The high cost of going blind:patients allowed access to sight-saving drug

This week there was good news for patients in England with an age-related eye condition that leads to blindness. This week, long after a new and effective drug treatment for a relatively common condition called wet macular degeneration became commercially available, the National Institute for Health and Clinical Excellence (NICE) ruled that it should be made available to NHS patients in England.

It’s easy to have the impression that most recent rulings from NICE have been negative, in the sense of declaring a new treatment insufficiently cost-effective to merit provision by the tax-funded National Health Service. So this positive ruling- allowing access to effective drugs- is to be welcomed. Nevertheless I found something rather disturbing in the tone of the media coverage of this news story and therein lies a medical humanities perspective.The news coverage that has accompanied the ruling by NICE has focussed on one, now, undisputed fact: withholding the drug and letting people go blind costs more money than stopping them going blind by providing the drug. Healthcare costs are, of course, important and the cost-benefits analysis in this case have clearly been decisive in persuading NICE to make its decision. As I have made clear in previous postings to this blog, I am happy to acknowledge the important and helpful role health economics can and should play in ensuring the resources we have for health are used to best effect.

But I cannot surely be alone in feeling concerned at the extent to which the debate about what is and is not made available under a universal health system like the NHS has become dominated by cost-effectiveness issues. I would be very interested to hear from anyone researching in this area who could draw my attention to work documenting any shifts in the way in which media coverage of these issues is framed.

Let me illustrate what I mean with reference to a couple of examples. Both examples involve treatment for vulnerable and dependent individuals who, in economic terms, will almost certainly already cost society money. Whilst both treatments are effective- in the sense of delivering the health benefits claimed for them-they also entail considerable costs. Unfortunately, there are no related cost-savings associated with treatment. Savings such as a reduction in the social and welfare support provided to individuals unable to work, or the financial benefits associated with the return to work of someone previously unable to do so.

Treating the people in the examples I will outline will therefore cost money, and the more people who are treated the more it will cost. Furthermore- and here the calculations get rather uncomfortable to acknowledge- not treating people like those in my example might well yield further savings by reducing the length of time the person lives and thereby reducing the time when expensive health and social care is required. 

My first example relates to a group of people affected by incurable kidney cancer for whom a handful of new drugs may prolong their lives. This example has received widespread recent news coverage, primarily because of NICE’s recent ruling that these drugs are not cost-effective enough to warrant provision by the NHS. Treating this group of patients will not save any money. It will cost money. Money for the drugs and money to meet their health and social needs for the further few months they might managed to live as a result of the treatment. 

The focus in media coverage of this issue has been two-fold: first on the issue of cost-effectiveness and secondly on the stories of the individuals and families who are unable, as a result of this ruling, to access these drugs. The medical experts who have publicly denounced NICE’s decision argue that NICE’s cost-benefit analysis is flawed, their figures wrong, their modeling inadequate. I am not qualified to know whether these claims are justified, but, given NICE’s track record, it seems reasonable to assume that this focus has the best if not only prospect of successfully convincing NICE to reverse its decision.

The impact on patients of this decision has of course been referred to by the medical experts, but more I felt  with an air of profound sadness than with any real sense of conviction that the impact on individuals will be taken into account by NICE. In contrast, the stories of these people and their families were trumpeted indignantly and loudly by a number of journalists.

In the UK and in many other healthcare systems in the world, increasingly it seems that if something can’t be quantified- in pounds, dollars or whatever the local currency is- then it doesn’t matter. In making their calculations of cost-effectiveness economists do of course attempt to acknowledge the value people place on life itself. QALYS- Quality Adjusted Life Years- are perhaps the best known example of how this is done. Looking at the different ways in which NICE evaluated treatment to prevent blindness versus treatment to prolong the life of a cancer patient, it’s difficult however to avoid the conclusion that the only argument that appears to carry any real weight is one which involves cost savings.

Sadly, none of this surprises or even shocks me any more. But what does disturb me is the rapid shift in how the nature of these funding decisions is framed within the mainstream media. The media coverage is of course aggressively shaped by press releases from both NICE and interested parties such as doctors organisations and patient groups and charities. The focus on cost-benefit analyses accurately reflects the basis on which NICE functions. Adopting this focus may, for the moment, provide strategic advantage to certain groups, campaigning and arguing for access to treatments. But if, as a consequence of adopting the only language NICE seems to understand, the stories and the voices of patients and families are lost, then what hope will there be for those who find themselves no longer able to contribute wealth or save society money? Are we all to be reduced to economic units, replaceable, interchangeable, expendable?

Which brings me to my second example. A case study if you will. Consider an elderly woman, already very physically dependent on others, whose only pleasure in life is to read. She develops wet macular degeneration. Giving her the drug to stop her going blind will be expensive. Since she already requires round the clock nursing home care there will be no additional cost if she were to become blind. It is not cost-effective- per the NICE model- to treat her but it is effective and of immense value to her.

Thankfully she will get the treatment. The NICE guidelines don’t require individual cost savings to be calculated before prescribing can begin. Not in this case at least. But one day, sooner rather than later, there will be another situation, another case, another person, where no cost savings will be found to justify (by NICE’s criteria) the approval of a treatment, no matter how valuable the effects of the treatment are to the individuals involved.

Ask yourself this: how easy will it be, is it now, for the old/ dependent/ mentally unwell to articulate their concerns and have their voices heard. Of course money matters. Of course managing it wisely is an important indeed essential part of optimising health and well-being. Nevertheless it remains as important as ever not to lose sight of the fact- no pun intended- that not everything that matters can be counted in hard currency. Which is why those stories need to keep being told and those voices need to be heard.