In January, when Michael Warren finished chemotherapy for blood cancer, the prognosis looked good. But as the 59-year-old was readying to return to work, he caught Covid. A series of hospital visits in the months that followed saw his weakened immune system seem to recover, only for it to deteriorate as soon as he returned home. In June, after learning that his first grandchild was to be a boy, he died.
Michael’s 29-year-old daughter Chelsea believes he would now be cradling her two-week-old had he been offered Evusheld. The antibody drug has been found to reduce the risk of immunosuppressed patients developing symptomatic Covid by 77 per cent. Approved by the Medicines and Healthcare products Regulatory Agency in March, it was expected to be made available in August. But delays and excuses have prevailed instead, with the drug – currently in use in 32 countries including the US and Israel – still unavailable on the NHS to the UK’s half a million clinically vulnerable people, for whom Covid jabs do not work. This is because many immunocompromised people don’t develop antibodies, leaving them at severe risk if they do contract Covid. With figures appearing to show reduced efficacy against some Covid strains, the government declared last month that “the quality of data is insufficient to warrant action to progress to patient access”. It states it will re-evaluate the situation after clinical trials end in late spring 2023.
Yet as of 13 days ago, patients can access Evusheld on private prescription, for £1,000 per six-month dose. (This would not include the cost of a consultation, nor that of administering the two jabs.) Providing it only in exchange for a hefty sum is another blow, Chelsea says, one that only furthers the inequity that vulnerable people have been experiencing. “It would be the equivalent of only offering the Covid vaccine to people who had the ability to pay for it,” she says. “There would be an enormous uproar [if that were to happen].” It means that those without Covid antibodies to protect them – along with their families – remain forgotten, staring down the barrel of a third bleak winter consigned to their own four walls.
With immunosuppressed patients at significantly higher risk of death from Covid, shielders are left with both their personal and professional lives in tatters. Since the pandemic took hold in early 2020, 44-year-old biomedical scientist Ketai Sithole, who had a kidney transplant four years ago, has been redeployed within the hospital she works three times. She’s been told to continue her job remotely “until the pandemic, according to the doctor, is over – whatever that means.” It is “a form of discrimination,” she says. “As a scientist, my question is: how long are we going to wait? You’re not going to find a magic treatment. Vaccines aren’t 100 per cent [effective], but they have saved lives… isn’t something better than nothing at all?”
Ketai has had five jabs and developed no antibodies. If she does catch Covid, her best hope of avoiding serious illness is antiviral drugs – not all of which are compatible with other medications many immunosuppressed people take. It’s a terrifying thought, she says: “‘Get the disease, get the treatment and then good luck to you.’ What about prevention is better than cure?”
She and others campaigning for access to Evusheld (the trade name for tixagevimab-cilgavimab, a monoclonal antibody combination) feel that they are being punished; their fragile health an inconvenient footnote for a government intent on moving past the pandemic as swiftly as possible. “We’ve made so many pragmatic decisions over medicines and vaccines during Covid, and it just seems that the decision-making around Evusheld is out of step with everything that’s gone before,” says Alex Richter, a professor of clinical immunology at the University of Birmingham. She believes the government’s heel-dragging is motivated by two things: money and politics. Along with the cost, rolling out the medicine would be “an acknowledgement that Covid is not over”, which does not fit with the party line. “It is absolutely bewildering,” she adds, that something that could significantly impact the lives of those eligible – and is in use in dozens of other countries – is only available at significant cost to those in need, many of whom have been severely financially impacted by the pandemic as it is.
That’s the case for Robin Boxall, who began shielding when his wife was diagnosed with non-Hodgkin lymphoma in early 2020. He lost his job as a carer working with disabled young adults because he couldn’t do so remotely, and is now receiving universal credit. “Through no fault of my own, [I’m] now navigating a benefit system that seems to make you feel like you’re guilty of doing something wrong all the time,” the 56-year-old says.
What has made things worse is believing that things were finally going to change. Rob – who also cares for his 30-year-old daughter Mollie, who has cerebral palsy – had been clinging to “that glimmer of hope that Evusheld would have been our passport back to a bit of normality”. But the idea continues to slip further from view. Two and a half years on from when the family locked down, the highlight of the week remains receiving the shopping, which they have to wipe down, and perhaps seeing the postman. All the while a list of grim milestones grows: Mandy’s diagnosis on his birthday in January 2020; their 36th wedding anniversary spent within closed doors, again, last week; the advent of 18 December, which will mark 1,000 days of shielding.
“It just seems to have robbed us of so much,” says Rob, who hasn’t hugged his 92-year-old mother, who lives down the road, in two years. If his eldest daughter’s family come to stay, a “military operation” requiring weeks of their testing and isolating ensues; when his four-year-old grandson arrives, charging towards them with outstretched arms, they turn their backs, allowing him only to hug their legs, in order to stay safe. “What do you say to a four-year-old? It’s emotionally devastating… Our world has become smaller and smaller and smaller and smaller.”
Lobbying through groups such as Evusheld for the UK and Blood Cancer UK is the only way the “forgotten 500,000” and their families can make their voices heard; efforts required all the more now the drug has become available to a select few. “There is so little attention on this,” Chelsea says, “so the campaign to make it available on the NHS has to continue.” Her father’s absence at what should have been a time of joy has only reinforced how urgent it is that the clinically vulnerable receive the same protection offered to everyone else. Her newborn son bears Michael as his middle name; a reminder of her beloved dad, and to keep up the pressure on behalf of those for whom it could still help.
“We don’t know whether or not Evusheld could have been rolled out in time for my dad,” she says. “But it could definitely save people exactly like him.”
