Myeloma doctors, patients and advocates are speaking out about a new report being developed by the Institute for Clinical and Economic Review (ICER) to determine whether innovative myeloma therapies are worth the money. The institute claims the report will help insurers make more cost-driven reimbursement decisions, but critics say that it will only limit treatment options and shorten lives.
Rafael Fonseca, Chair, Department of Medicine at Mayo Clinic in Arizona, believes that the Institute of Clinical and Economic Review’s report on innovative myeloma therapies is misguided.
The American Society of Hematology, the Cancer Support Community and the Multiple Myeloma Research Foundation (MMRF) are among the many organizations in the community that have voiced their concerns about the ICER report since the initial draft was released in April and at a public meeting held to discuss the report last month. A subsequent version was issued in May, and the final report is expected to be published in June.
Rafael Fonseca, M.D., Chair, Department of Medicine at Mayo Clinic in Arizona has written a formal critique of the report. “The important question here is, ‘Value for whom?’ It’s certainly not the patient,” he said. “The institute has framed the report around the notion of how insurance companies can get the best value for treatments, so the intent here is to ultimately limit treatment options.”
The institute claims its report will incorporate perspectives from all health care stakeholders, but whether they will follow through remains to be seen. The MMRF, for example, expressed “serious concerns” with the institute’s efforts back in March—about a month prior to the report’s release, in response to a direct inquiry from ICER for feedback. The draft version of the report did not address these concerns, and the MMRF has gone out of its way to clarify its limited involvement.
While ICER revised its report to clarify some stakeholder input and data sources, many concerns have largely been disregarded. The institute claims that patients, doctors and payers must make decisions today based on the evidence at hand. But for doctors, that evidence includes not just published data but also ongoing trials and their own clinical experience.
“Overall, the report in its current state includes minimal input from stakeholders within the myeloma medical or patient communities,” Fonseca said. “By no means does this report accurately reflect current clinical practices in myeloma today.”
Over the past decade, new therapies for myeloma have helped patients live longer, but doctors are still trying to figure out how to best treat patients with all the options now available, including testing new combinations.
“Anyone would be really challenged to assess the value of myeloma individual therapies at this point in time,” Fonseca said. “We are still learning about these treatments on the medical side, so pretending that we could begin factoring in economics into the equation is pure nonsense.”
We are still learning about these treatments on the medical side, so pretending that we could begin factoring in economics into the equation is pure nonsense.
Brian Durie, a multiple myeloma specialist at the Cedars-Sinai Medical Center and chairman of the board of the International Myeloma Foundation, believes that myeloma medical experts—not ICER—should be providing treatment recommendations. He notes that the International Myeloma Working Group, which consists of over 200 experts, will meet this June to develop guidelines that will allow for an individualized treatment approach, based on a patient’s unique characteristics and preferences, that evolves as the disease progresses.
Adaptation and adjustment are essential in myeloma treatment today. It’s a complex disease with multiple genetic factors that make each patient’s case unique, and it requires an individualized, malleable approach. Attempting to generalize the effectiveness—let alone cost-effectiveness—of a therapy across the board for all myeloma patients doesn’t account for the realities of the disease.
The ICER assessment also fails to capture the total cost of care and the economic benefits of these medicines. New therapies can reduce costs for doctor’s visits and hospitalizations and allow patients and caregivers to be more productive and to contribute to society. Last year, a study found that providing the most appropriate myeloma treatment option delayed relapses and the accompanying spikes in costs, making those therapies cost-effective in the long run.
“Total cost of care is almost never looked at,” said Fonseca. “We need to start defining value in other ways than just costs. We need to focus on the value of myeloma therapies to individual patients.”
Learn more about our take on the method used by ICER to assess the value of innovative treatments in our related story.