Patients denied 'blindness' drug

Thousands of patients are missing out on a treatment which could save their sight, a group of charities has warned.

A survey found 90% of NHS trusts are refusing to fund treatment for the most common cause of blindness in the UK.

A drug called Macugen was licensed in May this year for the treatment of wet age-related macular degeneration (AMD).

But many trusts are waiting for recommendations from the National Institute of Health and Clinical Excellence due in 2007.

AMD is the leading cause of sight loss in the UK and affects a quarter of a million people.

A report from AMD Alliance UK found that even when a PCT has funded Macugen, not all patients have benefited.

PCTs are refusing to fund a licensed treatment, even though it could save patients' sight

Steve Winyard

In one region covering eight PCTs, out of 450 potential patients, only 36 received the drug.

Other PCTs are waiting until a patient has lost their sight in one eye before considering treatment, which costs £10,700 to £25,000 for a year.

The Alliance, made up of Royal National Institute of the Blind, Age Concern England, the Macular Disease Society, NALSVI, Fight for Sight and the Wales Council for the Blind estimated 16,000 people a year in England will go blind because the treatment isn't available.

Lucentis, another anti-VEGF drug, is due to be licensed in early 2007.

The wet form of AMD, which can cause a loss of central vision and altered colour perception, affects 10% of sufferers but accounts for 90% of blind registrations due to the disease.

It can cause blindness in as little as three months.

Although it mainly occurs in the over 65s, occasionally younger people can be affected.

It is not known what causes it but risk factors include age, smoking and family history.

Macugen targets VEGF (vascular endothelial growth factor), a protein that helps the formation of new blood vessels.

If there is too much VEGF in the eye, it can cause a proliferation of blood vessels and fluid leakage, the characteristics of wet AMD.

Steve Winyard, Head of Campaigns at the Royal National Institute of the Blind (RNIB) and co-author of the report, said, "This report confirms what we have long suspected and what wet AMD patients have been telling us - that PCTs are refusing to fund a licensed treatment, even though it could save patients' sight.

'Condemned to blindness'

"Fifty people a day are being condemned to blindness - the actions of the PCTs are simply unacceptable.

"Health officials are only fooling themselves if they think they can save money by refusing to fund anti-VEGF treatments. The cost to the state of supporting someone with sight loss far outweighs the cost of treatment."

But the Royal College of Ophthalmologists warned that funding of treatment was not the only issue.

They said since the new drugs need to be injected every four to six weeks, a plan to cope with extra demand needs to be implemented urgently.

Brenda Billington, president of the college said: "There are an estimated 25,000 new AMD patients every year - every patient will need to be seen eight to 12 times a year - and these patients are likely to be reliant on regular injections for several years.

"The Royal College of Ophthalmologists calls on the government to think carefully about the need to increase clinic space, and provide new ophthalmologists, nurses, optometrists and clerks to cope with demand.

"Otherwise, administering these new and effective new drugs will be at the expense of looking after other patients with cataracts, glaucoma and diabetes."