Doug Naysmith, MP for Bristol North West, joined leading charities at a reception in Parliament to launch a report into the state of funding for people with wet age-related macular degeneration.  According to the report 16,000 people a year in England are unnecessarily losing their sight because health bodies are refusing to fund a treatment which could help.

Primary Care Trusts (PCTs) are responsible for funding anti-VEGF drugs, the only treatments for all types of wet age-related macular degeneration (AMD) – the leading cause of sight loss in the UK. Currently, only one anti-VEGF drug is licensed in the UK – Macugen, which became available in May 2006.

However, the report, suggests that 90 per cent of PCTs are not currently funding the treatment6 and even when a PCT has given funding, the number of patients involved has been small. In a region covering eight PCTs, for example, out of 450 potential patients, only 36 received the drug in a three month period.

Doug Naysmith MP said, “I am shocked to learn that people all over England are unnecessarily losing their sight when a treatment is available that can prevent blindness through wet AMD. I will be contacting our PCT to find out whether they are providing this vital treatment for local people at risk of going blind through 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 patients have been telling us: that PCTs are refusing to fund a licensed treatment, even though it could save patients’ sight. Fifty people a day are being condemned to blindness - the actions of the PCTs are simply unacceptable.”

Shockingly, the report reveals that most PCTs are waiting until a patient has lost their sight in one eye before considering treatment. Others are waiting for guidance from the National Institute of Health and Clinical Excellence (NICE), due in August 2007, before they fund the treatment – yet the Department of Health advised that patients should not be refused treatment on this basis10.

And the situation is unlikely to improve in the near future, because most PCTs have not made plans to fund anti-VEGF treatments. This is despite the fact that treatment options are expected to grow: Lucentis, another anti-VEGF drug, is due to be licensed in early 2007.

The report from AMD Alliance UK also shows that leaving people to go blind impacts upon more than their physical health – sight loss has a devastating impact on mental and emotional wellbeing9. In some cases, the effect on quality of life is comparable to having cancer or HIV, the report shows. The sight loss associated with wet AMD and the threat of blindness also increases depression and the risk of suicide.

AMD Alliance UK is calling on PCTs to expand their services and provide speedy access to anti-VEGF treatments now.

Steve Winyard continued: “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.”

Doug Naysmith added: “We have a real chance now to turn wet AMD, which devastates so many lives, into a largely treatable condition. But only if it is detected and treated promptly.”