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Top Hematologists Weigh in on Cancer Medicine Cost Controversy

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Published on April 5, 2018

“cancer drug costs”

More about the very front-and-center financial and access issues about cancer oral medicines in the U.S.: An interesting article that dives into the controversy on the cost of cancer medicines crossed my desk the other day written by physicians including Dr. Rafael Fonseca, Dr. Paul Richardson and Dr. Noopur Raje who we have featured here on Patient Power. There’s also a patient we know included. We thought we would pass it along for your consideration as part of the ongoing debate about cancer drug costs, access and value.

“Cost vs. Value and the Price of Innovation in Cancer Care” is a case study of “Oral Anticancer Drugs in Multiple Myeloma,” but it could apply to many cancers and other serious health conditions as well. We were impressed by the depth and detail of this examination of a difficult, complex and emotional issue. Admittedly, we just scratch the surface here. And we agree with the opening sentence of their introduction that “great … controversy exists regarding the cost and affordability of cancer medications in the United States.” This is an understatement, for sure, in this election year and not the last word on this subject.

As the title implies, the article deals with a huge concern facing cancer patients. As a woman wrote April 2 in THE HILL, “I suffer enough without the burden of high drug prices.” Many of us do and 11 percent of respondents to a recent Patient Power survey say the cost of cancer treatment has had dramatic impact on their financial stability. Another 36 percent say there’s some impact and many more worry what could lie ahead.

So let’s see what our prominent friends have to say in this paper. What struck me is that the authors are not from the pharmaceutical industry but are five respected myeloma specialists, a patient and an economist who is herself a cancer survivor, listed below.*

They begin with this premise: “At the heart of these discussions is whether the current pricing for newer drugs justifies their value.” While there is no formal economic analysis, they state what we as patients all know—to talk about cost in a vacuum is inadequate.

There is an economic value to living longer, to fewer hospitalizations and operations. Better medications with fewer side effects improve our quality of life and that must be worth something even if we can’t assign a price to it. And what is it worth to us to be alive for weddings, births and other family milestones? Or, as the paper states, “pharmaceutical innovation is one of the primary drivers of increased life expectancies in recent decades,” and isn’t that worth something?

Of course, while we all like to live longer while feeling better, that doesn’t pay the bills. And if we can’t pay the bills, how can we live a meaningful life?

So what do our friends say who wrote the myeloma case study? Spoiler alert—there is no easy answer, but there is help available as long as we don’t grasp at easy answers that could have unintended side effects.

First, when examining the issue don’t confuse cost - the price of a medication, with affordability—what we as patients have to pay directly. That takes us back to what we’ve been talking about for several months now:

  1.      Insurance: The article says, “The original intent for medical insurance products was to insulate individuals against financial risk for large expenditures associated with catastrophic illness.”
  1.      Co-pays: Again it says, “It is worth noting that insurers are pushing more of the costs to out-of-pocket. Even if there is no increase in the actual drug price, it often feels like it to patients.”
  1.      Rebates to insurers and middlemen not passed on to patients: Quoting from the article, “Co-pays are usually calculated based on list prices. For a simple example, assume that a drug is listed at $100. The patient has a co-pay of 20 percent. But the price after negotiated discounts and rebates is $40. Had the co-pay been based on the negotiated price, the patient’s portion would have been $8 compared to the $20 co-pay based on the list price.”

Some things we can do:

Under Medicare, which covers me at age 67 and maybe you too, the pharmaceutical companies should be allowed to provide direct assistance for those co-pays. “Because of current regulations, direct co-pay assistance from manufacturers is forbidden, and thus third-party patient assistance foundations are the only entities permitted to facilitate financial support to help Medicare patients overcome the co-pay affordability hurdle, which can be burdensome.”  (As you know, some foundations have had their funds depleated or had legal fights with some states. This needs to be resolved to lessen the burden on patients and the uncertainty).

And getting new drugs to patients sooner saves time, money, and it can save patients.  “One scenario that could result in the best long-term return on investment is to accelerate the drug approval process, thereby reducing the costs of bringing a drug treatment to market.” (We believe more active communication with patients about trials can speed understanding and enrollment and quicker completion of trials.)

The paper looks at a variety of other options that sound promising, but in reality these suggestions might not work as expected. For example, why not import drugs from countries where patients pay less? Because, according to the paper, (not according to Patient Power, but according to the paper) our higher prices also give us earlier access to the latest medications, “sometimes measured in years rather than months.”

Why not just impose guidelines for the price of new medications? Again, because the paper says artificial price controls risk stifling new drug development, and often miss the point. The authors of this paper cite an example of a drug favored under cost containment guidelines that in fact has “major toxicity problems.” Do we as patients as want to trade cost for safety or lower quality of life?

Finally, attitudes and concerns should match the facts. The paper cites a  recent Kaiser Health Tracking Poll that showed that a large majority of Americans thinks drugs are too expensive. That’s not a surprise, say the authors, given “the constant flow of negative public information about these companies and the high cost of drugs.” Yet the same poll also showed good news. The majority of patients surveyed “had no difficulty in accessing medications.” That’s as it should be.

If you’re among those who do have difficulty accessing your medications, we invite you to write into Dear Stacey, our Q&A series featuring healthcare attorney Stacey Worthy and in partnership with the Aimed Alliance. Also, see our recent program with Nancy Novack of with resources to help you, including And we invite you to read “Cost vs. Value and the Price of Innovation in Cancer Care”.

As we have written several times, the discussion about the cost of treatment is an urgent and a emotional one. Doctors feel our pain too. So let’s have a fact-based discussion to improve our complex system and so everyone can get the treatments they need and deserve without breaking the bank.

I welcome your thoughts at

Andrew Schorr
Co-Founder, Patient Power LLC


*authors of  “Cost vs. Value and the Price of Innovation in Cancer Care”


  •        Rafael Fonseca, M.D., Visiting Healthcare Fellow, Goldwater Institute.

•      Noopur Raje, M.D., Professor of Medicine, Harvard Medical School. Director, Center for Multiple Myeloma, Massachusetts General Hospital Cancer Center.

•      Robert M. Tufts, Visiting Clinical Assistant Professor, Yeshiva University. Myeloma patient.

•      Parameswaran Hari, M.D., Armand Quick – William Stapp Professor of Hematology at Medical College of Wisconsin. Interim Chief, Division of Hematology and Oncology.

•      Saad Usmani, M.D., Clinical Associate Professor of Medicine, Director of Plasma Cell Disorders, University of North Carolina at Chapel Hill, Levine Cancer Institute.

•      Paul Richardson, M.D., Professor of Medicine, Harvard Medical School. Clinical Program Leader / Director of Clinical Research, Jerome Lipper Multiple Myeloma Center at the Dana-Farber Cancer Institute.

•      Jennifer Hinkel, M.S., Partner, McGiveny Global Advisors. Cancer survivor.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


Your site is AWESOME! Thank you all so much for this incredible resource to families who are in crisis/affected by cancer.

— Loyal Patient Power viewer

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