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Myeloma Minute
May 19, 2016
May 19, 2016
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This week's question: What is the new Black Swan project that studies families with myeloma?

Multiple Myeloma Bone Study

New ARROW Clinical Trials: Learn How To Participate

New Selinexor STORM Clinical Trials: Learn How To Participate

New Ixazomib Clinical Trials: Learn How To Participate

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Upcoming Events

June 18, 2016
Regional Community Workshop

Ann Arbor, Michigan


June 25, 2016
Regional Community Workshop

Minneapolis/Edina, Minnesota

August 19-20, 2016
Patient & Family Seminar

Los Angeles, California








What Is a Life Worth?


QALY stands for the quality of an adjusted life year. It is a ratio that economists use to determine the quality and quantity of life in order to ascertain the cost of medical interventions. But, as IMF Chairman Dr. Brian Durie asks, where do these numbers come from? In his blog this week, Dr. Durie calls for regulatory agencies to respect patients’ rights to the best care possible by not assessing them based on an arbirtrary number such as QALY. To read Dr. Durie’s blog, please click HERE.


Register Now for May 26th Livestream Broadcast of Public Hearing on ICER Report


In recent weeks, a draft report on myeloma drug cost-effectiveness produced by the Institute of Clinical and Economic Review (ICER) has sparked controversy in the myeloma community. ICER is holding a public discussion of the report’s findings on May 26th in St. Louis. Panelists will include two IMF Board Members: North Texas Support Group Leader Yelak Biru and Mayo Clinic myeloma researcher and professor Dr. Vincent Rajkumar. IMF Director of Support Groups Robin Tuohy will deliver a public comment. To register for the livestream broadcast of the ICER meeting, please click HERE.To email ICER about your concerns, click HERE. You may also chose to educate members of Congress about this issue, and to seek their support in asking ICER not to move forward. To email your Senators and Representatives, click HERE


FDA Warning: A Counterfeit Cancer Drug Discovered Abroad


The US Food & Drug Administration (FDA) has alerted health care professionals that a counterfeit version of the FDA-approved cancer drug, BiCNU (carmustine for injection) 100mg, has been found in some foreign countries. No reports of this drug have been made in the US market nor have there been any instances of US patients receiving the drug. The IMF would like our community to be aware of this counterfeit drug, because the authentic product is approved to treat different types of brain cancer, multiple myeloma, and lymphoma. BiCNU, manufactured by Emcure Pharmaceuticals Ltd., is distributed by Heritage Pharmaceuticals, Inc. in the US. It is essential that health care professionals inspect the BiCNU vial to ensure it is authentic. Even though the outer package of the authentic and counterfeit versions may look the same, health care professionals and patients are urged to look at the BiCNU vial inside its packaging. To review lot numbers, batch numbers, manufacturing dates, and expiration dates that have been identified on the counterfeit version, click HERE.


Families Affected by Myeloma Come Together to Race to Raise Myeloma Awareness


The Fainberg and Mencher families are coming together again to host the 2nd Annual Race to Beat Myeloma. Both families have been affected by this illness. Benson Klein, grandfather of Ava, Cece and Sebastian Fainberg, was diagnosed with myeloma in 1998. Andrew Mencher, father of Julia, Eliza and Nicholas Mencher, was diagnosed in September 2012. Both Andrew and Benson are living fun and full lives while continuing to fight the battle against myeloma. Race to Beat Myeloma is a way to raise awareness of the disease. Participants can join these families for the event and give to the IMF. The event takes place on Saturday, June 11th at 8:30 a.m. ET in Wheaton Regional Park in Wheaton, MD. To register or donate, click HERE.  


Andy Sninsky: All the Places He'll Go!


Andy Sninsky, a multiple myeloma patient whose disease is in complete response, has been riding his bike across the country to retrace the trip of the same journey he took when he was 19. This self-described “Crazy Guy on a Bike” (now 66 years old) has been busy pedaling from one multiple myeloma support group to another while visiting friends and seeing attractions in the Deep South. Altogether, he has logged 500 miles this past year in the US alone. Unstoppable, Andy is packing his bags to fly to Europe to begin the second leg of his bike tour as of May 25th.  While overseas, Andy plans to visit with Dr. Heinz Ludwig, who was a key coordinator of a clinical trial in which Andy participated. Andy will also travel to the Ukraine to explore his family’s ancestry. To follow Andy along his journey, visit his blog or follow his IMF donation drive HERE.




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