Thousands of migraineurs say they will be denied access to life-changing drugs after the NHS gave the go-ahead more than a year ago, The Mail on Sunday may reveal.
NHS chiefs have told patients whose lives are ruined by excruciating headaches that the breakthrough drugs known as CGRP inhibitors are not yet available in the healthcare sector.
Still, the drugs were sanctioned last March by the UK health authority, the National Institute for Health and Care Excellence (NICE). It found that they were not only clinically effective, but also great value for money.
Some patients are now so desperate that they are paying for the medication privately, at up to £ 350 a month, according to the Migraine Trust charity.
It is said that over the past year “several hundred patients a month” came in to seek advice after they did not have access to CGRP inhibitors in their area.
Una Farrell, communications manager at the charity, said, “Most people can’t afford to pay privately, but they scrape together what they can because the benefits are so great.”
Thousands of migraineurs say they were denied access to life-changing drugs when the NHS was given the go-ahead more than a year ago, The Mail on Sunday may reveal
On Friday, less than 24 hours after NHS chiefs in Sunderland were faced with claims by that newspaper that patients in the area had been denied treatment, they announced that two of the three new migraine drugs would be prescribed starting next month.
In a statement, the NHS North of England’s Commissioning Support Unit said, “We plan to start prescribing them to patients who meet their criteria by July.”
About six million people in the UK suffer from migraines. Most rely on pain relievers to ease the agony or prescription drugs – called triptans – which can shorten the duration of seizures.
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 sufferers in more than 20 years.
The revolutionary drugs block a protein called calcitonin gene-related peptide (CGRP), which is responsible for the pain and nausea associated with migraines. By blocking its production, the drugs reduce the frequency and severity of the attacks.
With one self-administered injection per month, patients can almost halve the number of days they suffer from migraines and reduce their severity.
There are currently three anti-CGRP drugs approved in the UK – erenumab, fremanezumab and galcanezumab. However, it is not easy to qualify for access to the NHS. Patients must have previously failed three previous medications and must also experience at least 15 migraine days a month.
And even when patients meet the criteria, many are told that the drugs are not available to them. “This is a drug that could potentially change my life and no one is going to tell me why I can’t have it,” said Tiffany Snowden, 28, an archaeologist from Harrogate.
She suffers from blinding headaches up to 20 times a month, sometimes lasting 48 hours at a time.
Prescription pain relievers and ice packs have limited effects on an illness that has plagued Tiffany since she was 12 years old. “It feels like someone is kneading dough, only the dough is my brain,” she says.
Prescription pain relievers and ice packs have limited effects on a condition that Tiffany Snowden (pictured) has had since she was 12.
When Tiffany approached her neurologist about access to the drugs in 2021, she was told that she had to try the epilepsy drug topiramate first.
Only if she did not see any improvement was she considered for the new treatment. But topiramate is notorious for its side effects, which include confusion and hallucinations.
Tiffany insists that the drug, which she is still taking seven months later, did not relieve her migraines. But there have been side effects. “I have brain fog all the time,” she says. “I have trouble talking. Sometimes my husband has to translate for me because I forget words. “
It’s a fact
Migraines affect one in seven Britons – more people than diabetes, asthma and epilepsy combined.
She was supposed to see a neurologist in March to discuss CGRP treatment, but the hospital canceled the appointment and put her on a waiting list for another appointment instead. Last week, Tiffany filed a complaint with her health department about what she calls an unacceptable delay.
The Mail on Sunday has also heard of other desperate migraineurs from different parts of the country, all of whom have similar stories to tell.
Patients in Sunderland calling for treatment say they have been trying for months to get NHS chiefs to give them the drugs they need.
Ria Bhola, a specialist migraine nurse who works with the Migraine Trust, believes the problem is due to disruption from the Covid-19 pandemic. “When the pandemic broke out, many specialty clinics for headaches and migraines were paused or went virtual. Now clinics are reopening and trying to overcome the patient backlog.
“Clinics are keen to use these drugs, but they do not currently have the capacity to introduce new treatments due to the training and administrative burden involved.”
She says migraines are a low priority from hospitals that are trying to clear waiting lists.
“Ultimately, this treatment will be a win-win for hospitals as more patients treat their condition themselves and spend less time in hospital. But trusts need to take the first steps in setting up treatment.
“That won’t happen until the hospital management funds more money for migraine treatment.”