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Being a voice for patients

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26 Feb 2016

The Cancer Drugs Fund

The Cancer Drugs Fund (CDF) is a pot of money that was set up by the government five years ago as a temporary measure to fund access to drugs that were too expensive for routine use on the NHS. Around a dozen blood cancer treatments are only available to patients through the CDF. It’s due to be replaced with a new system in July 2016, because it’s widely accepted that a more permanent and robust system is needed.



Blood cancer drugs delisted

In September, we had the devastating news that several treatments would be ‘delisted’ (no longer be available to patients through the NHS) to free up money for new treatments.





So we wrote to the National Clinical Director for Cancer to ask for the medicines to be reinstated, helped secure 30,000 signatures for a supportive online petition, and in partnership with seven other blood cancer charities, we wrote an open letter to the Prime Minister and Secretary of State for Health in The Times.


In early November, we were delighted to hear that two of these medicines, ibrutinib and brentuximab, used to treat CLL and three types of lymphoma, will continue to be available on the NHS.





The next steps

We’re delighted that these two medicines were kept on the CDF. However, there was disappointment that other blood cancer medicines weren’t kept on. It’s clear that the current system for providing cancer drugs on the NHS isn’t working, and a long-term, sustainable solution is required. Following a 12-week consultation on proposals to reform the CDF - which closed on 11th February - NHS England has now approved a new system.

Although it's still unclear what the new system will look like in practice, essentially the reforms will make CDF funding available for drugs that look like they will be cost-effective, but don’t have enough data to support their case. For these treatments, the CDF will fund them for up to two years while additional data can be gathered, and a final decision on whether to approve the drug for NHS patients can be made. While the principle behind the new funding stream is welcome, there's still much uncertainty as to what will happen to new treatments that don’t require additional data.

To make sure we represented all blood cancer patients in this consultation, we talked to healthcare professionals, other blood cancer charities, the NHS themselves, the pharmaceutical companies and of course, patients, to ensure that we make the case for the NHS to provide all effective blood cancer drugs.

Many of the other groups we have spoken to share our concerns about the uncertainty in the new system – a view which was strongly communicated to the NHS in our consultation response. Over the next few months we'll be working to assess the true picture of these reforms and the impact the will have on blood cancer patients' access to the most effective, new medicines.

Chronic lymphocytic leukaemia patient Andrew Law has hugely benefited from one of the drugs that were reinstated.

"After I was initially diagnosed in 2008 at just 42 years old, I underwent chemotherapy in 2010 and then again in 2012 due to an early relapse. After just one year I had relapsed again and a more aggressive chemotherapy was suggested along with a bone marrow transplant. It was then I began treatment with ibrutinib. 15 months later I’m delighted to say that I have minimal side effects, the results are amazing and my bloods are practically normal. Life is good thanks to ibrutinib."

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