Pay for the drugs or we go to court, says RNIB

The RNIB has pledged to fund legal action against a primary care trust unless it reconsiders its decision to refuse to pay for the drug treatment of an 84-year-old man whose sight is under threat.

The charity is supporting Oxfordshire pensioner Dennis Devier, who suffers from a condition called wet age-related macular degeneration, or AMD. The RNIB says Oxfordshire PCT has imposed an "illegal ban" on treatment for the condition with two new drugs, Macugen and Lucentis, that runs counter to its claim to consider funding treatment for "exceptional cases".

A spokesman for the RNIB said there had been over 70 requests for the drug in Oxfordshire, but none had been granted. He said Oxfordshire PCT was exploiting the fact that health watchdog the National Institute of Clinical Excellence was not due to deliver its final appraisal of the drug until September.

He said: "Dennis is an 84-year-old war veteran, blind in one eye, cares for his disabled wife, has diabetes and Paget's disease. If his case is not ‘exceptional' then what is? It is ludicrous and nonsensical and we are enraged by the situation."

The RNIB has instructed the law firm Irwin Mitchell to send a letter to the PCT detailing the charity's legal threats. Irwin Mitchell is the firm which successfully fought last year for breast cancer sufferers across England and Wales to be given access to Herceptin. The spokesman for the RNIB said the cost of the case could be as much as £15,000.

He added that this was the first time the RNIB had funded action or taken a PCT to court, although it had mounted a successful formal appeal in 2003 against a NICE decision not to recommend NHS funding for another wet AMD drug. He said the new drugs were recognised to be more effective.

The charity's head of campaigns, Steve Winyard, said Oxfordshire PCT was a particularly bad example, but not the only one. He said: "Oxfordshire is the first trust we are supporting legal action against, but we will be looking at every PCT's performance and will not hesitate to support further legal action against each and every PCT in the country if we believe they are acting illegally."

A statement from Oxfordshire PCT said the trust was working towards early introduction of the new drugs, but cautioned that healthcare had to be funded fairly, "taking into account who is most likely to benefit".

It confirmed that the pensioner's case would be reviewed next week following additional information received about his condition, and expressed disappointment that NICE's guidance for the treatment had been delayed. "Earlier publication would have helped us make these difficult decisions," it read.

The RNIB is also protesting against NICE's preliminary guidelines on Macugen and Lucentis, which the charity says could deny treatment to four out of five patients in England and Wales. Last Friday it took out an advert in the Daily Mail urging people to support the campaign as the end of NICE's consultation period approached on Thursday this week.


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