Via a Twitter update by Rare Disease Day, I learned about PlayDecide, a discussion game to talk in a simple and effective way about controversial issues. On PlayDecide, there are so-called Decide kits on 11 topics in more than 20 languages. Among the topics is Orphan Drugs. I read in the introduction to the topic Orphan Drugs that, in the European Union, around 30 million people suffer from rare diseases. According to eurordis, a disease or disorder is defined as rare in Europe when it affects less than one person in every 2000 people. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. There are between 6000 and 8000 rare diseases.
At PlayDecide, I read further that the case of orphan drugs raises important issues such as
- How can you put price limits on human life?
- How can treatments for such rare diseases be properly evaluated?
- Is it fair that individuals with a rare disease have more money spent on them per unit of health gain than patients with similar health problems arising from more common diseases?
- Should companies producing orphan drugs keep all their current benefits?
You can get to the Decide kit on the topic Orphan Drugs by clicking here. According to the Decide kit, Decide works best when played by 4 to 8 people. From start to finish, the discussion game takes 80 minutes to play.