Hundreds of thousands of people vulnerable to Covid face being forced to choose between being “prisoners” in their own homes, paying thousands of pounds for private treatment, or risking serious illness and possible death as NHS funding is denied for key Covid treatments.
Fears for about half a million people with compromised immune systems were heightened this fortnight by decisions not to recommend three potential Covid treatments for NHS funding.
Many are unable to mount a response to Covid vaccines, leaving them with little or no antibodies against Covid and at risk of severe disease and hospitalisation if they are not given effective treatment.
Campaigners and immunology experts highlighting their plight say they have been left distressed and angry and facing a fourth year of shielding.
Professor Alex Richter, director of the Clinical Immunology Service at the University of Birmingham, told i that there was no plan for people with vulnerable immune systems.
“Many of them haven’t responded to vaccination, and so their risk remains fairly similar to the start of the pandemic and what we’re losing is even options to try,” she said.
On Tuesday, the National Institute for Health and Care Excellence (Nice) issued draft final guidance that recommended the drug Remdesivir should not be funded for the NHS because it is not deemed cost effective, although evidence had shown it was effective against mild Covid. Nice said it was “unlikely” to be effective for severe Covid.
Another antiviral, Molnupiravir, is also no longer recommended by Nice based on clinical evidence that suggested it had limited effectiveness.
And last week Nice decided not to recommend the Evusheld treatment for preventing Covid in immunocompromised adults because there was not enough evidence of its effectiveness against current variants and those likely to be circulating in the next six months.
But Prof Richter is concerned about the impact of decisions from Nice that are based on a “general” picture.
“Our patients are usually exceptional and we have to be considering they have will have very individual needs,” she said. “If we don’t have access to a combination of antivirals and monoclonal drugs, our hands are very much tied.”
Evusheld had been authorised for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) in March 2022 after data showed it reduced the risk of developing symptomatic Covid by 77 per cent. But unlike Covid vaccines, it did not undergo an expedited process to make it available via the NHS.
Professor Richter said: “We’ve got a clunky procedure that’s taken months and months and it just so happens that at this moment in time, the variants circulating are unlikely to be recognised by Evusheld. If they’d launched it when the MHRA announced it, we would have potentially saved a significant number of lives last year.”
“This is a very dynamic situation and we need a much more agile way of labelling medications for immune vulnerable.”
Nikola Brigden, of campaign group Evusheld for the UK, wants the Government to outline a plan to protect the immunocompromised.
After five Covid vaccines, Ms Brigden’s husband Scott, who has mantle cell lymphoma and is taking medication that suppresses his immune system, had still not developed enough antibody protection against Covid.
So in November they made the decision to pay privately for Evusheld at a cost of £2,300. Patients are advised that the dose is effective for six months and should then be topped up.
Ms Brigden, who is campaigning for the medicine to be made available on the NHS, said members of the Evusheld for the UK community had had to take out payday loans to cover the cost of the treatment.
“Some people are dipping into their savings,” she said. “Some people have had one dose but couldn’t afford the second dose.
“People are so desperate that a lot are going to be shielding, coming into their fourth year in March with no contact with families. Some people have lost their businesses because they are unable to work.”
Professor Richter said patients’ anxiety about their vulnerability to Covid had strained relationships, seen parents keep children off school, and virtually cease social interactions.
“It’s difficult for non-specialists to have those discussions with patients by saying, ‘you’ll probably be okay, but we don’t know that’,” she said. “That’s increasingly difficult if there are less treatment options.”
People with myeloma, a form of blood cancer, are among those who didn’t respond well to Covid vaccines and are at a higher risk of serious illness.
Retired secondary school teacher John Gibson, 60, from Long Eaton, Derbyshire, thought long and hard about obtaining Evusheld privately before deciding to pay £1,500 for one dose in December.
“The expectation is that when I get to June this year, obviously I need the booster,” he said. “It will probably go up [in price] considerably. So I think the general picture is that obviously most people won’t be able to afford those figures if they’re financially strapped.
“The biggest fear I have, as I know a lot of ‘the forgotten few’ do, is the fear of infection. We live in danger of catching Covid or we fear the effects of Covid. You try to avoid that… and the best way to do that is to shield, to effectively shut yourself away.
“You essentially are a prisoner in your own house… You pull the drawbridge up and you keep everybody at arm’s length.
“The general mood is we’re very angry, there’s no other word for it, except to be very angry about the way the whole of this process and the whole way that Evusheld’s been dealt with.
“For me, it’s not hyperbole to say, [it is] a public health scandal. I think you’re looking at a situation where – how could half a million people simply be left completely unprotected by a government that does have the capacity to protect its citizens?
“What the Government has got to ensure is that their procedures are not so slow that this next generation of prophylactic drugs is wasted.”
Shelagh McKinlay, director of research and advocacy at Myeloma UK, said there needed to be a fast-track system for assessing Covid treatments that properly listened to patients and considered unmet needs.
“This process has taken such a long time, been so drawn out, there’s been such a lot of uncertainty, [and] that has added a lot, I think, to the emotional difficulties and distress that people are experiencing,” she said.
Nice said it is developing a new review process to update recommendations on the cost-effectiveness of Covid-19 treatments so they can be made available more quickly to patients if they show promise against new variants and are found to be cost-effective. But the public consultation on proposals for the new rapid update process will not launch until 3 April, leaving vulnerable patients facing further delays.
Fiona Loud, policy director of Kidney Care UK, said patients were heartbroken and angry at waiting for so many months.
Ms Loud said: “Kidney Care UK believes it is a disgrace that the only way in which this drug has been available is for patients to pay for it themselves. The protracted process over the last year is just not suitable for people who remain at risk from Covid-19, so we welcome the rapid assessment approach which Nice has announced.”
Nice said it knows the decision is disappointing for the many thousands of people who do not get the same protection from vaccination against Covid-19 as most people.
A spokesperson added: “The rapidly evolving nature of Covid-19 means we need to have a way of establishing the cost effectiveness of existing medicines against current variants in an agile way. That is why we are developing a process to monitor real world data and re-evaluate the medicines as needed against that data in a faster way than we currently do for other drugs.”
A Department of Health and Social Care spokesperson said: “We are determined to support the most vulnerable as we live with Covid and immunocompromised patients are a priority for other treatments, free Covid tests and vaccination.
“The current and emerging evidence continues to suggest Covid treatments like Evusheld may be less effective at treating the Covid variants currently dominant in the UK, so we will not be procuring doses at this time.
“As we live with the virus, it is vital we move from the extraordinary pandemic arrangements back to using our usual processes. This will ensure clinical and cost-effectiveness of medicines and provide the best care for patients.”