When we’re asked to think of symptoms associated with cancer, typical answers might include chronic pain, fatigue, weight loss, nausea and a list of other, often debilitating, disorders. There is a symptom, however, that is intrinsic to cancer and has the potential to be as impactful as any symptom or side effect. Yet, it is not one that we meaningfully attempt to treat, much less recognize.
Poverty, loss of productivity, low income – whatever it is called – is intractably linked with cancer patients’ stories. From screening to survival, an individual’s income is a key determinant of how the diagnosis will play out.
There is something uniquely unjust about receiving a life-changing diagnosis, often a completely unpredictable situation, and being pushed into poverty because of it. Yet, this is something we routinely allow to happen.
Financial ramifications of living with cancer
The current state of public financial assistance is a patchwork of general disability and niche programs that cumulatively do not provide easy-to-access or satisfactory supports for cancer patients. Despite their significant numbers and exceptional circumstances, non-palliative cancer patients do not receive targeted governmental financial supports; they receive funds from the same provincial initiatives as other individuals with disability. For instance, under B.C.’s Persons with Disabilities Program, a single adult is eligible for a maximum benefit of $1483.50 per month. This amount can be topped up by federal Pension Plan Disability benefits and contributions from individual agencies, but it still comes nowhere close to the average cost of shelter in Metro Vancouver or Victoria.
Now add in the out-of-pocket costs that cancer patients incur. Between paying for out-of-pocket medications, travel, treatment-related accommodations, rehabilitation and other essential health-care expenditures, cancer patients are left on the hook for, on average, $500 a month in non-reimbursable expenses. This is at a time when a quarter of Canadians report being unable to cover a one-time unexpected expense of $500. Almost half of cancer patients in Canada reported financial problems, such as being unable to pay health-care related expenses. In another survey, a third of cancer patients reported a high level of financial burden associated with their diagnosis, with those reporting the most acute levels of financial burden spending half of their monthly income on out-of-pocket health-related costs. These are lamentable statistics for a country and a health-care system that prides itself on equity.
Clearly, relying solely on public financial assistance following a cancer diagnosis is, in almost all cases, untenable. And while a sizable majority of cancer patients can and do continue working in some shape or form, that doesn’t mean that they are immune from financial strain. In one study, Canadian working women with breast cancer lost, on average, about a quarter of their projected annual wages, even after all health- and disability-related compensation had been considered. For those that lost more than a third of their annual income (about a fourth of all working women), roughly 25 per cent reported lessened ability to pay their bills and meet daily needs for essentials, like food and shelter.
For those that recover from cancer, there’s a significant chance that their finances will never fully recover.
For those that recover from cancer, there’s a significant chance that their finances will never fully recover. Chronic pain and other longitudinal symptoms are present in 35 per cent of recovered cancer patients, affecting their ability to earn an income in the same manner as they did prior to their diagnosis. Furthermore, long-term separation from the workplace stalls career advancement and may require retraining, factors that also impact earned income. A Statistics Canada analysis of personal tax records of cancer patients found that the probability of cancer survivors working three years out from their diagnosis is 5 per cent less than an age-controlled population without cancer. For those that can return to work, their earnings are, on average, 10 per cent lower than before their diagnosis.
The neglected toxicity
In the world of oncology, a toxicity refers to side-effects that are a result of healthy cells taking on collateral damage from treatments that target cancer cells. Traditionally, this term has been reserved for physical side-effects. Financial toxicity, on the other hand, describes the harmful effect that the cost of disease and medical treatments have on one’s quality of life. It is, unfortunately, an under-discussed and very real toxicity associated with cancer.
The gap between treatment toxicities and financial toxicities shows itself almost immediately in the cancer-care journey. Once an oncologist has developed a treatment plan, the patient will be informed of any potential toxicities associated with the recommended treatment. After all, it’s a patient’s right to be fully informed regarding the treatment, a core tenet of ethical medical practice. The equivalent does not exist for financial toxicity. Often, cancer patients, especially in public health systems, are left surprised by the economic consequences of their diagnosis.
As patients’ treatments progress, they have follow-up appointments with their oncologist to assess their progress, often every few weeks. Treatment-related toxicities are screened for in practically every one of these follow-up appointments. If a treatment-related toxicity is reported by the patient or discovered by the medical team, the treatment plan is often changed to minimize the toxicity.
Unsurprisingly, there is no equivalent for financial toxicity. Cancer-centre social workers do play an essential role in screening for patient’s psychosocial concerns, including financial concerns. However, despite their advocacy and guiding efforts, their impact is limited by the hodgepodge of financial resources available.
Dollars and common sense
Whether it is acknowledged or not, addressing financial toxicity is a part of medical care. Addressing it will involve treating it as such, giving it the same consideration as biological issues when screening patients. The onus largely falls on the guidelines and protocols set for the health-care professionals – physicians, occupation therapists, nurses, social workers, counsellors and associated allied health staff.
There are positive examples of initiatives led by health-care workers to reduce the impact of financial toxicity. For instance, the efforts of vocational rehabilitation counsellors at BC Cancer and McGill University to develop cancerandwork.ca and associated professional training modules has helped B.C.-based physicians and nurses identify factors that impair patients’ return-to-work and how to best support the process. Health-care worker leadership and buy-in will play an integral role in minimizing the impact and prevalence of financial toxicity.
In an exploratory study of Canadian cancer patients with an income under $25,000, the most recommended suggestion for improving their experience was providing greater targeted financial support, with one patient commenting “there should be a separate financial assistance program dealing solely with cancer patients.”
Although the bureaucratic bloat associated with creating new programs may seem daunting, the sheer number of Canadians affected by cancer and the inadequacy of current financial supports makes it a priority. And the idea of a guaranteed income for cancer patients to address financial toxicity is not entirely foreign – in fact, it is currently undergoing a trial by the Social Security Administration and the University of Pennsylvania.
Our lack of investment in cancer patients isn’t just morally wrong, it also doesn’t make long-term economic sense. This is especially true with medical advances progressively decreasing the mortality associated with most cancers. More cancer patients will have the chance to reintegrate themselves into economically productive facets of their lives than ever before. Leaving cancer patients in a poor financial position will act as an economic drain long after their treatment has been completed.
“Just” beating cancer doesn’t necessarily mean cancer patients and survivors are in the best position to live healthy and fulfilling lives. They will also face the challenge of staying out of the poverty cycle and debt traps throughout the course of their treatment. They will face challenges in returning to the workforce and earning an income. And if we continue with the status quo, more and more Canadians will have to go through these challenges without proper supports.
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