'Forgotten' vulnerable patients being missed off eligibility lists for drugs to fight COVID
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People at high risk of getting seriously ill from Covid-19 have struggled to access antiviral and antibody treatments that could save their lives at weekends, i has learned.
Eligible patients have had difficulties getting hold of the medication that can prevent them from experiencing serious Covid disease and requiring hospital treatment after testing positive during or shortly before a weekend.
It is important that the treatments are administered as soon as possible after a positive Covid result to be effective and there are fears patients will struggle over the Easter Bank Holiday.
Yvette, from Cirencester in Gloucestershire, contacted 111 on behalf of her 19-year-old son, a kidney transplant recipient, when he tested positive for Covid via a lateral flow test on Wednesday 23 March.
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She was told by the Covid Medicine Delivery Unit (CMDU) that a positive PCR test was required to be considered for antiviral treatment.
But the NHS guidance does not state a PCR test is necessary.
“By Friday nobody had rung us,” Yvette said. “I rang them up again, it took me two hours to get through … I eventually got through and they said, ‘yes, you are on the list’ to be called.”
She said she never heard back over the course of that weekend and was told that there was only one doctor available to make calls to patients that need antivirals on the Saturday and no-one available at all on the Sunday.
Her son eventually got an appointment for intravenous antiviral treatment on Wednesday 30 March, seven days after the onset of his symptoms.
“You’re only really good to go if you test positive on a Sunday or Monday,” Yvette said.
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She added: “If [my son] had been more poorly, I would have been in a right old state.”
Teresa, 37, from Manchester, who only wanted to give her first name, told i she was deemed eligible because she has multiple sclerosis, one of the conditions highlighted on the NHS guidance webpage.
“Multiple sclerosis is on that list. Having tested positive on lateral flow I phoned NHS 111 only to be told that I wasn’t eligible. I quoted the NHS website at them they said, ‘you’ve only had a lateral flow test, you’ve got to have a PCR’. On the Saturday, I went to get a PCR test, got the results back Sunday morning – positive, no surprise.
“I phoned NHS 111 back. Reluctantly they said they would get a clinician to call me back.
“I waited all day and evening and received no call back. On Monday I contacted my GP surgery and explained everything. The GP said, ‘you’re not eligible for antivirals with MS’. I sent the link to the NHS website. A couple of hours later she rang back and said, ‘I will refer you to the CMDU’.
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“By this time it was late afternoon on a Monday. I was really rough that day. I was getting progressively worse.
“It was Wednesday night before someone from the CMDU rings back. They said, ‘you’re over the worst of it now, we won’t give you the antivirals’.
“I thought it would be straightforward. It was an absolute total battle. I was terrified.”
Only individuals deemed particularly vulnerable to serious Covid illness are eligible for coronavirus treatments, including nirmatrelvir and ritonavir (Paxlovid), sotrovimab, remdesivir and molnupiravir, on the NHS.
They include patients with certain types of cancer, multiple sclerosis and organ transplant recipients, according to the guidance on the NHS website.
One myeloma patient in London who had received a letter from the NHS outlining her eligibility for antivirals contacted blood cancer charity Myeloma UK after she experienced difficulties obtaining treatment during a weekend. When the 24-hour window after her positive PCR result expired and she had not been contacted by the NHS, she called 111.
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The patient, who wanted to remain anonymous, later received an out-of-hours call from a GP who told her he had not yet managed to ever get patients access to the drugs.
The woman was forced to wait until Monday when she called her GP surgery. They told her they did not know what to do and contacted the local hospital who put her in touch with a consultant.
Four days after her positive PCR result, her access to antivirals was granted.
The patient said the experience left her “very frustrated” and if she had not had the strength to fight, she would not have received the treatment.
‘No one knows how to get their hands on them’
Epidemiologist Deepti Gurdasani said she knew a number of patients who had applied to the University of Oxford’s Panoramic trial for speedier access to antivirals.
Antivirals are not guaranteed through this route and the trial is closed to new registrations over the Easter Bank Holiday weekend, reducing options for patients who fall ill over this period.
Jo Nove, acting chief executive at Myeloma UK, said: “We’re hearing from myeloma patients who have been denied access to antivirals either because they’ve been wrongly told they’re not eligible for treatment, that their symptoms aren’t serious enough or simply because no one knows how to get their hands on them in the first place, more than four months after the antivirals were rolled out.
“The issue of access seems to get worse at the weekend with many left with no choice but to wait until the following Monday. This delay means that some of them end up exceeding the five-day cut-off point to receive antivirals. With a four-day Bank Holiday, we’re concerned many patients will miss out on much-needed treatment if they catch Covid-19 over the break.”
An NHS spokesperson said: “Covid Medicine Delivery Units have to provide a seven-day-a-week service, which includes covering the bank holidays and weekends, allowing eligible patients to be treated in line with government guidance.
“More than 34,000 patients have already benefitted from these life-saving treatments, and despite high numbers of covid patients in hospitals and exceptionally busy emergency services, we continue to encourage anyone who needs care to come forward – the NHS is here for you.”
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