On the Unreality of Cancer Care Finances in the US: An Example of the Emperor's New Clothes Syndrome?

Maurie Markman, MD

his commentator could think of no better way to begin a brief discussion addressing the current unreality of cancer care finances in the US than to invoke the theme of Hans Christian Andersen’s famous childhood tale “The Emperor’s New Clothes.”1

“Oh, how beautiful are our Emperor’s new clothes.... In fact, no one would admit that he could not see these clothes, which everyone seemed to think so beautiful, for fear he would be called a simpleton or unfit for his office.... ‘But the emperor has nothing on at all!’ said a little child.... ‘The child tells the truth,’ said the father. And so it was that what the child said was whispered from one to another until all knew, and they cried out altogether, ‘But he has nothing on at all!’ The Emperor felt very silly, for he knew that the people were right, but he thought, ‘The procession has started, and it must go on now!’ So, the Lords of the Bedchamber held their heads higher than ever and took greater trouble to pretend to hold up the train, which wasn’t there at all. THE END.”

Here we are in 2025, living in an era of remarkable scientific discovery. We are witnessing the preclinical development and subsequent clinical evaluation of
an ever-expanding array of novel antineoplastic strategies, seeing newly approved drugs or added clinical indications, and observing many advanced cancers being converted from illnesses with predicted short survivals (< 1-2 years) to more chronic disease processes with patients reasonably likely to live for several, if not many, years following diagnosis.

All good. Objective progress abounds. One might suggest only a true curmudgeon would even consider raising a serious complaint about the positive effect of measurable clinical outcomes being observed in well-designed trials in multiple cancer types.

But wait, the child asks, can someone provide a rational explanation for how the existing multiple uncoordinated, highly complex financial payment models in the US are supposed to work to optimize the welfare of patients with cancer at diagnosis during and following the treatment experience; enhance reasonable/nonwasteful clinical productivity while preventing physician burn- out; support innovation; develop and regularly update effective, low-cost decision-support tools; examine and potentially subsequently thoughtfully implement cost-effective therapeutic strategies; educate the next generation of clinicians; and also faithfully permit reasonable indi- vidual patient choice regarding the therapeutic journey?

Of course, as any objective external observer and likely the large majority of current participants (patients and their families, providers, health care administrators, regulators, payers, pharmaceutical companies, etc) involved in the process of the delivery of cancer care will appreciate, answers to the child’s questions are certain to be most unsatisfactory. Yet, as the Emperor declared, “the system is what we have, and the procession must go on.”

Speaking directly to the cancer care question, the US patent system, the employer-based insurance model, federal government payment strategy, individual state-based insurance regulations, and many other cancer care components were designed when cancer management was strikingly different from today.

For example, not that long ago, when cancers were either cured following surgery (possibly with added “adjuvant” local radiation therapy) or if the disease was advanced at diagnosis or later recurred following initial treatment, anticipated survival was quite short. Patented antineoplastic drug therapy might have been considered relatively expensive, but even the most expensive agents (consider the $1000-per-dose drug paclitaxel) were generally administered for a maximum of 4 to 6 cycles. This was due to both observed toxicity and likely relatively quick disease progression in most clinical settings.

Further, for most solid tumor types, there were few available, even marginally clinically effective second-line drugs. If they existed, disease progression was observed even faster than following the primary treatment program.

Fast-forward to today: It is not uncommon for novel patented antineoplastic agents to cost more than $20,000 per course, with combination regimens and multiple supportive care medications included in the treatment cocktail. And of critical relevance to the issue of cost, with improved efficacy and decreased toxicity (both very good outcomes), treatment may reasonably and appropriately be continued for prolonged periods (“maintenance”), not infrequently exceeding 1 to 2 years.

Consider the following quite sobering facts: In 2023, total health care spending in the US was estimated to be $4.9 trillion. The rate of growth over the year (7.5%) had substantially accelerated compared with the preceding 2 years (4.2% and 4.6% in 2021 and 2022, respectively).2 Viewed in an even more direct manner, this spending translates to $14,570 per person in the US. Multiple factors are responsible for this rate of increase, including the aging population with well-recognized greater medical care needs for older adults, rising expenditures for health care personel (impacted by labor shortages and high turnover), and the cost of drugs, including novel products taken chronically. These staggering increases in health care expenses and insurance premiums surely affect multiple aspects of society, including, as noted in a recent lay article, workers’ pay.3

Of course, the provision of cancer care is at the forefront of the larger sobering issues facing health care systems and society. Multiple publications in the oncology and general medical literature have documented the financial impact associated with disease management, including worrying delays in seeking treatment with negative effect on clinical outcomes,3 and the widespread recognition of the role of financial hardship on the risk to a patient’s emotional wellbeing.4

Although there are surely no simple solutions to the issues briefly highlighted above, is it finally time to fully appreciate their magnitude and begin to strategize how we might deal with the fiscal reality of “The Emperor’s New Clothes” in cancer management?

Hopefully, such efforts will rather quickly extend beyond existing academic energies focused on describing various forms of “financial toxicity,” as disturbing as the situations have clearly been shown to be, and actively move to explore (even if only as limited “pilots”) specific approaches developed to favorably influence the current trajectory. For example, thoughtful suggestions for impacting escalating drug costs and revamping the clinical trials process have recently been reported.5-7

A daunting task? Surely. But in situations like this, it is perhaps appropriate to note the oft-quoted words of Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”