The mother-of-two carefully shielded until the government said it was safe to see friends and family. She had no idea how her existing conditions could affect her
The feeling of relief was immense as 58-year-old Michele Brown returned home from the vaccine centre. Her husband, Terry, 61, had taken time off from his job as a supervisor at a heavy machinery factory to drive her to her second Covid-19 vaccination at a Gateshead community centre. In the car, Michele told her partner of 40 years that she felt like a weight had been lifted off her shoulders. “She said: ‘At least we’ve got that done,’” Terry remembers. “‘We’ll be OK.’”
It was 28 April 2021. Michele, who had rheumatoid arthritis, an underactive thyroid and diabetes, had spent the last year and a half shielding indoors, on government advice. She was careful. She had a Covid station set up on the breakfast counter: lateral flow tests, bottles of antibacterial gel and disposable face masks. When family came to visit, a mask-wearing Michele would banish them to the furthest corner of the living room. “We couldn’t kiss her,” remembers her daughter, Kim Brown, 41, who lives in Durham. “She would say: ‘You might have the coronies! I don’t want no coronies. You’re not giving me that crap.’”
After her vaccinations, Michele relaxed a tiny bit. She let her family visit more often, and stopped wearing a mask indoors when they did. But she still wasn’t going out much: her rheumatoid arthritis made even brief excursions exhausting. Most of the time, Michele stayed home, chatting to Kim on the phone, watching TV and ordering endless packages online. By the time they arrived she rarely had a clue what was in them. When the news came on, Michele would sigh. “She’d see the numbers go up,” says Kim, “and say: ‘Those poor people. Those poor families.’”
Michele’s family are mystified as to how she caught Covid – unless one of her rare visitors brought it into the house, or maybe it was when she went for a doctor’s appointment. It doesn’t really matter. When Michele became infected, it wrecked her body with brutal efficiency. Unknown to her, her immune system had been suppressed, most likely by the drugs she took to manage her arthritis, so her body had failed to mount a good response to the Covid-19 vaccine. In other words, the vaccine hadn’t worked for her.
“I never heard anything like ‘immunocompromised’,” says Terry, bewildered and distraught. “We never did.”
Michele was born in 1962, in the village of Stannington, Northumberland, the eldest of seven children. Her parents split up when she was an infant. Her father eventually won custody of Michele, but at her request, left her with her grandmother Manuel, who raised her. “She had a difficult childhood,” says Kim. “She swore her kids wouldn’t have the same childhood. And we didn’t. We had everything we wanted. Love. Affection. We didn’t want for anything.”
Terry lived on the same cul-de-sac as Michele and Nana Manuel. It was the sort of street where everyone knew each other. The boys would play football and the girls would watch. Everything took place outdoors. He remembers the first time he noticed her romantically. She was 17, sitting on a wall outside her grandmother’s house. Dressed casually. No makeup, jeans. Terry was coming back from the pub. He noticed how lovely she was becoming. He tried to talk to her, but Manuel came out and shooed him away.
They kept noticing each other in the pub. Eventually, Michele’s friend Brenda pushed them together. “She said: ‘Isn’t it about time you two went on a proper date?’” Terry recalls. “I thought, why would Michele want to date me? I was punching well above my weight.” Their first date was in February 1982; by March, they were a couple. Michele had already given birth to Kim by this point, although Kim’s father was not in the picture. (Michele and Terry had a son, Terence James, in 1988.)
Back then, Michele was outgoing and carefree. She worked the cloakroom in a Newcastle nightclub with her best friend, Sid, but spent most of her time on the dancefloor instead. She dressed like a New Romantic and got her aunt to customise clothes she picked up in Oxfam. Her entire life, she loved music, even wearing headphones as she fell asleep. Her tastes were eclectic – everything from Slipknot to George Michael. “She had such a thing for George Michael,” says Kim. “We’d tell her he was gay, and she’d say: ‘So what! I’ll convert him.’”
Michele worked in a factory, as a cleaner, and at a warehouse. She was clever, but unfulfilled. “If she’d applied herself when she was younger, she could have had a good career,” says Terry. “She was frustrated.” Michele was superb at general knowledge; people would sometimes call her, when they were on pub quizzes, to cheat. She also loved animals. Once, after visiting a zoo, she wrote the management a letter complaining that the cages were too small. In later life, she became obsessed with watching a family of gorillas in a Japanese zoo on YouTube. When Terry came home from work, she’d talk about what the gorillas were up to.
Her health began to fail in her late 20s. She was diagnosed first with leukopenia, meaning that she had a low white blood cell count, and then with rheumatoid arthritis and diabetes. Because Terry was at work throughout the pandemic, as a key worker, Michele was sometimes lonely; she’d call Kim in the middle of the day and stay on the phone for four or five hours at a time. They were more like best friends than mother and daughter. “We’d talk about everything,” says Kim. “Stuff you talk to your friends about. She was dead funny.”
Despite her health issues, Michele was the fierce, uncompromising matriarch of the family. “She was the gaffer,” says Kim. “Everything went through her.” Sometimes she could be blunt. “She had a short temper,” Kim says. “Everything was black and white. You couldn’t explain things to her. If she got a bee in her bonnet about something you’d have to wait until she calmed down.” But Michele had tremendous instincts, especially about people. “I used to ask her: ‘Have you studied black magic?’” says Terry. “She was really good at picking up on people. I’d always say to her: ‘Michele, you should give people a chance.’ And she’d say no, and further down the line she’d usually be proved right. It would fascinate me, how she knew that.”
It is hard for Kim to accept that her mother – a woman with such vitality and life force – is dead. “She had such a strong character,” she says. “Her not being there, I can’t understand.” A few weeks after Michele died, Kim called her mobile. “It was only when the number didn’t connect,” Kim says, “that my heart sank, and I realised.”
In England alone, the Covid-19 vaccine is estimated to have prevented up to 24.1m infections and 126,800 deaths. Two doses of the Pfizer or Oxford/AstraZeneca vaccine are respectively 96% and 92% effective against hospitalisation with the Delta variant. (The effectiveness of the vaccines in protecting against the Omicron variant is not yet known.)
But although the Covid-19 vaccine is safe and highly effective, it cannot work on everyone. For some immunocompromised people, their bodies will not mount a good immune response to the vaccination, meaning they fail to produce the antibodies that should circulate in their blood and recognise the Covid-19 virus if they later become infected. For these people, life in post-lockdown Britain is full of risk and trepidation: they are not protected from Covid-19 by the immunity a vaccination would provide, and nor are they able to avoid the pandemic entirely, given that tens of thousands of new infections are being reported every single day.
People may be immunosuppressed for one of three reasons. First, they have a genetic condition that means they have a primary problem with their immune system. Second, because they are afflicted with a disease that causes their immune system to be underpowered. Third, because they are taking medication to treat an underlying condition that suppresses their immune system. Michele most likely fitted into this final category. The medication she took to manage her arthritis, rituximab, is a known immunosuppressant. (She was taking other medicines to treat mental health problems and diabetes, but none of these are known to have the same effect.)
“When you have rheumatoid arthritis,” explains the rheumatologist Dr Zachary Wallace of Massachusetts general hospital, “your immune system is basically overreacting. It’s recognising things that it shouldn’t think of as a danger, like its own joints, as a danger, and it is attacking them. That’s why we use medicines to suppress that process. But when we do that, the immune system doesn’t work as well at attacking viruses and other infections.” Wallace has been monitoring breakthrough infections in fully vaccinated patients with autoimmune conditions since early 2021. “People who receive rituximab appear to be particularly at risk,” he says. (Roche, which markets rituximab in Europe as MabThera, declined to comment.)
In the UK, a research team led by Prof Iain McInnes of Glasgow University has been examining the efficacy of Covid-19 vaccination in people with compromised immune systems. Initial findings from the Octave study said that about 11% of immunocompromised people failed to generate any antibodies to Covid-19 vaccination, and a further 29% generated a suboptimal antibody response, meaning they failed to produce the same level of antibodies a healthy person would generate in response to vaccination. The study specifically identified rituximab as an immunosupressant.
But Michele had no idea about any of this. She had never heard about immunosuppressant drugs or what impact they could have on Covid-19 vaccination. In late March 2021, the Department of Health and Social Care wrote to her, telling her that shielding would be paused from 1 April due to the fact that virus infection rates were low and nine out of 10 clinically extremely vulnerable people had been vaccinated. Although the letter stated that “no vaccine is 100% effective”, there was no mention made of the fact that immunocompromised people specifically might not be protected by the vaccine, and should consider extra measures to keep themselves safe.
People with suppressed immune systems have been an afterthought. We’re only a small, inconvenient, part of the population
Labour MP Vicky Foxcroft
“There are some people,” says Vicky Foxcroft, the Labour MP for Lewisham Deptford and shadow minister for disabled people, “who were very aware that the vaccines might not work, and very scared. But for a lot of others, the comms from the government has been: everything is fine. Crack on. Do what you were doing.” Foxcroft is herself immunocompromised; like Michele, she has rheumatoid arthritis, and she has been advocating for immunocompromised people throughout the pandemic. “We’ve been an afterthought,” she says. “Probably because we’re only a small part of the population, and we’re inconvenient. But it’s still not acceptable.”
Foxcroft tells me that she often hears from immunocompromised people who are being forced back to work by their employers. Although the administrations in Scotland, Wales and Northern Ireland are currently encouraging employees to work from home where possible, that advice was cancelled in England on 19 July and has yet to be reinstated, despite the spread of the Omicron variant. “I’d like to see the guidance changed for employers,” Foxcroft says, “so that people are able to work from home if necessary.”
To make matter worse, when shielding was paused on 1 April, immunocompromised people and others in vulnerable groups lost the financial support that helped them to remain at home.
Foxcroft herself does not feel safe in the workplace. “I wish people would wear their masks in parliament,” she says. “But I try not to think about it. Because how else would I do my job?”
Michele became ill on 6 July. She fainted on the way to the toilet and Terry had to carry her to bed. He called an ambulance but the wait time was four hours, and when the paramedics finally arrived and checked Michele over they said she was fine.
The following day, Michele was confused. She kept trying to drink from a bottle of water without taking the lid off. Terry called for an ambulance, but they told him it would be a five-hour wait. He tried to drive Michele to the hospital himself, but she refused to get in the car – Michele notoriously hated hospitals and would often escape from them if forcibly admitted.
By 9 July, Michele had stopped making sense. Terry asked her how she felt and she looked through him wordlessly. She couldn’t remember her date of birth. Terry called 111 and asked for an ambulance, and was told that it would take two hours. When the paramedics finally arrived they asked Michele who Terry was. “She just stared at me blankly,” he remembers.
After she was admitted, a doctor from the Queen Elizabeth hospital in Gateshead called Terry. He told him that Michele was seriously ill and asked if doctors should attempt to resuscitate her if her heart or breathing stopped. He also told Terry that Michele had Covid. “I didn’t for one minute think she would die,” says Terry. “She was double vaccinated. As far as I was concerned she was poorly but not seriously ill.” Later, doctors told Terry that they had tested Michele, and found that she didn’t have any antibodies from the vaccine.
I didn’t for one minute think she would die. She was double vaccinated. As far as I was concerned she was poorly but not seriously ill
“Freedom Day” – 19 July – came and went for the Brown family in a fug of grief. Michele was by now in intensive care. Terry wasn’t allowed in, due to the Covid visitor restrictions. He begged them to let him visit. “I said, ‘We’ve had freedom day. Thousands of people at Wembley, cheering the England football team on. And you’re saying I can’t sit with my wife, who is dying?’”
Kim spoke to her mother on the phone, right before they put her on a ventilator. It was a disturbing phone call. Michele told Kim that she felt awful, and she was tired. Kim got the sense that she didn’t want to hang up. She could hear her mother struggling to breathe, and coughing. “I just knew,” Kim says. “I knew what was coming.”
Doctors placed Michele on a ventilator, and dialysis, but it was no use. She died on 29 July. The hospital let the family visit Michele at the end. “It was horrific,” says Kim. “I held her hand, and I was kissing it. But I knew that she was gone.” The family decided to turn off Michele’s ventilator. “She’d been through enough,” says Kim. “She was bruised to bits, from where they took blood from her. We let her slip off.”
The hardest thing for Terry was not being able to see Michele after he left the hospital. “It was a closed coffin because of Covid. That killed me.” He thought he would be able to see his wife again, to say goodbye.
Stories of people who died of breakthrough infections – when a person becomes infected with Covid-19 after being vaccinated – are routine in online anti-vaxx or anti-lockdown communities. “Fully vaccinated man dies of Covid-19”, reads one post shared on an anti-vaxx Facebook group with 31,000 members. “The fully vaccinated die of Covid!” reads another post on a Facebook group with 6,500 members. “Will the mainstream media start recognising the facts of Covid vaccines – they are lethal?”
When the vaccinated former US secretary of state Colin Powell died with Covid-19 last October, anti-vaxxers and vaccine-sceptics heralded his death as proof that the vaccine is ineffective. “Colin Powell died from Covid and he was fully vaccinated,” read one typical post. “So what’s the point of the vaccine?” (Powell had myeloma, a blood cancer that put him at greater risk from the virus.)
“This narrative comes up again and again,” says Pippa Allen-Kinross of the factchecking organisation Full Fact, which has been examining online misinformation throughout the pandemic. “It’s really difficult, because we know the vaccine is not 100% effective. But we do know that it’s really effective, and makes a huge difference.”
In reality, when 4.3 billion people worldwide have received a dose of the Covid vaccine, breakthrough infections are to be expected. In the period 2 January to 2 July 2021, 640 fully vaccinated people died of breakthrough infections in England, out of 51,281 deaths. Of those 640 deaths, 84 (13%) were in immunocompromised people. Unvaccinated people are currently estimated to be 32 times more likely to die of Covid-19 than fully vaccinated people, although experts have warned that there is uncertainty in this headline figure.
“Deaths in vaccinated people have repeatedly been used to back up claims that the vaccines don’t work,” says the statistician Prof David Spiegelhalter of Cambridge University. “But when most vulnerable people have been vaccinated, and the vaccine is less than perfect, then it is inevitable that there will be deaths in vaccinated people, and indeed they have formed the majority of Covid deaths for months. This is basic maths.” He uses the example of seatbelts. “Most car occupants who die in crashes are wearing seatbelts, because nearly everyone is wearing a seat belt and they don’t provide full protection. This does not mean that seatbelts ‘don’t work’ – it just means they reduce risk.”
Part of the problem, says Allen-Kinross, is that government data is so easy to misinterpret. “It’s very easy for people to use this data in a misleading way, to suggest that vaccines don’t work at all.” She uses the example of the Joe Rogan Experience podcast, which is one of the most-listened to podcasts in the US. On 12 October 2021, Rogan hosted American journalist Alex Berenson, who stated – incorrectly – that “people who are vaccinated with two doses are more likely to be infected with Sars-CoV-2 than people who are not vaccinated”.
Full Fact subsequently debunked Berenson’s claims. But given that Rogan’s podcast has an estimated audience of 11 million an episode, these efforts, while a laudable endeavour, are likely to be seen by only a tiny percentage of the people who received the earlier misinformation. “This bad information,” says Allen-Kinross, “really ruins lives.”
At the Brown home in Gateshead, everything is unchanged. Michele’s dressing gown still hangs on the back of the bedroom door. There are bottles of antibacterial gel on the worktop. “The whole house is Michele,” Terry says. “It’s her home. It will always be her home, as long as I’m breathing.” He is racked with guilt. “Why did I let this happen?” he asks. “I didn’t protect her.”
Terry wishes he had known that her vaccinations didn’t work. “I keep thinking,” Terry says, through choked sobs, “that if I’d been aware, we’d have stayed in our bubble. We wouldn’t have allowed anyone to visit. We’d have stuck to the same regime we had at the start. That’s what I’m finding difficult. Because we’d done everything we were supposed to do. The vaccines were to us like a lifeboat in choppy seas.”
There are probably other families in the same situation as Terry and Michele: unaware that the vaccines they rely on to keep them safe may, in fact, be ineffective. “Very often people don’t know how their medicines may affect them,” says Lara Wong of Clinically Vulnerable Families UK. “They don’t realise, which means they may not be taking all the steps they possibly can to protect themselves.”
In September, the Department of Health and Social Care wrote to people on the shielding list, to inform them that shielding had officially ended. It tells the Guardian: “We announced an end to the shielding programme based on the success of the Covid-19 vaccination programme in reducing serious illness and death from Covid-19 and the emergence of proven treatments.”
The letter to shielders advised: “If you are immunosuppressed and have any concerns about what this means for you, then please raise this with your specialist at your next routine appointment.”
“I haven’t seen my specialist for months,” says Foxcroft, pointing out that there is an enormous post-pandemic backlog of non-urgent NHS care. “It’s impossible to get an appointment. And even if you do get advised to shield, there’s no government support available for shielders. So what do they do? Do they lose their job? What’s the score?”
For immunocompromised people who are aware that their vaccines may not work, or work less well – life in a post-unlocking UK is full of anxiety and trepidation. “People say: ‘Why don’t they just hide away?’” says Wong. “But what they don’t realise is that a lot of the people have been. They’ve been at home for the last two years. If infection rates were lower, they could have a life as well. When we protect the most vulnerable, we protect everyone.”
Booster jabs have gone some way to allaying their concerns: the initial findings from the Octave study, published in August 2021, were used to inform the government’s decision to offer at-risk groups, including immunocompromised people, booster vaccines in September. McInnes’s research team is now working on the Octave Duo study, to determine the effectiveness of booster vaccines in immunocompromised people. “The preliminary data,” says McInnes, “shows that a significant proportion of people are benefiting from a third inoculation, and we think it’s a good idea to further roll out this programme.” Last week, in response to Omicron, the government announced plans to offer severely immunosuppressed people a fourth dose of the vaccine as a booster.
But Wong points out that many immunocompromised people will have children attending school. Until the advent of the Omicron variant in late November, the government did not ask pupils to wear masks in English schools. Even now, it is only strongly advised in communal areas, and the bubble system has been scrapped. Some parents have been threatened with prosecution for pulling their children out of school when case numbers are high. This month, Clinically Vulnerable Families UK wrote to the education secretary, Nadhim Zahawi, urging him to permit remote education for the children of clinically vulnerable households, rather than mandate such children return to in-school education. “There are light-touch measures we could put into place that would make things safer for everyone,” Wong says. “Hepa air filters in school, to clean the air; mask wearing to be strongly encouraged.”
Some immunocompromised people have called for antibody testing to be routinely offered to those who request it, to see if the vaccine has been effective. “The problem is,” says Wallace, “these tests are difficult to interpret, because we don’t have all the information about what an adequate level of antibodies is yet.” Monoclonal antibody treatments, which are laboratory-made antibodies to help a person fight infection, may also be effective in treating people with low immunity. Wallace also urges his immunocompromised patients to “be cautious, wear masks in public, and avoid densely populated places that don’t have good ventilation. Only socialise with people they know are vaccinated and feeling well.”
These immunocompromised people seem doomed to continue to live a half-life for the foreseeable future. And with the Omicron variant spreading throughout the UK, it seems likely that the wider public will be forced into the anxious wariness that has become the norm for immunocompromised people for nearly two years. They watch, and they wait, while the families of the 145,000 people who have died with Covid-19 in the UK mourn. And they pray they won’t be next.