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ASH is the most important meeting of the year for hematologists and tens of thousands attend the Annual Conference, but so do a handful of advocates, including myself and my friend from the United Kingdom, Zack Pemberton-Whiteley, Patient Advocacy Director for Leukaemia Care.
Leukaemia Care is the blood cancer charity in the UK and Zack is a remarkably able advocate for all the many constituents he represents, including CLL patients.
He interviewed me at ASH 2019 in Orlando to discuss why advocates should attend this meeting. Here are my answers:
- We get the latest information and can translate that medical data into patient friendly terms that patients can understand and share with their healthcare providers.
- The attending hematologists needs to be made aware of what is important to patients.
We also discussed why it is important that patient organizations such as the CLL Society present our original research at ASH, in our case: An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL), what other CLL research presented was important in my perspective, and my own CAR-T journey, finding out my own CLL was undetectable (U-MRD-6) after CAR-T, and the cost of therapy.
I hope you enjoy my interview with my friend Zack at ASH 2019, in Orlando Florida.
Thanks for reading and watching.
Stay strong, we are all in this together.
Brian Koffman, MD (retired), Chief Medical Officer and Executive Vice President, CLL Society