PCTs hiding behind NICE decision over drug, says blindness charity
pharmafile | May 22, 2006 | News story | |Â Â Â
A UK blindness charity says patients are being denied a new drug because PCTs are exploiting a delay in NICE's appraisal.
The RNIB has said it would be an "absolute scandal" and "totally wrong" if patients are unable to receive Macugen, a new drug for the treatment of age-related macular degeneration (AMD) while prescribers await NICE's judgement on the treatment.
NICE is not due to publish its verdict on Macugen until autumn 2007, and the charity says PCTs are using this uncertainty to stop patients receiving the treatment before then.
Many drugs suffer this so-called 'NICE blight' while awaiting appraisal, but the charity is determined to address the Macugen situation immediately.
Remarkably, the RNIB began its campaign for greater access on 18 May, the same day Macugen was launched - a move which the charity says is necessary to avoid a repeat of delays around another treatment, Visudyne.
A spokesman said the charity was absolutely determined to ensure Macugen did not suffer the same fate as Visudyne, a laser PDT treatment for disease, which took nearly four years from its launch to receive approval from NICE.
Macugen, which was licensed in February, is creating hope among campaigners and patients, as trial results suggest it not only halts the progression of wet AMD, it can also actually improve the eyesight of sufferers.
Steve Winyard, head of campaigns at the RNIB, said PCTs were giving a "blanket no" when patients were recommended for the drug. The reason given is that NICE has not yet approved it and therefore the drug cannot be given.
He stressed: "This is absolutely not the correct position for PCTs. They are sheltering behind NICE. The correct position is that if the specialist recommends treatment and the drug is licensed, which this is, it should be considered."
Mr Winyard said Macugen, which is injected into the eye, would cost about 4,000 a year per patient.
"We are all well aware of the enormous cost pressures the NHS is under, yet this treatment, if we set it against someone who is blind, is actually very good value for money, as it would save people's sight," he added.
The RNIBs urgency to get NICE approval for the drug was echoed by the ABPI. Director General Dr Richard Barker said: "The aim of NICE is to encourage the faster and more consistent uptake of effective new treatments for the benefit of patients. Since its inception, outcomes have been mixed. The ABPI would welcome improved efficiency and transparency in the topic selection process, renewed efforts to overcome 'NICE blight' and quicker implementation of guidance across the health service."
The European Commission approved Macugen in February, but its efficacy has not been proven beyond two years.
