How the staggering financial burden placed on US cancer patients results in catastrophic effects for health and wellbeing
“The cost of one chemotherapy infusion was more money than I had earned in any year of my life,” Anne Boyer confesses in The Undying — Boyer’s new book chronicling her experience with breast cancer. Her account conveys with a stark, tragic mastery the degradation, pain, and peril cancer patients encounter vis-a-vis the financial toxicity of the US’s largely for-profit healthcare system. In The Undying, Boyer relates how this financial toxicity did not just affect her as an individual patient but engulfed the lives of her friends who acted as her caregivers as well as of her family members. A single mother without savings, without a partner to care for her (financially, emotionally, or otherwise), and with a limited income, Boyer was forced to return to work a mere ten days after her double mastectomy. Advised by her employer to hide her illness, Boyer describes her return to her position as an adjunct professor:
“I’ve been teaching through the months of chemotherapy, but, despite this, I’ve run out of medical leave. I am driven there by my friends, many of whom have already had to make great sacrifices to help me. Some write checks, some help me drain the surgical tubes stitched to my body, others send mixtapes or cannabis popcorn. My friends carry my books into the classroom, because I can’t use my arms. Delirious from pain, I give a three-hour lecture on Walt Whitman’s poem “The Sleepers” — “wandering and confused, lost to myself, ill-assorted, contradictory” — with the drainage bags stitched to my tightly compressed chest. My students have no idea what has been done to me or how much I hurt.”
Incisive and unabashed in its flinching vulnerability, Boyer’s account relays how the crushing economic burden of cancer for Americans — in all its cruel banality — is practically unfathomable.
The financial costs of cancer treatment in the US are often colossal and ruinous. Most analysts expect these costs to continue to rise. In 2010, the cost of cancer care in the US amounted to approximately $124.57 billion. By 2020, analysts predict this number to rise to $157 billion. In the last decade alone, the cost of drugs for cancer treatment more than doubled. Cancer care pharmaceuticals typically cost somewhere between $6,000–12,000 a month, although some drugs are priced above $24,000 a month. Health experts expect the next generation of drugs to be even costlier. Moreover, the price of treatment increasingly falls to individual patients with far-reaching, calamitous consequences for their health and quality of life. This deleterious economic burden and cost-related distress is often referred to by health researchers and medical experts as “financial toxicity.”
The burdens of financial toxicity often accrue for patients via out-of-pocket treatment expenses: costs that are not covered by patients’ insurance policies. In addition to serial premium payments (what a person pays for health coverage regardless of whether they make a claim), patients can amass out-of-pocket expenses through insurance deductibles, copayments, and co-insurance fees:
A multitude of studies show that cancer patients and survivors are more vulnerable to financial toxicity. The extent to which a patient might encounter financial toxicity is contingent on a host of factors including: the income of other people in the patient’s household; the amount of debt a patient had prior to their cancer diagnosis; their assets; their age and race; the costs related to their cancer (some cancers are much more expensive to treat than others); the severity of their cancer (costs are nine times higher for patients with late stage cancers compared to those for patients with early stage cancers); how the cancer and treatment affect their employment; in addition to, whether a patient has health and disability insurance and what these policies agree to cover.
A patient diagnosed with cancer may experience a loss of income and assets; debt; difficulties paying for housing, food, and bills; bankruptcy; and a higher risk of early mortality. Cancer survivors report higher out-of-pocket costs than those who have not had a cancer diagnosis and some report spending more than 20% of their annual income on healthcare. Financial distress may plague survivors for decades after they are diagnosed as they may need to pay for ongoing treatments or for the late effects of their treatment.
Studies show that patients who cannot afford their cancer treatments — even those who have insurance coverage (and millions of people in the US do not) — often use their savings and borrow money to pay for care. Potentially deepening their financial distress, 40–85% of patients need to take time off work or quit their jobs entirely as they undergo treatment. Oftentimes, patients will also reduce their spending and sell possessions or property to meet the costs of their care. Typically, however, these lifestyle alterations are not sufficient to protect patients from incurring debt or needing to declare bankruptcy. A 2018 research study published in the American Journal of Medicine revealed that over 42% of 9.5 million patients diagnosed with cancer between 2000–2012 fully depleted their assets and over 30% incurred debt (consumer, mortgage, or home equity) by the second year of their diagnosis.
Various research endeavors also suggest that in addition to debt and bankruptcy, financial toxicity may also engender other catastrophic effects for patients. For example, patients may not take their medications as directed (skipping doses and taking less medicine than prescribed) or refill necessary prescriptions in an effort to save money on copayments. Research shows that the higher a patient’s copayment is, the less likely it is that the patient will take their medication as directed. Studies have also indicated that patients who experience financial toxicity report having a lower quality of life, greater symptoms, and more pain. They report poor physical health, poorer mental health with higher rates of depression, decreased satisfaction in social relationships and activities, and intensified fears that their cancer may return. One study revealed that some patients feel financial toxicity to be more severe than physical, emotional, social, or family distress.
An American oncologist I interviewed remarked succinctly and soberly: “There are people who are just broke by healthcare costs!” In addition to several of the effects of financial toxicity I have outlined above, he also highlighted the ripple effect it may have on entire families (or, even the other social relations we are dependent such as in the case with Anne Boyer and her network of caring friends). To exemplify this, the oncologist reiterated the typically expressed medical maxim that cancer patients should not be attending their appointments alone — especially if one is 65 years or older. Given that reality, he noted:
“So your son or daughter, or daughter-in-law, grandchild, or whatever has to take time off work to get you there and then you have to think about what affect that has on childcare. Cancer is hideously expensive for everyone. Whether or not you have money, you still worry about being a burden to your family.”
The United States’ hybrid healthcare system is composed of both public and private components; the private sector provides the majority of care. Prior to the Second World War, the US healthcare system primarily operated through a fee-for-service model. During the war, however, the federal government enacted price controls and a wage-freeze in order to combat inflation given the strained labor market. Unable to offer competitive salaries although eager to retain and attract employees, companies began offering insurance packages including healthcare coverage as a fringe benefit marking the advent of employee-sponsored healthcare insurance. In 1954, the IRS declared employee sponsored insurance premiums as exempt from income taxation thereby codifying this practice.
While the national government oversees the Veteran Health Administration hospitals and state governments manage public safety hospitals, the vast majority of hospitals in the US are privately owned (70% of hospitals are run by nonprofits and the remaining percentage are operated by for-profit entities). Although medical research is funded through both public and private sources, the pharmaceutical and medical device industries are private. The US uses healthcare services at similar rates to other high income countries with the exception to the use of diagnostic tests such as CT scans and MRIs. Population health in the United States varies widely and the Commonwealth Fund reports that life expectancy in the US is nearly three years less than the average life expectancy in other high-income countries.
A 2018 report from the Institute of Health Metrics and Evaluations at the University of Washington indicates that the US healthcare system ranks 27th in the world and last among all high income countries. Nevertheless, the US’s healthcare spending is, by far, the highest in the world. Last year, the US spent $3.65 trillion dollars on healthcare. When compared to other high income countries, the US pays more for: doctors, nurses, and specialists (a G.P. on average earns $218,173 — double the salary of all other high income nations); pharmaceuticals (~$1,433 per person vs the average of $749); and health care administration (the US spends 8% of its total national health care expenditures on administration compared to the average of 3% spent by all other high-income countries). As of 2018, healthcare comprises nearly 18% of the US’s total GDP; the average spending total among all other high income countries amounts to 11.5% of GDP. To put this in perspective, the percentage of GDP spent on healthcare in 2017 by the United Kingdom, whose government provides universal healthcare coverage vis-a-vis its National Health Service, amounted to 9.6% of its GDP.
2019 Gallup research indicates that Americans borrowed approximately $88 billion dollars in 2018 to pay for healthcare. Furthermore, the accompanying survey Gallup conducted revealed that one in four Americans have skipped treatment due to costs and that virtually half of Americans fear bankruptcy in the event of a health emergency. This is especially troubling given that the Federal Reserve reported in 2018 that if faced with an unexpected expense of $400, 40% of Americans would be unable to cover the expense or would need to borrow or sell something in order to cover it. Reflecting this trenchant reality, a 2009 study found that medical bills were responsible for more than 62% of all bankruptcies in the US. Critical research conducted by the Center for Society and Health strongly links economic wellbeing and health outcomes; in short, people with lower incomes in the US report poorer health, have a higher risk of disease, and live shorter lives.
The majority of Americans access healthcare through private insurance secured through their employment and, to a lesser extent, via exchanges enabled by the Affordable Care Act of 2010, colloquially known as “Obamacare.” College students and federal employees can secure coverage via their university, college, trade school, or federal institution, respectively. A small portion of Americans purchase their insurance as individual consumers and an even smaller percentage of citizens access care vis-a-vis the public sector.
Current and former cancer patients living in the US who attain coverage via private insurance assert that a constituent aspect of financial toxicity and distress following a diagnosis involves sorting through and making sense of engorged, encoded, and convoluted medical bills. Patients and their carers report seemingly endless days of examining these bills and subsequently calling insurance providers to argue that certain procedures, services, or drugs should be covered; that their system made errors in coding their treatment and charged them for treatments they did not receive; and for double-billing. The number and scope of these bills are often not just perplexing but emotionally overwhelming. Typically, multiple different bills are being sent over a period of months and sometimes years. Patients spend precious recovery time attempting to sort through their insurance bills and many concede it takes a heavy psychological toll on them. One patient I interviewed who I will call Rachel spent nearly a year after her final treatments contesting inflated charges (such as a hefty charge for aspirin she was never administered); incorrectly coded procedures; “extra days” spent in the hospital; and enlisting her doctors’ support in arguing that certain treatments were eligible for coverage under her policy. Rachel also explained that because she was diagnosed with her cancer at the end of the calendar year, she hit her deductible twice. She was forced to pay her doubled deductible before receiving any care at all. Moreover, Rachel was not always successful in securing coverage for her care. She related her frustration to me:
“Some of that stuff got denied and I have to deal with it. And you know, when you’re not feeling well and you are on pain medication after you’ve had surgery or you have bone pain because you are going through chemo therapy and you’re a little loopy and you have to sit down and you are looking at a hospital bill or a chemotherapy bill and you have to be intelligent and sit on the phone with the insurance company and say, ‘Y’know, this isn’t a double billing. And the provider is telling me they coded this correctly and you need to pay this.’ If you have any questions, you need to call the provider not me. I didn’t make the mistake, they are telling me they didn’t make the mistake. You guys need to talk to each other. This is not my expertise. You guys need to talk to each other. I didn’t do the coding. If you have a coding issue you need to talk to them not talk to me.”
In addition, insurance companies negotiate with healthcare providers over costs and coverage. This often leads to cancer patients losing access to their tried and trusted medical specialists and staff. A US cancer patient I interviewed who is currently in remission, who I will refer to as Jane, experienced just this. She related this predicament to me.
“So that’s the sort of crazy-making in the US because the hospitals, the doctors, your healthcare whatever — they negotiate with the insurance company every year. So you may have your doctors lined up and then by the end of the year, Blue Shield [a health insurance company] is no longer negotiating with that set of doctors. Blue Shield won’t cover their care anymore. So you’re in a policy and then end of the year, you’re out of the policy by no means of your own. I went through that. I was getting treatment at Stanford [University Hospital] and the next year, Stanford did not negotiate with this insurance and I had to find new doctors. And for continuity of care for a cancer patient that’s pretty major and stressful because now you are not seeing the people who took care of you because of a negotiation between that hospital and the insurance group.”
With regard to the public sector, Americans aged 65 years or older are entitled to coverage through a national social insurance program managed by the federal government called Medicare. Adhering to minimal federal mandates, individual states are meant to administer and provide medical coverage to Americans with disabilities or to those with no or limited income unable to afford private insurance. Known as Medicaid, this program serves 1 in 5 Americans. However, given that Medicaid is state-managed, access to and eligibility for the program remains aberrant. Across a plethora of states, many adults who meet the federal income eligibility requirements (with incomes falling below or near the Federal Poverty Line) but do not have dependent children (though in some states, some may), are precluded by individual states from receiving Medicaid, regardless of their lack of resources and inability to otherwise secure care. While the Affordable Care Act meant to rectify this egregious incongruousness by allowing any adult, who does or does not have dependent children, to be granted healthcare coverage via Medicaid so long as their income falls at or below 138% of the Federal Poverty line, a 2012 US Supreme Court decision rendered the adoption of this expansion of Medicaid optional for states. And accordingly, many states continue to reject it. The Indian Health Service provides care for eligible Native Americans living in some designated areas. The Defense Health Agency and Veteran Health Administration offer healthcare coverage to military personnel and their dependents, retirees, and veterans. Disenfranchised groups such as undocumented immigrants and homeless people rarely secure healthcare coverage. Undocumented people face the highest risk for financial toxicity due to healthcare costs as they are the least insured of all groups and deemed ineligible from public support programs like Medicare, Medicaid, and the Affordable Care Act exchanges. Significantly, the most recently collected government data indicates that at least 28 million people in the United States have no health coverage at all.
One study has demonstrated that patients with public health insurance are at a greater risk of financial toxicity, especially as these patients are unlikely to have savings and other assets. Public programs, moreover, offer disparate standards of care. Every single US-based patient advocate I have interviewed has insisted that there are differences in the care received by patients on public insurance compared to those with private insurance. Some patient advocates argued that they have seen medical providers treat patients on Medicaid with contempt and prejudice. Another advocate I spoke with who is also a registered nurse expressed her concern over what is covered by public insurance systems versus that which is covered by private insurance companies. Explaining this concern, she disclosed that she had seen patients with public coverage denied access to certain pharmaceutical drugs, genetic tests, and diagnostic tests and scans; their insurance simply refused cover the drug(s) or procedure(s). An advocate based in Northern California articulated the disparities in care patients face based on their insurance in these terms:
“ When a person has a private insurance… they can go to UCSF, they can go to Stanford. They can go to an oncologist who is outside of the system versus people who are receiving emergency medical care through a breast and cervical cancer treatment fund. Most of them will go to a public safety hospital…Will the doctor [treating them at a public safety hospital] know the latest information about clinical trials? Whereas with someone who is at UCSF or Stanford, there’s cutting-edge treatment going on. So there’s a difference in the treatment options and that difference impacts longevity, it impacts survival. It impacts recurrence.”
Other patients and patient advocates, such as one I will call Christine, noted another troubling discrepancy:
“The problem there is they can’t get in as fast for treatment as someone with private insurance. So they might get diagnosed and have to wait three months for surgery because of [scheduling] while someone with insurance can get diagnosed and they are in the next week for surgery. That’s not right. Those are the people without where-with-all to look at insurance or even know how to apply for it themselves. They are busy just trying to survive and not be living in the park on the bench. Some of them do live in the park on the bench. They can get care but not the appropriate care at the appropriate time.”
Efforts to replace the current for-profit healthcare system with versions of a robust universal, publicly-funded model in the United States stretch at least as far back as the Roosevelt and Truman administrations but have been unsuccessful in no small part due to the power of insurance and medical lobbying groups such as the American Medical Association. Although healthcare coverage in the US now extends to nearly 90% of Americans thanks to the enactment of the Affordable Care Act, every single other high income nation ensures coverage for at least 99% of its population.
Earlier this year I interviewed an American patient with an aggressive form of cancer who was being treated via the United Kingdom’s National Health Service. Having lived most of her life in the US, she came to the UK to complete her PhD. She fell ill in the midst of her doctoral studies. During the interview, she elaborated on how grateful she was to be receiving her cancer treatments from a top institution in the UK and spoke about how she would be subject to the grips of financial toxicity if she was instead undergoing treatment in the US. She explained:
“I believe in nationalized health-care. I know in the US I would be in so much debt or possibly dead. I’m really happy I’m getting my cancer treatment here [in the United Kingdom]. I didn’t have choice. The cancer was too aggressive. I couldn’t fly home even if I wanted. Because my family members are a little perplexed as to why I didn’t chose to get treated at Yale [University Hospital]. But I couldn’t. I didn’t have the opportunity. Plus, the care here is good. And I didn’t have health insurance in the US, so f — that!! Who’s gonna wanna insure…? And be on [Connecticut’s version of Medicaid]…? [sardonically] Plus I paid for my NHS surcharge so I’m definitely got all the money I could out of this visa experience!… I mean I didn’t come here to get cancer, I came here to study. It’s just what happened to me.”
The Affordable Care Act instituted critical regulations for the US’s healthcare coverage system and has allowed millions of Americans to access and receive care. Yet it remains in peril and has been besieged by Republican attempts at repeal since its passage in 2010. In 2017, such an effort by congressional Republicans narrowly failed. In May 2019, the Trump administration filed a formal request to strike down all of Obamacare and, currently, a legal effort to strike down the Affordable Care Act as unconstitutional initiated by a Texan judge is moving through the US Court of Appeals. If Obamacare is indeed deemed unconstitutional, research by the Urban Institute indicates that the number of those uninsured in the US would increase by 65% or, 20 million people. A repeal of the law would also remove protections for people with pre-existing conditions (allow insurers to charge them more or deny coverage to them entirely) and caps on out-of-pocket medical expenses. Insurance companies would no longer need to cover young adults up to age 26 through their parents’ plans. Insurers could also return to charging people more based on gender, profession, and age and reinstitute annual and lifetime limits on coverage. Given a reversal of the law, the Kaiser Family Foundation estimates that 27% of the population or 52 million adults would be rejected for individual market coverage.
Otherwise illustrating the importance of the Affordable Care Act, Jane described the difficulties she faced in securing treatment after her following her recovery. With lingering exasperation, Jane related this experience with a marked vehemence.
Jane: “I was a self-employed graphic designer. So my husband was working and I had my insurance through him which was fine — [I had a lot of issues with doubling billing with the insurance and denials of coverage for treatments] but I got through them after the surgery. But my husband is 9 years older than me. So he retired and aged into Medicare which put me into the insurance world on my own. At the time, the Affordable Care Act had passed but hadn’t taken effect. So as a cancer survivor, I couldn’t get insurance in the state of California. I was uninsurable. Perfectly healthy. Hopefully, done with the cancer. But I couldn’t even get insurance.”
Int: So how did you deal with this scenario? What were your options?
Jane: I called up the High Risk Pool in the state of California. Some insurance person had said, “Call them and get in their pool.” It was a seven year waiting list because there’s only a certain amount of money. Basically, I had to go find a job that had group health insurance. Because if you are on a group policy, the insurers cannot deny you for pre-existing conditions. But if you find an individual policy they can deny you and charge you whatever the hell they want — a catastrophic amount. So I ended up looking for a job. I had to go get a job until 2014 when the pre-existing conditions clause for the Affordable Care Act went into effect. Then I had the freedom to go back to my old life and buy my own insurance. Not that it was cheap!! It was still what — $20,000 a year! That was without going to the doctor — you are paying 20k a year. So it wasn’t cheap but I could get [individual] health insurance.”
Jane’s story not only offers a startling premonition of what patients may be forced to endure should the Affordable Care Act be repealed in part or in its entirety, but it also highlights how the law marked a dramatic intervention for cancer patients’ ability to access and afford care. Other US patients I have interviewed have expressed worry that crucial tenets of the law might still be struck down or repealed. Such a defanging, they conclude, may not just affect their pocketbooks but their chances at survival. As previously enumerated, a multitude of studies suggests the veritable foundations and prescience of their misgivings.