We recently heard from Genetic Alliance who are keen to learn about people who have struggled to get humira to treat their uveitis. Here is an extract from their recent email to us:-
Genetic Alliance UK has been looking at access to medicine for rare disease patients. NHS England has provided us with a list of medicines requested through IFRs over the past year. One of these, Adalimumab (Humira), I believe could have been for patients with Uveitis.
I was wondering whether you have any information or case studies of your members struggling to access this medicine, and whether you would be willing to share it with us?
We are planning to do some policy work around this issue, so would be grateful for any assistance you can provide.
If you live in the UK and are able to help with this please do get in touch with BUS at firstname.lastname@example.org.