By Daniel G. Aaron
Cancer is fearsome, unstoppable even. So the story goes. Yes, you can secure some extra time with loved ones, and — if you are lucky — maybe your cancer is susceptible to drugs or surgery. But for most people, cancer sounds like a death sentence. The proper response is to throw drugs and radiation at it.
Cancer seems so unstoppable that many have started rifling through their cosmetic products and foods to eliminate all possible carcinogens. Despite the fact we have regulatory regimes to ensure our food, makeup, the air, and drinking water are free of carcinogens, people don’t trust them. There is an intuitive sense that products are not well regulated, leaving individuals to moderate their own cancer risk. In fact, the majority of Americans do not hold strong trust in our health agencies like FDA and CDC.
In my forthcoming article, I argue that our cancer regulatory regimes inadequately protect the public. I believe deregulation is one form of the “privatization of cancer.”
The Privatization of Cancer
Privatization is the transfer of public power to private hands. Traditionally, it occurred through a clear delegation, such as governments delegating the management of utilities to private companies. In 2017, 72% of U.S. customers received power from a private company.
But privatization takes many forms. Deregulation of the public sphere is a form of privatization because it allows private companies to assume previously public responsibilities. Pharmaceutical development in the U.S. has largely been privatized, with private companies submitting data on new drugs to be reviewed by the U.S. Food and Drug Administration.
Cancer, as I argue in my forthcoming article, has become highly privatized. What emerged in the 1950s and 1960s as a major public issue has now been assigned to private industry.
Levels of Privatization
The privatization of cancer occurs on multiple levels:
- Privatization by Deregulation — The systematic hampering of agencies that are tasked with checking our food, cosmetics, cleaning products, air, and water for carcinogens.
- Privatization by Pharmaceuticalization and Medicalization — The transformation of cancer into a patient-by-patient medical issue, as opposed to a public policy problem. Our regulatory systems, including the Cancer Moonshot, greatly favor this paradigm.
- Drug Development in Hyperdrive — The devolution in FDA standards for new cancer therapies, which has led to the sale of ineffective/minimally effective drugs with exorbitant financial costs—to health care systems and patients.
- Privatization of Public Dollars — The siphoning of money by cancer medicine from public health and other public systems. For example, Merck’s total revenue for pembrolizumab (Keytruda) in 2022 was $20.9 billion, while the U.S. spent $0.68 billion on tobacco regulation in the same year.
- Cultural Privatization — American movies, TV, and books generally tell stories of cancer that begin with diagnosis and end with cure or death. More rarely do they tell the story of carcinogens in our environment and consumer products. (One recent counterexample is the HBO TV show Not So Pretty, which discusses carcinogenic cosmetics.)
So with cancer, the stories we tell, the money we spend, and the approaches we follow are more aligned with a private, ex post, single-patient, medicalized, and pharmaceuticalized approach.
Many readers might be thinking, “What about screening?” Screening is slightly more public-oriented because it involves early detection and intervention, but the excitement associated with screening is a bit misleading. Researchers have pointed out that screening is often not firmly grounded in evidence. A landmark New England Journal of Medicine study in 2022 of more than 84,000 participants found that colon cancer screening had no impact on all-cause mortality. There are critiques of this latter study as well as conflicting evidence, but suffice it to say we have failed to establish the effectiveness of screening in a rigorous way, and screening is a one-by-one approach that could be somewhat obviated by regulation of carcinogens in the environment. Screening is also very profitable for companies in this business.
Example: The Toxic Substances Control Act (TSCA)
TSCA is the quintessential cancer prevention statute, yet it has been defanged, leaving the management of cancer to private industry. TSCA gives the Environmental Protection Agency (EPA) the authority to require companies test chemicals or mixtures that could harm health or the environment. It also allows EPA to issue warnings, limitations, and bans of harmful substances. But the program was underfunded and subject to several structural barriers. Indeed, the law was largely written by industry — perhaps to be ineffective. Between 1976 and 2013, according to a GAO report, EPA only limited or banned five existing substances. And of those five restrictions, the asbestos ban was invalidated by the U.S. Court of Appeals for the Fifth Circuit in 1991. Asbestos is incredibly carcinogenic, yet it is still legally sold and used in the U.S.
President Biden has initiated a new TSCA push, which would include a second attempt at banning asbestos — which industry appears to be opposing. Despite this effort, the barriers to TSCA largely remain, including underfunding and the risk of litigation, which forces EPA to be fastidious despite the urgency of toxic chemicals in our products. (A change in administration may also doom these efforts.)
This pattern of deregulation echoes across America’s cancer regulatory regimes.
Scholars have not yet paid attention to how multiple forms of privatization can intersect, causing the accrual of power into private hands. The privatization of cancer pushes against the primacy of the legal doctrine of “separation of powers,” which aims to divide power among the three branches of the federal government. It may be that much of their power has already devolved to corporations, including through intentionally obscure mechanisms like the one I describe in my article.
The Environmental Justice Movement
The EJ movement has enjoyed successes in reframing cancer into a public and community problem. Particularly Black and Brown communities have rallied against disproportionate cancer risks caused by the selective location of industrial facilities in communities of color. The spirit of injustice that has animated the environmental justice movement could serve as a model for all Americans to rally against the pollution of our air and water, the sale of cancerous products, and the impediments legal structures have raised against public health. Just as the civil rights movement held a mirror for us to see injustice in America, so, too, does the environmental justice movement illuminate a systemic problem we have minimized and privatized for decades: cancer.