From the President’s desk

I am sad when writing these lines as, during the last weeks, we lost several patients with primary immunodeficiencies, some very young after the treatment failed, mainly because of a late diagnosis, others later in life, after a severe infection that proved impossible to control. I am sad and so sorry for the families in pain…

These losses must not be in vain and the pain we feel as a community must fuel an even bigger determination to ensure patient access to successful diagnosis and optimal treatments. We cannot let it bring us down but, rather, use it to reassert what guides IPOPI’s mission. I would like to highlight the testimony of one of the patients who passed away at age 38, and who voiced these inspiring and humbling words: “Never give up, believe in medicine and in yourself!” Tenacity, conviction in science and medicine, and determination are in IPOPI’s DNA.

Back to facts. When we strongly advocate for early, timely and accurate diagnosis, it really is because this is a life issue. When we strongly advocate for access to treatment and precisely right now to have legislation that allows sustainable supply for Plasma Derived Medical Products not only in the European Union but also in all continents, this is a matter of life. When we speak of life saving diagnosis or lifesaving therapy, it is not for the pleasure of using a nice formula but because these are real people and real lives that are at stake. When we engage in activities towards newborn screening, including in Asia or Latin America, how many lives could we save if babies were screened and then diagnosed, given that treatments already exist?

Patient centered decisions are our ethics, this is ethics for life, for progress, for solidarity. When a patient, or a patient representative, is speaking about his/her experience, their knowledge should be valued, and their experience should be listened to since behind every word is the sense of life.

World PI Week is around the corner and will show that year after year, our growing global community is demonstrating its engagement. Our national member organisations will raise awareness of the unique situation of primary immunodeficiencies. They will advocate to make their situation improve, showing their warm cooperation with physicians, healthcare professionals and sometimes researchers, as well as with other stakeholders that want to support them. IPOPI and its members are working hard on and behind the scenes, with multiple projects that this newsletter will detail so that, ultimately, people with PID in the world never give up, have access to science and medicine and can fully contribute to society. Let’s not be sad, let’s engage! Happy reading.