Recently I attended Britain Against Cancer, a one day conference in London where politicians, clinicians and patients come together to talk about the issues surrounding cancer policy in the UK.

I attended this conference as I wanted a chance to explain why CML patients need access to a wide range of treatments.  Regular readers will know that I am currently being treated for Chronic Myeloid Leukaemia (CML) with dasatinib. Whilst other treatments, including imatinib and nilotinib, are available having been approved by NICE, dasatinib is only available on the Cancer Drugs Fund (CDF).

I am concerned that, across the country, patients have variable access to dasatinib and other non NICE approved treatments through the CDF.  It is important that CML patients have access to a wide range of treatments as for some, neither imatinib nor nilotinib prove clinically effective or patients find the side effects too severe.  This is the reality for CML patients and I wanted to make sure that attendees at the conference were aware of this.

The first speech I heard was from the Labour Shadow Health Secretary Andy Burnham and what struck me most were his comments about the Cancer Drugs Fund (CDF).  The CDF is designed to give patients access to cancer drugs that have not been approved by NICE and this is the route that many CML patients take in order to access dasatinib.  In his speech Burnham explained that he did not support the continuation of the CDF and he did not view it as a funding priority for the NHS.

I disagree with this.  My personal experience of the CDF is that patients can receive drugs that they otherwise would not. If the CDF is removed and nothing is put in its place then there is a risk that access to CML drugs will get worse, not better.

I raised this issue with Andy shortly after his speech and explained that it is critical that patients have access to as broad a range of treatment options as possible.  He agreed that this is indeed important and requested that I write to him following this conference.  I will of course write to him and make this case in more depth.

After taking part in a session about including the patient voice where I highlighted the need for patients to be involved with cancer networks, we took a break for lunch.  Refuelled and refreshed I then heard from Sir Mike Richards who was the former National Clinical Director for Cancer and the now Director of Domain One of the NHS Outcomes Framework.  I explained to him that it was important that not only were the right treatments available, but that the NHS didn’t lose sight of treating rarer cancers such as CML.  Sir Mike agreed and pointed to the recent figures on CML, as reported on this blog post , which showed that the deaths from CML have halved.

We then heard from the Secretary of State Jeremy Hunt who gave a wide ranging speech that focused on the importance of improving patient outcomes and even covered dementia.  It was interesting to hear him speak so much about dementia, as it is expected that this will be a core focus of the Government in the run up to the next general election in 2015.  I managed to catch up with him afterwards and made clear my views about the importance of the CDF.  He told me that whilst the Government is very proud that 23,000 people have currently received treatment through the CDF, he could not yet give further details as to whether the scheme would be extended post 2014.  I intend to write to Mr Hunt to raise this issue again and to ensure that access to CML drugs is at the forefront of his thinking in the run up to the next election.

I found Britain Against Cancer to be a very rewarding experience and I welcomed the opportunity to express the views I raise on this blog, in person to politicians and key decision makers.  I am keen to use the momentum from this event to further my campaigning activity and I will continue to post details on this blog.    Kris

Kris Griffin meets Andy Burnham MP

Meeting Labour Shadow Health Secretary Andy Burnham MP at the Britain Against Cancer conference.

LINK: All Party Parliamentary Group on Cancer – website