Myeloma Minute: A wedding to savor


| INSPIRATION | Wedding Bells


Wedding Marks a High Point in a Remarkable Myeloma Journey

When Michael Tuohy was diagnosed with myeloma in 2000, he and his wife Robin weren’t sure what the future would bring for their young family. But 18 years later, after a number of health challenges, Michael is now in a stable remission. On July 7, he walked his daughter down the aisle at her wedding. It was a moment for the entire myeloma community to savor.


| EDUCATION | Teleconference


Myeloma Updates 2018: Post ASCO/EHA/IMWG

Save the Date: On Thursday, August, 2, 2018, at 4 p.m. PST / 7 p.m. EST, Dr. Brian G.M. Durie will explain what’s new and exciting from these recent major medical meetings:

  • American Society of Clinical Oncology (ASC0) 2018
  • European Hematology Association (EHA) annual meeting
  • International Myeloma Working Group (IMWG) Summit
Register now for this FREE IMF teleconference 60-minute teleconference followed by a Q&A session.


| ACTION | Fundraising


| INSPIRATION | For Patients


Donate to the IMF by Shopping on Prime Day
Myeloma Survivor Yelak Biru on Undergoing Transplant

Did you know Amazon's fourth-annual Prime Day is on Monday, July 16? It features more than 100,000 deals exclusively for Prime members, making it one of the biggest shopping days of the year. When you shop at, Amazon will donate to International Myeloma Foundation. Remember - it all adds up! And get yourself something fantastic at the same time.

At the 2018 International Myeloma Working Group Summit in Stockholm, IMF Board Member and 20-plus-year myeloma survivor Yelak Biru shares his experience of doing a mock session on “So Do I Need a Transplant?” During this session, myeloma experts re-enacted the advice they would have given a younger Yelak when he was faced with this decision. From the session, Yelak gleaned that myeloma experts each have individual approaches to disease management. Yelak said, “Each patient’s treatment needs to be individualized based on the patient’s preference and available data and available treatments in their particular region or particular country. View this video now.



| INNOVATION | Clinical Trials


Phase III Tourmaline-MM3 Study Demonstrates Improved Progression-Free Survival in Multiple Myeloma Patients Post-Transplant

On July 11, 2018, it was announced that “the randomized, phase III TOURMALINE-MM3 study met its primary endpoint, demonstrating single-agent oral Ninlaro® (ixazomib) as a maintenance therapy resulted in a statistically significant improvement in progression-free survival (PFS) versus placebo.” Currently, Ninlaro is not used post-transplant. However, this trial studied Ninlaro as a maintenance therapy in multiple myeloma patients who responded to high-dose therapy (HDT) and autologous stem cell transplant (ASCT). Full data results of the trial will be presented at the 60th American Society of Hematology Annual Meeting in December.


| ACTION | Alert


Centers for Medicare and Medicaid Services Stops Payments on $10.4 Billion for Risk Adjustment Program

On July 7, 2018, Centers for Medicare and Medicaid Services (CMS) announced it will not be making the $10.4 billion in payments due to insurers this fall. These payments are for expenses incurred last year, as required by the Affordable Care Act’s (ACA) risk adjustment program.

The ACA risk adjustment program intends to subsidize health insurers who cover individuals with pre-existing and chronic conditions. To offset the costs of covering less healthy populations, the subsidies are collected from insurers with relatively healthy enrollees. Health insurers have stated that this move will likely drive up premiums and create uncertainty in the marketplace.

CMS says that they made this decision based on a February 2018 New Mexico federal court ruling. This ruling invalidated the risk adjustment formula. CMS administrator Seema Verma said that the administration is “disappointed” in the February ruling. In addition, CMS has asked the court to reconsider and “hopes for a prompt resolution that allows CMS to prevent more adverse impacts on Americans.”


| #ASKDRDURIE | Dr. Durie's Weekly Web Video Series



BOSTON Trial Fact Sheet

New isatuximab Clinical Trial: the IMROZ Study

New isatuximab Clinical Trial: the IKEMA Study

New ixazomib Clinical Trials: Learn How to Participate

Join the conversation about myeloma on the Smart Patients Message Board

July 21, 2018
IMF Regional Community Workshop
Edina, MN

August 1, 2018
Laughs for Life
Hattiesburg, MS

August 24-25, 2018
IMF Patient & Family Seminar
Los Angeles, CA

September 22, 2018
6th Annual Miracles for Myeloma 5K Race/Walk
Oak Ridge Park Clark, NJ

September 22, 2018
A Mission for Matt
Mineola, NY

October 12-13, 2018
IMF Patient & Family Seminar
Philadelphia, PA

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We Thank Our Sponsors:
Amgen, Celgene Corporation, Genentech, Janssen Oncology, and Takeda Oncology
and individuals like you who supported the IMF this year

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