Dear fellow migraine sufferers,
This is such a dreadful blow! You have to have a life threatening illness to get an expensive drug it seems (actually I have often wished I was dead to escape living with this awful condition) And probably the fact that it affects more women than men also means we get disregarded.
Let's make our views clear to NICE!
Yes, I read this this morning, seems crazy to me and inhumane when people are in this amount of pain. Obviously not a migraine sufferer in NICE.
That's appalling! I'm seeing my neurologist on Monday I'm going to ask her if she knows why and whether decision is likely to be reviewed. We've already discussed whether I should go on it bc it was just expected that it would pass.
Yeah I tried to read the NICE report on it but I didn't understand the terminology of half of it, also bits of it were blacked out ( weird ) ? Then I read in the paper it was considered too expensive. I think this was because it was supposed to be in comparison to Botox except it kept saying it couldn't really be compared to Botox because it was aimed at people with a lower migraine frequency. I'm still trying to read the rest of it now!
I'll let you know what the neurologist says it will hopefully be clearer.....
This is the main part of what I wrote to NICE on their consultation form. You can access the form if you go onto Migraine Trust FB page..follow the link.
PLease do add your own feedback to them. The more of us who write the better! Hopefully!!
I wrote:
I am writing from my personal perspective. Normally I would write without such emotion on a document like this but I feel it is time to say how I feel, how deeply let down I feel on my own behalf but also for the many others ( mostly women) whose daily life is affected by this dreadful condition. Headache and migraine treatment have been badly under resourced by our health services for years. I am hugely grateful to Professor Goadsby for his work to bring relief to people like me, and to the wonderful support of Doctor MacGregor of the City of London Migraine Clinic over the years that I lived in London.
I am 62 and have had chronic migraine for many years, and before that frequent migraine from age 10. I have been determined to 'have a life' and to pursue my career despite living with this painful and distressing condition. Migraine for me means three days for each attack, intense pain which has made me feel absolutely desperate and frightened, and nausea, relentless nausea with vomiting, sometimes until I vomit blood, which doesn't relieve the nausea. It is maybe worse feeling nauseous endlessly than feeling pain. It is suffering in which you cannot relate to people or distract yourself with TV or radio. It is all pervasive. And then, there is the living with dread of the next attack and the uncertainty which means you cannot plan ahead or guarantee your attendance at your child's birthday party. To add insult to injury, when you have been through all the so-called preventatives over years and are left with only the acute medicine to use, triptans ( which I thank God for) the triptans are rationed by GPs who are concerned about rebound headaches - but since I had more than 15 days of migraine per month with or without triptans I might as well take the only drug which gave me relief! And then the fear I will run out of them before the next prescription. It is a sort of hell and I often think death would be preferable.
These days I rarely talk about it to anyone but the neurologists for fear that someone might say something unhelpful and remind me of how extraordinarily isolating and lonely it is living with migraine. So in short, I would like you to consider the considerable suffering!
I was fortunate to have caring employers who valued my work skills, otherwise my sick leave would have meant I could not continue working. So secondly please consider how costly it is to have so many people absent from work with this disease. You will have the statistics on that.
Thirdly, as a woman I cannot help but wonder if this drug might have been developed earlier and approved for use by the NHS if a greater proportion of migraineurs were men. In part, historically this may be women's 'fault' for not being assertive in asking for what they need, but the word 'migraine' conjures up in the mind for many a headache which weak and emotional women experience arounsellor, I do of course appreciate that you may have members who have the capacity for great empathy even if they have never had a migraine.und their period, and make too much of! Now that we FINALLY have a preventative drug for migraine we women are going to have to fight for it as we have fought for so many basic needs over the years.
Is there anyone on your NICE committee who has experienced full blown nightmarish migraine or the horror of living with fear of the next one? Or the stigma of having migraine? As a former counsellor, I do appreciate, that even if members have not suffered themselves they may be capable of empathising with those of us who do live with this dreadful disease.
Pippa
Hi,
I went to my neurologist and asked her about Erenumab. She said that all the Neurologists she knew predicted they would reject it at this first visit because the way it was presented to NICE was so flawed. The most fatal error they made was to suggest it would be suitable or aimed at people with 4 migraines a month which makes it comparatively expensive as obviously in the NHS you would only be eligible for drug therapies which such a low frequency of migraine. She expects they will represent this injectable therapy in a more suitable format and expects it will eventually get passed by NICE.
They also produced a blended form of the drug in the tests which in reality no one would ever receive. Either way if they present it as a drug aimed only at those with chronic migraines at a frequency of 15 headache days a month it will compare much more favourably and likely get passed. She said they will be having another look in August so apparently it is likely to be alright in the end.
Hi Cat00,
That is so helpful thanks, and now we have some hope! It seems very strange that the drug was being presented to NICE to treat patients with 4 days or more of migraine per month! Anyway, I am very grateful to you for clarifying this and hopefully there will be good news after the August meeting ( only 7 more months...Hmmm!!).
Pippa
Help with Migraine question? 
5 migraines in 4 days 
Considering asking for the pill. Any thoughts?
New here. Advice? Tips?
