London (CNN) – Deepti Gurdasani has spent the past two years debunking Covid-19 myths and misinformation on TV and online. Her work as a clinical epidemiologist means she’s well-placed to talk about coronavirus. But she also has a deeply personal understanding of the pandemic’s dangers.
Gurdasani is one of 3.7 million people in England living with underlying diseases or pre-existing chronic health conditions who were told by authorities to “shield” at home and minimize all face-to-face contact on March 23 2020, as the UK went into its first lockdown at the start of the pandemic.
She says she has not been into a shop, restaurant or movie theater — or any other indoor space, aside from her own home — in the two years since, because she fears catching the virus could be fatal.
In order to protect Gurdasani, who is immunosuppressed due to the medication she takes for inflammatory bowel disease, her family has also had to make sacrifices.
“I am a chronically ill, disabled mom who brings her daughter home for lunch every day from school, so she doesn’t breathe the same air as 100 other people,” she told CNN. “I have had to take my daughter out of her gym, ballet and swimming classes.”
Some would view this as excessive. For Gurdasani, it is the only way to ensure that her 6-year-old daughter grows up with both parents: “It’s not fair for her, but I have to weigh that up against the risk of her growing up without a mom.”
Just weeks after England lifted all legal coronavirus restrictions, Covid rates are rising again. New Covid-19 cases were up 20.4% in the UK last week, compared with the week before, while hospitalizations were up 21.7% over the same period.
And Gurdasani and others like her are seeing their worlds shrink once more because, for them, Covid-19 remains dangerous. Two years on from the UK’s first lockdown, many vulnerable people fear they face some form of permanent isolation as governments and wider society move on without them.
‘Living with Covid’
Even before the pandemic, immunocompromised and vulnerable people had a higher risk of infection from circulating viruses.
Covid-19 poses a more significant threat. It is deadlier than regular respiratory viruses, it can spread at a higher rate, and infections can be asymptomatic — meaning you can’t always tell if someone is unwell.
To halt the spread of the virus, the British government introduced a bundle of anti-Covid measures including a free mass testing program, isolation rules for those infected and shielding to protect the most vulnerable.
But following the vaccine and booster rollout, all remaining legal Covid-19 restrictions were scrapped last month as part of the UK government’s “living with Covid plan.”
“Restrictions pose a heavy toll on our economy, our society, our mental well-being and the life chances of our children. And we do not need to pay that cost any longer,” Prime Minister Boris Johnson told Parliament at the end of February.
Those at risk of serious illness who are diagnosed with Covid-19 will be offered antiviral treatments, and clinically vulnerable people — “those aged 75 and over, older care home residents and those over 12 who are immunosuppressed” — will be offered a fourth dose of the vaccine, Johnson said.
Antivirals offer an extra layer of reassurance for high-risk groups. One such treatment, Paxlovid, has been shown in clinical trials to reduce the risk of hospitalization or death for vulnerable patients by 88%, UK Health Secretary Sajid Javid said in January.
But the experts CNN spoke to agree that high-risk groups should be prevented from getting Covid-19 in the first place.
“Removing most measures that prevent infection and only focusing on treatments that reduce severity goes against everything we know about what works best for public health. Prevention is always better than cure,” said Gurdasani.
For those living with suppressed immune systems, the prospect of “living with Covid” is a scary one, since vaccines are not as effective at fending off a severe bout of the virus for them.
This is because people who are immunocompromised are less able to produce disease-fighting antibodies as their immune systems have been weakened by underlying conditions or certain immunosuppressive drugs. This prevents them from developing lasting defenses against Covid-19.
“The government keeps saying we need to live with Covid, but we need a society that’s fair for everybody, which means community infection needs to be brought down,” said Gurdasani. “Until then, vulnerable people won’t have a normal life. We aren’t a small minority.”
About 800,000 vulnerable people in England were still shielding late last year despite diminishing governmental support, according to the latest available data published by the UK’s Office for National Statistics in November.
And the UK’s clinically vulnerable people are not alone: About 22% of the global population has at least one underlying condition that leaves them at risk of severe Covid-19, according to a study published in the Lancet in 2020.
In the United States, the Centers for Disease Control and Prevention (CDC) estimates that roughly 7 million American adults are immunocompromised. As case numbers and hospitalizations drop, prompting states to remove restrictions, vulnerable people in the US have been left to weigh their own risks.
While the UK did provide clear guidance and safety measures for high-risk groups at the start of the pandemic, advocates for Britain’s clinically vulnerable community are concerned at the end of Covid restrictions and rising cases.
“They say that there is no longer a need for people to shield anymore, but for some people the virus is still a big problem,” Thomas Shakespeare, a professor of disability research at the London School of Hygiene and Tropical Medicine, told CNN.
“Getting rid of masks and distancing will make people even more isolated than they otherwise would be,” said Shakespeare. “It is a huge mistake.”
Jo Nove, acting CEO at blood cancer charity Myeloma UK, warned that clinically vulnerable people will be “forced to lock down with all the additional anxieties and pressures that brings,” even as the world opens up.
“They simply have no way of knowing the level of risk they face as they go about their day-to-day lives. Returning to a place of work, doing the food shop, or dropping the children off at school all mean additional exposure with potentially serious consequences,” Nove said in a statement.
‘No end in sight’
Karl Knights says his career was just starting to take off in 2020 when the Covid-19 pandemic brought it to a screeching halt.
“For the first time, I wasn’t living from pay packet to pay packet,” he told CNN. “I’m a freelance writer, and all my work vanished overnight, and very little of it has returned.”
In light of the removal of all Covid restrictions, disability rights advocate Knights, 27, said he has begun to wonder if he’ll “have a life at all” and has resigned himself to spending the rest of his 20s in near-total isolation.
Karl Knights says he has resigned himself to spending the rest of his 20s in near-total isolation.
Knights has autism, cerebral palsy — a group of neurological disorders that impact movement — and asthma. He has been shielding in Suffolk, eastern England, for more than two years, only leaving his home to attend hospital appointments.
“Lockdown never ended for disabled people like me, and with restrictions being dropped entirely, it seems that no end is in sight,” he said, adding that the end of Covid isolation rules means “disabled people’s lives are going to get even more restricted than they already are.”
Most devastating of all, said Knights, has been the realization that many in government and society as a whole see vulnerable people as a hindrance to a return to normal life.
“Friends would say things like, ‘We can’t lock down forever for your sake,'” he said. “It pains me that some only care about other people’s lives as long as they aren’t inconvenienced.”
The situation is similarly bleak for disabled and immunocompromised people across Europe — where pandemic restrictions, like wearing masks in public, social distancing and work from home plans, are gradually being dropped.
In the Netherlands, most Covid restrictions were removed on February 25. Dutch hospitality venues, including bars, restaurants and theaters, are now able to run at full capacity, and Covid passes have been scrapped.
However, as of last week, daily cases have been rising in more than half of the countries in the European Union. They’ve jumped 48% in the Netherlands and 20% in Germany, according to data from Johns Hopkins University.
Laura van Loo, from Leeuwarden, north of Amsterdam, has Ehlers-Danlos syndrome, a connective tissue disorder, and chronic fatigue syndrome.
Van Loo, 30, who is gender nonbinary, said they had to quit their job as a cleaner during the pandemic because of their condition. They said they have only left the house for doctors’ appointments since the pandemic started.
“I am scared for the future,” van Loo told CNN. “With the restrictions easing, people believe that Covid is now as mild as the flu and that it is OK to do everything again. But it is still dangerous for high-risk groups.”
Van Loo does not see any end to their isolation. “Everyone thinks the vaccinations are enough to protect us even though we [the vulnerable] know this isn’t the case,” they said.
Long Covid
Disability researcher Shakespeare warned that long Covid — symptoms of the virus that last for weeks or months after the initial infection — is “creating a new batch of disabled people. This is very dangerous.”
Last year, a large study revealed that 1 in 3 Covid-19 survivors have symptoms three to six months after getting infected, with breathing problems, abdominal symptoms such as pain, change of bowel habit and diarrhea, fatigue, pain, anxiety and depression among the most common issues reported.
In the face of these odds, charities and public health experts are calling for more to be done to protect immunocompromised people and other high-risk groups from Covid-19.
A group of 18 British charities, including the Multiple Sclerosis Society and Macmillan Cancer Support, have been urging the government to address the concerns of people at highest risk, to ensure timely access to Covid-19 treatments and free lateral flow tests, and offer improved employment protection and a clear plan for the use of preventive Covid-19 treatments.
Experts CNN spoke to agree that lockdowns — which stunted economies and have been linked to heightened levels of depression and anxiety — should be off the table.
But they argue that measures such as greater work flexibility, continued testing, improved ventilation and mask mandates should be in place going forward.
And Gurdasani wants to see better messaging so the public understands what it can do to help keep vulnerable people safe.
“I don’t think that indefinite shielding is a solution,” she said. “We need noninvasive public health measures that are directed at making things safe for vulnerable people.
“Clinically vulnerable people shouldn’t have to choose between their work, their health and their lives,” she said.
Above all, those who remain at risk from Covid-19 want others to know that sticking to the now-abandoned rules is not a choice they want to make but one they feel they have to.
“People … push this rhetoric that I want everyone to stay locked down forever, that I want to control people, [but] I desperately want to get out of my house,” said Gurdasani.
“I find it very difficult, mentally, constantly dealing with people who tell me that my life as a disabled person is disposable.”
