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Institute of Biomedical Ethics and History of Medicine (IBME)

The price of hope: expensive drugs for rare diseases

There are about 8000 so-called "rare diseases". About seven percent of the population is affected. The problem is that often there are no drugs, or that the "orphan drugs" are very expensive.

Individualized medicines are a new step in medical research. One example is Kymriah, one of the most expensive cancer drugs in the world. It is produced separately for each patient. Because it does not work for everyone, the pharmaceutical company Novartis applies the "pay for performance" principle and reimburses part of the price if the patient is not cured.

This development raises ethical questions for society: Who decides who gets such costly treatments? And who pays?

Nikola Biller Androrno discussed this issue on NZZ Format. 

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