Patient experience of off-label Janus kinase inhibitor use for alopecia areata in a cohort of 34 patients from a single UK practitioner: exploring changing trends in healthcare provision and access to drug treatments

Abstract We present data from a UK cohort of patients with alopecia areata (AA) who have sought Janus kinase inhibitor (JAKi) treatments prior to National Health Service funding. We have explored referral methods, access to consultations, and shared care in monitoring and acquisition of medication both from the UK and abroad. We have looked at the drugs and dosage, adjuvant therapies and response to treatment, and report data on side-effects and reasons for changing drugs or stopping treatment. Thirty-four patients (25 adults and nine children) self-referred to a UK-based private hair clinic for JAKi treatment over a period of 36 months. The median age of patients was 40 years (interquartile range 18–50). The patients sought treatment from a wide geographical area in the UK, with one patient living 400 miles from the clinic. Seventeen (50%) and 14 (41%) patients were prescribed baricitinib and tofacitanib, respectively, with three (9%) patients prescribed both. Nineteen (56%) patients had severe alopecia with > 95% hair loss. Social media, in particular a closed Facebook group, was an important source of referral and information on sourcing medication from abroad. Nine per cent of consultations were virtual (telephone/video). The cost of treatment varied from £100 per month to £1400, with a large difference between UK-sourced medication and that from abroad. Eight (24%) patients showed no scalp regrowth response to first-line treatment, despite dose escalation, with one subsequently experiencing total hair regrowth on swapping to a different JAKi class. One patient had to stop treatment after developing breast cancer. JAKi are an exciting and emerging treatment for AA that are yet to be widely prescribed by UK practitioners. However, the response to JAKi is not universal. Owing to the cost of private prescription, patients are choosing to source JAKi from abroad. Our study presents data on how the alopecia community has helped inform patients about treatment access.