Have you and your consultant tried and failed to get access to a much-needed birdshot uveitis treatment, such as the biologic treatments adalimumab or infliximab?
If so, this is a call for help directed to English and Welsh birdshotters who have tried unsuccessfully to gain approval to use these specialised treatments through Individual Funding Requests (IFRs). Currently, IFRs are the only way that we can hope to receive these treatments. We believe that the present situation is that nearly all IFRs are being turned down.
NHS England is currently consulting on four of its ‘generic’ policies. These are policies to commission treatments outside the normal annual commissioning cycle. We need to influence this process.
Genetic Alliance UK wants to submit a response to the NHS consultation that truly represents the experiences of the rare and genetic disease community.
Please tell us about your funding experiences via the following link that takes you to Genetic Alliance UK’s short survey:
https://www.surveymonkey.co.uk/r/IFRcallforevidence
Thank you.