Appeal
Today (29 July 2011) four UK charities launch an appeal against a NICE (National Institute for Health and Clinical Excellence) decision that could lead to thousands of people with diabetes needlessly losing their sight.
Diabetes UK, Juvenile Diabetes Research Foundation (JDRF), Macular Disease Society and the Royal National Institute of Blind People (RNIB) are calling for the drug Lucentis to be made available on the NHS to treat the condition diabetic macular oedema (DMO). However, NICE proposes not to recommend it, judging that it is not cost-effective enough. The charities are arguing that they and other key stakeholders have not been able to comment on significant new evidence about the sight saving drug submitted to NICE by the drug's manufacturer. The charities are calling for a proper consultation allowing stakeholders to submit their evaluations.
"risk of losing sight"
Steve Winyard, RNIB Head of Policy and Campaigns says: "Patients at risk of losing their sight have a right to expect that a full review of all the available information takes place. However, NICE has failed to consult with experts from patient organisations on this new evidence, nor have they sought advice from clinicians who treat people with this condition on a daily basis. We strongly believe that some of the assumptions they have made about the cost-effectiveness of the treatment are wrong."
Helen Jackman, Chief Executive of the Macular Disease Society says: "This drug offers a real step change from the currently available laser treatment. It prevents further sight loss and in many cases even improves vision. We understand that NICE must consider the cost effectiveness of any new drug, but stakeholders must be able to consider the evidence and inform their decision making."
Patient Access Scheme
The charities are also urging the drug manufacturer, the Department of Health and NICE to reconsider the option of a Patient Access Scheme. The new treatment offers a significant advance on the current laser treatment so these discussions should continue to ensure that a maximum number of patients can benefit.
Simon O'Neill, Director of Care and Advocacy at Diabetes UK, says: "Lucentis offers people with DMO hope as it is the only licensed treatment proven to not only prevent sight loss but also improve vision in many cases.
"This decision means more people with diabetes will needlessly lose their sight. This will make it far more difficult for them to manage their diabetes and put them at increased risk of other devastating complications, vastly expensive both in terms of human and economic costs.
"We are urging the Department of Health, NICE and the manufacturer of Lucentis to seek a solution that is in the best interests of the patient as it is vital people with diabetes are able to access this treatment on the NHS."
Sarah Johnson, Director of Policy and Communications at JDRF says: "Patients with diabetic macular oedema must receive safe and effective treatments for their condition. We supported research into Lucentis and were very disappointed by NICE's decision. It's vital that people with diabetes benefit from this drug and we urge NICE, the Department of Health and the drug manufacturer to work together to make this happen."
-ends-
To speak to a person with DMO, a spokesperson or for more information, please contact Yashoda Sutton in 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.
About Patient Access Schemes
Patient access schemes allow pharmaceutical companies to propose pricing agreements designed to improve cost effectiveness, which enable patients to gain access to high costs drugs or technologies.
Our organisations
Diabetes UK: www.diabetes.org.uk
Juvenile Diabetes Research Foundation: www.jdrf.org.uk
Macular Disease Society: www.maculardisease.org
Royal National Institute of Blind People: www.rnib.org.uk