Patients Denied Sight Treatment

Patients losing their sight have said they are being denied access to a drug which could stop them from going blind. Injections of the drug Lucentis are only being made available by a few Local Health Boards in Wales while clinical guidelines are prepared.

The National Institute for Clinical Excellence (NICE) has recommended it for limited use only in patients at risk of losing sight in both eyes. The assembly government has said it is unhappy with the draft guidelines.

NICE published the initial guidelines in June, stating that Lucentis should only be given to a small number of patients who had already lost sight in one eye and suffered from a specific form of wet age-related macular degeneration (wet AMD).

This meant that funding for the drug, which comes at a cost of at least £20,000 per patient, could only be granted to one in five patients. Doctors have said the drug can mean the difference between keeping sight and blindness for patients with wet AMD. The condition is the leading cause of sight loss in the UK, affecting about 250,000 people. There are 26,000 new cases each year.

Consultant ophthalmologist Chris Blyth said the drug stabilised vision for around 75% of his patients and a third got “significant improvements” in their vision. “It can mean the difference between carrying on working and giving up your job, and recognising your grandchildren,” he said.

According to the Royal National Institute of Blind People there are several patients in the Swansea area who have been refused funding for Lucentis. Mervyn Meredith is one of these. He lost sight in his left eye, then in May noticed it was starting to go in his right eye.

He was told about Lucentis which could save his sight – but that he would not be funded for it. “I am going to go blind and it is rapidly getting worse and worse,” said Mr Meredith. “If I lose my sight then I’ll get put on to the social services – they will have to spend their money on me.”

Research conducted by BBC Wales showed that most health boards were using the NICE draft guidance or only accepting patients on an individual basis. Many in north and west Wales are not being offered Lucentis at all. Full guidance on the drug is set to come in the autumn.

The assembly government has written to NICE expressing its concerns over limiting access – saying denying treatment creates more problems than it solves. Its letter states that the “psychological impact of depriving a potential patient of sight preserving therapy does not appear to be explicitly valued” in the current interim guidance.

Lucentis, and another drug which treats wet AMD called Macugen, have both been made widely available in Scotland.