Father-of-three Mark Oakley now now been shielding from coronavirus for more than 900 days.
The 52-year-old, from Shoreham by Sea, takes strong drugs that suppress his immune system to treat an illness called pulmonary sarcoidosis, which causes swollen tissue in the body and frequently impacts the lungs.
His two younger daughters, who are at college and school, have to be “very cautious” and limit how much time they spend socialising with friends. He hasn’t hugged his eldest daughter, who lives away from home, nor his 91-year-old mother, for over two-and-a-half years.
It’s why Oakley has joined a campaign group calling for a preventative Covid drug, named Evusheld, to be rolled out across the UK for the most vulnerable.
“The thing I miss most about life? Just being able to walk out the front door without any fear. Without having to constantly look over my shoulder or forward-think everything to do. I just miss the freedom to be able to choose and live normally,” he says.
“If I got Evusheld, the first thing I would do would be getting in a car and driving to my daughter to go and cuddle her. Then drive to my mother and cuddle her. Then I’d take my family to a restaurant. It’s not too much to ask really.”
Evusheld, made by AstraZeneca, is a preventative treatment for Covid designed to protect high-risk people who aren’t sufficiently protected by the standard vaccines alone.
The treatment, which is administered via two injections, has been approved for UK use since March 17 2022 and is already available in 32 other countries. However, the UK government put the brakes on a rollout, and patients can not currently access the jabs privately or via the NHS.
Minsters say there is “insufficient data” about the drug’s effectiveness in relation to different Covid variants, such as Omicron. They are awaiting a further appraisal from the National Institute for Health and Care Excellence (NICE), to see if the drug is “clinically and cost effective”.
But campaigners say time is running out to protect the most vulnerable ahead of winter.
Professor Martin Eve, a university lecturer at Birkbeck, University of London, is among the volunteers co-ordinating the Evusheld for the UK campaign.
The 36-year-old takes high doses of steroids and with immunosuppressive drugs to treat rheumatoid arthritis and vasculitis and says Evusheld would improve his own quality of life. He believes the drug should be made available to protect the most vulnerable now.
“32 other countries have bought Evusheld, having seen real-world studies showing 80-90% efficacy at protecting those who don’t respond to vaccines. Yet the UK looked at the same data and decided to go completely against international clinical consensus, demanding new trial after new trial for every new variant, as though we are just guinea pigs,” he tells HuffPost UK.
“It is callous that our patients remain shielding after almost 1,000 days when an effective treatment exists. They are suicidal, unprotected, and feel uncared for. The government needs to get over its obsession with randomised control testing of Evusheld against every last new variant and move now to protect this group.”
The patient-led campaign group now has the backing of larger charities including Kidney Care UK and the MS Society. Marcus*, who has leukaemia, is hoping the government will take notice.
Marcus lived in the same house but separately from his wife and son for the first two years of the pandemic, meeting in the evening to eat outside – hiding under umbrellas if it was raining.
But when the loneliness became too much, they reunited. However, his wife has given up a job as a teacher in order to protect him.
“With Evusheld, I hope that I could start to live like everyone else again,” he says. “That I could work, that I could use public transport, I could go into shops, I could go to galleries and museums again, and that I could see family and friends again.”
Lesley*, who has multiple conditions which mean her body can not form antibodies – making the vaccines redundant – is also hopeful the new drug could give her her life back. Before March 2020 she had an active social life and loved going to classes at the gym. Now, she’s stuck indoors.
“I’m currently isolated with my family, and they gave up their lives for me. But this year mentally it was taking its toll so they’ve been doing a bit more but safely,” says Lesley, who is 46 and from London.
“I do miss my extended family though, and all the family gatherings that we once had. Evusheld would quite simply give me my quality of life back. It won’t be a silver bullet, but it will put us on more of an even keel to the rest of the country and help us to live with Covid Like everybody else.”
HuffPost UK contacted the Department of Health and Social Care about the Evusheld for the UK campaign and asked if there were plans to make the drug widely available to clinically vulnerable people.
A spokesperson said that following a “robust review of the available data... there is currently insufficient data on the duration of protection offered by Evusheld in relation to the Omicron variant and in line with that advice, the government will not be procuring doses at this time”.
“We are keeping the evidence under close review and NICE have begun their appraisal of Evusheld. If they consider the treatment to be clinically and cost effective, it will be made available on the NHS in the usual way,” they added.
“To increase the evidence base upon which Evusheld can be assessed, we are urgently exploring commissioning a clinical trial. We are determined to support the most vulnerable as we live with Covid. Immunocompromised patients are a priority for other treatments, free Covid tests and vaccination.”
*Some interviewees chose not to share their surnames.