Member-only story
A tale of bad luck and good fortune
Wat does a harrowing story reaching the news headlines tell us about our individual and collective response to people affected by fate?
Baby Pia is 9 months old. She lives in Antwerp, Belgium, and has spinal muscular atrophy, a genetic condition that causes the muscles to deteriorate. Particularly in infants, it can cause premature death. There is a promising new drug, not yet approved in her home country, and therefore not reimbursed, but it is available in the US. Unfortunately, it would cost £1.7 million (1.9 million euro, 2.1 million dollar), much more than Pia’s family can afford. Undeterred, the parents started an appeal to raise the money.
This story hit the Belgian national news on Tuesday 17 thSeptember. Then, several things happened over a short period of time. Belgian health minister Maggie De Block stated that there was nothing she could do, and called on Novartis, the producer of Zolgensma, the drug in question, to make a gesture and offer the drug free of charge. Social media started buzzing with criticism of the greedy pharmaceutical industry, supported by the comments of high-profile philosopher and newspaper columnist. Simon Mignolet, former goalkeeper of Liverpool FC but now of Club Brugge donated the shirt he wore during Tuesday evening’s Champions’…
