New Delhi: Vinod Sharma will never forget the night of July 24, 2019, when he and his wife hastily left in an ambulance for Delhi with their 13-year-old son, Tanuj, leaving their eight-year daughter with relatives. Tanuj had been diagnosed with leukemia and Gwalior, their hometown, was not equipped to treat him. For six months, the family lived in rented rooms in Delhi, while Tanuj was treated at a private hospital, after failing to get admitted to the All India Institute of Medical Sciences (AIIMS).

“There have been days when we have eaten just once to save money for Tanuj’s treatment,” said Sharma, then working as a technician in a textile weaving factory. Borrowing money from family and friends, he spent Rs 12 lakh on hospital bills and other costs. Tanuj’s cancer subsided after intensive chemotherapy, and the family returned to Gwalior in February 2020, hopeful that two years of maintenance chemotherapy at home (oral medication), interspersed with visits to doctors in Delhi, would allow Tanuj to return to a normal life and go back to school.

But then came the COVID-19 pandemic and the countrywide lockdown. Tanuj could not travel to Delhi in May for a bone-marrow test and specialised tests were unavailable in Gwalior’s diagnostic centers. With COVID-19 cases surging, the family also fears that Tanuj, already immuno-compromised, may get infected if he travels. Sharma, meanwhile, has lost his job at the textile factory, which has been shut down because of the pandemic. He has not been paid for the past two months.

Tanuj is among the 50,000 estimated Indian children in the 0-19 age group who are diagnosed with cancer every year, many of whom have had to face even worse challenges due to the pandemic and the lockdown. These range from postponing or missing their treatment cycle, to not being able to procure medicines and access specialised tests, to facing difficulty in finding admission because their hospitals have been designated as COVID-19 facilities. Some have not been able to go back to their hometowns amid the travel restrictions imposed during the lockdown even after completing their treatment, thus bearing additional living costs in big cities, while others are unable to travel to big cities to even start cancer treatment.

While paediatric oncologists are trying to make sure the pandemic does not interrupt children’s treatment regimen, including asking that a certain percentage of resources such as hospital beds be reserved for treating non-COVID19 patients and offering tele-consultations, support groups and NGOs are trying to raise funds to help families most in need.

Pandemic & lockdown

For low-to-middle income families like the Sharmas, already facing challenges in getting their children treated for cancer, and financially crippled by the high cost of treating paediatric cancers, the pandemic and the lockdown have been catastrophic, oncologists and patients’ families told IndiaSpend.

“There is a lot of hand-holding that is required when we treat children with cancer--particularly [for] the families from the lower socio-economic strata,” says Nita Radhakrishnan, a paediatric haemato-oncologist of the Super Speciality Paediatric Hospital, Noida, Uttar Pradesh.

“The government should make provisions so that non-COVID19 patients can continue to get treated during the pandemic. This requires an infrastructural change, increase in manpower and other resources such as hospital beds so that nobody who has a life-threatening emergency during this time goes without access to treatment,” said Radhakrishnan.

Despite having the highest prevalence of childhood cancer globally (on account of its higher population of young people), India has only 8-10 paediatric oncology centres, almost all located in big cities. Thus, many families travel long distances to get children treated. For example, IndiaSpend reported in October 2019 that 43.6% of those at Tata Memorial Hospital in Mumbai had travelled over 1,300 km to reach the hospital.

Postponed treatment can lead to relapse

While cancer treatment for children has a high success rate, this depends on timely diagnosis and on treatment being completed. Delays in diagnosis, high medical expenses and abandonment of treatment are significant reasons why four out of five Indian children do not survive cancer, as we reported in October 2019.

The pandemic has exacerbated these challenges. “Most childhood cancers behave aggressively and need immediate treatment, often requiring prolonged periods of intensive... chemotherapy,” said an article published in May 2020 in The Lancet Oncology. “As such, postponement of therapy, which could be considered on a case-by-case basis for adults with cancer, is not an option for children.”

Yet, our reporting found that some families are having to do precisely what is not recommended--postpone treatment cycles and follow-up sessions, putting young patients at risk of relapse. Others have not been able to procure medicines or access specialised tests that would show if the treatment had worked for their children, and detect early relapses.

“I have started tele-consultations with my patients during this time so that we can prescribe them medications even if they are not in town so that they do not have to postpone taking oral medications,” says Nandini Hazarika, a paediatric oncologist at Madhukar Rainbow Children’s Hospital, New Delhi.

India has 0.98 oncologists per million population, compared to 15.39 in China, 25.63 in the Philippines and 1.14 in Iran, as IndiaSpend reported in September 2017. With several hospitals being designated for COVID-19 treatment, there is also the challenge of getting children admitted for treatment. “Last month, we had 45 children with cancer who needed immediate admission and we were struggling to find places to send them in Delhi,” said Poonam Bagai, the founder-president of the NGO CanKids, which has played a pivotal role during the pandemic, liaising with the government, district administrations and hospitals, and arranging medicines, treatment and transport for children with cancer.

“We somehow managed to get them admitted but it is going to get worse as time passes and more hospitals get taken over for COVID-19 patients,” Bagai told IndiaSpend.

“This crisis is going to have a huge impact on the lives of children with cancer, she added. “They are already immono-compromised. We have to be more careful now than ever, to protect them from catching an infection due to COVID-19. Additionally, we have to make sure that those who are halfway through their treatment cycle are able to finish their treatment and those who are recently diagnosed are able to start their treatment.”

The organisation is trying to raise more funds to be able to continue its work. “We have started some work on petitioning the government to ensure that the lives of cancer patients and those with other life-threatening diseases are protected during this time. For now we really need to do all that we can to safeguard the lives of these kids,” said Bagai.

Patients unable to go home, blood banks challenged

The most common type of cancers that develop in children include leukaemia, brain tumours, lymphoma and retinoblastoma, a type of eye cancer.

“Since March 2020, we have been registering very few new patients because of the lockdown, and patients have not been coming for follow-up visits either,” said Radhakrishnan. In the face of this challenge, her hospital has categorised patients based on the severity of their illness to devise their treatment plan accordingly.

The least severely ill patients, who were on oral medicines, were asked to undergo blood counts locally, and attend tele-consultations. For those who could not procure medicines during the lockdown, the hospital provided them with three months' supply of tablets so that they did not have to travel to the hospital and risk being infected with the virus. It also suspended check-ups for patients who had finished their treatment.

In the case of those who needed chemotherapy once every two weeks, it increased that gap, for example, to once every three weeks, so that they did not have to make frequent hospital visits and risk catching COVID-19.

However, Radhakrishnan, who still sees about 30 patients a day, warned that there are also patients who need immediate treatment otherwise they risk losing their lives. It is a huge risk for them to travel to the hospital for treatment because they are immuno-compromised and prone to catch an infection. “We have to see if it is the treatment itself that is critical for their health or protecting them from catching an infection due to COVID-19,” she said.

“For new cases that are getting registered with us, I prefer tele-consultation first because I can see all the reports and the patient gets less exposed to catching an infection due to multiple hospital visits,” said Hazarika.

“Patients who are already registered with us are comfortable with us anyway so they definitely opt for tele-consultation,” she explained, adding that tele-consultation does not work in cases that need emergency hospital admission.

Another huge challenge for cancer-care centres is that blood banks are getting depleted. “Due to COVID-19, blood donors are not coming to us, and blood banks are facing a huge crisis,” said Radhakrishnan. The aggressive treatment of most childhood cancers leads to a fall in the haemoglobin and platelet counts of patients, and immediate blood transfusion is required.

Rural-urban contrast

Four-year-old Khyati from Karauli district in Rajasthan was diagnosed with retinoblastoma last year. Her radiotherapy treatment ended in February 2020. However, she was supposed to return to Delhi for a crucial follow-up test in April, but could not do so due to the lockdown.

“There are very few diagnostic centres that can conduct these follow-up tests in our district. We could only travel to Delhi in June 2020 and get the specialised tests after the lockdown was lifted,” said Khyati’s father, Ram Avatar, who works as nursing staff at a government hospital in Mathura, Uttar Pradesh.

“There are chances of a progression of the disease if treatment is missed,” said Hazarika, the paediatric oncologist at Madhukar Rainbow Children’s Hospital, New Delhi. “Initiating treatment is very important; otherwise other complications may arise. If we delay treatment, other organs may be damaged.”

“I feel fortunate that we are from Delhi, and don’t have to travel for treatment, like the outstation patients I see sitting outside AIIMS and waiting for their number,” said the mother of two-year-old Naina, another retinoblastoma patient.

Naina was diagnosed in December 2019, and on March 23--just a day before the countrywide lockdown was announced--she got her sixth chemotherapy treatment. Since then, she has been receiving injections in her eye every three weeks, and has now been put under observation.

However, while there was no break in her treatment, it was not easy to take her to hospital during lockdown. “Finding a vehicle to travel in during the lockdown was a huge challenge,” Naina’s mother said. “Even though our house is 1 km away from the hospital, there were police barricades which caused us to take a different route, about 5-6 km long. At times we found no autos, and had to walk to the hospital in the heat.”

Her mother also worries about her daughter being infected with COVID-19 at a crowded hospital like AIIMS. “When AIIMS was turned into a COVID-19 hospital, I was even more scared,” she said. “There was a sudden surge in the number of COVID-19 positive patients.”

Although children who contract COVID-19 are less likely to develop severe illness than adults, the Lancet Oncology article in May 2020 cited a study that said infants and children younger than five years were more likely to develop severe clinical manifestations than older children, above six years, “with immaturity of the immune system cited as a potential explanation”. It also pointed out that “viral infections, including with other human coronaviruses, are associated with increased morbidity and mortality in immunocompromised children”.

However, due to a surge in the number of those infected with COVID, significant manpower and resources such as hospital beds are devoted to treating them.

“As we continue to treat COVID patients, a certain percentage of resources must be reserved for non-COVID patients as well who are the actual victims of the pandemic,” says Radhakrishnan. She, along with a team of paediatric cancer specialists and non-governmental organisations has been approaching multiple government bodies such as the National Health Mission to raise awareness about the impact of delayed access to treatment and make sure that patients with other debilitating illnesses such as thalassemia, aplastic anaemia and cancer do not go without treatment. “We had two children who died due to unavailability of blood transfusion. We hope to get support from the government in order to safeguard the treatment of such children as we move further ahead into the COVID-19 pandemic,” she said.

Long journey home

Four-year-old Hooria came to Delhi all the way from Mazār-i-Sharīf in Afghanistan when she developed eye cancer last year. Her father, Abdul Nazir, who runs a small business in Afghanistan, had to shut his shop, his only source of income, because the doctors told him he would have to be away for months. After six months of intensive treatment, Hooria’s cancer has subsided. In fact her cancer responded to the first one month of treatment.

“The good news is that most childhood cancers are treatable. However, the treatment period is often very long. It can extend from six months to two years but unlike an adult cancer patient, the child often begins to respond within a month of therapy, which is a great thing,” says Hazarika, who is currently treating Hooria.

Hooria has two years of maintenance chemotherapy ahead of her, which can be carried out at home, according to Hazarika. However, with India’s international borders sealed, her family, which includes her two siblings, aged eight and two years old, was unable to return due to the lockdown.

Many families who manage to start their child’s treatment, abandon it due to multiple reasons, as Indiaspend reported in October 2019.

Four-year-old Hooria at the hospital in Delhi where she was undergoing cancer treatment. Hooria’s family came to Delhi all the way from Mazār-i-Sharīf in Afghanistan when she developed eye cancer last year. With international travel suspended due to the COVID-induced lockdowns, the family was stuck in the capital until June 15.

Hooria’s parents have managed to stay the course and get their child treated. But they have been anxious. “We stayed in a rented apartment in Bhogal near Lajpat Nagar and paid Rs 30,000 per month even after her treatment was over,” said Hooria’s father who finally managed to go back home with his family on June 15 with the help of the Afghanistan government.

In some cases, CanKids has been able to help, said Bagai. “We have facilitated inter-state travel to Uttar Pradesh, Bihar and Madhya Pradesh in the past two months, with the help of the police and the district administration,” she said. She also cited the case of a terminally ill child from Afghanistan, who was on palliative care. “We facilitated travel for the family so that they reached home before the child passed away, just before Eid-ul-Fitr on May 25.”

(Verma is a New Delhi-based independent documentary filmmaker, video journalist and a cinematographer.)

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