I think he is deeply mistaken at nearly every stage. I’ll try to keep my response concise.
Are patients who wish to copay demanding additional resources from the NHS?
“So that’s the deal that Mills and Hirst are demanding here. They want the NHS to put up £6,000 per month in treatments, which they would have [to] have longside the Avastin for it to have any effect, to enable them to pay out a further £4,000 a month for drug that may or may not extend their lives by a bit, although by how much (on average) no one actually knows for sure although the best guess seems to be a few months, as this 2006 article from the New York Times indicates.”
The logic here is stretched. Look at it the other way. If they have Avastin Mills and Hirst will have a better chance of increasing the number of months they will remain alive if the NHS offers them its standard treatments. That means that they demand continuing treatment instead of accepting palliative care and death. This is an additional demand on the NHS.
If someone has a less severe form of cancer then treatment is more likely to be successful. At a certain cut-off point they are either worth treating or they are not worth treating. One patient could demand more treatment because he is more healthy. Non-smokers, on average, may demand more treatment because they are more likely to demand the expensive care associated with long-term conditions like Alzheimers.
What Mills and Hirst have done is, by buying outside drugs, moved themselves into a category where treatments, made generally available within the NHS, offer them the prospect of additional months of life. If the decision is made on clinical grounds alone then clearly using those treatments universally available, free of charge, in the NHS could be seen to be in their interest. It is an option that the NHS, if all concerns for the full implications of copayment – which I’ll discuss later – were left aside, would offer them.
Mills, Hirst and the others who wish to copay aren’t demanding special treatment. They’re just asking for the same heuristic to be applied to them as to everyone else.
Does copayment for drugs like Avastin constitute an irrational choice?
Unity makes a few arguments on this subject. First, he notes that Avastin does not ‘cure’ cancer:
“Neither of these drugs is a ‘cure’ for cancer, indeed neither one of them will even put the cancers they target into remission. Their sole and only purpose is to delay the spread of secondary cancers that will, inevitably, lead to the death of the patient no matter what.”
This isn’t particularly significant. A great many treatments do not prevent but merely delay death. Above the age of seventy-five mortality is not considered ‘amenable to healthcare’, for example. I don’t mean to be trite but, ultimately, everyone dies. All medical science is a stall that can, at best, delay someone’s death by a reasonable amount of time and ideally make it that another condition administers the coup de grace.
Unity then discusses various evidence that makes clear that the results of these drugs are highly uncertain. That is probably true. That uncertainty clearly makes the expected increase in longevity that the drugs deliver somewhat less valuable. However, it seems that those patients choosing to put substantial money of their own into copayment see an uncertain chance of living a few extra months as preferable to a near certainty of imminent death.
Debates over the quality of evidence used to support the approval of Cetuximab aren’t particularly relevant to this debate. Companies should be held to account for the veracity of their claims about any product through the courts, the threat of damage to their reputation and through regulation. The point of the specific rule against copayment is not to protect people from dodgy sales pitches.
So, is it rational to spend thousands of pounds to gain some uncertain extension to your life, probably just a few months, or are drug companies exploiting the vulnerable and afraid? A practice we would certainly not want to facilitate.
To answer that question I’m going to need to briefly tell the story of a man I know. I’ll leave all the details I can out, just in case. His wife had been ill for some time but suddenly what had been a chronic condition took a turn for the worse. There was no equivalent of Avastin on which he might spend his money so he did something else. He stopped working and spent a huge amount of time at her beside. This decision undoubtedly cost him tens of thousands of pounds and he wasn’t a rich man. He had to sell a small business that might have provided for his retirement. It can’t have given him with the equivalent of more than a month or so of additional time with his wife. His decision was, in every way, similar to that facing someone who can buy, or not, buy Avastin and he chose to bear an expense of tens of thousands of pounds to see more of his wife. Is that decision irrational?
Colette Mills has a family – she wanted to pay for some extra time with them. Of course, it isn’t going to be a ‘lot’ of time in the grand scheme of things and it is necessarily uncertain but that doesn’t make the decision wrong. It doesn’t seem in any way unreasonable for her to expect that we treat her like any other patient during that time and offer what treatment can give her additional months of life and allow her to make the most of the chance she has bought herself.
The ad hominems
I’m going to focus on one of the doctors that Unity discusses. Professor Karol Sikora. I know Karol as he wrote the foreword to my study Wasting Lives: A statistical analysis of NHS performance in a European context since 1981 (PDF). He struck me as a remarkably decent and deeply intelligent man, for what it’s worth
He is the Medical Director of CancerPartnersUK, former Chief of the World Health Organisation Cancer programme and a member of the steering group of Doctors for Reform. When the Times reported his opinion on the case of Colette Mills they described him as a member of the steering committee for Doctors for Reform. Unity believes they have failed to uphold proper journalistic standards by not mentioning his job at CancerPartnersUK.
Clearly the Times faced a decision over which aspect of Karol’s biography to highlight. They described him as a member of the steering group for Doctors for Reform. That hints at the fact that he has political beliefs; namely that the NHS is in serious need of reform. They could have described him as a Medical Director of CancerPartnersUK which would hint at the fact that he has a financial interest in treating people for cancer. They evidently judged that the political background was more relevant and informative. Are they wrong? I don’t think there is a definitive answer to that question. They don’t have the space the BMJ do and, therefore, can’t put a full bio in. They haven’t even chosen the most positive citation: former head of the World Health Organisation Cancer programme.
In the end, the government themselves don’t argue that they need to refuse permission to those who wish to copay on financial grounds. They also don’t make the paternalistic (I’m not using that as a term of abuse) argument that Unity makes: that the Government need to prevent people spending their money on doubtful stalls to inevitable mortality.
Copayment is refused on the grounds it would create a ‘two-tier’ health service. If some people can pay and do better then those treated under the NHS will no longer face equal health prospects. That is the stated and, I believe, genuine reason why copayment is not allowed. I don’t think the government’s decision is right or moral and share DK’s anger.
In the end, people who are better off have all sorts of advantages within the NHS. Civitas have shown that they tend to get seen more by doctors as they are better able to play the system. Equally, there are many ways to copay that are not covered by the rules, as Doctors for Reform showed in an earlier report (PDF). The Government are not defending a genuine principle.
Beyond that, I don’t think that avoiding a ‘two-tier’ system should really be an objective. The objective should, instead, be to provide the best quality of healthcare we can up and down the income scale. The health of the poor needs particular attention but keeping the rich down isn’t the way to help them. My broader view on how we improve the health service is described in Wasting Lives.
In the name of as thin a principle as a one-tier health service, it seems illiberal to the point of brutality to tell people who want to invest extra money in medicines - that we cannot afford to provide them - that we will cut off their treatment if they buy extra treatment on the side.