Myeloma Minute: Call for Comments on Myeloma Treatment Pricing Recommendations

April 28, 2016​

Make Your Voice Heard by May 9th on Myeloma Treatment Pricing Recommendations

Last week, IMF Chairman Dr. Brian Durie wrote a blog post entitled “ICER Report: Could a Flawed Approach to Cost-Effectiveness Assessment Put Patients at Risk?”. In this post, he issued a call for myeloma patients to voice their concerns to the Centers for Medicare & Medicaid Services (CMS) about recommendations from the Institute for Clinical and Economic Review, and to encourage CMS not to take them into account when making coverage decisions.  The window to comment is closing, so make sure you take action today!

Understanding the Nature of MRD-Positive Myeloma

A study in the journal Blood reports for the first time the biological features of MRD (minimal residual disease) cells in myeloma and shows that clonal selection is already present at the MRD stage. Supported in part by a grant from the IMF’s Black Swan Research Initiative, the study “sets the stage for understanding the nature of MRD-positive disease,” said Dr. Brian Durie. “How many clones are left after initial therapy? Are these clones old or new? How have clones “morphed” with treatment? Does multi-drug therapy produce better results? From descriptions of the immune and molecular features of resistant clones, some answers are starting to emerge.” To read the study, “Phenotypic and genomic analysis of multiple myeloma minimal residual disease tumor cells: a new model to understand chemoresistance,” which was led by Black Swan Research investigator Dr. Bruno Paiva, click HERE.

FDA to Host a Public Meeting on Patient-Focused Drug Development for Neuropathic Pain Associated with Peripheral Neuropathy

On June 10, 2016, FDA is conducting a public meeting on Patient-Focused Drug Development for Neuropathic Pain associated with Peripheral Neuropathy. FDA is interested in obtaining patient input on the impact of neuropathic pain associated with peripheral neuropathy on daily life and patients’ views on currently available therapies to treat the condition. Many multiple myeloma patients experience peripheral neuropathy as a symptom of the disease itself, or as a side effect related to the use of medications to treat myeloma. If you are interested in attending, the meeting will take place from 1:00 pm to 5:00 pm ET at FDA White Oak Campus in Silver Spring, MD. To register for this meeting or view meeting webcast, click HERE.

Make Summer Fundraising Fun Time!

As summer approaches, it’s the perfect time to hold a “FUNraiser.” We’re here to help you plan and organize a host of fun events such as pool parties, barbecues, graduations, 5Ks, and garage sales. IMF Director of Member Events Suzanne Battaglia is available to help you every step of the way to plan and organize your event. To learn more about holding a “FUNraiser" with the IMF team, contact Suzanne Battaglia at 1-800-452-CURE (2873) or by email at [email protected]. More information is also available HERE.

We Would Like to Thank Our Sponsors: Takeda, Celgene, Amgen, and Bristol-Myers Squibb

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