New potentially life-changing medication for migraine sufferers welcomed but 'more support needed'
ITV Wales Health Reporter Katie Fenton went to meet Lucy Wells, who first started suffering with migraines at the age of seven.
New potentially life-changing medication is set to become available in Wales for people who suffer with migraines this summer.
But it will only be available to a small proportion of people, and some people affected by migraine are calling for greater support to help them live with the condition.
NHS spending watchdog NICE has recommended a once-daily pill to treat migraines on the health service in Wales and England for the first time in a move that will provide more treatment options for tens of thousands of sufferers.
Atogepant – sold under the brand name Aquipta and made by AbbVie – has been given the green light for NHS use as an option for people who have at least four migraine days a month, and who have tried at least three other treatments to no avail.
The pill works by blocking the receptor of a protein found in the sensory nerves of the head and neck, known as calcitonin gene-related peptide (CGRP). CGRP makes blood vessels dilate, which can lead to inflammation and migraine.
NICE published its final draft guidance on Thursday, with final official recommendations expected to be published mid-May.
Welsh health boards have been told to make the treatment available to suitable patients by mid-June.
But there are calls for further support to be provided.
Lucy Wells, from Cardiff, first started suffering with migraines from the age of seven, but they intensified around six years ago to a point where she would experience a migraine most days.
Migraine attacks have affected every part of Lucy's life, from work to socialising and spending quality time with her family.
Weekends were previously spent running, hiking, or going to karate together as a family, but now the mum-of-two can no longer participate in these activities. Other hobbies, like going to concerts or the theatre, are no longer possible.
She sees friends in small numbers but they must be in a quiet location due to various triggers causing migraine attacks, like light, noise, travelling, the weather and over-exertion.
"I can't not think about it," she told ITV Wales.
"I love doing a bit of gardening but if I go out and do maybe more than half an hour, I'll end up in bed with a migraine.
"Any new medications, if it's effective, that's amazing.
"If I were to be given that medication and it helped to prevent migraines, my whole life would be transformed.
"But the problem is it's so hard to get to that point.
"It's really good news that there's a new drug potentially and it gives some hope for people like me, but it would be nice if there were other changes made alongside that just to support people through this.
"It's a really long journey, there isn't a quick fix so actually having a bit of support, even just somebody at the end of the phone who you could speak to for advice on how to manage pain.
"Because even if the drug is successful, a person is probably going to have to have at least a year of going to their GP with migraine to actually be able to start something like that."
A Welsh Government spokesperson said: "We recognise the debilitating effects of migraine and we know that timely access to diagnosis has been an issue for people experiencing them.
"We remain committed to working with the NHS to improve care, services and access to services.
"The All Wales Headache Toolkit was launched in June last year to support frontline clinical teams in diagnosing and planning optimal care for people experiencing different types of headaches disorders, including migraine.
"The toolkit is intended to provide a reassuring, structured approach to support clinicians assessing, diagnosing, and managing headache disorders in the community, and increase confidence to make a timely referral where indicated."
Helen Knight, director of medicines evaluation at NICE, said: "Currently, the most effective options for people with chronic migraines who have already tried three preventative treatments are drugs that need to be injected. The committee heard from patient experts that some people cannot have injectable treatments, for example because they have an allergy or phobia of needles."
Ms Knight said patients with chronic migraines – which happen on more than 15 days of the month – "would welcome an oral treatment".
She added that atogepant also "offers more choice" for people who suffer episodic migraines, which happen on fewer than 15 days of the month.
According to The Migraine Trust, around 10 million adults in the UK are living with the condition.
The charity's chief executive, Rob Music, said: "A migraine attack can be incredibly debilitating."
Symptoms can include intense head pain, loss of or changes to the senses, and lack of ability to carry out day-to-day life.
"It is positive to see even more therapies emerging for people with migraine as many still rely on treatments developed for other conditions," Mr Music said.
"We now need to ensure access is swift, so that migraine patients can benefit from them as quickly as possible."
NICE's guidance for Wales and England comes after atogepant was recommended for use in Scotland by the Scottish Medicines Consortium (SMC) in October last year.
Rachael Millward, medical director at AbbVie UK, said: “AbbVie has an extensive history in migraine research and is committed to addressing the unmet needs of people living with this debilitating condition.“
"The recommendation from NICE means that suitable people living with migraine in England and Wales will have access to an additional treatment option that has the potential to improve their quality of life."
NICE recommends that atogepant should be stopped after 12 weeks if chronic migraines do not reduce by at least 30% and episodic migraine by at least 50%.
If there are no appeals against its final draft guidance, NICE is expected to publish its final guidance on the drug next month.
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