There was widespread outrage amongst groups representing the blind this June after NICE controversially ruled to restrict the availability of a treatment which could prevent people from going blind.
The government watchdog has recommended that the photodynamic therapy for the treatment of age-related macular degeneration should only be made available to patients suffering from AMD in both eyes. Additionally only the eye with the best remaining vision is to be treated - meaning that the patient will go blind in the other eye.
The leading cause of blindness for people over 50 in the Western world, AMD is a degenerative, retinal eye disease that causes loss of central vision, leaving only peripheral vision intact. Early detection is essential so that options for treatment, rehabilitation and support services can be administered quickly enough to make an impact.
The preliminary decision by the National Institute of Clinical Excellence to restrict the NHS prescription of Visudyne, a type of therapy for the treatment of AMD could mean people going blind despite the fact there is a therapy available to treat them.
The condition has two forms: dry and wet. In the wet form - considered the more aggressive and serious of the two - new blood vessels grow beneath the retina (choroidal neovascularisation or CNV) from which fluid and blood can seep leading to scarring and permanent loss of vision. Photodynamic therapy (PDT) involves the infusion of a light-sensitive agent followed by the light activation of drugs such as Visudyne which then destroys the CNV lesions.
The Macular Disease Society said that patients whose circumstances compelled them to rely upon the NHS were being condemned by NICE to "Russian roulette" for their one good eye: "An accident, sudden haemorrhage, or failure to get a clinic appointment within a matter of days, may take away at a stroke life's quality as they know it."
Steve Winyard, Head of Public Policy at the RNIB calculated that: "With up to 5,000 people able to benefit from PDT each year there is a real risk that as many as 15,000 to 20,000 people could needlessly lose their sight over the next three to four years because of the NICE recommendations."
The Macular Disease Society described the NICE decision as "Alice in Wonderland economics", which "acknowledging that the personal costs of mental anguish, the despair of imposed social isolation, or the added burden for family and carers are not easily quantified in cash terms, NICE has decided they are best ignored altogether. The modest, but precisely measurable, costs of treatment, on the other hand, can be reflected through the mirror as unaffordable."
The Liberal Democrat Shadow Health Secretary Dr Evan Harris accused the government of using NICE to "to hide behind" rather than be honest about health rationing: "This is a clear example of rationing, in that to afford this treatment, other treatments would have to be cut by our cash-starved NHS. The government should own up and admit that people are going blind needlessly because of a lack of money, and not for lack of a treatment. Many of these drugs, including Visudyne, are so new that the necessary information to make sensible decisions on their effectiveness just isn't there.
