I have had alopecia areata since I was 10 years old. At the age of 35, this means that I have had alopecia for most of my life. I have also experienced each “rung” on the alopecia areata ladder, progressing from patchy alopecia areata which dominated my teens and early 20s, through to alopecia totalis at the age of 30, and then alopecia universalis at the age of 33.

Alopecia has significantly impacted my life. I naturally have a particularly distinct colour of red hair and over the years it has been my most prized physical attribute. I see it as one of my most unique features and one of the biggest things that makes me, me. My bio hair is also extremely thick and curly.

In October 2021, when all my hair fell out for the second time and I progressed to alopecia universalis for the first time, I was absolutely devastated. The punch was particularly brutal as prior to this I had experienced a 2-year period of my hair completely growing back. The hardest part for me about having alopecia has always been managing this unpredictability and navigating the associated loss of control. 

Over the years, I have invested huge amounts of time and money in coming to terms with my hair loss. I understand that everybody’s journey and experiences are very different. For me, following the second bout of complete hair loss, I could accept that my hair might never grow back, but I absolutely could not give up trying or give up hope that better treatments might become available. Even now, I cannot envisage a day where I might feel that I did not want my hair to come back.  

It is for this reason that I can vividly remember exactly where I was when I came across the BRAVE trials for baricitinib. Despite having a medical background (I am a doctor), I had never heard of JAK inhibitors and had no understanding of what they were or how they worked. However, these trial results sparked incredible excitement and hope and I was determined to figure out how I might be able to access these treatments.

I did lots of reading and research about the JAK inhibitors, even asking colleagues with medical statistics background to have a read of the trial and provide their critique. I thought extremely carefully about the pros and cons of taking the medication and looked through the possible short- and long-term risks in detail. I decided that, for me, the benefits of possibly having my hair back outweighed the potential cons and risks of taking the medication and I wanted to give it a try. 

As many of you will be aware, two JAK inhibitors are now licensed for severe alopecia areata (baricitinib and ritlecitinib). This makes them the first ever licensed treatments for alopecia areata! This has felt like a hugely pivotal moment for the alopecia community. However, despite the hard work and best efforts of many (including Alopecia UK), these medications remain unavailable on the NHS. This means that baricitinib can only be accessed via the private route and therefore requires self-funding.

Despite everything I’ve explained about how desperately I would like my hair to grow back I must admit that I still had these waves of uncertainty with thoughts like “Do I really need to take medication just because I’ve lost my hair?”. I think part of the reason for this is that we have somehow become almost institutionalised into believing that we should not have treatment for this condition. For years, it feels as though this condition has been neglected and considered as nothing more than a “cosmetic” problem. I feel strongly that it is time that it is recognised and treated for what it is; a chronic autoimmune condition with life-changing impacts on our mental and emotional wellbeing. It should be managed in line with other autoimmune conditions. 

In my 25 years of having alopecia, it has been interesting, disheartening and, at times, concerning as a medical professional to experience first-hand the management of alopecia within the NHS. There is a pretty relentless message in the alopecia community that people do not feel like they have been taken seriously and feel endlessly “fobbed off” and let down by the system. And I can really empathise with this. It has felt that with the advent of the JAK inhibitors things are beginning to shift in our favour and, yet still, the very recent ongoing rejection of baricitinib is proof in point of how unfairly disadvantaged we seem to be as a group of individuals.

I can appreciate that up until very recently there have been no licensed treatment options and the evidence base for any treatments has been virtually non-existent. But my past disappointments in much of the NHS care I have received go far beyond the lack of access to these medications. From a GP refusing to acknowledge that my hair was falling out, to having been asked only on a single occasion (this year, in fact) how I am coping from an emotional and mental perspective with my hair loss, and whether I need any help or support, to shelling out money for decent wigs and access to treatments.  

As a medical professional, I do feel that I have had a slight advantage in better understanding how to access and process information about alopecia and be able to advocate more assertively for myself. At the start of the year, I set up a social media account because I wanted to share my experiences, raise awareness, and help to normalise some of the feelings associated with hair loss. I have been concerned at the number of messages I get from people who are grossly misinformed about their alopecia areata and are struggling to manage their hair loss without adequate support.

I have been on JAK medication for around 9 months now. I currently have regrowth of my eyelashes and eyebrows, and the hair on my head has started to come through in patches over the past couple of months. I have not had any side effects that I’m aware of. Having my eyebrows and eyelashes back alone has improved my quality of life beyond belief. I am aware that this is not a straightforward “cure” and things may change again but, after 25 years of disappointment, finally having the significant impacts of this condition acknowledged by a healthcare professional, and being managed with a compassionate and positive attitude, has been almost more important than the hair regrowth itself. It has been refreshing to not be told to “go away” but to be given some hope and support. 

It is for all these reasons that I decided to start a petition for baricitinib to be approved for NHS use following the NICE rejection. It feels extremely counterintuitive to have ongoing research efforts and licensing for treatments for alopecia if we cannot access them in an equitable manner. It is particularly frustrating knowing that these drugs are readily available within the NHS to patients with other conditions such as eczema. As a community, I feel that we have the power and strength to keep pressing for the better care that we deserve, and I hope that this petition might be a further push in the right direction. 

Thank you to Jemma for sharing her experience with us, and for creating the petition. She needs only a few more signatures before 30th November to reach the 10,000 target to receive a response from the government. 

Sign the petition today