Jan Geissler, Founder and CEO at Patvocates, shared a post on LinkedIn:
“Tyrosine Kinase Inhibitors saved hundred thousands of lives of those living with chronic myeloid leukemia. But they did not change CML alone, the patient community did as well.
25 years ago, CML was largely fatal. Imatinib changed the science. But science alone does not create equity, access, adherence, survivorship, or global communities. Patients built those.
Long before “patient engagement” became more widely accepted, community members living with CML were already organizing themselves globally online, translating science into plain language, influencing research, challenging pharma and regulators, collecting real-world evidence, and proving that patients are not spectators in innovation.
The CML community became one of the first truly global advocacy movements in cancer – and, in many ways, a prototype for modern patient advocacy in a rare cancer.
Honoured to contribute to this special issue of CancerWorld, reflecting on 25 years of TKIs in CML, and on the uncomfortable truth that medical breakthroughs only matter if people can actually access and benefit from them – and about the global movement we accelerated.
Patient advocacy is not a “nice-to-have” around innovation.
It is part of the machinery that makes innovation work in people.
Read the full CancerWorld Special Issue here.”
Other articles about CancerWorld on OncoDaily.