Charity request for help: GCA patients in England

[Fran_Benson]

Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again.

However, a recent study (TOC STOP) of patients with GCA living in England, who had completed a course of tocilizumab, showed that up to one third relapsed within one year of stopping the drug and up to half relapsed within two years.

We think it's important for patients with GCA to be able to access repeat treatment with tocilizumab in the event of GCA relapse and would like to ask NICE and NHS England to change their guideline.

In our letter to them, we would like to include real life experiences of members living in England who have completed a course of treatment with tocilizumab. This patient voice is really important, and if you match the criteria to participate and would like to help, all you need to do is click on the link below and answer a few short questions.

If you do not live in England, have not had tocilizumab, or you are still taking tocilizumab then please do not fill out this survey.

docs.google.com/forms/d/16O...

Important note

Please give as detailed answers as you can in the word count i.e. several sentence answers, especially to question 2, with details of any flares you've had. We will be selecting answers that bring to life the experience and make an argument for access to retreatment.

Named or anonymous

Although we will need to collect your email in case we need to come back to you regarding any of your answers, you can choose whether your responses in the letter appear with your name or are anonymous.

Thank you in advance if you are able to help - and happy Christmas.

Fran at PMRGCAuk