Opinion: Quality adjusted life years

POSTED: 07/16/14 12:03 PM

The United People’s party wants to give St. Maarten a new hospital. At least that seems to be the focal campaign promise of the green party. How much such a hospital will cost and – most importantly – whether this building will provide better medical service is unclear. Medical care is expensive and with ageing populations around the world, it is going to be more expensive in the future. So much so, that in the Netherlands the debate has begun about maximum price for additional years of life.

It is of course a rather grisly discussion, but it is an inevitable one. The quandary healthcare systems around the world are in right now is the result of persistent failures of politicians to make choices and of the pressure from the pharmaceutical industry and producers of expensive hospital equipment. For decades the mantra has been – everything than can be treated, will be treated. But that approach is not sustainable in the long run from a financial point of view.

This is where number crunchers and morality meet. The question is: how do you put a price on someone’s right to live?

Wouter Bos, a former minister of finance, is a proponent of a clear standard for what the price of a quality adjusted life year ought to be. Such a standard would prevent polarization around the compensation for expensive treatments of the diseases of Pompe and Fabry. Bos wants to establish such a standard to prevent polarization over new medication against rare forms of cancer.

Obviously, not everybody agrees with Bos. Rob Hagendijk, who teaches political science at the University of Amsterdam and Carla Hollak, a professor in hereditary metabolism diseases at the Amsterdam Medical Center, write in an op-ed in the Volkskrant that Bos is busy with a form of governmental wishful thinking based on a much too limited definition of the problems. The discussion Bos wants will result in abstract principles followed by a lot of exceptions. A low upper limit will probably also delay the development of new and better medicine. Is that what we want? the authors ponder. Especially during the past couple of years, efforts have been made to prevent this from happening.

The principle of the so-called quality adjusted life year is simple. It determines, obviously based on estimates, how many years a patient would live a reasonable life after a certain medical intervention. If the price for a quality adjusted life year is X, the cost of an operation, divided by the expected additional years of life may not exceed X. If it does, there will be no treatment, at least not at the expense of the healthcare insurer.

Hagendijk and Hollak write that the rise of personalized medicine results in hope and fear. Hope for better medicine, fear for costs that are much too high. The expected new medicine will probably be more specific and better. Knowledge about causes, the mechanism that drive certain disease patterns and the effects of treatments will be more detailed. This way it is possible to determine for whom continued treatment makes sense and for whom it does not.

The problem at the moment, Hagendijk and Hollak note, is that there is no structure to avoid ineffective use of medicine.

The authors furthermore say that the upper limit Bos proposes is much too limited and not effective. They propose an alternative: better agreements between science, industry, government, insurers and patient-representatives. Those agreements have to be about objectives, investments, responsibilities and results in the field of medicine for rare diseases.

To create a win-win situation it is important, Hagendijk and Hollak argue, that the pharmaceutical industry cooperates with more transparency and accountability about prices and costs. That is the only way to get rid of the reproach that they only attempt to make money out of other people’s misery. More transparency also makes it possible to agree about an acceptable return on investment and lower prices for successful medicine.

Hagendijk and Hollak say that the current system whereby pharmaceutical companies review their own products has to be adjusted. It is obsolete and created the impression of the butcher who controls his own meat. There has to be cooperation, but also absolute independence for the research of effects and assessment.

Here is the crux of the matter – the point where things become hairy. Hagendijk and Hollak expect that patient-organizations contribute to the establishment of protocols and agreements, but also that they show understanding that treatments are stopped when the effects are too limited.

Of course, there will come a moment when a loved one is struck down by a rare disease. It is human nature to go to any extreme to find a cure. Many patients that have been rejected by the regular healthcare system, or that are disappointed in its results, refuse to accept the inevitable (we’re all going to die sooner or later) and revert to alternative healers or they fall into the hands of crooks who pump them for every penny they have with the promise of some bogus miracle treatment.

That is also a situation nobody wants. Whether Bos sets a price for a quality adjusted life year or whether decision makers follow the ideas of Hagendijk and Hollak – it will make no difference. When the life of a loved one is at stake, people go to any length to battle the odds, no matter how high they are stacked against them.

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