Change of heart from NICE will save the sight of thousands

By Tony Watts - Editor - 14/12/2007

The campaign to persuade NICE to make sight-saving drugs available to thousands of people has been won. The campaign – which has been supported by Mature Times – pointed out the heartlessness of a policy that meant a person would have to wait to lose the sight of one eye before becoming eligible for treatment.

Revised draft guidance on the drugs published today (14 December) by NICE (the National Institute for Health and Clinical Excellence) will throw a lifeline to thousands of people at risk of going blind, following a dramatic U-turn by the Institute.

The news has been warmly welcomed by the Royal National Institute of Blind People (RNIB).
 
RNIB's head of campaigns Steve Winyard said: “NICE has given thousands of people the best Christmas present they could wish for - hope that their sight might be saved. 26,000 people in the UK develop wet-AMD each year and there are desperate people across the country today being denied drugs that could stop them from going blind. These new recommendations mean that thousands could soon have their sight saved.”
 
Stringent draft recommendations from the drug rationing body published in June, proposed denying anti-VEGF treatments to 80 per cent of patients in England and Wales with wet AMD - the UK's leading cause of blindness.

However, in a second set of draft recommendations, issued today, NICE proposes that the sight saving drug Lucentis should be made available to treat the majority of patients with wet AMD, whether it is the first or the second eye that is affected.
 
The earlier guidance would have meant treatment for just one in five “lucky” patients - but only after they’ve gone blind in one eye.  Today, NICE's new draft guidance stated that the committee “… noted all the concerns raised by consultees and understood that most consultees felt that it would be unacceptable, and clinically inappropriate, to treat only the second affected eye.

“It was persuaded that treating only the second eye could result in losing the opportunity to preserve vision because the second eye could be affected by an untreatable cause of visual loss, or might not respond to treatment with anti-VEGFs."
 
Steve Winyard, RNIB’s Head of Campaigns, said: “NICE has recognised the weight of evidence and the strength of public opinion and performed a major U-turn. This is a tremendous victory for the thousands of people who demanded of NICE that they save sight, not money. After an overwhelming public outcry, NICE have finally thrown a lifeline to the thousands of patients who are routinely refused the sight-saving treatments they desperately need.”
 
NICE received a record response from over 13,000 people who were outraged at their previous recommendations to limit the use of anti-VEGF drugs (Macugen and Lucentis) to treat wet AMD in only 20% of patients.
 
Steve Winyard said: “While we broadly welcome these recommendations, we will be asking NICE to revise some of the detail in their guidance. For example, we'd like to see the threshold for eligibility lowered even more, so that everyone who can benefit from treatment can have it." (5)
 
While at this stage NICE is not recommending another licensed anti-VEGF drug, Macugen, for patients with AMD, RNIB will also be calling on NICE to make it available in its final guidance, as this would give consultants the choice of offering treatment to patients for whom Lucentis may not be an option.
 
Steve Winyard said: "RNIB will be urging NICE to carry through these recommendations in to final guidance as a matter of urgency. As they deliberate their final report, the clock is ticking for patients who risk going blind because they are being denied treatment by their PCT.” In the absence of NICE final guidance, each PCT has the responsibility of deciding their own criteria for treatment.
 
RNIB hopes that the latest appraisal from NICE will put much needed pressure on Primary Care Trusts (PCTs) to end the postcode lottery in relation to anti-VEGF treatments and make them widely available to all patients who can benefit from them now.
 
Ensuring patients with wet AMD have speedy access to anti-VEGF treatments is vital as the condition can lead to sight loss in as little as three months and requires prompt treatment if sight is to be saved.
 
Final NICE guidance on Lucentis and Macugen is expected in the first half of 2008.

Lorna Layward Research into Ageing Manager of Help the Aged, commenting on the decision, said: “Help the Aged regrets that it has taken so long to arrive, but strongly welcomes today’s recommendation by NICE that Lucentis can be used.
 
“Age-related macular degeneration is the biggest cause of blindness among people over 65 in the UK.  Lucentis is a potentially life-altering treatment for over 50,000 people who experience the more aggressive ‘wet’ form of the condition.
 
“Treatments and preventions for loss of sight could be accelerated if more funding was available for vital research.  Help the Aged is seeking donations to its biomedical Research into Ageing programme so that studies receive the funding they need.”