As Dr Brian Koffman mentioned here: healthunlocked.com/cllsuppo... part of his contribution to the European Hematology Association (EHA) 2019 Amsterdam congress ehaweb.org was as a panel member on a satellite event sponsored by the MRD Testing Collaborative, namely the Impact and Barriers to MRD (Minimal Residual Disease) testing. My wife and I were thrilled to be invited to this session by Dr Koffman and his wife Patty and to be able to spend some time with them.
The MRD Testing Collaborative initiative began 18 months ago, with the aim of improving the knowledge of the relevance of MRD testing among specialists and patients, encouraging its use (it's very low), by educating patients about how MRD testing can influence their treatment and prognosis post treatment, so that they will ask their doctors about it. In parallel, the collaborative is establishing a process to put patients in touch with resources familiar with the use of MRD testing for their particular blood cancer, e.g. from the Leukemia and Lymphoma Society: lls.org/sites/default/files...
U-MRD or uMRD, rather than MRD Negative is the new jargon, which Dr Koffman supports. There was a consensus that that's what patients want to hear - "We can't find any evidence of your cancer remaining, it's undetectable". MRD Negative is confusing - does it mean you didn't reach MRD?
Liz Wolfe, interim CEO of Stupid Cancer was the organiser. Panel members were Lizette Figueroa, Director, Education and Support, Leukemia and Lymphoma Society, Dr Koffman, Zack Pemberton-Whiteley, Patient Advocacy Director, Leukaemia Care, Dave Fuehrer, CEO of GRYT Health - grythealth.com/about which is similar to HealthUnlocked but for a younger demographic.
Dr Koffman covered in his panel address how U-MRD in the CLL world has gone from being valuable with FCR to being immaterial with Ibrutinib, where U-MRD was rarely reached, to being important again with the short term, non-chemo treatments currently being trialled. He noted that it's a surrogate for assessing the performance of treatments, particularly in trials, but we need the data to validate that reaching U-MRD with newer treatments does indeed translate to long remission times.
After the panel session, it was great to learn of the success of the CLL Society cllsociety.org and the future plans for the society - but given the dedication of the Koffmans to their cause, that success is not surprising. As Brian says, "We are all in this together", ensuring we know enough about our disease to find specialists that are keeping up to date with the fast changing CLL monitoring and treatment landscape i.e. "Smart Patients Get Smart Care". Hence the CLL Society's focus on establishing support groups "30 established and a further 15 in the pipeline" according to Patty and on educating doctors and providing video access to recognised specialists for those unable to find a CLL specialist through the CLL Society Expert Access program: cllsociety.org/cll-society-... . Brian mentioned the challenge of specialists in just CLL staying abreast of changes in his address from the panel and has separately shared about his new focus on bringing in "new blood" research specialists through CLL Society support.
In closing, given Dr Koffman's CAR-T therapy just over a year ago, I was interested to note that the incoming president of the EHA is Prof John Gribben of Barts Cancer Institute, London, United Kingdom, here speaking with ecancer at EHA 23 about the development of EHA Topics in Focus, and the educational emphasis being placed on CAR-T cell immunotherapy: ecancer.org/video/7012/educ...
PS Brian and Patty, congratulations on your 43rd wedding anniversary celebrated in Amsterdam!