatric oncologist at the Indraprastha Apollo Hospital. Studies also show that adverse effects of treatment including painful procedures sometimes drive a family to abandon treatment. Families sometimes seek alternative treatment because that is less painful.

Reducing abandonment requires holistic support to families through money, lodging, food, transportation, parent support groups, psychological counseling, and a patient tracking system, says Arora. Tackling one or a few of these reasons does not solve the problem, he said. Research showed that only giving money to patients for transport to and from hospitals leads to only marginal improvement in abandonment rates in Bolivia, and providing free chemotherapy did not prevent abandonment in Indonesia.

“We should also develop more regional cancer centers with support systems for families,” said Mahajan.

Paediatric cancer patients and their families wait outside the Dr Rajendra Prasad Centre for Opthalmic Research inside the AIIMS campus. (Photo: Ankur Paliwal)

Pediatric oncologists say that counseling plays a crucial role in reducing abandonment, especially in the first few months of treatment. “Studies show that 90% of the families abandon treatment in the first month,” said Arora.

Mahajan pointed out that there is some government and non-government support for families who are too poor to afford treatment, but few know how to avail of this aid. There is Prime Minister’s National Relief Fund which can provide upto Rs 3,00,000 for treatment of life-threatening diseases including cancer. Similarly, most states have Chief Minister’s Relief Funds. By streamlining social and financial supports, Mahajan was able to bring down the abandonment rates from 50% at a hospital she visits in Bihar to less than 10% within a year.

Then, in big cities, some NGOs have set up shelters where these families can stay for free. But the number of families always exceeds the available space. There are night shelters close to hospitals that charge between Rs 30 and Rs 60 per night. Some families cannot even afford that.

Rajeev Kumar, director of non-communicable diseases at the Ministry of Health and Family Welfare, preferred to use the term treatment adherence instead of abandonment. “That problem cuts across most of the chronic diseases,” said Kumar. “Health is a state subject but we give lots of funds. Sometimes even when people have money and resources, and treatment is available, they still don’t take it.”

A major challenge in improving the survival of children suffering from cancer is the lack of quality data. The National Cancer Registry Program collects data about cancer incidence, burden and mortality. The latest data are of 2014 and only touch 10% of the Indian population.

“We feel the data underestimate the incidence of cancer in our country,” said Mahajan. “Even if we were to try to advocate for childhood cancer actively, we don’t know what the numbers are.”

There are no population based cancer registries in poor and populous states like Uttar Pradesh and Bihar. Also, there is no nationwide data collection of treatment abandonment or survival. “The quality of survival data depends on the ability to follow up patients, which is poor in India,” said Pramod Kumar Julka, former dean and professor of oncology at AIIMS. As a result, what happens to children like Shivam remains poorly understood.

Back at home, Shivam’s gums bled more and his mouth acquired a foul smell. Khemchand took him to a doctor in a nearby town, who advised that Shivam should be administered blood. Shivam looked better after the transfusion and played a little. Two mornings later, he woke up with a headache so severe that he started to cry and punch his head. Then suddenly he collapsed, had a fit and died.

This reporting project has been made possible partly by funding from New Venture Fund for Communications.