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International Myeloma Foundation (IMF) Says Controversial Drug Cost Report Could Limit Patient Access to Optimal Treatment

 IMF Raises Red Flags in Advance of May 26 Hearing, Offers Alternate Approach


North Hollywood, California, May 24, 2016 —The International Myeloma Foundation (IMF) – the oldest and largest organization dedicated to improving the lives of myeloma patients while working toward a cure –says that a flawed report assessing the value of myeloma drugs dangerously oversimplifies a complex issue and could result in limiting patient access to optimal treatments.

The report, drafted by the Institute for Clinical and Economic Review (ICER), will be the subject of a public hearing on Thursday, May 26. The report’s controversial conclusion that many of the new myeloma drugs are overpriced, with limited effectiveness, has drawn sharp criticism from concerned myeloma patients and doctors.

“The IMF is keenly aware that myeloma drug costs are unsustainably high, but the ICER proposal to limit myeloma patient treatment access based primarily upon costs is neither valid nor fair,” said IMF Chairman Dr. Brian Durie. “We believe that the IMF’s research body, the International Myeloma Working Group (IMWG), will produce superior patient-centered and research-supported guidelines to effectively impact drug costs at our annual Summit in June.” Recognizing the urgency of the issue, the IMWG and IMF will issue formal recommendations within approximately two months. 

ICER report flaws cited by the IMF, whose reach extends to more than 400,000 members in 140 countries, include:

  • The absence of many newer myeloma drugs and combinations
  • The use of inaccurate data
  • An underestimation of QALYs (Quality-Adjusted Life-Years)

If ICER’s recommendations were to be adopted by the Centers for Medicare & Medicaid Services (CMS), which has looked to ICER’s findings in the past, the IMF is concerned that patients would be required to “fail first” before other, possibly more effective drugs would be an option.

“Efforts to address the skyrocketing cost of cancer treatment are understandable given the current economic landscape,” said IMF President and co-founder Susie Novis Durie. “But patients must never be on the losing end of any flawed methodology.”

An alternative approach led by international myeloma experts

The IMF strongly suggests an alternate approach. The foundation’s International Myeloma Working Group (IMWG)—an international body of more than 200 myeloma experts—will focus on healthcare cost containment in a special session at the 2016 IMWG Summit, June 7-9.

This well-respected group, which issues myeloma guidelines adopted by doctors around the world, will develop treatment guidelines to be followed during the course of the disease. The IMWG guidelines will spell out primary and secondary recommendations that allow for individualized therapy choices based on:

  • Unique features of the disease
  • Patient and/or physician preference
  • Local and/or regional access issues

Since full outcomes data are not available for most new myeloma therapies or combinations, the IMWG guidelines will be informed by expert consensus opinion. Published data will be supplemented by knowledge from ongoing clinical trials and clinical practice.

“Recommendations from myeloma experts can provide a rational alternative and a better framework for decision-making,” said Dr. Durie. “Precise outcomes data will always lag behind the need to make treatment recommendations, but the IMWG can guide the way forward with the best interests of myeloma patients at heart.”

Celebrating its 25th anniversary, the International Myeloma Foundation (IMF) is the oldest and largest foundation focusing specifically on multiple myeloma. The Foundation’s reach extends to more than 400,000 members in 140 countries worldwide. The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure by focusing on four key areas: research, education, support, and advocacy. The IMF has conducted more than 250 educational seminars worldwide, maintains a world-renowned InfoLine, and in 2001, established the International Myeloma Working Group® (IMWG®), a collaborative research initiative focused on improving myeloma treatment options for patients. In 2012, the IMF launched the Black Swan Research Initiative®, a groundbreaking research project aimed at curing myeloma. The IMF can be reached at (800) 452-CURE (2873). The global website is www.myeloma.org. Follow the IMF on Twitter @IMFmyeloma.



Sapna Kumar skumar@myeloma.org (818) 487-7455 

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