While COVID-19 takes the limelight, patients of other terminal diseases struggle

Patients are seen wearing protective masks amid the COVID-19 scare at AIIMS hospital, on 18 March in New Delhi. As an increasing amount of resources in the health sector are diverted towards dealing with the COVID-19 pandemic, patients of other ailments have been forced to take the back seat. Only emergency cases are being treated, leaving out many who are in dire need of care. Biplov Bhuyan / Hindustan Times / Getty Images
01 April, 2020

Earlier this month, Maitri Lakra, a 40-year-old from Delhi, was diagnosed with tongue cancer. The diagnosis had come after a long ordeal. Maitri is also HIV positive, and had been suffering from mouth ulcers for the last two years. They did not worry her initially because mouth ulcers are a common condition among people with HIV. However, the ulcer refused to heal and started to cause extreme pain, giving her sleepless nights since last May. Maitri and her husband, Najarius Lakra, started going to government hospitals in Delhi to get her relief. After ten long months of multiple tests and treatment, it was only on 9 March that she learnt about her cancer, at the All India Institute of Medical Sciences, Delhi.

“She has not eaten in months due to the pain and has survived only on bare minimum liquids. For the last one month, her speech has also gone completely,” said Najarius. Maitri currently weighs only 30 kilograms and constantly feels weak.

At the time of her diagnosis, a doctor from the surgical-oncology department at AIIMS told her that the cancer was in its initial stages. She needed surgery as soon as possible to prevent it from growing into stage-3 or stage-4 cancer, which increase the lethality of the disease greatly. She was told that she was unlikely to get a date for her surgery before mid-July at AIIMS, because of the overload of patients at the hospital. The doctor, instead, referred her to another campus, the National Cancer Institute, AIIMS in Jhajjar in Haryana. Patients at NCI could be operated upon within a week or two, Maitri was told. On 16 March she went to NCI and underwent tests there, and was asked to come back ten days later.

In the week starting 16 March, state governments across India started to impose rules to minimise physical interaction between people due to the COVID-19 pandemic. On 16 March, the union health ministry released an advisory that called for state administrations to either close down or restrict access to all places where large crowds normally congregate. Health facilities, too, began rolling back services that did not deal directly with COVID-19. On 22 March, Maitri received a message from the radiology department of AIIMS, Jhajjar stating, “All Radiology appointments are postponed in view of covid-19 crisis. You will be informed when bookings resume to take fresh appointment.” On 24 March, Prime Minister Narendra Modi announced an unanticipated nationwide lockdown that restricted movement and functionally sealed state borders. Maitri could no longer physically go to Jhajjar to request that she be treated urgently because of the severity of her condition. She could not approach other hospitals in the national capital either because most outpatient facilities had closed down.

Meanwhile, her condition kept deteriorating. On 30 March, Najarius told me, “She has been bleeding from tongue and has excruciating pain. We have been bringing her to AIIMS, Delhi’s emergency for the last three days. She is being given pain management.”

As an increasing amount of resources in the health sector are diverted towards dealing with the COVID-19 pandemic, patients of other ailments have been forced to take the back seat. Only emergency cases are being treated, leaving out many who are in dire need of care. The AIIMS cancer department stopped taking new cases since 25 March and were treating only those who were already admitted. They have stopped conducting any surgeries. This is bound to affect a large number of patients. In the financial year 2018-19, the Dr BR Ambedkar Institute Rotary Cancer Hospital, the cancer facility of AIIMS, Delhi saw a footfall of nearly two lakh patients and conducted twelve-thousand surgeries, an average of a thousand surgeries a month. Cancer is a disease which needs early treatment, without which the patient slips into more painful and less treatable stages.

Another category of patients who have been badly hit by the reduction of medical services following the COVID-19 outbreak are those with blood-related disorders such as thalassaemia. Thalassaemia is an inherited blood disorder that reduces the production of functional haemoglobin. Such patients require regular blood transfusions, generally twice a month. In absence of transfusions, their haemoglobin level starts to fall, which can create long-term damage to major organs including their lungs, kidney and liver. “Children with thalassemia have been badly hit during the current crisis,” Vinay Shetty, the vice president of the Think Foundation—a Mumbai-based organisation working for thalassaemics and promoting blood donations—said. “We have been receiving lots of distress calls,” he added, during our conversation on 26 March. “Yesterday, a child had an appointment for blood transfusion at a public hospital. But the hospital called her, informing cancellation of appointment.”

Shetty said that children and adults requiring blood are facing a range of problems. Going to hospitals in itself can be a concern as thalassaemics have low immunity. Reaching a hospital is a challenge under the lockdown. Added to this, the availability of blood has become incredibly low across the country. “Due to lockdown, the usual blood-collection drives have been impacted adversely,” Shetty said. “We cannot organise blood camps. Thalassaemics cannot arrange blood themselves because their donors will not be able to reach blood banks,” he said. Shetty estimated that Mumbai alone has 2,400 children with thalassaemia who need regular blood transfusion. “This problem will be faced by all patients needing blood. On an average, nine hundred people need blood or its components daily in Mumbai,” Shetty added. “If blood banks run out of blood, then there will be a crisis.” He said that his organisation was talking to blood banks to send permission letters to volunteers on WhatsApp, in hope that the police would allow them to travel to blood banks to donate.

Patients, especially the elderly are also finding themselves at the receiving end of panic and disruption of services. On 21 March, a 70-year-old from Mumbai, developed a fever and started to feel nauseous. Her family suspected that her haemoglobin was dropping as she had a pre-existing condition that occasionally caused this to happen. They called several private hospitals in the vicinity and all of them refused to send an ambulance to check her. She was finally admitted to a small clinic near their house.

By early morning, her condition worsened and the family was told that she had to be shifted to a bigger hospital in want of a ventilator. The doctor who was overseeing her agreed to write her a referral. The calls to hospitals started again. After many rejections, one private hospital agreed to send an ambulance, and they reached the hospital soon. “But when we reached the hospital which had finally agreed to take her in, they also refused her because of fever,” her nephew said, on the condition of anonymity. “COVID-19 is associated with fever and hospitals were reluctant to take such patients in. After a lot of persuasion, the hospital agreed that if we produced a no-COVID-19 certificate from Kasturba Gandhi Hospital, she will be treated,” the nephew said. After clinical examination, doctors at Kasturba Gandhi Hospital, in Mumbai gave her the certificate. The private hospital still refused her admission. The family rushed her to yet another private hospital, but she passed away before they could make it. The family, fearing repercussions by the authorities, requested not to be named, in case they need medical help in the future.

“What we saw was very scary,” the nephew said. “She could have been easily treated only if hospitals agreed to at least examine her. There are other elderly in the house who may need help any time. We just wish that none of them falls ill before normalcy is restored.” He added, “We won’t know whether she had COVID-19 or not till we receive the post-mortem report. But this is a COVID-19 death as she died waiting for care which was not given to her due to COVID-19.”

State governments are also shutting down regular activities that are crucial to prevent diseases among children. The Rajasthan government, on 27 March, suspended all outreach services related to immunisation. This means that Village Health Nutrition Day will not be held until further orders. VHNDs are observed monthly to promote immunisation and a range of services under the government’s Maternal-and-Child-health Programme. These include anti-natal check-ups, the registration of new pregnancies and the distribution of iron and folic-acid tablets. VHNDs are important to identify children and pregnant women who need such services. On 30 March, the Rajasthan government brought out another notification asking officers to not disrupt MCH services, but not clearly stating that outreach services in villages should continue.

Chhaya Pachauli is a member of the Rajasthan chapter of the People’s Health Movement—a global network of grassroots health activists. Her organisation has demanded that immunisation and anti-natal check-ups should be conducted door-to-door to avoid large gatherings and at the same time avoiding disruption of important life-saving services. “Interruption of essential MCH services can have serious repercussions,” she said. She added, “While sustaining routine health care services will be a challenge due to diversion of resources towards COVID-19, yet it will be disastrous to discontinue them. States must come out with a comprehensive plan to ensure that regular essential services are resumed at the earliest. We can’t afford unwarranted deaths at this point of time.”