The Cancer Drugs Fund – it’s not a game of Hokey-Cokey

The Cancer Drugs Fund was established by the UK coalition Government in 2010 to provide drug treatments to NHS cancer patients in England, when the drugs themselves are not routinely available via normal NHS routes. I have written before about the less-than-satisfactory experience of my consultant in seeking support from the Cancer Drugs Fund when I was recommended Rituximab as maintenance back in 2010. The fund provides roughly £200m of support every year for these treatments, shared out on a proportional basis across each NHS commissioning authority.

If we ignore the questions of ‘Why is a “Cancer Drugs Fund” needed at all? Why aren’t these drugs just available on the proper approved drugs list, if they are effective?’ the fund itself is a good thing. It allows for treatments that wouldn’t otherwise be available, to the benefit of patients and to society as a whole.

The fund has a problem though. The list of drugs that are on the fund list is regularly reviewed (three times in 2015 from what I can see) and as part of that review process, some drugs might be taken off the list. The current, Nov 2015, list is here

There are lots of drugs on the list, some of which are relevant to blood cancers and lymphomas. Bendamustine, the lymphoma chemotherapy developed in Eastern Europe during the cold war and only relatively recently approved for use here is on the list, for a variety of uses, but has recently been disapproved for other cancers. Many of the drugs on the list are the new innovative anti-body therapies that I wrote about only a few months ago. Two of them, Ibrutinib and brentuximab were due to be removed from the list, but have been reprieved following consultations over cost with the manufacturers.

One of the reasons why the drugs are dis-approved is down to cost and it is only when the manufacturers reduce the cost of the drugs that they are re-admitted. This is wrong. The £200m Cancer Drugs Fund represents a very small part of the overall drugs bill, when in 2014, the NHS expenditure on prescribed medicines was something like £12bn, capped following a protracted agreement with the industry. Given that level of spend, NHS procurement people should be expected to be constantly negotiating hard with the companies to keep the expenditure under control.

Taking drugs off a list and then re-admitting them seems to be an odd way of going about things. Patients / people / constituents / tax-payers / voters – call us what you will – rely on these drugs. To have them suddenly unapproved is going to be highly stressful to say the least and potentially life-changing if these drugs are what is keeping the person alive, or a disease at bay.

Now, everyone understands the pressures that the NHS is under. It would take every penny of taxpayers’ money if it could and still it wouldn’t be enough. Costs in the NHS, of treatments, accommodation, staffing as well as the drugs, continue to rise, despite “inflation” being at zero. People have come to expect more and more from it and still expect it to be free at point of use. I am sure that some become complacent about their life-style choices, knowing that there is a massive national resource that will be there to look after them, despite their choice to smoke 40 cigarettes or eat 5,000 calories a day for half their adult lives. There are many treatments that, arguably, shouldn’t be available under the NHS at all.

However, if we are going to have a Cancer Drugs Fund, rather than incorporate it into the general NHS approvals, once a drug is on there and people are benefiting from its use, it should stay there. People should not suddenly be told that the drug is no longer available to them.

I am, of course, pleased to see that the Lymphoma Association are lobbying hard to improve the way that the Cancer Drugs Fund operates.

Having cancer is hard enough, thanks, without having to worry that the only thing keeping you alive or well might be taken away from you at any moment.