Justice in sight for AMD sufferers
07/04/2008
An announcement from the National Institute for Health and Clinical Excellence (NICE) could kick-start a new era in the treatment of the UK’s leading cause of blindness, says the Royal National Institute of Blind People (RNIB). The long awaited Final Appraisal Document (FAD) on anti-VEGF drugs means that all patients in England and Wales with wet Age-related Macular Degeneration (AMD) could soon get sight-saving drug Lucentis on the NHS.
The FAD marks the final stage of the approval process before NICE issues final guidance – expected June 2008. Today’s draft guidance, published after extensive consultation, is NICE’s final decision unless there is an appeal, which can only be made on limited, procedural grounds. Under today’s proposals, Primary Care Trusts (PCTs) in England and Local Health Boards in Wales will soon have to fund sight-saving drug Lucentis for patients with wet AMD, whether their first or second eye is affected.
RNIB has been leading a two-year long battle to make new sight-saving treatments available to patients with wet AMD on the NHS.
Steve Winyard, Head of Campaigns at RNIB said: "Today we move a step closer to achieving justice for the 19,000 patients in England and Wales who develop wet AMD each year. It is a devastating condition that can rob sight in as little as three months, if left untreated. So there must be no further delay. PCTs do not need to wait for final guidance before choosing to provide treatment to desperate patients in their care. By acting now, they can play a vital part in ending a national scandal that has seen thousands needlessly robbed of their sight."
RNIB spearheaded a mass campaign against NICE in June 2007, generating a record response from over 13,000 people outraged at the draft guidance which limited the use of anti-VEGF drugs. The draft guidance proposed that anti-VEGF drugs be made available on the NHS only to 20 per cent of patients who had already lost sight in one eye and had developed wet AMD in their second eye.
In response, NICE performed a U-turn in December last year, issuing revised draft recommendations for consultation, stating that the sight-saving drug Lucentis should be available to all patients who develop wet AMD in either eye. Despite this, many PCTs still follow restrictive funding policies, based on NICE's earlier draft recommendations, to decide who qualifies for treatment.
Steve Winyard added: "Countless patients have already been either robbed of their sight, or stripped of their life savings, to pay for private treatment. Today marks a crucial turning point in the way patients with wet AMD will be treated. NICE must stay on track and carry these proposals through into final guidance in June.
"Anyone who can benefit from sight-saving treatment must now receive it - immediately, and without question. This guidance means that there is no longer anywhere left to hide for those PCTs who have, until now, stubbornly refused to fund sight-saving treatment."
Today's breakthrough could throw a lifeline to patients like 77 year-old Colin Valder, from Brighton, who has wet AMD in his right eye and the untreatable dry AMD in his second eye. Colin, who is being denied treatment by Brighton and Hove City PCT that could stop him from going blind, says: "This is great news for thousands of patients like me who are fighting a long and hard battle to get sight saving treatment on the NHS. It is criminal that people are being left to go blind, despite the billions that have been pumped into the health service.
"Treatments are available, but only a handful of PCTs are giving them to patients. It makes me extremely angry to think that people are being penalised because of their postcode. Time is running out to save my sight and I hope the PCT changes its policy before its too late."
If Brighton and Hove City PCT adopts NICE’s proposals, Colin will automatically receive treatment.
WhileLucentis will be available to patients on the NHS, NICE has not recommended another anti-VEGF drug Macugen, for wet-AMD, despite calls from RNIB to recommend its use in its final guidance.
NICE is expected to issue final guidance in June 2008. This will make a final ruling on the funding of anti-VEGF treatment and will state how long PCTs and Local Health Boards will be given to fully implement their guidance.
RNIB and the Macular Disease Society have an advocacy service called Action for AMD Treatment. 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.