People who are clinically extremely vulnerable (CEV) with Covid are struggling to access treatments such as antiviral drugs in time, charities, patients and doctors have warned during the summer surge of the virus.
People with certain health conditions or who meet other specific criteria are eligible for drugs that can help the body fight the virus that causes Covid. These include people who are 85 or older or people who have Down syndrome, an organ transplant, a weakened immune system, lung cancer or sickle cell disease.
Before June 2023, CEV patients in England who tested positive for Covid were contacted directly by their local Covid Medicines Delivery Unit (CMDU). But responsibility for prescribing drugs was delegated to the 42 NHS Integrated Care Boards (ICBs) in England, with experts warning this has led to a postcode lottery when it comes to accessing treatment.
Concerns have been raised after patients reported having to repeatedly call to access medication, often while seriously ill, despite the requirement that medication must be administered within five days of the onset of symptoms. The reports have also raised concerns because patients reported having to argue for their eligibility, even though they meet current guidelines.
“The British Liver Trust has received calls from people with liver disease who are struggling to access antiviral treatment, expressing frustration and anxiety,” said Vanessa Hebditch, director of communications and policy at the charity.
“People with advanced liver disease are extremely vulnerable if they catch Covid, and we need to ensure that anyone who is vulnerable – including those who are immunocompromised or have had a transplant – can get treatment as quickly as possible. This is particularly important in light of information about new strains of Covid.”
Fiona Loud, policy director at Kidney Care UK, said: “We are still seeing people in the kidney community struggling to access lateral flow testing and Covid treatments due to the lack of clarity around how CEV people should do this. There has been no recent communication from government, which has led us at the charity to guidelines for patients.”
“For our community, it feels like we are out of sight and out of mind and that the pandemic is not over for those with compromised immune systems,” she said.
Aaron Foulds, from Keighley in West Yorkshire, has multiple health conditions and was previously given antiviral medication in hospital when he first contracted Covid. He also confirmed with his asthma advisor that he would be entitled to antiviral medication under the latest guidance from the National Institute for Health and Care Excellence (Nice) if he were to contract the virus again.
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But after testing positive for Covid earlier this month, he faced a number of obstacles in getting treatment.
Foulds initially called NHS 111 on the afternoon he tested positive and was told a clinician would call him back to assess his eligibility. The clinician called and confirmed he was eligible for antivirals. Foulds was then told an ambulance would be attending him to carry out health checks and that he would receive a further call regarding a prescription.
“I thought great, regular,” Foulds said. “How wrong I was.”
Half an hour later, a health professional called and said he could not confirm Foulds’ fitness and did not understand why an ambulance had been called. Instead, Foulds was told he would receive a call from a GP. Three hours later, after receiving no call, Foulds called 111 again and was told the ambulance had been cancelled and a GP would call.
At around 11pm, a GP called, but was told that the CMDU would have to call the next day to confirm Foulds’ eligibility as they were now closed. When the CMDU called at 10am the next day, he was asked to explain again why he thought he was eligible for antivirals, before being told to speak to another doctor.
“I said, ‘I’ve talked to God knows how many people, and you call and I still have to talk to someone?’” Foulds said.
Eventually, a doctor called. “He seemed to be mostly concerned with finding a reason not to give me medication,” Foulds said.
“At that point I was completely exhausted. I mean, I was really sick at that point.”
Foulds eventually received a prescription, but it wasn’t until 8 p.m. the day after his initial call that the antivirals finally arrived.
Azeem Majeed, professor of primary care and public health at Imperial College London and a GP, said the transfer of responsibility for prescribing antiviral drugs had left patients left to figure out how to get treatment themselves.
“This decentralisation could lead to uneven treatment uptake and greater health inequalities, as people from poorer backgrounds, with lower levels of education or limited English language skills, will find it harder to navigate the new system and are therefore less likely to receive treatment,” he said.
“Covid is now seen as a much lower priority for the NHS compared to a few years ago,” he added. “Much of the infrastructure that was in place during the pandemic has been dismantled and NHS leaders are focusing on other priorities.”
The Department of Health and Social Care said it was up to local ICBs to comment on individual cases.