Nausea, body pain and exhaustion. Hot and cold flushes. Agonising digestive discomfort. Just a few of the migraine symptoms that make attacks so much more than simply a headache. And, for thousands of sufferers, standard treatment may – at best – offer only intermittent relief.
So there was understandable excitement last year at a new injectable drug that was described as ‘life-changing’ by the patients who used it.
Aimovig – also known as erenumab – is the first treatment to target the process that leads to migraine symptoms.
The drug contains cloned immune cells that block a mechanism that causes blood vessels in the brain to swell, leading to an attack.
Clinicians claimed it was ‘one of the most important advances in migraine therapy in decades’. Yet, earlier this month, patients were dealt a huge blow when the National Institute for Health and Care Excellence (NICE) – the NHS’s spending watchdog for England and Wales – refused to fund it, even though health chiefs in Scotland have already given it the green light.
Aimovig – also known as erenumab – is the first treatment to target the process that leads to migraine symptoms
NICE said there was not enough proof the drug was clinically more effective than existing treatments, such as regular injections of muscle-relaxing Botox.
The decision means NHS doctors have effectively been barred from using it until NICE reconsiders whether it is worth it or not.
In the meantime, hundreds of desperate patients have been paying around £5,000 a year to private clinics for monthly injections of Aimovig in the stomach, thigh or arm.
Those numbers are expected to rise further in the wake of NICE’s rejection.
One such patient is dad-of-one and former tax accountant Phil Walsh, 69, from North Tyneside. He was forced to take early retirement at 54 due to severe migraines that struck almost daily.
But since starting on Aimovig last November, Phil says his life has been transformed.
‘I’ve missed weddings and funerals because of migraines. No other treatments worked for long.
‘But now my attacks are down to around one a week and my life has changed completely. I can’t believe anyone could say it’s not cost-effective.’
Phil first took the drug as part of a trial but is now forced to pay for it privately. ‘I’m lucky I can afford it, but it’s terrible to think other people are being denied the chance at a normal life,’ he added.
Migraine affects around one in ten of the UK population. Over-the-counter painkilling tablets such as paracetamol and ibuprofen can help mild attacks. But more severe cases need drugs called triptans – as pills or nasal spray – that stimulate receptors in the brain disrupted by the attacks. Botox, epilepsy drugs and even some types of antidepressants are also used.
The NHS bill for prescription medicines to treat migraines is thought to be in excess of £250 million a year.
Aimovig is the first in a new class of drugs called CGRP inhibitors.
The drug contains cloned immune cells that block a mechanism that causes blood vessels in the brain to swell, leading to an attack (stock image)
These work by blocking the effects of a protein called calcitonin gene-related peptide, which is involved in transmitting pain signals to the brain and is found in increased levels during migraine attacks. At least two other similar drugs have been licensed and are due for NICE assessment in the next few months. But NICE barred Aimovig’s use even though the drug is licensed to be used only after at least three other existing medications have failed.
It concluded it was ‘very uncertain whether erenumab is more clinically effective’ than Botox.
The London-based National Migraine Centre says it has prescribed the drug – which can be injected by patients in the comfort of their own home – to nearly 200 migraine sufferers over the past year or so. It says more than two-thirds reported an improvement in quality of life and 75 per cent said they would recommend it to other migraine sufferers.
Professor Peter Goadsby, from King’s College London, is one of Britain’s leading migraine experts and led the research into CGRP’s role in triggering the agonising attacks.
He said the NICE rejection came as a big surprise. ‘Most of us in the field thought it would get the go-ahead for chronic migraine,’ he said. ‘It’s frustrating.
‘Hospitals are strapped for resources and here we have a treatment that people can administer in their home.’
Prof Goadsby called on NICE to reconsider its decision.
Experts point out that whereas Botox has to be injected up to 30 times in a course of treatment by a trained health professional in a hospital clinic, Aimovig is a do-it-yourself jab that can be done at home.
Novartis, which makes the drug, has offered to only charge the NHS for patients for whom it works.
After almost two decades of near constant agony, Phil is now hoping to enjoy life holidaying with his 67-year-old wife, Elaine.
He describes how the condition left him bed-bound, unable to see properly and talking gibberish.
‘I could be in bed being sick for a week,’ he said. ‘If I moved my head a fraction of an inch I would start throwing up and it could be like that for up to a week. On two occasions, I collapsed at work and colleagues thought I’d had a stroke.
‘It would start off with blurred vision, so bad I couldn’t see anything. Then my fingers would go numb, followed by my mouth and tongue. That would be followed by a period, often lasting several hours, where I could not speak coherently.
‘I knew what I wanted to say but it came out as a load of rubbish.’
After repeatedly having to cancel meetings with clients, Phil took the difficult decision to retire early.
Twice he has been admitted as an inpatient at King’s College Hospital after being crippled by blinding migraine attacks. Despite trying an array of medicines – including triptans and epilepsy drugs – nothing worked. Botox provided some short-term relief but it too eventually stopped working altogether.
‘I loved my job,’ says Phil. ‘If this drug had been available then I wouldn’t have needed to retire. There will be other people in that situation now.’
He is convinced it is worth every penny – if only because it means he can now enjoy time with his grandchildren. ‘I’m able to do more with them than I could before I had the injection because if I had a bad headache, I was incapable of doing anything,’ he says.