In this blog, we answer common questions we get asked about the new calcitonin gene-related peptide monoclonal antibody (CGRP mAb) treatments for migraine via The Migraine Trust helpline.

What is CGRP?

CGRP stands for calcitonin gene-related peptide and is a protein that transmits pain signals along the trigeminal nerve into the brain stem and through the brain. It is believed that CGRP is an important factor in generating and maintaining the headache associated with migraine. The new calcitonin gene-related peptide monoclonal antibody (CGRP mAb) treatments aim to block the CGRP protein and can help to reduce the headache.

CGRP mAbs are the first preventive medicines specifically developed for the treatment of migraine. Prior to their development, the only preventive medicines for migraine were drugs developed for other conditions that had been found to be useful in treating migraine.

All of the CGRP medicines currently available in the UK are taken by injection, either monthly or every three months. They are administered by an injection under the skin, known as a subcutaneous injection. They come in a self-injector pen and you can use this yourself at home after being shown how to by a doctor or nurse.

Another CGRP mAb treatment called eptinezumab is being reviewed for use on the NHS this year, it is taken by intravenous infusion. More new drugs called gepants, which bind to the CGRP receptor on the trigeminal nerve and block its effect, are being considered by NICE and not yet available in the UK.

How do I get the CGRP treatments?

The National Institute for Health and Care Excellence (NICE) has currently approved three CGRP mAb treatments (fremanezumab, galcanezumab and erenumab) for use on the NHS. For all three you have to have tried and failed at least three other preventive treatments (such as propranolol or topiramate) before they can be considered. They are only available via headache specialists or neurologists, you will need to meet the criteria and your specialist will need to agree that the CGRP mAbs are a good treatment for you to try.

To be considered for them, the first step would be to seek a referral to a headache specialist or neurologist. This can be helpful as they have access to a wider range of treatments than your GP, so even if CGRP mAbs are not an option, other treatments may be available. You will need to check the referral criteria with your GP – some headache/neurology clinics will not accept referrals if you have not tried three prior preventive treatments.

In Scotland you may be required to try Botox first before CGRP treatments can be prescribed. Botox is another treatment used for migraine and may also be useful.

What do I do if I can’t access CGRP treatment?

In general, when NICE recommends a treatment, the NHS Constitution says it’s your legal right to have it, providing your consultant thinks it’s an appropriate treatment for you and you meet the required criteria (as set in the NICE guidelines).

When it’s been agreed a treatment is right for you but you can’t access it, the first step is to contact the Patient Advice and Liaison Service (PALS) at your local hospital. PALS will initially try and resolve the issue locally. If they can’t do this then they can help you raise a formal complaint. This often involves signposting you to an independent complaints advocate, who can help you with the complaint.

We would also suggest contacting Healthwatch to make them aware of the situation and to ask about independent NHS complaints advocacy. You can also write to your local MP to let them know about the situation and ask for their help.

If you raise a complaint and still can’t access the treatment you can contact the Parliamentary and Health Service Ombudsman – it usually helps to have your consultant’s support with this. The Ombudsman is an independent body and they can look into a complaint if you have been unable to resolve it with your local NHS.

It can also be helpful to contact the Care Quality Commission (CQC). The CQC is the organisation responsible for formally inspecting and regulating the quality of care provided by health and social care providers. As part of their checks, they would consider whether NHS organisations are compliant with NICE guidance. Although they are not able to take forward or investigate individual complaints, they do encourage members of the public to share their experiences of care.

Another option is to ask for a referral to a different headache clinic that is currently offering CGRP mAb treatment. Your GP should be able to check with other headache clinics if they are prescribing it. Unfortunately, being referred to another clinic may be a slow process as some of them have quite long waiting lists. Again, your GP should be able to advise and refer you to the clinic with the shortest waiting times.

Learn more about CGRP mAbs here. You can also read about Tiffany’s battle to access CGRP mAb medication here.