18th May 2023

Alopecia UK is extremely disappointed and dismayed, that the draft final guidance from The National Institute for Health and Care Excellence (NICE) is not to recommend baricitinib for routine commissioning on the NHS as a treatment for severe Alopecia Areata. Studies show that alopecia has devasting effects on people’s lives, with higher risk of isolation, agoraphobia, anxiety disorders, depression, self-harm and sadly even suicide. We have presented this evidence to NICE as part of their consultation.

It seems particularly unfair and inequitable that NICE did not recommend baricitinib for alopecia areata when they have recommended it for use in atopic dermatitis (eczema). This seems as though there is a suggestion that alopecia areata does not impact patients as much as another skin condition like eczema. We question the cost-effectiveness comparators that justify this inequality and will be submitting an appeal to NICE.

Sue Schilling, CEO of Alopecia UK said,

Baricitinib is the only MHRA-licensed treatment, although it is not approved by NICE and so not readily available from the NHS. With very few effective treatments for alopecia areata, long waiting lists for dermatology appointments and a postcode lottery for access to treatments, baricitinib offers real hope as an effective treatment to enable hair regrowth and not having to endure a lifelong auto-immune condition and a visible difference, and the very real struggles that come along with that.  We believe that people with severe alopecia areata deserve the opportunity to have a treatment that can enable hair regrowth.

We now hope that the drug manufacturer, Lilly, will continue to engage with NICE and to make the case for baricitinib to be made available to those patients with alopecia areata who need it.

You can be confident Alopecia UK will submit an appeal.  We are putting forward our experiences of living with alopecia, our expert patient stories and, thanks to some biomedical and healthcare professional volunteers, our views on the clinical and cost effectiveness data being assessed. We hope to see Lilly, NICE and the NHS really working for people with alopecia, and ensuring that best supportive care includes these new, effective medicines which can result in hair regrowth and hence improve the quality of lives of people with this lifelong visible difference.

Alopecia UK is registered as the Patient Organisation stakeholder with NICE, in support of the patient voice as part of the health technology assessment. You can read our most up to date article on this topic here. You can find out more about alopecia areata and baricitinib in our media factsheet here.