I write this blog post on the day that NICE has published their draft final guidance confirming that they do not recommend the JAK inhibitor drug as a treatment for severe alopecia areata. My writing today is not to go into the detail of this (you can find that here). Instead, I wanted to write something to acknowledge how difficult this all is for those in the alopecia community, for all sorts of reasons.  

Treatment seekers 

I regularly see from Alopecia UK’s private Facebook group, and the emails and phone calls we receive, that there are lots of people in the alopecia community desperate to get access to a new treatment. So many hopes are being pinned on these new treatment options. I can understand why. Baricitinib is the first drug to be licensed by the MRHA for the treatment of severe alopecia areata. For NICE to say no, can feel unfair and as though all hopes have been dashed. The more I learn about NICE technology appraisals, the more I understand that it can often be a long battle between drug manufacturers and NICE before treatments are approved. And even then, it is not a certainty that NHS Trusts will routinely offer the treatment.  

But all hope is certainly not gone. I remain hopeful that new treatments are still on the horizon for patients with alopecia areata. Never has there ever been such interest in the condition. Finally Big Pharma is coming up with possible treatments for us! However, the key word here is ‘possible’. JAK inhibitor drugs offer some hope of regrowth, but the clinical trial data is clear; these drugs are not a cure. A JAK inhibitor will not have the desired outcome for everyone with alopecia areata. I get worried when I hear that members of the alopecia community are pinning all their hopes on these treatments, as I worry about the impact of any disappointment should the drug not work for them, or they not be able to access it.  

Not for me 

As well those who are eager to try a new drug, there is also a large section of our community who have made the decision that JAK inhibitor drugs are not something they wish to pursue. Some are put off by the idea of having to stay on a drug for life or the possibility of side-effects. For me, I think I’m looking for a ‘magic wand’ treatment that will get me my hair back, without any possible risk of side effects, and most importantly, without any risk of me getting my hair back, living with it for a few years and for it to fall out again. I think I want ‘the moon on a stick’! 

Personally, having nearly got my hair back two times for it to fall out again, I don’t want to go through that again. As we know, thoughts and feelings around alopecia, including ideas around treatments, vary from person to person. Whilst I am not wanting to pursue a JAK inhibitor drug for myself, I am firm that new treatment options should be available to those who need to try.  

A fine balance 

Which brings me to the balance we have been trying to strike at Alopecia UK. The charity is trying to do its best for a diverse community with different views around treatments. Alopecia UK wants to advocate hard for new treatments to be made available to those who need them, but also wants to say ‘You can live happily and confidently with alopecia’, as so many in the alopecia community demonstrate each and every day.  

I don’t want anyone to feel like the alopecia charity that has done so much to advocate for living well with alopecia is now saying that everyone needs to have these treatments. Alopecia UK will continue to show that people can, and do, live well with alopecia. It is essential that we continue to do this, to offer immediate support to those who need it.  

But Alopecia UK is firmly saying that if new treatment options go through clinical trials and those trials show benefits for patients with alopecia areata, and these treatment options are already approved for other medical conditions, then these treatment options should absolutely be offered to those that need them.  

I believe my colleagues Sue and Lynn have fought hard in what is a new space for Alopecia UK, but ultimately it is the responsibility of the drug manufacturers to get treatments across the line with NICE. I am hopeful that this will happen in time but I share in the disappointment of others that this hasn’t happened now.  

We’re all in this together 

What I’ve always thought is brilliant about the alopecia community is how supportive it is of each other. At this time, it’s important that we acknowledge that we share different thoughts and experiences but there is an appreciation that today’s decision is harder for some than others.  

Regardless of our individual viewpoints regarding potential new treatments, one thing I think the whole alopecia community can agree on is that we deserve to be seen and heard. Alopecia UK will continue to help with that.  

If advocating for yourself is something you think you’d like to do, we have added a couple of new pages to our website including how to contact your MP and how to share your story with the media.