Calls for new migraine drug to be available on NHS in Wales

A new drug for chronic migraines could make "a massive difference" if it was available on the NHS in Wales, a former national poet of Wales has said.

Gwyneth Lewis, who has up to 21 migraines a month, said she was "running out of options".

Aimovig injections are currently being appraised for licensing by NICE, which gives advice on healthcare.

A Welsh Government spokesperson said they looked forward to seeing the outcome of the NICE appraisal.

Aimovig is a brand name for Erenumab, a monthly self-administered injection for chronic migraines.

• 10 things not to say to someone with a migraine

• New migraine drug 'works when others fail'

People in Wales and England are currently only able to get the injections on private prescription, which can cost about £385, but the NHS in Scotland approved it recently.

Phil Ranson, from NICE, said although they did not recommend the drug in draft guidance published earlier this year, they were yet to produce their final recommendation.

He said Novartis, which makes the injections, had provided a "new proposition" and evidence, so it has agreed to provide a further update on its appraisal.

The All Wales Medicines Strategy Group - which provides healthcare advice to the Welsh Government - said on its website it considers applications for appraisal of medicines which have previously had rejection from NICE on the grounds of cost grounds, but which are funded in England.

What are chronic migraines?

Chronic migraines are defined as more than 15 headache days per month over a three-month period of which more than eight are migrainous, in the absence of medication over-use.

The condition affects about 2% of the world population.

There is no single cause for chronic migraines, but some people find they have defined triggers such as caffeine, bright lights, hormones, food or sleep deprivation.

Source: The Migraine Trust

Gwyneth Lewis was the national poet of Wales in 2005

Ms Lewis said the new drug "looks promising".

The 59-year-old, from Cardiff, said she had tried eight treatments for her chronic migraines, all of which have failed.

"This could make a massive difference between having a life or not and being left to rot," she said.

"I can't read, I can't write, it is very painful. I feel crippled and disabled," she said.

Describing the condition, she said it was like "a red hot dagger stuck through my eye and coming down my nose and out the back of my head".

Ms Lewis said she had 21 episodes last month.

She added that she felt there was "nobody here with the expertise" to look after her condition in Wales.

Anna has experienced migraines since she was 13-years-old

Former GP Anna Maclean, from Llanishen in Cardiff, has been taking Aimovig since December 2018, and said over the last few months she has noticed a "big improvement".

She was chosen for a clinical trial at King's College Hospital in London for the preventative migraine drug Fremanezumab, and since then has been given Aimovig as she showed a more than 50% successful response to the original drug.

The condition caused her to lose her job in 2014, when she experienced a four-month chronic migraine.

She said it was a disease which is not given the "attention" or "expertise" it deserves in Wales, and said more research and resources was vital.

"People are desperate. To get these drugs in Wales could make a difference to so many people," she said.

Aimovig is "a little bit of hope" for migraine sufferers in Wales, says Beth Francis

Beth Francis, from Anglesey, said she "absolutely" agrees with calls for the drug to be made available to migraine sufferers in Wales.

The 27-year-old has chronic migraines which can leave her bed-bound.

She said the drug was a "little bit of hope" for people in Wales because there are "not many options" for those in Wales.

Beth said she has tried five different medications and botox injections for her migraines but none of them have made a "significant difference" to her.

She currently travels more than 300 miles to Liverpool to receive botox injections.

"A migraine is one of those conditions which is so limiting when you have an attack," she said.

The condition has impaired her ability to work and earn an income, but she said "if I had the means I would have tried Aimovig".

Una Farrell, of the Migraine Trust said there was "a lack of specialist migraine care" in Wales.

She said "many migraine patients from Wales" are made to travel to England for specialist migraine treatment, such as in NHS migraine centres.

A Welsh Government spokesperson said it was "committed to improving access to services" for migraine patients.

"Our neurological conditions delivery plan sets out how people can access timely and effective care through hospitals or in the community.

"The plan also focuses on helping people live with their condition, raise awareness, improve information and support research into causes and treatments."