The title for this blog post is inspired by the classic episode of The Brady Bunch, which became many a meme, with Jan Brady fed up of all the attention her sister Marcia receives - 'It's always Marcia, Marcia, Marcia!'. Well, we think that some within our community may feel some of the same frustration regarding the fact that so many research studies, and much funding, has recently been directed at alopecia areata (including totalis and universalis) and not other types of alopecia such as androgenetic alopecia and scarring alopecias. 

At some point in our individual alopecia journeys, regardless of the type of alopecia we have, many of us in the alopecia community have felt as though there is not enough interest in our condition and not sufficient amounts of research into causes and treatments. Alopecia UK is a relatively new charity, registering with the Charity Commission of England and Wales in 2005. Seventeen years might seem like a long time but, given we were entirely volunteer-led for the first decade, there was limited activity on our 'Research' aim in that first decade. Alopecia UK's aims have always been 'Support, Awareness and Research' but the research aim was, for the first few years, more of an aspirational aim. It was something for us to work towards as the charity developed and grew. In the early years, we just didn't have sufficient funding to invest in research projects. In more recent years, our growth has allowed us to directly invest in research projects. 

The projects we have funded have depended on the applications we have received. We try our best to encourage interest in research across all types of alopecia but we have limited influence with researchers and ultimately we can only fund projects that are proposed to us and have sufficiently strong applications, as determined by our Research Committee and Lay Panel. You can find details of the projects we have funded in recent years here. 

In the last couple of years, we have found ourselves in fairly unusual times at Alopecia UK. For the first time ever pharmaceutical companies have potential treatments for alopecia areata going through clinical trials, for a group of drugs called 'JAK inhibitors'.  As a result, there has been a lot of interest from ‘Big Pharma’ regarding, specifically, alopecia areata (including totalis and universalis). You may have seen that a drug called Baricitinib (a JAK inhibitor) has recently been approved by the FDA in the USA for the treatment of severe alopecia areata. This drug would need to be approved by NICE before the NHS would approve it as a treatment for alopecia areata in the UK. A decision is expected on this in April 2023. Further details can be found here. 

There are currently clinical trials ongoing for other JAK inhibitor drugs as a possible treatment for alopecia areata. As a result, funding has been made available from Pharma for exploring impacts of the condition, partly because they are interested themselves in being able to demonstrate the impact the condition has in the lives of those with it so they can advocate for the need for treatments. We currently have a survey that has been funded by Pfizer which is open only to those with alopecia areata. This is because the funding pots that were made available by Pfizer were specifically to explore the impact of alopecia areata, because that is what they are currently interested in.

In an ideal world, Alopecia UK would have unlimited pots of money and a big research department, meaning that we could commission our own research, and as a result cover ALL types of alopecia, but unfortunately we are not in this position. We are a small charity with a very limited budget for research and limited staff capacity for research currently.

In addition, the other uncharted territory we currently find ourselves in is that a couple of years ago we received a substantial legacy, our first ever legacy gift. It amounted to over £450,000 which is a HUGE sum for our small charity. To give you an idea of how big this is for AUK, our typical annual income is around £250k-£350k. The legacy sum was restricted by the person who gifted it to AUK very strictly for ‘research into the causes and cures of alopecia areata’. This means we have a large amount of funding to invest in alopecia areata, and whilst this is fantastic for those with alopecia areata, sadly for those with other types of alopecia, it will mean that AUK will be doing far more in alopecia areata research in the next couple of years. We absolutely recognise how frustrating this will feel to those with androgenetic alopecia, and other types such as scarring alopecias, but we must respect the wishes of our legator. Our new PhD Bursary funding is one of the ways that we will be putting this legacy to good use. 

Alopecia UK is an unusual charity compared to other alopecia charities around the world. The USA, Canada and Australia all have alopecia charities that are focused solely on alopecia areata and do not cover different types of alopecia, such as androgenetic alopecia and scarring alopecias. At Alopecia UK, we are very much aware that the impact of hair loss can be the same regardless of which type of alopecia you are experiencing. We want to be here for anyone affected by any type of hair loss and we try to do this. We do not want people to feel like they do not have anywhere to turn. And we want the alopecia community in the UK to be one that is supportive and inclusive of all types of hair loss.

Not only do we find ourselves in an unusual position of both Big Pharma interest and a significant restricted legacy, it has always been the case that those in touch with Alopecia UK has predominantly been those with alopecia areata, totalis and universalis. Around 90% of those we’re in touch with have alopecia areata, totalis and universalis versus around 10% with other types of hair loss. This can be another reason why it feels like there is such a focus on alopecia areata. So much of the content we put out on our website and social media is about alopecia areata because it is people with this type of hair loss who are in touch with us the most, and more willing to share their stories. We would LOVE to increase representation across the other types of hair loss but it is a challenge, similar to the challenges we face ensuring representation of men’s experiences and those from minoritised groups. If anyone reading this can help us to increase representation by sharing their own experience, please get in touch!

We expect in the next couple of years, especially on the research side of our activities, Alopecia UK will continue to seem particularly focused on alopecia areata and we recognise that this is likely to feel very frustrating for those with other types of hair loss. In an ideal world, we would have Big Pharma running clinical trials for androgenetic alopecia and scarring alopecias too, and we would also receive further large sums for research without any restrictions on how they can be spent. It is our intention, longer-term, to seek funding to encourage more research on other types of alopecia and we hope we will be successful in highlighting the need for greater research into all types of hair loss.