December 16, 2024

IPOPI PID Forum discusses the impact of medicine shortages on patients with PIDs

On November 5, IPOPI held the EU PID Forum on “Exploring the impact of medicine shortages on PID patients” at the European Parliament in Brussels (Belgium). The Forum was co-chaired by Member of the European Parliament (MEP) Vytenis Andriukaitis (S&D, Lithuania) and MEP Tomislav Sokol (EPP, Croatia).

The Forum, moderated by Johan Prévot, IPOPI’s Executive Director, explored the current challenges patients with PIDs are facing to access their therapies, its impact on healthcare professionals, such as treating doctors and nurses, as well as the new mandate the European Medicines Agency (EMA) has been empowered with, to support Member States in tackling this problem. The discussions highlighted the need for EU-level action and participants and speakers welcomed initiatives such as the proposed Critical Medicines’ Act (CMA), the European Rare Disease Action Plan and the formation of the Critical Medicines’ Alliance.

The speakers of this Forum were:

  • Leire Solis, IPOPI health policy and advocacy senior manager, set the scene and presented data from the 2nd IPOPI survey on Ig shortages in 2024.
  • Klaus Kruttwig, EMA medicines and medical devices shortages specialist explained the work of the Agency in the field of medicine shortages and its role in identifying critical medicines and offering recommendations to EU countries and industry stakeholders during major events.
  • Otilia Stanga, president of the Romanian Association for Patients with PIDs (ARPID) and IPOPI treasurer, shared her experiences with medicine shortages in Romania.
  • Lúcia Mamede, Medical Affairs Project Manager at IPOPI, shared insights on behalf of Dr Nizar Mahlaoui, a paediatrician at Necker-Enfants Malades University Hospital and vice-chair of IPOPI Medical Advisory Panel, regarding the impact of medical shortages in hospitals.

The Forum attracted a lot of interest from our NMO representatives and many of them took the floor during the discussions: Janine Bastiaans (Board member of the Dutch PID patient organisation), David Jiménez González (board member of the Spanish PID patient organisation, AEDIP), Kersti Urbala (President of the Estonian Patient Society for Primary Immunodeficiencies), Maria Löfving Sonesson (Chairperson of the Swedish PID patient organisation)  and Ellen Desmet (Board member of the Belgian PID patient organisation).

IPOPI would like to thank CSL Behring, Grifols and Takeda for their continued support.

If you want to know more about the PID Forum, please check the report here.