Joint Fight for Sight/Birdshot Uveitis Society News Release

This week, the Birdshot Uveitis Society (BUS) and Fight for Sight released a joint news release and already we have received some positive Press coverage, both online and in the print version of Optician Today. We are hopeful that opticians will notice this and then go on to find out more about the rare eye condition of Birdshot Uveitis as a result of this small mention: http://www.opticianonline.net/fight-sight-awards-funding-b…/. We cannot emphasise enough how important publicity like this is for people with Birdshot. An optician’s quick realisation of the potentially serious eye problem of Birdshot will help a person to get a speedy referral to a specialist and the chance of appropriate testing and treatment.

‘In Touch’ – BBC Radio 4

Many BUS members may remember Rea Mattocks who co-founded the Birdshot Uveitis Society with Annie Folkard. Rea has recently been sitting on the UK Clinical Reference Group for Ophthalmology for Specialist Commissioning, trying to ensure that treatments which are needed for Birdshot do not get overlooked. Specialist Commissioning is the part of the NHS which organises the setting-up and delivery of services for those people with rare, complex and costly diseases.

The Clinical Reference Group for Ophthalmology is asking for funding for the biologic anti-TNF drugs infliximab and adalimumab (also known respectively as Remicade® and Humira®) for those people whose autoimmune uveitis cannot be controlled with corticosteroids and immunosuppressants. BUS is worried that the use of infliximab and adalimumab may be turned down on the grounds of cost and because there is not the necessary clinical ‘robust evidence’ to show that these drugs work in treating Birdshot.

Rea was recently interviewed on the BBC Radio 4 In touch programme titled “Macular disease drugs; Anti-TFN drugs” broadcast on the Tuesday 25th November. Rea speaks about the biologic anti-TNF drugs and talks about her difficulties over being prescribed them; the notion that in the long run, the cost of providing the drugs makes much better economic sense than the risk of a patient losing their job because their immunosuppressive and steroid medications are making them too ill to work; and the risk of a patient losing sight because the other ‘standard’ treatments that are available are not working for them.

As a patient, Rea is trying to raise the profile of this issue to ensure that NHS England does not turn down the request that biologic anti-TNF drugs should be in the permitted arsenal of drugs available for hard-to-treat cases of Birdshot.

It is interesting to note that in Scotland, these drugs are permitted and there is a recognised standardised guideline that is followed: http://www.sun.scot.nhs.uk/Standards%20of%20Care.html.  See page 9, paragraph  2.3 where it says “Adults with uveitis requiring greater than 7.5mg a day of prednisolone long-term in addition to, or are intolerant of systemic immunosuppression, have access to biologics within 10 working days”

This is an extremely important issue for all English and Welsh patients with Birdshot because if it is not accepted, treatments which are being used successfully for Birdshot in the US – Remicade® and Humira® – will not be permitted for use for Birdshot in England and will no longer be a possible treatment option unless patients are already currently receiving them.

We gather that NHS England’s decisions on this matter are to be announced in December.

Birdshot Uveitis Society

29th November 2014