Interview
Text: Sophie Gaitzsch
Photo: DR

“Drug prices should be set based on their usefulness”

The Swiss physician Christian Kind says pharmaceutical companies should be held more accountable.

in vivo / Are rare diseases being overlooked by our healthcare system?

christian kind / It’s hard to think of rare diseases as a single category. The only thing they have in common is that they’re rare. It’s a fundamental problem. Some rare conditions are not being researched, and patients are neglected, while others are well known and treated properly because they interest pharmaceutical companies and can advance research. That applies for example to certain childhood cancers for which the industry is getting involved. It’s easy to draw support and collect funds to do something about these tragedies that affect our youngest. Meanwhile, we mustn’t forget that some diseases that are not rare, such as cerebral palsy or Down syndrome [editor’s note: a chromosomal abnormality], raise questions for which we don’t have the right answers, but they don’t attract a lot of attention. Rare or not, diseases that don’t have their place in public awareness often end up overlooked.

iv / Treatments for rare diseases, if they exist, are often very expensive. Who should pay?

ck / These days, the reasoning goes as follows: if the treatment is proven effective, if it’s the most economical option available on the market, and if the person needs it, our national health insurance should cover it.

Biography

Christian Kind chaired the Central Ethics Committee of the Swiss Academy of Medical Sciences from 2009 to 2016.
A professor of paediatrics, he held the position of physician-in-chief at the Children’s Hospital of Eastern Switzerland in St. Gallen until 2012. Dr Kind co-authored
the book “Sélectionner ou accepter?” on prenatal and preimplantation diagnosis, published in 2010.

iv / Treatments for rare diseases, if they exist, are often very expensive. Who should pay?

ck / These days, the reasoning goes as follows: if the treatment is proven effective, if it’s the most economical option available on the market, and if the person needs it, our national health insurance should cover it.

iv / How much should the community pay?

ck / In Switzerland, solidarity is part of our mindset. And it’s strong. People think that the community should also get involved financially for expensive treatments.

iv / But some patients are in a constant battle with their insurance company for their treatment to be recognised. What should we do about that?

ck / Different health insurers have different rules for similar situations. From that point of view, a single health insurer makes sense to create a fairer system. But I think the main point in this issue lies in the healthcare industry. The prices charged for treatments are only partially justified by development costs. These days, pharmaceutical companies should be held more accountable.

iv / How can we get pharmaceutical companies to change their attitude?

ck / Ethics experts and philosophers think an international model should be created in which drug prices are set based on their usefulness, not on their development costs. In that kind of system, pharmaceutical companies would no longer be free to set their prices as they do today. The current system is not transparent. But if we compare prices charged in other countries, we see that the industry in Switzerland has a huge amount of leeway. The idea is obviously hard to implement and for now remains theoretical, but would create a model that would work better in the long term. New drugs hit the market every day at exorbitant prices, and pharmaceutical companies are making ridiculous amounts of money. The situation can’t last.

iv / How could the money invested be used differently to make the development of these drugs more profitable?

ck / The money used to treat one person with a rare disease could theoretically be used to cover the expenses of many other patients with a similar illness with cheaper treatments. In a case involving the treatment of Pompe disease [editor’s note: a genetic disorder that causes progressive muscle weakness and respiratory problems] in 2010, the Swiss Federal Supreme Court ruled that the amount of money needed to treat one person
with this disease for a limited time could finance a better treatment for many patients suffering from different types of chronic respiratory conditions.

iv / Have you noted a positive change in the perception of rare diseases?

ck / They’re talked about a lot more than they used to be. And that’s a good thing. However, patients still often face an uphill battle before they get an accurate diagnosis. I hope that the development of information platforms, planned under Switzerland’s concept of rare diseases, will improve the situation and that patients will be able to find the best specialist for them, and faster. I’m more sceptical about the lack of research on some diseases. The industry goes where the profits are, and that’ll be hard to change. ⁄



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