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An English primary care trust (PCT) that refused to fund sight saving treatment for an 84 year old war veteran agreed to reconsider its decision this week after it was threatened with legal action.
Oxfordshire Primary Care Trust said it would look again at the case of Dennis Devier, whose legal challenge is being funded by the charity the Royal National Institute of Blind People (RNIB).
The charity accuses the trust of operating an illegal blanket ban on providing the drugs despite its own stated policy of treating “exceptional” cases, pending full guidance from the National Institute for Health and Clinical Excellence (NICE).
Mr Devier, from Henley, Oxfordshire, who is the main carer for his disabled wife, has wet, age related macular degeneration; Paget's disease; and diabetes, and he is already blind in one eye.
The trust refused to pay for antivascular endothelial growth factor drugs, which can slow sight loss from wet, age related macular degeneration. One drug, Macugen (pegaptanib), costs about £10000 (€15000; $20000) a year, and the other, Lucentis (ranibizumab), about £12000.
Steve Winyard, the charity's head of campaigns, said, “Oxfordshire PCT has told Dennis that for him to be eligible for sight saving treatment he must be an ‘exceptional case.' In our view he is.
“Oxfordshire PCT claim to be operating a policy where they consider treatment on an individual basis, but as far as we understand they have not funded a single case of [this] treatment. Dennis has had his appeal turned down three times now. If Dennis isn't an ‘exceptional case,' then my question to Oxfordshire PCT is, ‘Who is?'” Mr Winyard said that the trust had 70 patients who might benefit from the treatment.
Primary care trusts in England and Wales are formulating their own policies on the drugs while waiting for final guidance from NICE, which is expected in September. Its draft guidance last month recommended a total block on pegaptanib. It said that ranibizumab should be funded only for patients with a specific type of the wet form of age related macular degeneration—about 20% of the total. Patients to be treated would also have to have the condition in both eyes, and it would be for use in the less affected eye only.
Mr Devier, a former air force flight engineer, has spent more than £8000 of his savings on private treatment. He says that if he loses his sight completely he will be unable to care for his wife, who is also in her 80s and can hardly walk.
Mr Winyard added, “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.
“We know PCTs across England and Wales are denying treatment to thousands of patients who are forced to either find the money to pay for the drugs privately, or go blind.”
Yogi Amin, Mr Devier's solicitor, said, “We have made initial approaches to the PCT, which has agreed to review its decision. This is a positive move but we would ask the PCT to act quickly to allow Mr Devier the treatment his doctor has prescribed and recommends for his condition.”
The condition is the leading cause of sight loss in the United Kingdom, with 26000 new cases each year.