Collateral damage of COVID-19: People whose cancer, TB and kidney disease got worse

Manju, a cancer patient, and her husband Tara Chand, from Jhansi city of Uttar Pradesh, wait to get a date for her chemotheraphy, in a tent outside a hospital, in New Delhi, on 1 April 2020, in the middle of the nationwide lockdown to contain the novel coronavirus . Yawar Nazir/Getty Images
31 August, 2020

Pramod Joshi, a 47-year-old resident of Delhi, was diagnosed with a brain tumour in September 2019. He started treatment the following month at the All India Institute of Medical Sciences, in Delhi, and soon needed surgery. He had the tumour resected at a private hospital in the city and started chemotherapy by February 2020. The next step was to start radiation to attack the remaining glioma—a tumour of the cells that surround and support nerves in the brain and spinal cord. Pramod was scheduled to start radiation treatment at AIIMS in mid-April. However, the COVID-19 outbreak hit India in full force by late March and the country went into lockdown.  Pramod could not get his radiation therapy as hospitals closed their outpatient departments and major hospitals became COVID-19 centers admitting only patients infected with the novel coronavirus. Deepak Joshi, his brother, said that the family watched Pramod deteriorate for more than three months and lose function on the right side of his body. 

Pramod had some hope in early June, when doctors at Venkateshwar Hospital, a private facility, agreed to start Pramod’s radiation. But there was another hurdle. “We were asked for some blood-reports and a COVID-19 report,” Deepak said. “The COVID-19 report of 10 June 2020, came positive. It was surprising as my brother had not gone out for a single moment.” Pramod remained asymptomatic for COVID-19 but his radiation was put off once again. He had to wait another month and take three more COVID-19 tests before he was clear of the infection and could start radiation in late July. 

“But by then he had already lost all the strength of right leg and right hand,” Deepak said. “He is now almost paralysed in his right limbs.” He blamed his brother’s plight on the “casual approach on part of policy makers, who totally ignored the plight of patients suffering from other disease requiring timely treatment.”

The disruption of regular healthcare because of the COVID-19 pandemic and subsequent lockdowns has had severe, and sometimes catastrophic, effects on patients with other acute or chronic illnesses. Patients found that hospitals that had been treating them were suddenly closed. Others were turned away from public hospitals, private healthcare facilities and even primary health centers. Patients with manageable disease conditions have had their illness become irreversibly worse because COVID-19 has been given priority almost to the exclusion of all other healthcare. 

Many patients struggled just to get to hospitals with the imposition of national and state-level lockdowns. One such case was Fulwa Devi, a resident of Amra village, in Bihar’s Gaya district. She had a form of cancer called chronic myeloid leukemia. In late May, her husband had to take her on his bicycle, riding a hundred kilometers, to the Indira Gandhi Institute of Medical Science in Patna because trains and buses were not functional. She managed to get her treatment after spending a night outside the hospital. 

Several others had to visit many hospitals in hope of getting treated. Ram Narsingh Pandey, a 53-year-old employee of the South Delhi Municipal Corporation fell ill towards the end of March, just as the lockdown came into effect. He managed to get a biopsy and was diagnosed with a form of cancer called an anal carcinoma. The hospital that did his biopsy had restricted facilities due to the COVID-19 outbreak. He was referred to three other hospitals, none of which could treat him because they were only attending to COVID-19 patients. Pandey finally got chemotherapy at the Safdarjung Hospital but could not move to the next step of radiation. He was told that the hospital’s radiation facility was not functional. Pandey and his daughter Shweta once again went from hospital to hospital for radiation therapy till they found one private hospital that offered him the treatment. Shweta is not sure how long she can afford to pay for treatment at a private hospital. Her father is the only earning member of the family and he  is seriously ill now. “We have suffered a lot—financially, mentally and physically,” she said. “The government should have made alternative arrangements for non-COVID patients.” She even wrote a letter to the chief minister of Delhi Arvind Kejriwal to request help but never heard back. 

An article in the medical journal The Lancet Oncology highlighted how delays in detection and treatment of cancer during the first months of the COVID-19 pandemic are likely to increase the cancer burden. It pointed to a global modelling study which projected that 59.7 percent of cancer surgeries—more than 51,000 surgeries—were postponed in India in the first three months of the epidemic in India. 

Many others, apart from cancer patients, have suffered the consequences of the pandemic and lockdown. According to Dr Kalpana Nagpal, senior consultant and robotic surgeon at the department of ENT, head and neck surgery of Indraprastha Apollo Hospitals in Delhi, there are a lot of diseases that become complicated because of delayed treatment. “Brain tumours or dialysis patients or chronic liver disease or intestinal lesions, cardiac illness, orthopaedic ailments etcetera could keep progressing and cause severe disease,” she said. “Treatment options would be limited if they are presented late. Medical treatment may fail in some. Surgical results may not be the same.”

Thirty two-year-old Lucky Prasad, a resident of Chapra in Bihar, was diagnosed with renal disease in February. He had to travel to a hospital in Faridabad in Haryana and subsequently to two hospitals in Delhi for emergency treatments. He then went to the Post Graduate Institute of Medical Education and Research in Chandigarh where doctors prescribed dialysis but referred him to another hospital. “He had to go for five dialysis but after four, the lockdown happened,” Prasad’s wife Suman Devi said. “He could not complete the fifth and we returned to Faridabad. His condition again deteriorated in lockdown and we went to many government hospitals like AIIMS, Safdarjung and also Ram Manohar Lohia. But they did not admit him. At RML, we could not even enter the premises of the hospital as the security guard denied our entry.” Prasad finally got his fifth round of dialysis at a private hospital in Faridabad.

The journal Kidney International Reports published a study in early July on the effect of the COVID-19 pandemic on people with kidney failure. The study surveyed 19 major public and private hospitals and found that the number of patients dropped from 2,517 to 2,404. About 710 patients missed one or more dialysis sessions, 104 stopped reporting for dialysis entirely, 69 required emergency dialysis, and nine patients were confirmed to have died. These results were among hospitals surveyed. India has 1,74,478 patients across the country known to need dialysis. The study concluded that the pandemic had an immediate adverse effect on care of dialysis patients while the long-term effects on their health remained unknown.

Nagpal shared anecdotes of several cases which were unable to reach specialist doctors in time—a diabetic who was treated by a general physician in a rural area and developed facial palsy; five cases of sudden hearing loss came to doctors late and had no option but to get hearing aids; two cases of thyroid nodules which became cancerous; a case of buccal cancer with neck nodes that progressed to stage four; a nasal mass that had grown so big that it caused the eye to swell, interfered with vision and needed emergency surgery.

Many of these cases were due to disruptions in regular outpatient services in large hospitals that see thousands of patients. For instance, in 2018, AIIMS in Delhi had more than 38 lakh outpatients and the King George Medical University in Lucknow, Uttar Pradesh, had more than 16 lakh. 

A government employee and resident of Delhi who did not want to be identified told me his daughter suffered because of a delay in treatment for hearing loss. After an initial consultation at AIIMS in February, she could not get the required surgery once the lockdown was imposed. The hospital admitted only emergency cases and procedures deemed elective were refused. She lost hearing in one ear completely. “We suffered a lot and a big loss happened to us,” the government employee said. “We continued trying to get any help in AIIMS, Delhi but could not succeed. It was all due to the COVID-19 crisis.” He was compelled to spend more at a private hospital the city for his daughter to have surgery on the tumour that was causing her hearing loss.

Tuberculosis patients were among the worst affected as their access to medicines was disrupted. Dr Anita Nayar, a physician who lives at New Friends Colony, in Delhi, said “For a poor person who is sick, to travel a long distance every day for an injection is not easy. Also, lack of compliance results in multidrug resistant TB which can be fatal.”

Nayar, who has been helping migrant labourers in her area, recounted the experience of a tuberculosis patient she met. Ten-year-old Jyothi, who lived in south-east Delhi with her aunt and uncle, developed fever and a severe back ache. She was diagnosed with tuberculosis in her brain. However, her aunt was unable to get all her tuberculosis medicines at the neighborhood Direct Observation Therapy or DOTS center. She had to buy streptomycin injections from a pharmacy and have a private doctor administer it to Jyothi at a cost of Rs 60 per day. This was a huge expense as both she and her husband lost their jobs due to the lockdown and had no savings. She finally got Jyothi free medication at a DOTS center in a different locality.

“During lockdown, it is very difficult for patients to reach health facilities, particularly DOTS centers,” Dr Kuldeep Kumar said. Kumar is an assistant professor at the department of medicine at University College of Medical Sciences and Guru Teg Bahadur Hospital in Delhi, said. “Due to the ongoing pandemic, many health facilities have been converted into COVID-19 hospitals, therefore diagnosis of extrapulmonary tuberculosis may be delayed as it requires specific investigations which are not available at smaller health care facilities.” Kumar pointed out that health facilities had also diverted health workers who  managed tuberculosis patients for management of COVID patients. “In my village area in Bihar I found that a Dalit patient of tuberculosis was denied treatment by the community health center because they said they were overburdened due to COVID crisis,” Pratyush Singh, a research scholar at the Centre for Social Medicine and Community Health at Jawaharlal Nehru University said. All these conditions lead to increased mortality and morbidity due to tuberculosis in India, a country that already has the largest number of tuberculosis deaths in the world. 

The disruption of community health centers and primary health centers—first points of contact with the health system for many rural and urban poor—also had severe consequences. Jansi, a resident of Bengaluru,  is the convenor of the Slum Mahila Sanghatane, an NGO that works with women in slums in the city. She goes by one name and told me that people living in slums have been the worst affected. She said that primary health centers ignored non-COVID-19 cases, sometimes with fatal consequences. Jansi claimed that her neighbour died of a heart attack in early July due to such negligence.  “He was 55 and had a mild heart condition and he was taking his medicines,” she said. “Suddenly on 6 July, he felt pain in his chest and went to the primary health center. There he could not get any help or suggestion.” Jansi said the man approached the facility repeatedly for help to get into hospital. “On 8 July, they asked him to come the next day but he died that night.” 

Malarvizhi, a program officer in Bengaluru with the NGO Action Aid who goes by one name, has witnessed a range of cases since the pandemic started—from a bleeding pregnant woman being denied critical care to a man not able to get rabies medicine after a dog bite. “Many people living in slums have not been regular with tablets even for chronic or acute diseases as they do not have money to spend on medicines,” she said. “The state should facilitate medical camps specific to diseases and immediately make the medicines available for all in the primary health centers making it free and accessible.”

Correction: An earlier version of this article incorrectly stated that AIIMS in Delhi has more than 38 lakh outpatients every year and the KMC Digital Hospital in Lucknow, Uttar Pradesh, has more than 16 lakh. 

In 2018, AIIMS in Delhi had more than 38 lakh outpatients and the King George Medical University in Lucknow, Uttar Pradesh, had more than 16 lakh. The Caravan regrets the error.