March 27, 2018

From the Chairsperson’s desk

Dear Friends,

Some of you may be aware that for many months the situation for our patients in Romania has been extremely difficult as immunoglobulin (IG) therapies were withdrawn from the country last year following the introduction of a clawback tax by the government on pharmaceutical companies, which included the lifesaving treatment for primary immunodeficiency (PID) patients.
This terrible situation forced children to stop going to school and adults to attend their workplace for fear of catching an infection. The lack of IG therapy for so many months sadly resulted in the death of at least one patient. It is hard to believe that this situation can happen in an EU member state or in fact anywhere in the world, knowing IG therapies are considered essential medicines for PID by the World Health Organisation (WHO). Yet, it did happen.
At the time of writing this, efforts are being made to bring back IG therapies to Romanian patients and an exemption from the clawback tax has been granted recognising that plasma derived medicinal products are different from traditional pharmaceuticals.
We need however to ensure that these efforts lead to the ultimate objective of bringing back lifesaving IG therapies to patients in need and IPOPI was pleased to participate in the recent stakeholders meeting organised by the Plasma Protein Therapeutic Association (PPTA) in Budapest back to back with the International Plasma Protein Congress. This meeting provided an opportunity for industry representatives to hear directly from patients about current challenges regarding IG therapies supply, not only in Romania, but in other countries as well. It is our hope that these discussions will lead to concrete actions being taken to achieve the common goal of all PID stakeholders thus safeguarding the continued wellbeing of PID patients. IPOPI has also recently issued a position statement on access to IG therapies to highlight the importance of ensuring that the most appropriate Ig therapy for patients living with a primary immunodeficiency (PID) is selected following a doctor-patient shared decision-making process. A key issue our patients are increasingly confronted with is that in some countries payer organisations are treating IG therapies as if these are generic medicines, which could not be more wrong.
IPOPI strongly recommends that national measures mirror the PID community consensus calling for the individualisation of IG replacement therapy for PID patients and ensure PID patients can have continuous and equal access to the Ig therapy that suits them best. Hospitals, pharmacists, health insurances should provide the widest range possible of safe effective IG therapies, for both intravenous and subcutaneous administration routes, including a choice in dosage and concentration.

As the first quarter of the year has already come to an end and as you will read in this edition of e-News, IPOPI and its national member organisations have already embarked on numerous activities. Of course, the preparation of our XVth Biennial Meeting which will be held in Lisbon, Portugal on 24-27 October is well on its way and we are looking forward to welcoming our growing network of national member organisations. The Biennial Meeting is also a great example of how key PID stakeholders can collaborate and support each other: patients, doctors and nurses.  Challenges and opportunities for our community are increasing every year and the way forward is to support each other and to work collaboratively.
Another good example of this is the upcoming World Primary Immunodeficiencies Week which will see stakeholders in our field unite around the theme “My future starts with early testing and diagnosis of Primary Immunodeficiency” highlighting the need to confront under-diagnosis and late diagnosis of PID.
IPOPI has also commenced its work on the next edition of our congress, the 4th International Primary Immunodeficiencies Congress – IPIC2019 – which will be held next year in Madrid, Spain, on November 6-8, 2019. We are delighted to count once again on the support of key opinion leaders in the field who have accepted to actively take part in our organising and scientific committees. Stay tuned for

I am also very pleased to announce the publication of a new series of three IPOPI Patient Information Leaflets focussing on “PIDs and Infections”, “PIDs and Allergies” and “Psychological Management”, three hugely important topics which had not yet been explored.

My thoughts are also with our good friend, eternal supporter and Honorary President, Mr Bob LeBien following the sad passing of his wife Sara in January following a long battle with a rare neurological disorder. Sara herself had been a great inspiration for many of us and the author of the “Our immune system” booklet, a reference publication which has been widely distributed and translated into several languages.

I hope that you will enjoy reading this edition of e-News and find it informative and useful. Wishing you all a productive and successful World PI Week 2018!

Jose Drabwell