Is cancer “special” in terms of the public view and the value placed on potential treatment and cures? The multidisciplinary Penn Precision Cancer Medicine Consortium discussed whether cancer is treated differently from other diseases, and then considered the more normative question of whether it should be treated differently.

We can see many ways in which cancer is “special,” in terms of the fear it evokes, the language used to describe it, and the level of research funding devoted to it. Multiple surveys indicate that people fear cancer more than almost any other condition. That fear may underlie the language used to describe initiatives to treat or cure cancer, such as “conquering this dread disease” in the Nixon’s 1971 “War on Cancer ”or new cancer “Moonshot” aimed at winning that war. Cancer, as described by oncologist Siddhartha Mukherjee, remains “The Emperor of All Maladies.”

But one consortium member pointed out that cancer often lies at the cutting edge of science, and the potential for breakthrough treatments or cures also lies behind the considerable amount of resources devoted to cancer research.

Both government and industry fund cancer research at levels disproportionately higher than the population disease burden, at least by conventional measures. Cancer accounted for 16% of all NIH funding ($5.6 billion) in 2013, and 25% of all medicines in clinical trials.

However, cancer research is not uniformly overfunded relative to disease burden, but instead varies by individual cancer. In terms of National Cancer Institute funding, overfunded cancers include breast cancer, prostate cancer, and leukemia; underfunded cancers include bladder, esophageal, liver, oral, pancreatic, stomach, and uterine cancer. One consortium member noted that cancers that carry stigma or can be connected to personal behavior such as smoking, tend to be underfunded.

Industry has been rewarded for its considerable investment in cancer drugs by prices that are high in absolute terms (see previous post), as well as by conventional value thresholds.  By one measure of value, the incremental cost-effectiveness ratio (ICER), the market seems to be willing to pay more for cancer drugs than for other drugs. A recent review of ICERs in the past decade found that the average ICER for cancer drugs was more than twice the average ICER for noncancer drugs, as shown below:

One consortium member commented that these data reflect the public’s perception of the special burden of cancer, creating a willingness to pay, or at least a tolerance for, higher prices. “Consumers seem to value avoiding a year of life lost to cancer more than a year of life lost to other diseases. If they fear some causes of death more than others, so be it.”

The “specialness” of cancer can also be seen in carve outs or other types of exceptions to drug reimbursement policies. For example, the National Health Service (NHS) in Britain created a separate “Cancer Drugs Fund” in 2011 to assure access to cancer drugs that did not reach the cost-effectiveness threshold used by its own National Institute for Health and Care Excellence (NICE); in the face of yearly budget overruns, the NHS recently created a new policy to re-institute links between the fund and the NICE process. It appears that even in a tightly managed public health care system, the willingness to pay for cancer drugs outpaces policies to contain it.

It is clear that on a descriptive level, cancer is treated differently from other diseases. The other question—should cancer be treated differently—is much harder to answer. In a cleverly titled paper, “Did It Matter That the Cancer Drugs Fund Was Not NICE? A Retrospective Review,” Dixon and colleagues note:

If there is something “special” about cancer – that it is indeed the “emperor of all maladies” – such that the moral principle of treating equivalent suffering equally should be abandoned, a debate will continue to be needed for economic evaluation to be conducted in a way that reflects an accepted ethical basis for allocation decisions.

But one group member posited that high prices for cancer drugs is a natural consequence of the free market: the public willingness to pay more for cancer drugs creates a market that bears higher prices. One challenge, at least in the U.S., is that the third-party payer system obscures the public’s view of the true costs of these drugs.

What does this all mean for precision medicine?  One consortium member said that the “specialness” of cancer—lying at a scientific frontier of genomics and being well-funded for research—makes it a paradigm of a precision medicine disease. The affected population is large enough to allow for targeting smaller subgroups but small enough to allow for focused attention on a limited number of pathways.   

Thus, in addressing the economic sustainability of precision cancer medicine, the consortium’s work may use the exceptionalism of cancer to understand issues that will arise in precision medicine for other conditions. In this work, paradoxically, the exceptional opens the door to the generalizable and—maybe—opens a window onto the future of precision medicine itself.

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The Penn Precision Cancer Medicine Consortium is a multidisciplinary group of more than 20 experts and stakeholders that has come together at Penn to develop a new framework for the economic sustainability of precision cancer medicine. Through multiple discussions culminating in a conference in May 2017, the group will tackle the hard questions that precision medicine raises for patients, providers, and payers.

The Consortium is made possible through a philanthropic gift to the University of Pennsylvania by Donald R. Gant, Wharton ’52 and the Gant Family. It is led by LDI Senior Fellows Justin Bekelman and Steven Joffe. Other members of the Consortium and their backgrounds are here.