Whilst NICE recommendations for new treatments for severe alopecia areata are a very positive step forward for people who are seeking treatment, we appreciate there will likely be some mixed feelings in our community. We know that not everyone with alopecia areata is seeking treatment, and we know that some people in our community have different types of hair loss, so the NICE recommended treatments are not available to them. 

In this short piece we want to reflect on the diversity of experiences in our community, in the hope that by sharing, people will feel like their feelings are valid. It will hopefully encourage us all to keep in mind the different views that might be held by community members regarding treatments specifically.  Hopefully this will mean we are respectful of the view of others and remember not to push our own personal thoughts and feelings onto others, something that is especially important if interacting in our peer support spaces.

“I don’t have alopecia areata”

Our community is made up of people with different types of alopecia, including but not limited to androgenetic alopecia, telogen effluvium, frontal fibrosing alopecia, lichen planopilaris, central centrifugal cicatricial alopecia, and traction alopecia. When there are news stories about new treatment options, but they're not recommended for the type of alopecia you have, you can be left feeling like you have been overlooked and ignored. If you have a type of alopecia other than alopecia areata and are feeling frustrated that there isn’t a new treatment available for you, we want to say that we hear your frustrations and share in them. We want there to be NICE-recommended treatment options available for people with other types of hair loss, and we hope to see increased options in the future.

"I have mild or moderate alopecia areata"

Many people with alopecia areata do not have severe alopecia areata. This page explains how the severity of alopecia areata is graded. It can feel particularly challenging to know that new treatments exist but not meet the criteria to be able to try them. We hope that there will be further treatments developed in the future for mild to moderate alopecia areata. 

“I like having alopecia”

Not everybody with alopecia is looking to get their hair back. Some people within our community have not just accepted their hair loss but have embraced it. These individuals can be great role models, advocates and help to raise much-needed awareness. It’s important that if you’re in this group, you understand and respect that not everyone with alopecia feels this way, and that some will wish to try new treatment options. We also ask that those seeking treatment recognise that not everyone is seeking treatment and that even those who are confident with their alopecia, might feel a little unsettled with a big media splash about new treatment. These people might find themselves at the receiving end of intrusive questions about whether they are going to try get their hair back, or why they are not trying to get their hair back.

“The waiting list to see a dermatologist is 2 years!”

We know that dermatology waiting times are unacceptably long in some areas of the UK. We recognise that there is no easy fix for this huge NHS challenge. We also know that not everybody in the UK is facing the same waiting times. It can be difficult to learn that some people are being seen by a dermatologist much quicker than you are. We hope in our peer support spaces that we can recognise this and appreciate the difficult emotions that some may be experiencing whilst waiting to see a specialist.

“I really want to try a new treatment, but I can’t.”

Some people in our community will want nothing more than to try a new treatment option. However, there will be reasons why they cannot. It could be that they have risk factors such as having cardiovascular disease or being at greater risk of blood clots or cancer. If there is a reason that you might not be able to try a treatment, it will be difficult to hear a ‘No’ from your dermatologist. It can then be challenging to see others in the community try the treatment for themselves. We should all try to remember that there are people in our community who would love to try further treatment options but there might be a reason why they are unable to.

“I have a cure for my alopecia areata”

We encourage everyone in our community to adopt the language of ‘treatment’ or ‘medicine’ rather than ‘cure’. The clinical trial data for the JAK inhibitor medicines show that once a patient stops taking the medicine, it is most likely that hair will fall out again. A little less than half of those taking a JAK inhibitor medicine will have a successful outcome, and if a patient is successful with a JAK inhibitor treatment, the trial data shows it’s only likely to work as long as you are taking them. We are keen for our community to be as clued up as they can be about what something is, and what it isn’t. We have written a piece which goes a bit further to explain why JAK inhibitors are a treatment option and not a cure which you can read here. 

We hope this page has helped to reflect on the importance of the consideration and care we give to each other.  We believe we have one of the most caring communities in the country, and we thank everyone for doing their bit to help keep it that way.

A reminder of ways you can connect with people in the alopecia community for peer support:

• Private Facebook groups
• Local face to face support groups
• Online support meetings
• Regional and national events
• The Alopecia UK website, packed with information including personal experience blogs

Alopecia UK advocates for both fairer treatment pathways, and for living well with alopecia. Whether one, or both, of these is a priority for you, we are here for you.