Birdshot Uveitis Society members based in England may be aware we have been awaiting the results of the Specialist Commissioning process which has been going on over the last year. This is the process whereby government will decide which drugs are available for different rare conditions depending on the evidence that is available which shows that the drugs are effective.
We had been led to believe that the outcomes would be announced in December. The recent news is that the decision making process had been delayed as a result of the threat of legal action by a patient group, (nothing to do with eyes or ophthalmology, but some other rare condition), who felt that the process was unfair.
In the meantime we’d be interested to hear from any patients with Birdshot Uveitis in the UK who have been turned down for treatment with either Humira or Infliximab and whose consultants are struggling to control the inflammation in their eyes with the more usual treatments. It would be interesting to get some idea about the numbers involved and to see what can be done to help.
Please do get in touch with BUS info@birdshot.org.uk and let us know if you have been experiencing this difficulty.
My inflammation has never been under control after trying prednisilone, azathiprine, methotrexate and now 2gms of Cellcept. My consultant says I must try 3gms of Cellcept a day before he can apply for funding for Humira. In the meantime I am suffering with unwanted sideaffects of the medication and the inflammation is causing irreversible damage to my sight.