We must make an end to the pharmaceutical cash cows! When the prices of lifesaving drugs smell like extortion, the government and national health insurance system must say ‘No’ to compensation

It is perhaps the curse of the 21st Century: as a consequence of deeper insight in the human body, better therapeutical techniques and more advanced medicine, it is now possible to cure or slow down diseases that had been a death sentence for their victims until the recent past.

Many formerly deadly forms of cancer, auto-immune diseases (“aids”) or muscle degradation diseases can be cured or slowed down to chronical diseases today. Other diseases in these categories are still deadly eventually, but life can be prolonged with a number of years and/or the sickness runs with less debilitating effects on the patient.

The price to pay for such advanced medicine is often high, as developing these special drugs is mostly very expensive and the market for some of these drugs is small – even on a global scale. The compensation is therefore much higher than in case of more common, non-patented description drugs. This is not more than logic and should normally not be a reason to not compensate such drugs for chronical or deadly diseases; especially when the curative effects are irrefutable and have a lasting effect on the health and stability of the patient.

However, during the last decade the stories kept on emerging about excrescenses within the pharmaceutical industry: about pharmaceutical giants raising the sales price of certain drugs with dozens or hundreds of percents. 

For instance after a takeover of their initial manufacturer or just because they could do so, as their patients would need their drugs anyway.

Or about life-prolonging drugs that cost patients (or their health insurance companies) more than a quarter million dollars in annual compensations nowadays, but can be produced for a fraction of the price by proficient pharmacists and medical universities.

The same ol’, already worn-out story from the pharmaceutical companies is always that research costs millions of dollars. Such specialty drugs must therefore have these high prices in order to keep the pharma companies afloat and compensate for future research. And in some cases this story will definitely be true.

However, the pharma industry is also an industry that enjoys excess profits of sometimes more than 30 per cent per year; an industry in which the sky seems the limit in some cases. On top of that, ‘Big Pharma’ traditionally threw millions and millions of euros towards doctors and pharmacists, via sponsored courses and workshops in luxurious resorts at tropical destinations. By doing so, Big Pharma bought their eternal love and loyalty, leading to numerous descriptions of expensive patented drugs, where cheaper alternatives would also have sufficed.

Also the pharma industry still unleashes massive lobby power towards parliaments all over Europe, thus securing a willing ear among the national and European members of parliament. Such lobbies are invisible to the general public, but they are extremely successful in protecting the interests of Big Pharma.

And last, but not least: as the prices of such ‘Champions League’ drugs as the aforementioned ones differ between countries and price-setting is an extremely opaque process, the MP’s all over Europe are 5 – 0 behind against the ‘cunning’ pharmaceutical companies when it comes to information equality.

At the same time the world witnesses that strategically important drugs like new antibiotics – necessary to fight broad drug resistance among deadly bacteria – or drugs against for instance malaria  are developed at such a lackluster pace and by that little pharmaceutical companies, that it seems like an endless journey without any form of urgency.

This all paints an image of a pharmaceutical industry that merely exists for itself alone and not for the benefit of the world as a whole: only for the remuneration of their executive management and for the sheer profits of their shareholders. Not for the patients worldwide they are supposed to cure and that are dependent on them in order to survive.

The latest episode in this continuing story is the compensation for the drug Spinraza in the Netherlands. This drug against a debilitating and deadly muscle disease (spinal muscular atrophy) has the dubious honour of being the most expensive drug available in The Netherlands, with annual expenses of over half a million euro per patient. The Dutch Telegraaf wrote the following snippets about it:

That there will be green light for this drug [Spinraza – EL] is far from certain yet. From recent calculations of the Dutch Healthcare Institute (i.e. Zorginstituut Nederland) it becomes clear that the drug is unprecedently expensive: the drug costs more than half a million euros per year in the first year and over a quarter of a million in the years thereafter.

When the drug is allowed into the ‘basic compensation package’ of the Dutch national health insurance, Spinraza will eat away €30 million per year of the national health budget. This kind of drug is increasingly thrusting the healthcare premiums up in The Netherlands. In more and more [Dutch] households these premiums are pressing hard on the monthly budget.

This is almost an impossible choice for national politics:

Allowing this (and other) ‘Champions League’ drug(s) into the Dutch basic compensation package means that literally hundreds of millions of euros per annum in healthcare budget go up in thin air on behalf of a very limited, but nevertheless growing group of patients. And this development could continue until the point that the whole national healthcare system becomes unaffordable for the Dutch government and the “average Joe in the street”.

Not allowing this particular medicine or other Champions League drugs to the basic compensation package of Dutch healthcare, however, means in fact a death sentence for the patients suffering from such fatal diseases. They have nowhere to go anymore, as the road to such specialty drugs remains closed then. In other words: the Dutch government here is caught between a rock and a hard place and can never do it right.

Then the simple, one million dollar question remains: where ends a fair compensation for expensive, but lifesaving drugs being created for extremely small groups of patients and where starts (inter)national extortion of governments and insurance companies, using their terminally ill and desperate patients as leverage?!

This is really anybody’s call and it is a nearly impossible choice to make, but someone should do it!

With (of course) an ambiguous feeling about it, I therefore found it good news that the Dutch Healthcare Institute drew a provisional red line with respect to compensation of the aforementioned Spinraza. For the simple reason that the drug is currently too expensive for the Dutch healthcare system to bear.

The NRC wrote an article about this conundrum, of which I quote a few snippets:

For patients that suffer from muscle disease SMA the medicine Spinraza should be added to the basic compensation package for healthcare. Condition is, however, that the price is reduced considerably. In its judgement, the advisory committee for the Healthcare Institute weighs in appraisals by patients and attending physicians about the effectiveness of the drug.

The committee spoke with manufacturer Biogen and asked for an explanation with respect to the price. Spinraza costs roughly half a million euros per patient per year. The Healthcare Institute called this price outrageously high: ”The manufacturer could not explain sufficiently which expenses are made for the production of this drug”, according to a spokesperson of the Healthcare Institute in a notification upon the advice. The price reduction, that is conditional for addition of Spinraza to the basic compensation package,  must be drastical: 80 to 85%.

At this moment the patients of this terrible disease SMA do receive their Spinraza, based upon a temporary arrangement that lasts until May, 2018. And the advice of the Healthcare Institute is not yet definitive until February 5.

However, when the Healthcare Institute sticks with its provisional decision, the minister will have to renegotiate with Biogen for a fairer price. And when these negotiations fail, the drug will not be compensated anymore, as of May.

I truly hope that the Healthcare Institute and Minister Bruno Bruins of Healthcare and Sports mean business against Biogen. I consider that to be the only way to stop the outrageous development of prices for modern drugs, meant for a limited number of patients.

We all must make an end to the pharmaceutical cash cows, in order to stop the extortion of modern society! When the Dutch government gives in in this case, it will spur other pharmaceutical companies to also raise their prices for their Champions League drugs. And then the healthcare system everywhere could become unaffordable eventually.

The pharmaceutical companies should really ask themselves for which they are established: for giving their executives and shareholders the ‘financial ride of a lifetime’? Or for helping patients worldwide to cure from deadly or debilitating diseases against a fair compensation?

That is their billion dollar question. And it should be answered fast, before governments all over the world consider to step in and nationalize indispensable pharmaceutical companies!