Myeloma Moonshot: The IMF’s Data-Driven Approach Already a Proven Success

Vice President Joe Biden’s National Cancer Moonshot Summit last week brought the search for a cure back into the news with the announcement of the “shared data initiative.”  Some myeloma patients have asked, “Can the IMF benefit from this approach?”  What they may not realize is that we’ve been sharing data all along! The IMF’s International Myeloma Working Group (IMWG) has been gathering and sharing data from all major myeloma institutions globally for more than a decade. And our Black Swan Research Initiative®, launched in 2012, is actively sharing data on our path to find the cure.

7th Annual International Myeloma Working Group (IMWG) Summit a big success

Synergy at the 7th Annual IMWG Summit was the hallmark of this year’s event in Copenhagen, Denmark. Despite very tight scheduling—many key speakers flew directly from the annual meeting of the American Society of Clinical Oncology (ASCO) in Chicago—the level of engagement and collaboration was remarkable. “I feel a strong sense of myeloma community,” observed Prof. Philippe Moreau, an IMWG Summit co-chairman. “The top myeloma investigators in the world all working together to achieve common goals.”

ICER blinks and patients benefit

The much-awaited ICER (Institute for Clinical and Economic Review) Final Report for myeloma relapse therapies, issued on June 9th, is very tentative and less of a report than an admission that they do not have the expertise to adequately assess the complexities of new myeloma therapies. Functioning under a microscope for the last few months, ICER concedes in a statement at the end of the report that a “Fail First” policy is a mistake for myeloma patients. They have also indicated that they have come to understand that each patient is unique and different and that all therapies will be required during the course of multiple relapses. Also, a system which favors use of panobinostat (an HDAC inhibitor with limited efficacy) over daratumumab (an anti-CD38 antibody with 30% activity as a single agent in relapse refractory disease) is clearly flawed.

ASCO 2016: More excitement about daratumumab (Darzalex®), and tremendous interest in value and costs

As usual, far fewer myeloma-related abstracts will be presented at this year’s meeting of the American Society of Clinical Oncology (ASCO) than are presented at the annual meeting of the American Society of Hematology (ASH) each December.  However, there is quite a bit of excitement about the results of the phase III CASTOR study to be presented at the Plenary session on Sunday, June 5. This randomized trial compares daratumumab plus bortezomib (Velcade® - [V])/ dexamethasone [d] versus Vd alone. Since this is a “late-breaking” plenary abstract, the abstract is not being released until Sunday, June 5th at 7:30 am (EDT). However, the positive interim results were provided in a press release on March 30, 2016. Beyond this abstract, the other interesting aspect of this year’s ASCO meeting is

The value of a year of life and the ICER report

The heated discussions about a report on the value of myeloma drugs issued by the Institute of Clinical and Economic Review (ICER) have brought into focus the pricing of a year of life. New York Times blogger Susan Gubar, diagnosed with cancer in 2008, has faced the challenges of paying for her treatments and care. Despite an excellent job and good benefits, she learned the hard way about the “financial toxicity of cancer treatments.” She was shocked to discover that the value of one year of her life was between $50,000 and $150,000, as discussed in a New England Journal of Medicine article, “Updating Cost-Effectiveness.” This is the value of a QALY: quality adjusted life-year.

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