23rd October 2019

Update on NHS appraisals for CGRP medication

Activity since NICE rejected Aimovig for use on the NHS in England and Wales

It’s now been nearly one month since the National Institute for Health and Care Excellence (NICE) rejected Aimovig (erenumab) for use on the NHS in England and Wales.  We wanted to update you on what we at The Migraine Trust and the wider headache community have been doing in response.

Firstly, we’ve produced this Q&A to help patients understand what this decision means for them and to reassure any patients that are currently using erenumab via a ‘free of charge’ scheme that they will still be able to have access to the drug for the next three years.

We’re updating the Q&A on a rolling basis as soon as we receive any new information, so if you have any concerns it’s a good idea in the first instance to refer back to it regularly to learn all of the latest news. If you have a question that isn’t in our Q&A, please contact our information service for a reply.

Secondly, we’ve been supporting people affected by migraine to complain to NICE about this decision. If you would like to complain, you can do so by contacting NICE here.

Thirdly, we’re doing as much as we can to ensure that the next CGRP drugs that NICE and the Scottish Medicine Consortium (SMC) appraise will reach a different outcome to the one we’ve just seen. NICE and the SMC are currently appraising Ajovy (fremanezumab) and will be appraising Emgality (galcanezumab) soon.

We’re doing this in three ways:

  1. Earlier this week (22 October), we accompanied our two ‘patient experts’ to the NICE committee meeting on Ajovy. At the committee they represented the voice of chronic migraine patients and gave evidence about the experience of using Ajovy, the impact it has had on their lives, and their migraine in general. We are incredibly grateful to both of them for giving their time and sharing their stories.
  1. We have launched a CGRP patient experience survey to try to plug some of the evidence gaps that NICE raised when rejecting Aimovig. Our survey looks at the patient experience of using CGRPs and their effectiveness when compared to other preventives, specifically Botox. We hope to submit the findings from this survey into NICE and the SMC for their consideration in the Ajovy and Emgality appraisals. If you have experience of taking a CGRP drug, please complete our short survey by clicking here. We need as many patients as possible to help us build the evidence-base for why these drugs need to be available for patients on the NHS.
  1. We are also working with the migraine and wider headache professional community to try to build the evidence-base around the size of the population that is eligible for CGRP drugs in order to help NICE and the SMC make the most informed decisions about the unmet patient need that CGRPs could fill.

On behalf of the professional workforce, the British Association for the Study of Headache (BASH) and the Association of British Neurologists (ABN) have also lodged a joint appeal against NICE’s Aimovig decision. We will update you as soon as we learn more about the outcome of their appeal.

We know this news has been difficult and distressing for many of you. We’d like to thank everyone who has been in touch with us to share their concerns, ask questions, and tell their migraine and CGRP stories.  As always, our free Information Helpline is here for you or on 0203 9510 150.