Proposed guidance risks the sight of thousands

Draft Guidance

Today (15 July 2011) NICE has issued draft guidance on a treatment, which if left unchanged could lead to thousands of people with diabetes needlessly losing their sight. UK charities Juvenile Diabetes Research Foundation, Macular Disease Society and the Royal National Institute of Blind People (RNIB), are urging decision makers and the treatment manufacturer to work together and find a solution in the best interests of patients.

According to the final draft of the guidance, NICE will not recommend the drug Lucentis to treat the eye condition diabetic macular oedema (DMO) on the NHS. A key reason for the decision is that it is not cost effective when both eyes need treatment. Recognising that 36 per cent of patients require treatment in both eyes and that recommending treatment of one eye only would be unacceptable, NICE has decided to recommend against the use of Lucentis on the NHS for DMO. While we understand that under current NICE rules treating patients in both eyes is not cost-effective, we strongly believe that the impact of blindness is such that NICE, the Department of Health and the manufacturer must continue efforts to find a solution.

"We deeply regret...."

Helen Jackman, Chief Executive of the Macular Disease Society says: "As patient organisations we deeply regret that NICE has indicated that it will not approve Lucentis for the treatment of DMO on the NHS. It is a very difficult decision to accept, particularly for those patients who have not responded to laser treatment and now have no other treatment options.

"We urge NICE, the Department of Health and the drug manufacturer to work together to agree a solution in the best interests of patients, before final guidance is issued. Without urgent action this decision could lead to thousands of people losing their sight unnecessarily."

-ends-

To speak to a person with DMO or for more information, please contact RNIB media relations team on 020 7391 2223 or email pressoffice@rnib.org.uk

Notes to editors

Treatment for DMO

Current treatment for DMO is with laser, which can stabilise a patient's vision. However, not all patients respond to this treatment and their sight continues to deteriorate. Lucentis is currently the only alternative licensed treatment, and has been shown to improve the sight of some patients.

About NICE

NICE are the National Institute for Health and Clinical Excellence. They appraise drugs for use within the NHS. Drugs do not have to be approved by NICE to be made available to patients on the NHS. PCTs each follow their own policies on a wide range of drugs. However once a drug has been appraised and guidance issued patients across England and Wales can expect equal access to treatment, thereby avoiding a postcode lottery.

Our organisations

Juvenile Diabetes Research Foundation: www.jdrf.org.uk
Macular Disease Society: www.maculardisease.org
Royal National Institute of Blind People: www.rnib.org.uk

Last updated: 15 July 2011

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