Every day, it’s the same tune. One hour of physio on waking up, about fifty medications to swallow all day long and do it again in the evening with an extra hour of physio. This daily routine, punctuated by care, taking pills and respiratory physiotherapy, is common to all people with cystic fibrosis, a genetic disease that progressively destroys the digestive and respiratory systems.
Faced with this potentially fatal hereditary disease from which her 28-year-old son suffers, this devoted mother decided to give herself body and soul to make his daily life easier. But the shortage of medicines currently affecting Belgium greatly complicates the life of the Bouzin family. Essential treatment is becoming increasingly rare.
“It’s a great source of stress for patients”
This is Creon, a drug indicated for the treatment of symptoms related to poor digestion that appears when the pancreas no longer secretes enough enzymes. In 85% to 90% of people with cystic fibrosis, the pancreas malfunctions. “Creon is an enzyme mucos need to take every time they eat, she explains. Without this enzyme, they cannot eat. It is therefore an essential treatment. For the creations, there is a yo-yo effect among wholesalers, and this for several years, we do not really know the reason. What’s very annoying is that every time I go I have the pharmacist, I don’t know if I’m going to receive one”.
A worsening drug shortage in Belgium
Cystic fibrosis drugs sold at a price “40 times higher” than their real production cost: “Pharmaceutical banditry!”
Brigitte Bouzin can sometimes travel up to 50 km to find certain treatments, which are essential. On the FAMHP website it is indicated “discontinuation of marketing” for bottles of 100 capsules. Bottles of 200 capsules are temporarily unavailable. For families, it’s a real ordeal.
“The first time it happened a few years ago, I indeed went to several pharmacies, I know some who have to do a lot to find it, sometimes up to 50km away, she says. Today I manage the situation differently and I try to anticipate but not everyone can do it. I assume that when this drug becomes available again, all the patients who need it stock up, which means that the stocks are probably depleted more quickly than expected. And those who do not make a reservation or who for one reason or another urgently need it, then have difficulty finding it. It is a source of stress next to the disease”.