Myeloma Foundation Claims Controversial Drug Report Could Limit Access to Best Treatments

Inês Martins, PhD avatar

by Inês Martins, PhD |

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Aplidin to treat myeloma

The International Myeloma Foundation (IMF), the largest organization focusing specifically on multiple myeloma (MM), is now alerting that a reportedly flawed document evaluating the cost of myeloma drugs can dangerously oversimplify a complex issue, limiting patients’ access to the best possible treatments.

According to IMF, the report controversially concludes that many of the new myeloma drugs are overpriced and have limited effectiveness, which has drawn severe criticism from patients and physicians. The report was drafted by the Institute for Clinical and Economic Review (ICER) and was the focus of a public hearing on May 26.

“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 in a press release. “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.”

According to IMF, whose reach extends to over 400,000 members in 140 countries, the ICER report is flawed regarding the absence of many new myeloma drugs and combinations. It reportedly used inaccurate data and underestimated QALYs (quality-adjusted life-years).

“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.”

The IMF claims that if the Centers for Medicare & Medicaid Services (CMS) were to adopt the recommendations of ICER – which has happened in the past – patients could be required to “fail first” before more effective drugs could be considered as an option to their treatment.

Recognizing that this issue calls for urgent action, IMF and the IMWG, a group with more than 200 myeloma experts, will issue official recommendations within two months, and will also support an alternative approach that the IMWG will present in a special session at the 2016 IMWG Summit June 7-9.

IMWG regularly issues myeloma guidelines that are adopted by doctors and healthcare providers worldwide. The working group will develop treatment guidelines to be followed throughout the course of this disease, spelling out primary and secondary recommendations that allow for tailored therapy choices. These include:

  • Particular features of myeloma;
  • Patient and/or physician individual preferences;
  • Local and/or regional access matters.

Most new myeloma therapies or treatment combinations don’t have full outcomes data yet, as assessments are still underway. The IMWG guidelines will have informed expert consensus opinions and all published data will be linked to recent knowledge from ongoing trials and clinical practices.

“Recommendations from myeloma experts can provide a rational alternative and a better framework for decision-making,” Durie concluded. “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.”