Together we will beat cancer


The Cancer Drugs Fund is never far away from the headlines, and recent weeks have been no exception.

The Fund is a £280 million-a-year pot, set up in 2010 by the Government to pay for patients in England to receive cancer drugs that haven’t been approved by the National Institute for Health and Care Excellence (NICE).

Today, NHS England announced a number of big changes to the way the Cancer Drugs Fund will work in future, including more consideration of the costs of the drugs on the list, and a few that might eventually come off it (more on this below).

Meanwhile, last Wednesday Welsh cancer patients handed their Government a petition of nearly 100,000 signatures, just before a debate took place in the National Assembly on the potential to establish a Cancer Treatments Fund for Wales. This follows a similar campaign in Northern Ireland as well as changes that have taken place to the way Scotland assesses new drugs.

You would be forgiven for wondering what on earth is going on. And with the pace of recent changes, we are certainly concerned that not much thought has been given to communicating what they might mean to the public and patients.

So with this latest round of developments, we thought we’d take stock of the current situation, and what might happen next.

Changes to the Cancer Drugs Fund in England

Back in August the Government announced that, due to increasing demand for newer cancer drugs, it would inject an extra £80 million per year into the Fund, increasing it to £280 million per year. It pays for drugs for around 2,000 new patients each month.

But given the current pressures on NHS finances, the Government and NHS England recognised that they would have to find a way to manage financial pressure on the Fund.

So, in October, they put forward three major proposals for consultation:

  • A new re-evaluation process would compare the clinical benefit of the drugs on the list, and potentially remove those with the lowest clinical benefit.
  • The cost-effectiveness of drugs, i.e. their benefit weighed up against how much they cost, would now be considered. Currently drugs paid for by the Fund are only assessed for clinical benefit.
  • Pharmaceutical companies will be able to make confidential cuts to how much their drug will cost the NHS in England, if they want the drugs to remain on the list.

So what did we make of all this? In our response to these ideas, we said we had some major concerns:

  • Although thousands of patients have received drugs via the Fund, there is no publicly-available analysis of whether they actually benefited from them – and we can’t get access to that data. A proper evaluation is crucial so that evidence generated from the Fund can benefit all patients, both current and future.
  • The Fund is becoming financially unsustainable, and this could ultimately detract from other important NHS services including those for other cancer treatments (for instance radiotherapy). So we can understand why CDF decision-makers want to take cost-effectiveness into account now, even though is still does not make sense as a long term solution: NICE already does this.

So we want to see:

  • NHS England set up a robust mechanism for collecting data from patients treated via the Fund, so we can understand how CDF-listed drugs are benefiting patients.
  • NHS England carry out a rapid evaluation of how the Fund has benefitted patients since it was initially set up.
  • The Government, NHS England, NICE and others to go back to the drawing board and develop a long-term framework for funding evidence-based medicines. This would create a major role for NICE, and given that recent ‘value-based assessment’ proposals were ultimately stalled after much discussion, time is of the essence. But this will also involve the Government looking at how much the NHS is willing to pay for certain types of treatments, and for NHS England to consider how flexible it will be after NICE says no (currently, the Individual Funding Request route for “exceptional cases” is very restrictive).
  • Consideration given to the idea that, in the longer-term, NHS England could give ‘conditional’ funding to some drugs used in small populations and/or for rare cancers, where it is harder to collect evidence of patient benefit. This funding would then continue after an evaluation to see if the drugs work well in these patients.
  • The funding system in general to be more flexible to meet the individual needs of patients. Currently, the system of Individual Funding Requests (which doctors can apply for on behalf of patients in “exceptional” circumstances) is very restrictive. So while the Cancer Drugs Fund regularly pays for drugs for reasonably common conditions, it is often difficult to get drugs for patients in difficult or unusual circumstances. We would like to see a system put in place which does more for patients with difficult to treat conditions.

You can read our full response here.

Today, NHS England announced that – based on the responses to the consultation – it will take forward the original proposals as planned. We still don’t know much about what will happen in the long term, though we do know that there is already a list of drugs that will be considered for potential de-listing in December.

We hope that NHS England will clearly communicate any decisions made so that patients and doctors can understand their impact.

What is clear is that NHS England have said patients who are currently taking drugs on the CDF list will be able to continue taking them for as long as their doctor thinks is appropriate.

UK-wide inequality?

Devolved map

Availability of drugs varies around the UK

So that’s the situation in England.

But when you look at the way things work around the wider UK, things get even more confusing. As we said above, there’s growing pressure for similar systems in Wales and Northern Ireland.

Before we go further, it is important to note that there’s no way to compare what drugs cancer patients are getting in each UK nation, nor why they get them – so we have no idea how many patients outside England are getting Fund-listed drugs through other routes.

But it is fair to say the Cancer Drugs Fund in England has made it much more straightforward to get certain drugs, and some patients – though no-one knows how many – have actually moved to England to get drugs that may benefit them.

But would having a Cancer Drugs Fund in the other UK nations be helpful? We don’t think so – it is not a long-term solution. There is no evidence on how well it is working, it is financially unsustainable, and by creating a separate fund it bypasses the normal NHS decision-making and funding processes.

In Wales, the Health Minister Mark Drakeford continues to reject calls for a Welsh CDF, saying that it is “clinically contentious” and not based on good evidence. In the meantime, following a lengthy review of the Individual Patient Funding Request process (the route in Wales where funding for drugs can be given in “exceptional circumstances”), the Welsh Government has committed to changes which would likely make it more consistent.

This seems sensible, although few details are available, including timescales for the changes. We would also like to see the Welsh Government consider making its “exceptional circumstances” system more flexible.

So what’s next for the Cancer Drugs Fund?

Today’s announcement from NHS England sets out how the Fund will work for the foreseeable future (it is due to end in March 2016). We don’t think there will be any other major changes until after the 2015 General Election.

But we do hope this discussion will push the Government, NICE, NHS England and others into starting to develop and share ideas for what is needed in the long term – ready for the new Parliament to take these forward. We hope that any future changes will involve full consultation with patients and the public.

But this cannot, must not, take another 5 years.

And it’s not just about cancer drugs – there are plenty of other things we want all political parties to support to help more patients survive cancer in future.

In the meantime, we’d be interested to hear your views on the Cancer Drugs Fund in the comments section below.

Zoe Molyneux is a senior policy advisor at Cancer Research UK


Money image by George Hodan [CC0], via Wikimedia Commons


Dr Lesley Kirkpatrick April 8, 2015

From Information recieved by me under the Freedom of INformation Act. It is clear that the Cancer Drug Fund was already operating the new SOP in May 2014. However that version of the SOP went to Public consultation Ocotober 2014 no changes were made following the public consutation. At the time a lot of criticism was made but now we know the public consutatioin was a waste of time as the new SOP was definately used 2 May 2014 – nhs england never intended to make any changes in light of public commments.

Dr Lesley Kirkpatrick November 15, 2014

Thankyou Rose,Julia, and Zoe, when I have been invovled with groups developing guidelines for NICE approval, it is usual for the document to be put out to peer review and public consultation with interested parties( charities focus grroups etc) Once the comments are recieved we have to answer each comment and that becomes part of the documentation from which the guidelines are formed. They are an appendage to the guidlelines. Why is this public body not doing the same?
Their reasoning is that NICE also considers cost effectiveness, however NHS Englands adminstration of the Cancer drug fund is failing . The main reason it was given to NHS England was to stop geographical diffenreces – at this it has completely failed at. It is not transparent – unlike the processes that NICE go through . Its staff are unable to understand and follow their own SOP. So how on earth will they be able to understand cost effectiveness.
I am wondering if they felt it was a way to put pressure on drug companies to reduce costs- this will fail as expanded access programmes only happen where there is a chance that the drug will be prescribed.Merks latest Expanded Access Programme was not equal across EU some countries having no access or only one patient quotas. This will happen in the UK too.
Is there no way of bringing NHS England to account and making it comply wiht the NHS charter on transparency and accountability.

Rose Woodward November 14, 2014

The recent sham consultation on the proposals to change the principles that underlay the setting up on the CDF; from away from patient access and clinical effectiveness to cost effectiveness as the main consideration, should tell us all we need to know about whether the CDF will continue to improve patient access to cancer treatments their Clinicians want to prescribe. The sham CDF consultation could be seen as the start of a process aimed at taking cancer drug prescribing away from clinicians and into the control of N I C E with it’s mathematical modelling and impenetrable pseudo language of ICERs and QALYs .

How long will it take before someone decides the CDF panels are duplicating the work of N I C E and the CDF will be “absorbed” into the N I C E empire ? We were told the Cancer Drugs Fund was “Giving control back to Clinicians” It’s a good sound bite, but unfortunately for some cancer patients, the rhetoric is not matched by the reality as we see below in Dr. Kirkpatrick’s case. Once more, vulnerable, terminally ill cancer patients are faced with the uncertainty of whether or not the NHS will fund the treatment their Clinicians wish to prescribe for them. This week that uncertainty has just turned into a nightmare for some cancer patients and their families.

Julia Black November 14, 2014

Between April 2013 and June 2014 a total of 1180 applications were sent to the CDF for consideration.
Just 56% (656) of these applications were put forward to the CDF clinical panel by the CDF ‘screening panel’.
According to the CDF Standard Operating Procedures (SOP) document the CDF screening stage is an administrative step whereby the application is checked to ensure all sections are completed etc

But as can be seen in Dr Lesley Kirkpatrick’s case, the screening stage is turning applications down on clinical grounds.

The screening stage does NOT include a clinical panel.

Even the flow chart in the SOP detailing the steps in the CDF process, does NOT include a step whereby the screening stage REFUSE applications!!!

How is the Cancer Drugs Fund getting away with this???

Zoe November 13, 2014

Hi Lesley,

Thanks for your comment. This fits with what we’re hearing from others about the IFR system, and it’s always useful to hear about specific experiences of this process.

Best of luck with everything – we understand your frustration and will continue to press for a better system.

Dr Lesley Kirkpatrick November 13, 2014

IFR system in England is failing. I am the last surviving patient with uveal melanoma(eye cancer) from the Expanded access programme of Ipilimumab in 2010- in Europe. I am a 5.5 year stage IV survivor of a disease where 95+% are dead by 2years. My application for Ipilmumab was turned down at the screening stage by admin staff as they said eye cancer was just a sub group of skin cancer in contradiction to my Professor of Oncology. They also said i was not exceptional- the last survivor in EU! Statistically world wide there should be 5 of us there are no other s in UK but the admin said i represneted a cohort of 20+ pts in England per year! Luckily I could fund reinduction myself so I am here to comment. The admin also said I had no right of appeal although this is not writen anywhere in Policy document. In NHS Wessex who deal with South of England the screening panel( junior admin I was told) put only 1/3 of applictions are allowed through to the clinical panel in the North of Englnad 80% are allowed through