October 3, 2020

From the Chairperson’s desk

From the Chairperson’s desk

What a complex year!  But no doubt that, despite COVID-19’s dreadful consequences, IPOPI is more positive and committed than ever. It is incredible to see how our whole community is being reactive, creative and innovative. Many of our national patient organisations were busy. Not only supplying information on COVID-19 to their members but also translating IPOPI documents into their national language.  Also, providing psychological support to ensure that the patients and their families are able to cope with the risk from an emotional perspective. This was demonstrated admirably by Hungary, Indonesia and Argentina who released webinars or even webinars series on these subjects.

Even if the pandemic is far from over, with time comes the opportunity to build on what we have already learnt. IPOPI has launched a new initiative called Learning Expedition to allow patient’s leaders to share their experiences, challenges and lessons learnt on the key issues faced during a pandemic. 

Many of our national patient organisations were busy. Not only supplying information on COVID-19 to their members but also translating IPOPI documents into their national language. 

IPOPI also recently held its 14th PID Forum entitled “COVID-19 & Pandemics Management: Protecting the Most Vulnerable”, the first-ever PID Forum to take place online. Hosted by Slovenian MEP Tomislav Sokol, the exchange of views contributed to setting the scene for a strong political commitment to reduce vulnerabilities of rare disease patients during public health crises.

As this crisis continues to evolve PID patients face a critical threat to their Ig treatment! It is obvious now that the drop in plasma collection will impact our community, even if we don’t yet know to what extent.   We can already see the first signs and fear the situation will worsen in  the future. After the publication of its open letter calling for international, regional and national authorities to ensure sufficient blood and plasma supply during and after the COVID-19 outbreak.  IPOPI is taking action to monitor the situation, especially in those countries that are currently more affected by increasing communication between stakeholders and  promoting demand management plans to ensure PID patients who have no alternative treatment can continue to access their IG therapies.

Our members continue to be very active and we applaud the US’ great initiative of launching Plasma Heroes (will you be one of them?) or the French initiative of committing its trustees in a vast advocacy action towards Members of Parliament and health authorities. In addition, IPOPI actively participated in the Plasma Users’ group (PLUS) EU Policy Round Table focusing on the need to increase plasma collection in Europe’s, the importance of aiming for global sufficiency in plasma derived medicinal products through regionally balanced plasma collection and calling for more patient centeredness in the upcoming revision of the EU blood, tissues and cells legislation.

But let’s move to our educational activities. We were so pleased to hold our 3rd Asian meeting virtually, even though we would have loved to have been in Kyoto as planned. This consisted of a two-day meeting articulating clinical care for physicians and an educational patient day. Very well attended by numerous countries, it led to fruitful exchanges and reinforced the bonds between members, also welcoming representatives from new countries like Nepal or Bangladesh.  Our two last webinars where our guest speakers, Stephen Jolles (UK) and Charlotte CunninghamRundles(USA) gave very comprehensive talks on: Calculated immunoglobulins and PIDs and vaccines, respectively.

We are currently preparing for our next Global Patient Meeting where we will be pleased to welcome our members, amongst the representatives will be our newest member – Sudan.  As a final word, I must say that we are very pleased to maintain our valued cooperation with our partners INGID and ESID for this joint meeting, the first ever virtual congress.  Undoubtably challenging but nevertheless a groundbreaking event,  there’s no doubt about it. We hope to see you there to enjoy this momentous occasion for the global PID community!

Happy reading, and please take care!

Martine Pergent
IPOPI Chairperson