Today, the Health Committee – a cross-party group of MPs appointed to scrutinise the Department of Health’s policies – published a report on its inquiry into NICE – the body that determines which treatments the NHS should pay for.
The Committee looked at how the drugs regulator works, ahead of the appointment of its new chair, Professor David Haslam.
Their final report makes a number of recommendations relevant to cancer patients, so here’s a detailed look at what it says, and what we think about it.
We submitted a written response to the inquiry and our chief clinician, Professor Peter Johnson, gave evidence to the Committee in person (watch a video here, or read a transcript here).
In our responses, we said that Value-Based Pricing – a new proposal for pricing medicines on the NHS, which we’ve blogged about before – needs to work for cancer patients, and we expressed concern that the Department of Health hasn’t adequately involved patients in developing its plans, nor published any details of how the new system will work in practice.
This is very important, because once the new system is in place it could be very difficult to change if it doesn’t work. And time is running out – the new scheme is set to begin in under a year – on 1st January 2014.
So we were glad to see the Committee echo our concerns, saying:
We do not regard it as acceptable that the arrangements for value-based pricing have still not been settled and that those who will have to work with those arrangements are still unclear about what value-based pricing will mean in practice.
It also called for details to be published by March this year at the latest.
The Cancer Drugs Fund
The report also focuses on the Cancer Drugs Fund – a £200m-a-year pot of money set aside to pay for new cancer drugs that NICE has not approved. The intention is that Value-Based Pricing will replace the Cancer Drugs Fund in 2014, but exactly how this will happen is also unclear.
Introduced in 2010, the Fund has helped more than 25,000 patients to get drugs they may not have otherwise received.
But, as Professor Johnson told the Committee, we haven’t seen any data showing the impact these treatments have had on patients. We’re expecting this information to be published soon and we want to see the findings incorporated into the new pricing system, to make sure cancer patients are getting the treatments that are best for them when the Fund ends in 2014.
So, again, we think the Health Committee is spot on when it says that we need to see data from the Cancer Drugs Fund and that this should be fed into the Value Based Pricing system.
We also agree that the Government needs to make sure that patients currently taking drugs paid for by the Fund will continue to receive these after it ends – and we need details of how this will work.
Clinical trial data
A third area the Committee looked at was access to data from clinical trials. This is in response to concerns that researchers do not always publish the results of clinical trials, meaning that we don’t know how effective treatments really are.
Their report recommends professional and legal obligations to make sure that regulators such as NICE have access to all the research data about the drugs they are assessing. It also recommends that the pharmaceutical industry develops a new code of practice to ensure transparency.
This isn’t just an issue for the pharmaceutical industry. As a large funder of cancer trials in the UK, we know that making sure the results of trials are published is really important. The Science and Technology Committee – which does the same job as the Health Committee, but for science – is holding an inquiry into this issue, and we’ll be responding to that too.
This is a complex area, so it’s important that any action the Government takes is well thought through, aligns with actions taken at an international level, and doesn’t inadvertently affect the ability to conduct research that will benefit patients.
Overall, then, this is a helpful report with a number of good recommendations. We’ll be watching the Department of Health carefully over the next few months to make sure it acts on the Committee’s advice. We want to be absolutely certain that Value-Based Pricing will work for cancer patients – before it’s too late.
- Heather Walker is a policy manager at Cancer Research UK
Henry Scowcroft January 16, 2013
Hi Katie, we’re so sorry to hear of your situation, and we understand how frustrating and difficult things must seem right now. You might like to talk to one of our information nurses – if so, you can contact them on 0808 800 4040 or email them here. We wish you all the best and our thoughts are with you.
Cancer Research UK
Katie Scarbrough January 16, 2013
I am 31yrs old with two small kids aged 4 and 7. I have cancer. Even though the biopsy showed bowel as the primary sourc, docs dont know where its coming from as bowel chemo hasnt worked. As my cancer is on my liver and ovaries, i was switched to ovarian chemo. This hasnt worked and docs say that my cancer isnt behaving normally. I am currently in hospital and was told the devastating news that without a possible clinical trial i could have weeks. Why cant NICE and the NHS work together better? Do I not deserve to try drugs which are out there to help prolong my life? I didnt ask for this and times against me to find something, its not fair!