From the Chairperson’s desk

Now, everybody knows! Everybody knows what living with a PID means, after SARS-Cov-2 changed the lives of billions of people by making them fear an infection.

Once again, I’d like to convey our heartfelt gratitude to all those who help fight the COVID-19 pandemic on the health and research front and ensure our daily life can be as good as possible, especially in the countries where SARS-Cov-2 is still very virulent. This unprecedented situation teaches us what it is like to live with uncertainty, and has brought many challenges, difficulties and even controversies. Ironically (paradoxically?) the situation has also given rise to unexpected very positive developments. Understanding and research efforts have broken all speed records, most often, for the best.

This applies to the PID field as well: IPOPI has been hosting Webchats with its National Member Organisations’ (NMOs) leaders during which COVID-19 breaking news are kindly commented by specialised guests and all questions answered. We could also see the extraordinary flexibility and creativity of our NMOs in the different countries who were able to adapt their programmes for World Primary Immunodeficiencies Week and manage their local constraints. Our MAP has produced global recommendations endorsed by the major international PID medical societies in a record time, offering the regions and countries a basis for their local versions.

Another very nice development is the CoVIg-19 Plasma Alliance formed by major stakeholders from the pharmaceutical industry to fast track the development of apotential hyperimmune globulin treatment for severe forms of COVID-19.
Data collection efforts have also been initiated. COPID19, a specific ongoing worldwide survey on PID patients with COVID-19 has most recently been launched globally, these efforts will be very important to learn more about how PID patients are affected by SARS-CoV-2. This pandemic highlights just how much everyone’s health depends on individual behavior: family and friends, neighbors, shops employees…

This prompted IPOPI to successfully organize a very proactive  social media flash campaign on social distancing and plasma collection called “We count on you”. Continued plasma supply is paramount for many patients with PID, and this is the reason why we need more than ever before to raise awareness around the importance of plasma collection and the life-saving nature of plasma derived medicinal products. We can never enough express our gratitude to blood donors, but in addition, we want to highlight the crucial importance of plasma donors whom we thank for donating their plasma and for their regular and long lasting commitment to ensure patient care.  Their gesture is instrumental in ensuring patients throughout the world can regularly access the immunoglobulin treatments that best fit them. Here I would like to stress the importance of international solidarity and the fact that the ultimate goal of immunoglobulin global sufficiency will only be achieved through regionally balanced plasma collection. IPOPI has published an Open Letter calling international, regional and national authorities to ensuring sufficient blood and plasma supply during and after the COVID-19 outbreak. We are extremely committed in advocating for our patients’ lives globally: June 14^th World Blood Donor Day was the perfect opportunity to reiterate our thanks to blood AND plasma donors for their invaluable gift of life.

All these activities linked to or deriving from the pandemic underline the value of stakeholders cooperation is, and show how important it is to make patient-centred decisions, taking needs and views into account, and how satisfactory and rewarding it is to commit for their good.

This unprecedented situation teaches us what it is like to live with uncertainty, and has brought many challenges, difficulties and even controversies.

PID is a fantastic field, I happen to say this often becauseit nourishes our commitment: things are moving ahead all the time, crossing new borders, opening new perspectives. This is reflected in the many activities we have at IPOPI and with our partners. Let’s take some examples from the past few months. We have just set up a coalition called Screen4Rare together with ISNS and ESID to give more visibility on the newborn screening work we have been carrying out for years, and as it makes more and more sense to screen for rare diseases given the progresses of medicine and science. Another area we have been working on recently is on the crossovers between PIDs and Autoimmunity, Autoinflammation, Allergies, etc. We had very interesting and successful webinars on hyper inflammation in PIDs and on PID and cancers raising interest among clinicians and patient leaders from many different world regions and countries. Other recent efforts on the educational front include the publication of a new leaflet on Activated PI3K Delta syndrome (APDS) a very rare PID and the preparation work on several additional PID Information lealfets to be published by the end of year.

So let us have a look at the second half of 2020. We have had to take the difficult decision to move our biennial Global Patient Meeting to an online basis as our primary concern is the health of our patient group representatives. Due to circumstances, ESID and INGID have since then also announced that their meetings will also be held virtually, and so we are very glad that the three of us will be in a position to continue to have our joint-congress on the same digital venue, perpetuating despite the circumstances a successful and exemplary tradition which started in the 1990s and to which we are very attached! The same will apply to our Asian Regional patients-doctors meeting innitially planned in Kyoto Japan, which also will be held digitally.

We don’t know how the situation will evolve by the end of year, but know whatever it may be that we will deal with it, we have recently been working more than ever despite it, and are confident in the commitment and the talent of all the stakeholders we are happy to partner with to ensure the very best for our patients in the many countries we represent.

Happy reading! Stay safe and strong in both your professional and personal lives. More than ever stronger together!

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Martine Pergent
IPOPI Chairperson