Charity considers legal action

The Royal National Institute of Blind People is considering legal action after a sight-saving drug is denied in England


The Royal National Institute of Blind People (RNIB) is considering taking legal action after sight-saving treatment, which is available in Scotland and Wales, has been denied in England.

NHS England has refused to fund the anti-TNF treatments, Humira and Remicade, for patients with severe refractory uveitis, meaning that no further patients will be able to access these treatments, unless they successfully secure an Individual Funding Request.  

RNIB eye health campaigns officer, Dr Maria Dawson, said: “The refusal by NHS England to fund the treatments for uveitis is totally unacceptable and we are considering legal action. They are available in Scotland and are proven to be effective.”

She added: "We have already heard from one parent who is considering a move to Scotland in a desperate bid to save her son's sight. There will be many more parents worried about the financial and emotional impact of this decision.”

Uveitis is one of the leading causes of sight loss in the UK, accounting for 10% of Certification of Vision Impairment registrations. If the condition is not treated properly, it can lead to glaucoma, cataract and cystoid macular oedema. 

Treatments for the condition currently available in England include steroids and immunosuppressants, which are not suitable for all patients. 

The RNIB is partnering with organisations such as Fight for Sight, Olivia’s Vision and Birdshot Uveitis Society to highlight the impact of NHS England’s decision. 

Founder of Olivia's Vision, a charity dedicated to helping uveitis sufferers, Nicki Davis, said: “We are devastated by this decision. We have had many calls on our helpline from desperate patients, worried about going blind.”

Ms Davis added: “We set up Olivia’s Vision when our nine-year-old daughter was diagnosed with uveitis. She has been on Humira for two years, and without it she would now be blind. We urge NHS England to reverse its decision."

Olivia’s Vision has launched a petition calling on NHS England to reverse its decision, which has already attracted over 7,000 signatures.  

To sign the petition, visit the Olivia's Vision website