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Cancer Drugs Fund – De-listing to take effect

written by

Leukaemia Care, Charity

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The Cancer Drugs Fund (CDF) was introduced in 2011 and has enabled over 55,000 cancer patients in England to access life-extending, or potentially life-saving, treatments which are not routinely available within the mainstream NHS in England.

The CDF was set up to enable patients in England to access drugs that had not been approved by NICE (the National Institute for Health and Care Excellence). This may be because they were either: yet to be assessed, currently undergoing assessment or had been assessed and determined to be effective but not cost-effective.

It was announced on January that 16 drugs (used in 25 indications) are to be removed from a list of drugs approved for funding via the CDF, with these changes taking effect from today. These new and innovative treatments have the potential to offer patients more time with their families and an improvement in their quality of life, yet patients will now be unable to access them.

Tony Gavin, Director of Campaigning and Patient Advocacy at Leukaemia CARE said:

 “When the CDF was introduced in 2011 it was a politically motivated, temporary, ‘sticking plaster’ attempting to provide a solution to the problems with the NICE process, which prevented patients from accessing innovative, clinically effective drugs, particularly in rare disease areas such as blood cancers.

“Whilst the CDF has been a very effective interim option, enabling over 55,000 patients to access treatment, the current de-listing process demonstrates that the problem is once again coming to a head and patients will be adversely affected by these changes. Patients are suffering now and will continue to suffer until an appropriate solution to this original problem is found.

“We object to patients falling victim to flaws in the NICE process, which prevents patients from accessing treatments entirely, or in a timely manner, with the potential to extend their lives and offer them an improvement in their quality of life.

“NHS England has received a lot of criticism following this de-listing process, for performing a thankless, almost impossible task handed to them by government, but the pharmaceutical industry as a whole must also carry their share of responsibility for these enforced, unpalatable decisions.

Following today’s de-listings and with the CDF set to end in 2016, it is now time to find an effective, complete, long-term solution to the problems with the NICE appraisal process that were present in 2010 and are still as evident now.””

We have spoken to patients to get their views on what these changes will mean to them:

Kris Griffin, chronic myeloid leukaemia patient, said:

"I'm horrified by the removal of any life enhancing, changing or saving drugs from the CDF. This new age of cancer treatment is being stymied by poor decisions, over-baked bureaucracy and a group of stakeholders who are unable to make decisions that are in the best interests of the patient.

“Cancer patients, like me, will continue to fight for access to treatment under the guiding principles of the NHS. We fight cancer every day and we'll fight these decisions every day."

Katherine Sinfield, chronic myeloid leukaemia patient, said:

"It's really important that patients take a stand and fight for the right to protect the drugs set for de-listing on the CDF. It's also important as politicians from all parties rally for our support in the forthcoming General Election that they keep their promises.

“I appreciate as much as everyone else that there are financial constraints which need to be met but I don't agree with accountants making decisions on peoples' lives. If it was their mother, father, brother, sister or themselves - would they still press ahead for the de-listing of these drugs?

“I am lucky in that the drugs I currently take to keep my leukaemia at undetectable levels are not those facing the axe. But I have been in a position where these 'magic bullet' tablets fail to achieve the desired outcomes and an alternative has been needed. What happens if the current drug I am taking fails and I need to switch to a tablet which is on the list of those to be axed?

“I am not fighting for myself. I am fighting on behalf of all of those cancer patients facing an uncertain future. I am campaigning on behalf of those who have yet to be diagnosed and who would have been prescribed one of these de-listed drugs.

“Cancer is not a one tablet suits all case study. What suits one patient doesn't suit another and the cancer drugs fund offers choice. Take away this choice and you leave hundreds of patients with an uncertain future. Fighting cancer is hard enough without having to fight the Government as well".

A summary of the changes for blood cancer patients is available here.

If you are affected by any of these changes and would like to speak to somebody, please call our CARE line on 08088 010 444.