Victory for RNIB as NHS England reverses decision to prevent sight saving treatment to children with rare eye condition

Post date: 
Thursday, 19 November 2015

RNIB has welcomed the decision by NHS England to publish its commissioning policy recommending the use of Humira (adalimumab) in children with severe refractory uveitis.

Earlier this year NHS England had refused to fund anti-TNF treatments (Humira and Remicade) for patients with severe refractory uveitis. RNIB, along with a number of other organisations, campaigned against this decision and highlighted the impact it would have on children and adults with the eye condition.
Dr Maria Dawson, RNIB Eye Health Campaigns Officer, said: "We are very pleased that NHS England has now published its commissioning policy recommending the use of Humira in children with severe refractory uveitis.
"We have been campaigning on this since July. The decision will come as a huge relief to the parents who were deeply worried about their children not responding to standard treatments and losing further sight.”
However, restrictions remain for the children who do not respond to Humira and need access to the alternative treatment of Remicade and no decision has been made for adults with severe refractory uveitis. RNIB is urging people to sign a petition to help redress this.
She added: “RNIB believes it is very important that all patients are given full access to the full range of sight saving treatments available."
In addition to campaigning RNIB also referred children affected by the decision to law firm Leigh Day who subsequently wrote to NHS England outlining the potential unlawfulness of the policy. 
Merry Varney from Leigh Day, who had challenged NHS England over its policy issued in July to refuse funding, said: "The decision by NHS England to refuse funding for sight saving treatment for these children was we believe flawed. Having threatened legal action on behalf of a young boy needing Humira, we welcome this new policy and the hope it will bring to not only our client, but also other children with severe refractory uveitis who did not respond to standard treatments.
"It is imperative that NHS England adopt fair and transparent procedures in relation to commissioning services and treatments and provide clear reasons for the decisions they make, so that patients can understand how decisions are made that affect their rights to treatment."
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