Yesterday, as part of their blog series on the Cancer Drugs Fund, the Nuffield Trust posted a blog from Health Policy Fellow, Helen Crump, outlining some of the difficult questions surrounding the Fund.
The Cancer Drugs Fund clearly isn’t perfect – as Helen points out, it creates a perverse incentive for drug companies not to reduce prices – but it’s far better than what we had before. At a time when the CDF is under the public spotlight, it’s useful to remind ourselves about the problems that the Fund was set up to address, and recognise that while it is by no means the finished article, it has gone some way to plugging a gap.
Why was the Cancer Drugs Fund introduced?
Over the four years since its introduction, we have seen more than 55,000 cancer patients access new drugs through the CDF. That is over 55,000 people who have been able to access clinically effective cancer drugs without worrying about the prohibitive costs. Of this number, around 63 per cent of the successful CDF applications have been for drugs rejected by the National Institute for Health and Care Excellence (NICE), and around 22 per cent for drugs still to go through the NICE process.
The underlying problem, and one that still needs fixing, is that the NICE appraisal process tends to exclude drugs designed for smaller patient populations – so called ‘orphan’ and ‘ultra-orphan’ drugs – because they are not considered cost- effective. Problems around data and how drugs are priced have made it hard for NICE to approve some drugs. The CDF has been a safety net picking up some of these drugs, but now that safety net is also under strain.
Critics of the CDF, and of any cancer specific drugs funding mechanism, will ask ‘why just drugs?’ or ‘why just cancer?’, and these are valid questions. But the reality is that the CDF has improved access to treatment for cancer patients in England.
Where has the CDF been successful?
Before the CDF was created, cancer patients were forced to make substantial top-up payments in order to access new drugs. Many suffered crippling financial hardship as a result – sometimes losing their homes. Worse still, those who couldn’t raise the money were denied access to drugs which could have saved or extended their lives. This is simply immoral in a nation proud of a health system that is free at the point of need. That is why the NHS, NICE, pharmaceutical companies, patients, and the third sector must come together to look for a solution that is sustainable in the long term.
The CDF is most important and impactful for those who suffer from rarer cancers or need specialist treatment because new drugs for these patient groups often fail to get NICE approval. The vicious cycle of lower prevalence, poorer data, and poorer outcomes, make it more difficult to demonstrate the value of drugs for rare cancers, and to justify their often high price. As one uterine cancer patient told us:
I was devastated when funding was refused for the chemotherapy drug trabectedin, which my oncologist believed was the only cancer treatment left for me. He felt my application wasn't judged fairly because it didn't take into account my condition is exceptionally rare. One of the reasons was ‘poor evidence to demonstrate its clinical effectiveness’. Yet, the only way it can be gathered is by funding more patients like me and producing statistical studies.
Uterine cancer patient
The CDF was set up as a response – albeit temporary – for patients like this. It has been expensive, but it has changed lives, and given people with cancer hope and opportunity. Despite the fact it can’t continue in its current form, is overspent, taken up with expensive drugs for more prevalent cancers and not effectively bringing innovative drugs to baseline commissioning sooner, the CDF has provided respite in the uphill challenge of access to effective and necessary cancer drugs.
Benefits beyond the QALY
Ben’s story: an exercise enthusiast who had started training for his first marathon, Ben was diagnosed with bowel cancer in early 2012. After two operations and two rounds of chemotherapy, Ben and his wife Louise were told he had a prognosis of 6-12 months. A final option of Cetuximab was offered although it was unavailable on the NHS. After a successful application to the CDF, Ben started treatment in June 2013, and is still on it now. As his condition improved Ben even started running again. He’s now run seven marathons, and as of October 2014 not only had the cancer not progressed, but had shrunk. Ben would not be running - and may not even be alive - if it hadn’t been for the Fund.
Stories like Ben’s illustrate how improved access to drugs makes a real and priceless difference to people’s lives. It’s sometimes easy to forget the human dimension in the arcane health economic debates about QALYs and cost-utility ratios. However, things do have to change.
This year 2.5million people in the UK will have cancer, by 2020 one in two people are expected to experience cancer in their lifetime, and so we simply cannot rely on the CDF to continue bridging the gap as demand continues to increase. The whole drugs appraisal system, including NICE, Government, patients, pharmaceutical companies and the cancer community, have to come together to develop a fair, transparent and sustainable solution.
The recently announced Cancer Strategy Taskforce provides us with an opportunity to do this. We can’t go back to the situation we had before the CDF, instead we need to look for improvements and new ways forward. The different parts of the system - the NHS, NICE, charities, patients, and pharmaceutical companies need to come together around this issue, and over the coming months we need to carry that momentum and work hard as a community to design a better, fairer, technology appraisal system that improves outcomes for all patients
Duleep Allirajah and Keyan Salarkia are Head of Policy and Assistant Policy Analyst at Macmillan Cancer Research respectively. Please note that the views expressed in guest blogs on the Nuffield Trust website are the authors’ own.
This blog is part of a series on the Cancer Drugs Fund. In this series you can read another perspective from Myeloma UK as well as an introductory blog from the Nuffield Trust.