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Patients in full support of the development of gene and cell therapy
The 72nd annual World Health Assembly (#WHA72) took place in Geneva from 20-28 May. The IAPO team was represented throughout the WHA and hosted an event on the side-lines of the 72nd World Health Assembly. Here’s our wrap up.In line with IAPO’s culture of hosting events on health innovation at the World Health Assembly, this year was no different. In partnership with the International Federation of Pharmaceutical Manufacturers’ Associations (IFPMA) and Thalassaemia International Federation (TIF) we hosted the side event 'Cell and Gene therapy in Universal Health Coverage'. The event on Wednesday 22nd May saw dozens of delegates attend and joining the conversation around how we enure the relaization of the potential of gene and cell therapy.
The event took the form of a panel moderated by IAPO CEO Kawaldip Sehmi with panellists including expert patients, academics, WHO representatives and industry representatives.
Interesting conversations took place with patients coming out in full support of the development of Cell and Gene Therapy. Thalassemia expert patient Maria Hadjidemetriou came out very strongly noting that although she was a Thalassemia patient, she would rather focus on her role as a mother. She highlighted that she would rather spend her time with her family than in a blood transfusion unit a procedure required to manage the condition. She concluded by stating: “why not gene therapy? Why not be free of lifelong blood transfusions? Why not be free of lifelong chelation? Why not be free of secondary diseases caused by being chronically transfused.” The promise of a one -shot miracle cure is something that I fully welcome.
Whilst patients are in full support of the development of these therapies, they added a caveat. George Constantinou another Thalassemia expert patient noted that patients need to be reassured that provision of these therapies would not become a privilege for some but must instead be a right for all. He called on other patient advocates to come forward and help in advocating to ensure that these innovative advances are made both available and promptly accessible to all patients all over the world.
It was really exciting to here from the World Health Organization on the fact that they are establishing a working group on standardization and regulation of cell and gene therapies to define their boundaries. Dr Ivana Knezevic Group Lead, Norms and Standards at WHO noted that for these therapies to finally reach their promised potential the health system requires highly skilled medicines regulation teams, facilities, equipment & collaborative work with patients & society to streamline access.
Big hopes are being pinned on these therapies not just for Thalassaemia but for so many other coditions and we look forward to the progress.
Resources
IAPO Statement on Agenda Item 11.5 - Universal Health Coverage
IAPO Statement on Agenda Item Agenda Item 12.5 Patient safety: Global Action on Patient Safety
