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NICE refuses to release survival data for breast cancer drug

Britain’s National Institute for Health and Care Excellence (NICE) is refusing to release overall survival data for the breast cancer drug Palbociclib.

The pharma company Pfizer had provided the clinical trial data when NICE was trying to determine whether the drug should be given to NHS patients with advanced breast cancer.

Responding to a Freedom of Information request by TranspariMED, NICE refused to release the data, claiming that it had been provided by the company in confidence, and that release of the information was likely to prejudice the commercial interests of Pfizer.

“It was marked AIC [academic in confidence] by the company, as it has not yet been published,” NICE explained. Across Europe, few (if any) health technology assessment agencies recognise an “academic in confidence” category of classified information.

In Germany, this data would have automatically been made public.

Emma Robertson, a secondary breast cancer patient from London who is currently taking Palbociclib, said:

“NICE’s refusal to publish this information makes it very difficult for patients and their medical teams to determine whether or not Palbociclib could be beneficial. Patients living with advanced breast cancer deserve to have access to all the information about the limited number of treatments that are offered to them.”

NICE recommended Palbociclib for funding by the NHS in December 2017. In line with established practice in the sector, UK taxpayers are not being told how much the NHS is paying for the drug.

TranspariMED is challenging the decision by requesting NICE to conduct an internal review.

Founder of TranspariMED, Till Bruckner, said:

“NICE enjoys a well-deserved reputation for being a global leader in transparency. This makes NICE’s refusal to make this data public especially disappointing. Clinical trial data that indicates whether or not a drug may prolong cancer patients’ lives should not be kept secret. Patients have a right to access all relevant information on the medicines that they are taking.”

Breast cancer is the most common type of cancer in the UK. About one in eight women are diagnosed with breast cancer during their lifetime. Advanced breast cancer is currently incurable.

If you are a legal professional and would like to explore the possibility of taking NICE to court to force it to release this data, please get in touch.

Please note that TranspariMED takes no position on whether or not Palbociclib should be offered to patients with advanced breast cancer. The scientific debate surrounding the drug is complex. This blog never offers medical advice.

Note: This blog was written based on research conducted by TranspariMED as part of a grant awarded by HealthWatch UK, an independent British charity. The Campaign for Freedom of Information provided valuable advice on formulating the request for an internal review. The content of this blog is the sole responsibility of TranspariMED, and should not be taken to reflect the positions of HealthWatch UK or of the Campaign for Freedom of Information.

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