Thousands of migraine patients say they are being denied access to life-changing drugs given the green light on the NHS more than a year ago, The Mail on Sunday can reveal.
NHS bosses have told patients whose lives are being wrecked by agonisingly severe headaches that the groundbreaking medicines – known as CGRP inhibitors – are not yet available on the health service.
Yet the drugs were sanctioned last March by the UK health watchdog, the National Institute for Health and Care Excellence (NICE). It ruled they were not just clinically effective but also value for money.
Some patients are now so desperate they are paying for the drugs privately, at up to £350 a month, according to the Migraine Trust charity.
It says ‘several hundred patients a month’ have been in touch over the past year looking for advice, after they were unable to access CGRP inhibitors in their local area.
Una Farrell, communications manager at the charity said: ‘Most people can’t afford to pay privately but are scraping together what they can because the benefit is so great.’
Thousands of migraine patients say they are being denied access to life-changing drugs given the green light on the NHS more than a year ago, The Mail on Sunday can reveal
On Friday, less than 24 hours after NHS bosses in Sunderland were confronted by this newspaper with claims that patients in the area had been denied treatment, they announced that two of the three new migraine-busting drugs would be prescribed from next month.
In a statement, the NHS North of England Commissioning Support Unit said: ‘We are planning for them to be prescribed to patients who meet their criteria from July.’
About six million people in the UK suffer with migraine. Most rely on painkillers to dull the agony, or prescription drugs – called triptans – which can shorten the length of attacks.
For years, there was nothing that could prevent migraines or reduce their frequency. Then, in March 2020, the NHS gave the green light to CGRP inhibitors as the first new treatment for migraine patients in more than 20 years.
The revolutionary drugs block a protein called calcitonin gene-related peptide (CGRP), responsible for the pain and nausea associated with migraines. By blocking its production, the drugs slash the frequency and severity of attacks.
With one self-administered injection a month, patients can almost halve the numbers of days they suffer from migraines, and reduce their severity.
There are three anti-CGRP drugs currently approved for use in the UK – erenumab, fremanezumab and galcanezumab. But qualifying for access on the NHS is not easy. Patients must have failed on three previous medications before and they also have to experience at least 15 migraine days a month.
And even if patients fit the criteria, many are told that the drugs aren’t available to them. ‘This is a drug which could potentially change my life, and no one will tell me why I can’t have it,’ said Tiffany Snowden, 28, an archaeologist from Harrogate.
She suffers blinding headaches up to 20 times a month, sometimes lasting 48 hours at a time.
Prescription painkillers and ice packs have limited impact on a condition that has plagued Tiffany since she was 12. ‘It feels like someone is kneading dough, only the dough is my brain,’ she says.
Prescription painkillers and ice packs have limited impact on a condition that has plagued Tiffany Snowden (pictured) since she was 12
When Tiffany approached her neurologist in 2021 about accessing the drugs, she was told she would need to first try the epilepsy drug topiramate.
Only if she failed to see an improvement would she then be considered for the new treatment. But topiramate is notorious for its side effects, which include confusion and hallucinations.
Tiffany insists the drug, which she is still taking seven months later, has failed to reduce her migraines. But there have been side effects. ‘I have constant brain fog,’ she says. ‘I struggle to talk. Sometimes my husband has to translate for me because I forget words.’
It’s a fact
Migraine affects one in seven Britons – more people than diabetes, asthma and epilepsy combined.
She was due to see a neurologist to discuss CGRP treatment in March but the hospital cancelled the appointment and instead put her on a waiting list for another slot. Last week Tiffany filed a complaint with her health trust about what she calls an unacceptable delay.
The Mail on Sunday has also heard from other desperate migraine sufferers from different parts of the country, all with similar stories to tell.
Patients in Sunderland demanding the treatment say they have been trying for months to get NHS bosses to give them the drugs they need.
Ria Bhola, a specialist migraine nurse who works with the Migraine Trust, believes the problem stems from disruption caused by the Covid-19 pandemic. ‘When the pandemic hit, many headache and migraine specialist clinics were paused or went virtual. Now clinics are reopening and trying to get through the backlog of patients.
‘Clinicians are keen to use these drugs, but they don’t have the capacity right now to bring in new treatments, because of the training and administrative burden that brings.’
She says migraines are viewed as a low priority by hospitals scrambling to clear waiting lists.
‘Ultimately this treatment will be a gain for hospitals, because more patients will be self-managing their condition, meaning they spend less time in hospital. But trusts need to take the initial steps in setting up the treatment.
‘That won’t happen until hospital management put more funds towards migraine treatment.’