My battle to access life-changing medication
By: Tiffany Snowden, who lives with chronic migraine
My name is Tiffany and I am a 28-year-old chronic migraine sufferer. Having been diagnosed with migraine over 16 years ago, I have tried several medical and homeopathic treatments over the years.
Over-the-counter painkillers, cold compresses, acupuncture, massage, dietary changes, triptans… The list goes on. I then tried two preventative treatments: beta-blockers and amitriptyline, both of which had unpleasant side effects and didn’t help prevent my migraines to any meaningful degree.
So you can imagine my excitement when news of a new preventative treatment – anti-CGRP injections – came to my attention. Finally, a new drug developed specifically for migraine! At this point, my migraines had gone from episodic to chronic, so I figured I would be the perfect candidate for this supposedly ‘life-changing’ treatment.
The many hurdles
Unfortunately, getting access to anti-CGRP injections was not as straightforward as I had hoped. Despite fulfilling most of the criteria, my neurologist said I needed to try one more preventative before being eligible and I was faced with having to try the drug I’d managed to avoid until now: topiramate. The first few months worked well but as I increased my dose, I found the cognitive side effects too much to deal with, particularly at work.
Back to the neurologist I went: my third preventative treatment failed, so I was now eligible, right? He prescribed me Ajovy (fremanezumab) and said it would be a maximum of three months before I received it.
The waiting game
Three months soon turned to six and so on. I called the hospital regularly to request an update but just kept being told I was on a waiting list and would be contacted soon.
I began reaching out to other migraine sufferers in my district only to find that many had been on the waiting list for Ajovy for over a year. The Covid-19 pandemic was cited as a reason for the delay, but this didn’t make sense to me given that Ajovy is a self-administered injection requiring no medical intervention.
It was only after engaging with The Migraine Trust that I realised how much access to anti-CGRP medication is a postcode lottery, often not offered to eligible patients due to funding decisions made at the higher levels of individual NHS Trusts. As someone who was suffering almost daily with crippling and debilitating pain, this was unacceptable.
After several unsuccessful attempts of speaking to the hospital and NHS Trust, I submitted a PALS complaint and took my story to the media, if only to raise awareness of how migraine is not ‘just a headache’ and how many of us sufferers are struggling to access life-changing treatment. After enough pressure, I eventually received my first dose of Ajovy.
Life-changing is right
I have now been on Ajovy for six months and can honestly say it has changed my life. My first thought when I wake up is no longer ‘how bad is it today’? I’m able to leave the house without panicking about whether I have a triptan in my bag. My migraine attacks are fewer in number and less intense.
Overall, it took over a year, several letters, phone calls, and a lot of self-advocacy to get my hands on it. My advice to anyone who is on a waiting list for anti-CGRP medication, don’t give up and keep fighting.
If you’d like advice on how to access CGRP medication, you can contact The Migraine Trust’s free helpline on 0808 802 0066 or email us at email@example.com. You can also read Dawn’s CGRP journey here and find out about our campaign for better migraine healthcare and how to get involved here.
PALS stands for Patient Advice and Liaison Service and offers confidential advice, support and information on health-related matters. It can help you in a number of ways, such as:
- Answering questions about your health
- Helping you resolve concerns or problems while you use the NHS
- Advising you about how you can be more involved in your own healthcare
- Providing you with information about the NHS, its complaints procedure, and support groups outside the NHS