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Facts Are Stubborn Things: The Medicare Part B Experiment, a Patient Advocate's Perspective (Part III)

Debra Madden is a 2-time cancer survivor who was diagnosed with Hodgkin's lymphoma as a young adult and breast cancer nearly 20 years later, which was thought to be secondary to the radiation she had received for her original cancer treatment. Debra became an active Cancer Research Advocate following her second cancer diagnosis at the age of 42 years. She is currently a member of the ECOG/ACRIN Cancer Research Group and the Patient-Centered Outcomes Research Institute's Advisory Panel on the Assessment of Prevention, Diagnosis, and Treatment Options. She also serves on multiple grant review panels, including the Congressionally Directed Medical Research Program Breast Cancer Research Program. Debra blogs at "Musings of a Cancer Research Advocate", ( and you can follow her on Twitter at @AdvocateDebM.
In Part II, Ms Madden discussed her concerns regarding the reaction of some to CMS' proposed approaches to "value-'" or "indications-based" pricing for specific drugs based on their different levels of effectiveness for different disease indications.  In the conclusion to this series, she focuses on the troubling financial struggles many cancer and chronic disease patients are facing and the new initiatives that many groups are now establishing to bring a more informed awareness and increased level of science to considerations of overall value of care.

As citizens and patients in this country, the fact is that a majority of us worry about the extent of our healthcare coverage, whether or how long we’ll continue to have access to high-quality care, and the continued escalation of out-of-pocket costs, including insurance premiums, deductibles, specialty visit co-pays, and prescription drug co-pays. And for those of us with cancer or chronic conditions, such as multiple sclerosis, the medications required to treat us account for a significant percentage of spending on prescriptions. With the introduction of new, increasingly expensive drug agents, particularly the  novel therapies that are emerging for many cancer types, treatment with just one of these medications—and many of us require combination therapies—can cost up to tens of thousands per month. Per Gary Lyman, MD, MPH, oncologist at Fred Hutchinson Cancer Research Center in Seattle and codirector of the Hutchinson Institute for Cancer Outcomes Research, “For many, the indirect and out of pocket expenses for cancer care are more than they can handle, leading to interruption or even cessation of potentially lifesaving treatment.…We know that cancer is one of the most, maybe the most, common causes of bankruptcy in the country.”

To come full circle, as so many of us are struggling to cover the costs of our medications and making extremely serious decisions concerning whether to continue with treatment, to face bankruptcy, to take on extra hours even when we’re at our sickest, shouldn’t one of the most important questions that we discuss be, “What is the clinical effectiveness of these medications that are costing us so much?” In other words, is it possible that some of these agents, despite being extremely expensive, may be no more effective than another much less expensive medication, or may add only a few additional weeks of life yet with substantial adverse effects that greatly impact quality of life?

In his role as HICOR’s codirector, Lyman noted that “We’re trying to bring a greater awareness and a high level of science to the discussion of the cost and overall value of cancer care.” He explained that in many cases, oncologists and their patients frequently have choices concerning which specific cancer treatment can be used. “We may have 2 treatments that give you the same overall benefit, but one is much less costly,” he stressed. “Therefore, it has a great value in the sense that you’re going to get to the same place, but you don’t need to go into bankruptcy or create enormous financial distress for yourself or your family.”

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