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We caught up with our chief clinician, Professor Peter Johnson, about the recent announcement of changes to NHS England’s Cancer Drugs Fund.

The high-profile changes to NHS England’s Cancer Drugs Fund (CDF) – 25 treatment options removed, 4 added, and a reported £60m budget increase – have been making headlines for several days now.

Of course, most have focused on the treatments that, from 12th March, the Fund will not pay for. This is understandably worrying for cancer patients, their families and their doctors (although – importantly – people who are already taking one of the drugs won’t have their medication stopped unnecessarily).

But beyond this entirely understandable reaction – and the “outrage” from certain quarters – there lies an important missed focus.

And that’s how we, as doctors who want to tailor care to each of our patients as an individual, do so within an impersonal and centralised system. The Fund had its origins in the intense frustration that patients and doctors felt, that the National Institute for Health and Care Excellence (NICE) appraisal system failed to take account of the complexities of cancer and the problems of obtaining new treatments for difficult illnesses in individual patients.

The wider controversies that have dogged the Fund – initially worth £200 million a year, then £280m and now up to £340m (if NHS England’s spending predictions hold true) – are well documented.

Established in 2010, the Fund has in effect served as a ‘carte blanche’ to pay for some cancer drugs in England that haven’t been approved by NICE. There was no focus on cost control, so its budget has grown as more and more patients (an extra 2,000 of them every month) receive drugs via the Fund.

Paradoxically, the use of a single national list still made it nearly impossible to obtain funding for difficult individual cases which did not fit the criteria on the list. The worst of both worlds: a rapidly-rising cost but still not addressing the original problems of difficult individual cases. On top of this, as it’s England-only, it has exacerbated UK-wide differences in treatment availability, and introduced perverse incentives into the system.

So it was always going to be unsustainable, especially in an NHS with finite resources and under financial pressure. And while the Fund has played an important role in allowing patients to have certain treatments, it was always intended as a short-term fix while reforms to NICE were drawn up and implemented.

A question of cost

Of course, the Fund has been pruned out of economic necessity: to make it more efficient and to keep its budget under control (although the extra £60m runs counter to NHS England’s previous determination not to spend any more money on it).

To this end, it’s good that the 25 treatment options removed from the list – relating to 16 different drugs – have been assessed based on evidence around their cost and benefit to patients.

And it was sensible that NHS England gave the relevant pharmaceutical companies an opportunity to negotiate price reductions where possible.

Having said that, the decision process isn’t necessarily the easiest to understand – although at least information on the individual decisions has been made public.

But having two separate mechanisms, NICE and the CDF, to assess drugs, doesn’t make sense, especially as they come to their conclusions quite differently. Surely the best outcome would be a re-evaluation of NICE‘s role, and its processes, so we have one, good organisation for this job?

We need a new system urgently. We’re moving away from the ‘one-size-fits-all’ era of cancer care – and we need a system that reflects this, rather than making centralised, top-down decisions. Regardless of these drugs’ undoubted – and at times eye-watering – costs, there are some patients for whom these treatments offer priceless extra months, or years, of life. Yet for others they might not.

Getting personal

Many of the latest generation of cancer drugs – including some of those being ‘delisted’ – are designed to target precise molecular faults inside cancer cells. Some patients’ tumour cells will carry these faults, others will not. And a crucial part of research and clinical care is finding out who these patients are. So balancing the decision to offer one of these drugs requires an ever more intimate knowledge of the genetics of each patient’s cancer – something the UK Government has already failed on by not making important genetic tests uniformly available.

Ultimately, this week’s changes to the Cancer Drugs Fund highlight once again that it can’t be a long-term solution: like a plastic ruler propping open a heavy window, it’s sure to snap eventually.

And it’s in this lack of flexibility that the true disappointment, at least from my perspective as a doctor treating people with cancer, lies.

So I hope that NHS England will find a way to ensure that, when needed, patients whose doctors recommend particular treatments can still get them – and in a way that is more manageable than the current minefield of ‘Individual Funding Requests’, a system as byzantine and opaque as the East German passport office once was.

Of course, personalising treatment also requires more than just good drugs. We need to see more funding for surgery and innovative radiotherapy too. After all, the majority of patients who see their cancer cured do so because of these treatments.

So without wider, long-term reform of how the health service both pays for cancer drugs and grants patients and their doctors access to them, the NHS will fail to balance what our patients need against what it costs to treat them.

And that really would be an outrage.

Professor Peter Johnson is chief clinician at Cancer Research UK