In September, after some of our member organisations reported Creon shortages in certain countries, CF Europe launched a short survey to get a broad overview of the problem at the European level. More than 522 people with cystic fibrosis and their relatives from 30 countries completed the survey.  

Thank you to all those who responded, allowing us to get a better understanding of the extent of the problem. We are aware that the results of the survey are limited, and more work is needed in order to fully map the availability of Creon at the European, national and regional level. The survey clearly signals however, that there is a problem in various countries across Europe, 72% of respondents indicated that they had problems obtaining Creon in the last 12 months. 64% said this was still the case at the time of the survey. Most problems occurred with the higher doses of Creon, 25,000 and 35,000. It appears that there are different situations in the same country and differences by region (e.g. Italy, Poland), with respondents from the same country saying they have had issues while others did not.  

CF Europe has been in conversation with Viatris, the current licence holder for Creon, to discuss this information. The company, however, does not seem to be in the position to provide an immediate structural solution. 

In order to continue these discussions and in search for a solution, we are interested in better understanding what is the reason for these shortages and how they affect countries and regions differently.  

If we only look at the case of Belgium as an example, the problem appears to be short term but significant: no fewer than 94% said that they had had difficulty taking Creon in the last 12 months. 65% were still experiencing these problems at the time of the survey. Belgium therefore appears to be more affected by the Creon shortages than some other European countries. An explanation for this could be that there are no alternative brands of pancreatic enzymes available on the Belgian market. For this reason, the Belgian CF association, Muco.be, contacted a number of producers of alternatives that are on the market elsewhere in Europe, such as Nortase, Lipancrea or Pancreolan. What is often missing is a permit to bring those products onto the Belgian market. That is why the association is also in contact with the Federal Agency for Medicines and Health Products (FFAMHP) and are investigating whether a quick solution is possible. If you are facing similar challenges in your country, please let us know.  

If you have any additional suggestion, are aware of any further details or are in conversation with Viatris or other producers yourself, please email us by the 26th November.  

CF Europe will also send a letter to the European Medicines Agency (EMA) to signal this problem and so that Creon shortage is added to their catalogue. Creon is a basic medicine in the treatment of cystic fibrosis and it is important for everyone, whether they take modulators, have been transplanted or not. Easy availability of Creon is therefore a basic right.