PATIENTS in England living with a rare eye condition may be forced to move to Scotland to “save their sight”, the country’s leading charity for the blind has said.
The Royal National Institute of Blind People (RNIB) said it was "totally unacceptable" that NHS England had decided not to recommended routine use of the drugs Humira and Remicade for patients with a severe form of the inflammatory eye condition, uveitis.
Both drugs are routinely available north of the border and their use is standard practice in many other countries.
The charity is considering legal action to force a rethink, but medical authorities in England have concluded there was “not sufficient evidence” to recommend routine use.
Uveitis is one of the leading causes of sight loss in the UK, accounting for one in 10 Certification of Vision Impairment registrations. It can lead to loss of peripheral and central vision, or cause blurred or cloudy vision. Severe cases are rarer, but can lead to loss of sight.
Previously, some patients in England had been able to access Humira and Remicade through Individual Funding Requests (IFR) made by their specialists, but many have been unsuccessful, with patients describing the process as a postcode lottery.
After receiving a high number of IFRs, NHS England began reviewing the use of the drugs two years ago. Its policy document, published earlier this month has dismayed patients and campaigners.
Maria Dawson, the RNIB’s Eye Health Campaigns Officer said: “We have already heard from one patient who is considering a move to Scotland in a desperate bid to save her son’s sight.
“There will be many more patients worried about the financial and emotional impact of this decision.”
A trial of Humira for one group of paediatric uveitis patients, taking place in the UK, was stopped early because overwhelming evidence of the drugs’ benefit meant it was deemed unethical to continue giving some children placebo.
It costs a patient between £8,000 and £10,000 a year if they want to pay for the drugs themselves. Both Humira and Remicade belong to a group called anti-TNF treatments.
The Royal College of Ophthalmologists, which represents the UK’s leading eye doctors, said it was “deeply concerned” by the situation. A spokesperson said England was “now one of the few countries in the world that does not use anti-TNF treatments for uveitis.”
Nicola Davis, whose daughter Olivia, now 15, was diagnosed with severe refractory uveitis at the age of nine, said the family were “devastated” by the decision. Davis, who founded the charity Olivia’s Vision to support uveitis sufferers, said she had received numerous calls from worried parents.
Olivia, who is blind in one eye, began taking Humira two and a half years ago, after other drug treatments failed. Since taking the drug, which her parents have had to self-fund, she has been in remission.
A spokesperson for NHS England, which has responsibility for assessing and commissioning specialist treatments, said that the decision had not been made on cost grounds.
Patients will still be able to apply for an IFR decision through their specialist, but the RIB said NHS England’s new stance means they are only likely to get the drugs if they have another serious health condition that could lead to them being considered a special case.
Two studies on the effectiveness of the drugs are expected to be published later this year, at which time it is understood NHS England may review its decision.
A Scottish Government spokesperson said: “Our first priority is to ensure that patients receive the essential medicines they need and as part of this we are committed to the development of integrated eyecare services so patients receive a good quality and efficient service.
“The Scottish Government has doubled the resources available to fund new medicines but recognise that the decisions in relation to other parts of the UK are a matter for the authorities there.”
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