Right until the end of last week, except for a mild cold that Prakash Gangwani felt coming on, everything had been well at home. A middle-class family that lived in a two-room apartment on the outskirts of Mumbai in Ulhasnagar, the household comprising three members—the 51-year-old Prakash, his younger brother two years his junior, and their 75-year-old mother—were a tightly knit unit. Prakash ran a textile business. The younger brother, handicapped and bedridden for years, was cared for by the mother.
“Whatever happens, they have always been there for each other,” says Anil Rohra, a relative. According to Rohra, the family had been extremely careful to avoid getting infected by Covid-19 ever since the pandemic broke out. The mother hadn’t stepped outside her house for over six months. Only Prakash would go to work, Rohra says, always taking the utmost precaution.
When the cold persisted, a Covid-19 test revealed that Prakash was positive. There was worse news to follow. Even the mother and the brother had got infected. On April 16th, a breathless Prakash was wheeled into a nearby hospital. Extended relatives of the family had managed to find a bed in a hospital after great difficulty.
But their nightmare was just beginning.
“The doctor at the hospital prescribed (a six-day course) of remdesivir. They told us the hospital had no stock of this medicine and that we were to get it ourselves,” Rohra recalls.
With neither the mother nor the handicapped brother in a position to help, a relative who lived in a nearby house and others based in Mumbai, such as Rohra, joined the hordes of relatives and friends of Covid-infected patients scouring the city for this antiviral drug. They called up various drug suppliers; visited chemists and hospital dispensaries; queued up early in the morning outside hospitals where they heard the drug was available; and put up pleas online. After three days of search, all they could manage was a single dose.
“What will we do with one?” Rohra asks. “The doctor says Prakash needs another five.”
On the third day of their search, the hospital authorities told Prakash’s relatives that the hospital, having now been designated as a ‘Covid-only hospital’, would be allocated supplies of the drug.
There are however many concerns for the extended family. Just a day earlier, some hospital authorities asked Prakash if he could be discharged to be cared for at home. Many hospitals, especially in urban areas in Maharashtra, are asking moderately well patients to recuperate at home to free up spaces for the more severely ill. “He can’t breathe without oxygen support and can’t keep down the food he eats. He has told them, he’s not going anywhere before he is cured,” Rohra says.
Even if he manages to continue staying in hospital and receives his full course of remdesivir, the extended family has now begun to worry if the other two family members, currently recuperating at home, might also need this drug. “What do we do then?” Rohra asks. “One of them is 75 years old. The other is handicapped.”
As the country reels under a terrifying second wave of the pandemic, with an unprecedented number of infections and deaths, such accounts are becoming more routine. Beds are nowhere to be found in big cities like Delhi and Mumbai. Oxygen supplies are running out. Patients’ harried relatives are reporting that Covid-19 switchboards either do not pick up calls or, when they do, are so overwhelmed as to be unable to help. Even the most well-connected are struggling. Just a few days ago, Abhijit Mukherjee, the son of former President Pranab Mukherjee, used Twitter to try to find supplies of remdesivir.
As people gasp for breath or struggle in hospitals, family members and friends have to scour pharmacies and hospitals to look for repurposed drugs such as remdesivir that are in short supply and which many studies have indicated have little or no efficacy on a vast majority of Covid-19 patients.
Amid this intense shortage, a thriving black market for these drugs has emerged. There are reports of remdesivir being stolen from hospitals and being sold at inflated rates. Even though the current price of a single dose of this injected has been capped between Rs 1,100 and Rs 1,400 in Maharashtra, a 25-year-old from Pune, Saurabh Salvi, who has been searching for this drug for his father for the last three days says he was offered a single dose for Rs 25,000.
Several cities and states are framing new rules to deal with this shortage. In Indore, new rules have been introduced so that the drug is not sold over the counter but allocated to hospitals. But this has been far from smooth.
Avani Kashyap and her family members have been so caught up in making arrangements for her 61-year-old father—currently being treated in the high-dependency unit in a hospital in Indore—from securing a hospital bed to getting access to remdesivir, that, she says, none of them has had even the time to collect their breath and process the stress. “I have lost count of the number of hospitals my family members and I visited and the number of people we called. I had even posted a tweet. A lot of people came forward to help. Yet, we could secure a bed only after two days,” she says.
Kashyap and her family had initially made arrangements for her father to recover at home, but his sudden deterioration had forced them to look for a hospital bed.
With the surge in cases, there’s a shortage of drugs and therapies. But many of these—antivirals like remdesivir or plasma therapy—help in the recovery of only a small section of patients as shown by several studies over the last year. In most cases, they do not help at all
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Although all patients recuperating in hospitals and requiring the drug are supposed to be given it by the hospital itself, the shortage means family members need to push and keep vigil. “The injection is being allotted to hospitals as per availability. Once the hospital gets a stock, the patient’s family has to run from pillar to post to ensure their patient gets the injection,” she says. “My father finally received his first injection at 2AM yesterday!”
Vinod Shah, who is part of Mumbai-based NGO Aashayein Charitable Trust that has been arranging for plasma from recovered individuals, says they get calls for about 25 units every day. “We can at best fulfil about 15, and the rest just carries on to the next day,” he says. The NGO earlier helped family members source other drugs such as remdesivir by connecting them to suppliers, but since a lot of these drugs were being sold at inflated rates, they got out of it.
Despite their efforts, the news of deaths has now become routine, Shah says. “Just this morning, I heard from a person for whose mother we had been supplying plasma units for two days. She had died,” he says. “We feel so miserable then.”
With the surge in cases, a shortage has risen of several drugs and therapies. But many of these, currently widely is use—antivirals such as remdesivir or favipiravir, immunosuppressants like tocilizumab, or plasma from recovered individuals for convalescent plasma therapy—help in the recovery of only a small section of patients, as shown by several studies over the last year. In most cases, they do not help at all.
“Remdesivir gives no mortality benefit. It can reduce hospital stay at best by one day or two, or maybe three, and only in patients who are moderate or progressing to sick. It reduces viral replication. And viral replication stops by Day 9 or 11 in the body anyway. So the best use of such a drug, if at all it has to be used, is between Day 2 and 10. Otherwise, it is futile,” says Dr Rahul Pandit, Director-Critical Care, Fortis Hospitals in Mumbai and a member of Maharashtra’s Covid-19 taskforce. “This drug is not to be taken at home or to be given to asymptomatic or mild cases. And it is not for the severely ill. They won’t respond to it.”
Several studies have shown that others like favipiravir, tocilizumab and plasma therapy do not work either. “Plasma therapy has no role to play, unless given in the first three or four days. That too would be miniscule. The evidence shows favipiravir is poor too and tocilizumab can make patients susceptible to infections. It may help if timed correctly, just before a cytokine storm is coming. But if you get that wrong, it makes patients susceptible to infection. It is not worth pursuing at all,” he says.
According to Dr Harish Chafle, an intensivist with a specialisation in respiratory medicine at Global Hospital in Mumbai, several of these drugs and therapies have been so hyped that doctors feel pressured to prescribe them. “Many doctors, especially those in smaller hospitals, are unable to say no. Otherwise, patients won’t listen,” he says.
Apart from leading to a shortage and making the drug unavailable for the few who need it, the overemphasis on drugs like remdesivir can also have other consequences. Since the drug is to be injected at the hospital, an individual who does not need hospitalisation, or who could have been discharged quickly, would now have to spend five or more days in the hospital, potentially making the bed unavailable to another. In several cases, doctors prescribe a 10-day course of the drug when a five-day course is equally effective. And in some cases, Dr Pandit says, doctors are asking relatives to procure this medicine for patients who have been exhibiting symptoms for 12 days and more. “It’s just not the right thing to do,” he says.
In several cases, the severity of this second wave, which has led to multiple infections in a single family, is pushing younger members, still in college or just about beginning their careers, to care for their relatives and hunt for these drugs. Vivek Sharma, a 21-year-old in Gurugram, spends all of his time outside the hospital where his elder brother is admitted. After his brother was prescribed a five-day course of remdesivir, Sharma spent several days outside pharmacies and calling up suppliers to procure the drug.
“Through some friends, I got two injections for him. But my brother is supposed to get his third tomorrow and I haven’t been able to get it,” he says. The hospital where his brother has been admitted has told him they will try to arrange for the remaining doses. “But it is not guaranteed. I feel miserable but what can I do?” he asks. At home, his parents and sister-in-law are caring for his seven-year-old niece who also tested positive.
Like Sharma, 25-year-old Saurabh Salvi spends all his time outside the hospital where his father is admitted. With his mother and sister distraught at home, and his father now made temporarily absent, this second wave has thrust him to the forefront in his family, and he is worried, he says, that he is not cut out for the task. “I can’t even find medicines for him (his father),” he says.
For the last three days, Salvi has been visiting pharmacies and hospitals nearby to find remdesivir. After persuading a hospital employee to visit the Covid-19 department set up by the collector’s office in the city, he managed to procure a single dose. “I have been told the hospital will be getting supplies of this drug now. But I don’t know if I can depend on them,” he says. The few times in the day when the hospital permits relatives to see the patients from a distance, Salvi moves from the spot outside where he spends all his time to see his father. “It lasts a few minutes and I give my biggest smile then,” he says. “And then I go back outside and think about how to get the rest of the medicines.”