NICE reject appeal for sight saving drug

30 November 2011

Four UK charities have joined forces to urgently campaign for a potentially sight saving drug to be made available for people with diabetic macular oedema (DMO) after the National Institute for Health and Clinical Excellence (NICE) turned down an appeal for it to be used on the NHS.

The Macular Disease Society, Diabetes UK, JDRF and the Royal National Institute of Blind People (RNIB) are urging the manufacturer of Lucentis, Novartis, to rapidly agree a Patient Access Scheme with the Department of Health and NICE in order to reduce the cost of this treatment to the NHS and ensure the maximum number of people with DMO can benefit from the treatment without delay.

At least 50,000 people in the UK are affected by DMO, a serious eye condition which can lead to sight loss as a result of fluid leaking from the small blood vessels in the eye. Traditionally, laser treatment has been the standard treatment for DMO on the NHS, yet this only stops vision from deteriorating further. Lucentis, given in the form of an injection in the eye, however, is the first licensed treatment to improve vision in people with sight loss due to DMO.

NICE announced its decision not to recommend Lucentis as a treatment for people with DMO on the NHS in July on the basis of cost-effectiveness. The charities appealed this decision, arguing that NICE failed to act fairly as key patient organisations and clinicians were not given the opportunity to comment on significant new evidence submitted by the drug manufacturer which may have led to incorrect conclusions being drawn in NICE's final decision.

The charities are now calling on Novartis, the Department of Health and NICE to quickly agree a patient access scheme to ensure patients are able to access the treatment.

Helen Jackman, CEO the Macular Disease Society, said: “We are disappointed because this treatment makes such a difference to the lives of people with sight loss caused by diabetes. We do urge the manufacturer and the department of health to find a solution – it is not acceptable just to deny people access to a treatment that works.”

Simon O'Neill, Director of Care, Information and Advocacy at Diabetes UK, said: “Naturally we are disappointed that NICE has turned down our appeal as we believe this treatment is vital to prevent people from needlessly losing their sight. Diabetic retinopathy is the leading causes of blindness in people of working age in the UK and the human impact of this stretches far beyond the financial costs.

“It is now of upmost importance that the drug manufacturer works with the Department of Health and NICE to negotiate the costs of this treatment so people with diabetes are still able to access it without detracting from other vital NHS services, such as Diabetes Specialist Nurses and eye screening.”

Sarah Johnson, Director of Policy and Communications at JDRF said: “Our concern is that NICEs' decision to turn down our joint appeal will directly impact thousands of people with Type 1 diabetes. People with thecondition have a right to access safe and effective treatments to protect them from the serious complications of their condition, one of which is Diabetic Macular Oedema.We supported research into Lucentis during the early stages of the drug's development, and were disappointed by NICE's decision not to recommend the drug for use on the NHS. It is now vital that the Department of Health and NICE work together with the drug manufacturer to ensure the best outcome for people at risk of losing their sight.”

Steve Winyard, RNIB Head of Policy and Campaigns says: "As a patient organisation, we are deeply frustrated that a full review of all the available information has not been allowed. Patients at risk of losing their sight have a right to expect that clinical experts and patient organisations have a chance to review all the evidence on a treatment. We firmly believe that some of the assumptions made about the cost-effectiveness of the treatment were wrong. In particular, there is a very strong case for providing Lucentis to those patients with thicker retinas who are unable to benefit from existing laser treatments. A second consultation would have allowed this to be examined. However, we now hope that a patient access scheme can be agreed swiftly, so that patients with DMO are not left to needlessly lose their sight."

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