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Pain is the hallmark of sickle cell disease, but is it the only thing research should be measuring?
In the seventh episode of our Tough Conversations about Sickle Cell Disease series, our panelists rethink what clinical trials should track, and who gets left out of them. Jimi Olaghere shares what patients have told him while designing trials: many could tolerate the pain if they weren’t so tired. Dr. Halimat Olaniyan explains why lab values that matter to regulators don’t always reflect how patients actually feel, why surveys fall short, and how involving patients before a trial is even designed could lead to better outcomes. She also points to a hard truth: the support systems that help people thrive are often required to qualify for trials like gene therapy, leaving behind those who need them most. Kyle Smith calls for hemoglobin to be a more consistent endpoint and for research to look at how community and social networks shape health outcomes. Dr. Amy Cox raises the question of whether insurance priorities are driving what gets measured, and why preventing organ damage should be a priority, since it is already disqualifying people from curative therapies.
Moderated by Cassandra Trimnell, Founder and Executive Director of Sickle Cell 101.
Tough Conversations is a candid forum to say what usually goes unsaid, shining a light on the topics often glossed over but still very real barriers and priorities for the sickle cell community. This series is part of Sickle Cell 101’s Community Educational Initiatives program.
Thank you to our Research 101 sponsors: Agios, Pfizer, and Beam Therapeutics.
