hand holding medicine

RDI facilitates workshop on access to medicines

hand holding medicine

RDI co-organised with the International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) a Round Table on access for rare disease therapies in lower and middle-income country settings. The meeting, which was held at the IUCC in Geneva on December 4th 2019, brought together 15 patient representatives from RDI’s network and 14 company representatives from the biopharmaceutical industry to explore barriers to access, discuss opportunities to overcome these challenges and identify what factors have helped to address them, while recognising that each healthcare system is unique.

Patient advocates and industry representatives looked at examples of where biopharmaceutical companies and patient groups have been involved in expanding patient access to rare disease treatments and care with past innovative and now well-established treatment protocols, as well as to potentially transformative investigational medicines destined for early and routine treatment of rare diseases in LMICs. Disease areas covered included haemophilia, SMA, thalassemia, rare cancers, Gaucher and other lysosomal storage disorders.

Patient advocates for those diseases spoke about existing programmes for their diseases at international level and more specifically about how they are carried out in their countries and the obstacles they encounter on the ground.

The type of programmes featured ranged from humanitarian aid, donations and charitable schemes to twinning and capacity building all the way to comprehensive development programmes at national level.

Based on these examples, participants of the round table engaged in constructive dialogue to analyse hurdles and potential cross-cutting measures to improve access to rare disease therapies in the developing world.