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"The real speech was made by them today, gathering round spontaneously, giving the best of themselves, a smile, a curiosity," Pope Francis said, after meeting with a group of children from the Italian Federation of Rare Diseases (UNIAMO), on February 13, 2023, at the Vatican. In his speech, handed out to the participants, the Pope pleaded for the greater diffusion and sharing of scientific research results.
During the audience, the Pope started his speech, but ultimately did not finish it, as he was interrupted by a child who approached him. The Pontiff then told him to come closer and gave him a rosary, while extending the invitation to the other children present. He greeted them one by one and asked them all their names. Reaching out for the microphone again, he expressed his delight at seeing the children “reaching out their hand to take the rosary.”
“There are no fools here, none! They know how to do it well,” he said amused. The Pope then decided to hand out his speech to the participants, explaining that "reality speaks better than ideas.”
“To continue to speak, after this living sermon, would not make sense. [...] The true sermon was what they did, with their limitations, their illnesses, but they made us understand that there is always the possibility to grow and to go forward,” Francis explained.
No one should be excluded from the health system
In his speech, which was published by the Vatican, the Argentinean Pontiff encouraged the association to find "solutions, at least temporary" to bear together the "very burdensome situation" of children with rare diseases. On a social and political level, he called for working to "improve the quality of health services" by providing "the necessary knowledge and attention toward people who risk being neglected."
However, he pointed out “it is not a matter of claiming favors for one’s own category," but "of fighting so that no one is excluded from health services," nor "discriminated against" or "penalized.”
He also urged "involving and listening to patient representatives from the very first phases of decision-making processes.”
“Entities like yours [UNIAMO,] can apply pressure to overcome national and commercial barriers to the sharing of results of scientific research, so that we can achieve objectives that today seem very distant,” the Pope wrote in his speech.
He had already expressed this position in October 2021, in a video message sent to a gathering of Catholic social movements. On this occasion he had called for “great pharmaceutical laboratories to release the patents,” to vaccines.
He especially emphasized this point during the pandemic, in regards to the vaccines to fight the COVID-19 virus.
