For the NICE consultation process to review the JAK inhibitor drug ritlecitinib as a treatment for alopecia areata, we seek an expert patient to support the process. We would like to offer diverse views, so if you are a man, a parent of a child aged 12 or over with alopecia, or people from a minoritised ethnicity, then we’d especially like to hear from you.

An expert patient will need to meet the following criteria:

  • Be happy to share your experiences of alopecia areata, including how it has affected your life, how you have been treated by the NHS, what treatments you may have taken.
  • Be confident to read through technical and medical data including the clinical trial data submitted to NICE from the pharmaceutical company. You do not have to be a scientist, but you do need to be willing to understand as much as you can and comment on the data you see. Alopecia UK will bring their experiences from the baricitinib appraisal process for you to learn from too.
  • Be willing to sign the NICE and Alopecia UK Non-Disclosure Agreements that prohibit you from sharing any material or meeting content before it is made public.
  • Have the time to do the reading, attend Zoom/Teams meetings with NICE and Alopecia UK, and most importantly be available for the full day on the date of the committee meeting to represent patients with alopecia, to support the case for supplying ritlecitinib from the NHS. We estimate the time commitment to be as follows:

- 15 hours per appraisal committee meeting submission (timings dictated by NICE), including reading reports and data, and writing the questionnaire responses. You may need to be available for 2 meetings.

- 2 hours per week training/educating self/meetings with AUK for the whole appraisal period.

- 7.5 hours on the day of the appraisal (during working hours and dictated by NICE)

- Plus a number of hours in the weeks following the appraisal to prepare for the outcomes, and possible follow up.

  • Be willing to submit patient expert questionnaires to NICE in your name, expressing your views and sharing experiences on the specific issues they wish to explore.
  • Be comfortable to speak publicly and be named as an expert patient. You will be visible and named in the committee meeting, and what you write in the questionnaire to NICE will also be made public in the consultation papers listed online.
  • Be thick-skinned! If you take on the role of expert patient, you are really putting yourself out there. This requires strength and bravery, but also a thick-skin. The alopecia community is made up of a diverse group of voices. ‘You will never be able to please all of the people, all of the time’. As we have seen with the baricitinib process, you may be personally criticised in social media forums for not saying the right thing, not fighting hard enough, not being the right person etc. You need to be the type of person who does not take criticism personally.
  • Be 18 years old or over and have severe alopecia areata, or a parent of an adolescent with severe alopecia areata, and live in England. You, or your child, do not need to have tried or be on a JAK inhibitor drug, although we do feel it will be beneficial if you, or your child, have tried one or more treatments for alopecia areata to be able to explain any weaknesses with those treatments.
  • Be able to leave anger and emotion at the door. Whilst we appreciate that this is a very emotive subject, an angry person who wants to shout or criticise NICE with emotion is not what is needed. We need someone who can argue, advocate and campaign with facts, strength and reality.
  • We cannot emphasise the time, reading, and preparation commitment point enough, so we are adding it again. If you suddenly change your mind or cannot attend, we lose the voice of an expert patient on the day. NICE will not allow us to send a stand-in at the last minute.

If you feel you have got what it takes to be an expert patient, please email [email protected] with a brief introduction of your experience with alopecia areata and why you feel you’d be a good fit.