BUS met with NHS England in September along with a number of other eye charities and eye specialists, to try and find out what was going on and to lobby for this treatment to be available for severe refractory forms of uveitis where other treatments have failed. We were told at this meeting that NHS England would be reviewing the situation once they had received the published results of the recent trials on children and adults. In the meantime:-
- Everybody already being prescribed Humira or Infliximab, will continue to have access to these drugs.
- The current policy does NOT apply if the uveitis patient has a secondary disease eg if a child or adult is diagnosed with JRA and uveitis, they can still be prescribed Humira or Infliximab.
- The policy only applies to uveitis patients in England.
- The Individual Funding Request (IFR) route is still available for patients who are significantly different from other patients with uveitis. Blinding disease alone will not make a patient eligible for an IFR. In reality this means a request for individual funding will most likely be unsuccessful.
- The clinically critically urgent (CCU) process remains open, but the criteria is usually based on having a life threatening disease, and so again, this process is unlikely to be successful for now.
We recently heard unofficially that:
“The policy for the treatment of severe refractory uveitis for children has been revised and this was resubmitted last week for an in year policy development. Publication of the adult VISUAL trial data following external peer review is a key quality assurance for NHS England, and we will wait for these results to be published to revise the adult policy according to the study entry criteria and outcomes. We hope this information will be available in early 2016 and we will then be able to submit the revised adult policy as part of the NHSE in year policy development process.”
This means that for the time being, as far as people with Birdshot Uveitis are concerned, there is little chance of being prescribed these drugs for their Birdshot, unless they have some other secondary condition such as rheumatoid arthritis or Crohn’s disease where the drugs are already approved. Once the results of the VISUAL study on adults are published in a peer reviewed journal, NHS England will be asked to reconsider. I am afraid for the time being it is watch this space….