"We won't pay for drugs to save your sight," say Brighton and Hove

13/02/2008

The Royal National Institute of Blind People (RNIB) and the Macular Disease Society (MDS) have joined forces to help a man win a desperate battle to save his sight, as his local NHS trust is refusing to pay for the sight saving treatment he urgently needs.

Colin Valder, 77, from Brighton, faces an agonising race against time to save his sight, following a refusal by Brighton and Hove City Primary Care Trust to pay for vital treatment that could stop him from going blind.

RNIB and MDS have taken up Colin’s case and are making an urgent appeal to the PCT to reverse its decision.

A distraught Colin, who is also undergoing treatment for prostate cancer, said: "The thought of losing my sight absolutely terrifies me. I’m angry as treatments are available, but is seems saving money is more important to the PCT than saving people’s sight. I just hope the PCT will have a change of heart before it’s too late for me."

Colin has the sight threatening eye condition wet Age-related Macular Degeneration (AMD) in his right eye and dry AMD – for which there is no cure and will lead to blindness over time - in his left eye. With the sight in his right eye rapidly deteriorating, Colin is making an urgent appeal to his PCT to agree to fund his treatment on the NHS.

Fearing that the wet AMD will spread to his left eye - patients with the condition have a 50 per cent chance of it developing in their second eye - Colin has been forced to raid his life savings for private treatment. But with the money fast running out, he will not be able to pay for a full course of treatment.

Having had his initial application for funding rejected, Colin is now appealing to the PCT’s Exceptions Committee, but he must prove ‘exceptional circumstances’ to qualify for treatment – a process that can be long and incredibly stressful.

Sight saving drugs Lucentis and Macugen have been licensed for the treatment of wet AMD, but a restrictive funding policy, adopted by many PCTs, has meant that only a small minority of patients have qualified for treatment.

RNIB Campaigns Manager, Barbara McLaughan, said: "This is a very distressing situation for Mr Valder to be in. Many patients are facing a race against time to save their sight because PCTs, like Brighton and Hove City, are operating such a restrictive funding policy.

Barbara added: "It’s shameful that patients are having to jump through hoops to prove they deserve sight saving drugs on the NHS. The only alternative is to pay for private treatment - which for many is not an option - or risk blindness. Rather than turning its back on Mr Valder, the PCT could throw him, and many other patients, a lifeline by adopting a much fairer policy."

Under the PCT’s funding policy, 80 per cent of patients with wet AMD are automatically excluded from treatment, as they must first have gone blind in one eye, before being considered for treatment in their second eye.

But draft guidance, issued recently by the National Institute for Health and Clinical Excellence (NICE),* means Colin would automatically receive treatment, if this was implemented by the PCT. It recommends that the sight saving drug Lucentis should be available to patients with wet AMD, whether it is their first or second eye that is affected. While the draft guidance has already been adopted by some PCTs, others, like Brighton and Hove City, are refusing to do so.

RNIB and MDS are calling on the PCT to throw a lifeline to Colin, and other patients throughout Brighton and Hove, by agreeing to switch to the new draft NICE guidance now, rather than waiting for final guidance later in the year.

Tom Bremridge, Chief Executive of the Macular Disease Society, said: "This is a disgraceful way to treat Mr Valder and clearly, it is causing him a great deal of anguish. The PCT’s decision not to fund his treatment is putting Mr Valder at unnecessary risk of losing his sight. Given the extra cost of supporting people who go blind, PCTs are mistaken in thinking they will save money by denying patients treatment for AMD."


The RNIB and the Macular Disease Society have launched an advocacy service called Action for AMD Treatments. Any patient needing help accessing licensed anti-VEGF treatments should call RNIB’s Helpline on 0845 766 9999 or the Macular Disease Society Helpline on 0845 241 2041.