The "weird" Barcelona

A question had been buzzing in my head throughout the conversation, and I didn't ask it until it was too late. By "the conversation" I mean the two-way interview I conducted this Monday with Leticia Beleta, director for Iberia of the pharmaceutical company Alexion, and Dr. Manel del Castillo, director of the Hospital de Sant Joan de Déu, in the new session of the The New Barcelona – Moments Estel·lars cycle, this time dedicated to innovation in health. The question that was buzzing and that I didn't ask: is the concept "rare disease" well used, or should we opt to refer to it as "minority disease"?

The fact is that throughout the conversation we alternated the use of these two terms. I, at first, mainly spoke of "minority diseases", while the two protagonists of the interview for The New Barcelona Post used the concept "rare diseases" without problem. And I thought there would be no problem, because one is the top leader of a reference center in pediatrics, in pediatric oncology and also in therapies for the types of diseases we were discussing, while the other is a senior executive of a leading international pharmaceutical company and pioneer in the research of these pathologies. But the probability of stepping on someone's toes existed, however small, and so it was. And it seemed to me that this had been a beautiful metaphor about minority diseases.

Because, when opening the floor for questions, a lady who introduced herself as a pediatrician reproached us for having used the concept "rare" to refer to the diseases that were the subject of the conversation. She argued that it was a calque of the English term and that it could negatively affect the perception of small children suffering from one. The constructive criticism was addressed and, also very kindly, both the doctor and Beleta responded that not only could the term "rare disease" be used perfectly and was accepted, but that it was obvious that they and their reference institutions did not do so with any negative connotation, on the contrary, after decades of dedication to improving the diagnosis and treatment of those who suffer from one.

It was a moment when, amidst the many data and cases that were presented, all of them in line with claiming the work carried out in Barcelona through a cutting-edge hospital network, as well as a powerful industrial, social and family fabric that accompanies, it reminded us that any opinion, however strange (or "rare") it may seem to us, can exist and must be addressed and responded to effectively. Just like the diseases that no one counts on.

About this "rare" Barcelona that leads research on rare diseases internationally, we talk, we vindicate its role, and we demand improvements to remain in these leading positions, in a ranking that should make us all proud. Above all, because of how useful it is for so many children and for so many families who suffer from a disease that affects their health and that too often is accompanied by uncertainty about its nature and resolution, in many cases until it is too late. Of no other "rarity" should we feel as proud as of this one.

I leave you here the links to recover the conversation on Spotify or Youtube.

https://open.spotify.com/episode/4hMkyL02jJTgUXFrCYp5Hc