Financial Toxicity: The Devastating Economic Burden of Cancer Care

While coping with cancer is physically challenging and psychologically devastating, it is also economically devastating for patients and their families. The biggest dilemma a cancer patient and the family face is whether to focus on curing the disease or on the cost of treatment! As a complex disease, cancer treatment includes long-term follow-ups, side effect management, nutrition and supplements, psychological support, rehabilitation back into society, and numerous other costs that are generally not factored into the upfront cost of treatment. This financial toll is known as financial toxicity in cancer care.

Financial toxicity in cancer care has emerged as one of the most daunting challenges worldwide, as it has a significant bearing on disease outcomes. The cost of cancer treatment has been skyrocketing due to multiple factors, including advancements in treatment regimens, medical technology, medication innovations, and the inherent complexities of the disease itself. In the Indian context, the implications of the cost of cancer treatment on patients are particularly gut-wrenching.

Healthcare expenses in India push approximately 3% of the population back into abject poverty, as 65% of healthcare expenses are borne out-of-pocket. Medical insurance penetration stands at only about 15% in India, and it often comes with limitations on coverage for certain types of cancer and lock-in periods. Underinsurance and inadequate insurance coverage are additional challenges, with most policies carrying coverage values of only Rs. 5 lakhs.

Furthermore, around 75% of healthcare services, especially cancer care, are provided privately. The government has never made adequate investments in healthcare infrastructure, let alone equitable and uniform distribution. For instance, India has only around 100 hospitals where comprehensive cancer care is provided and only 547 radiation machines, 100 of which are outdated including cobalt machines rarely used elsewhere around the globe. The distribution of cancer healthcare facilities is highly skewed, available primarily in urban areas, while rural India continues to suffer neglect.

Cancer is a complex disease that requires continuous engagement with multiple treatment modalities involving various medical specialists over a long period. Regular follow-ups are necessary for survivorship, survival, and handling the traumatic challenge of the disease and its recurrences.

Causes of Financial Toxicity

The causes of financial toxicity in cancer care are multifaceted. The cost of treatment oscillates significantly, hinging on factors such as cancer type, stage, grade, patient age, palliative care, supportive care, side effect management, and follow-up requirements. Additionally, the constantly evolving nature of new treatments adds more weight to the financial burden. Innovative therapies, including proton therapy, MR linac, robotic surgeries, Zap-X therapy, precision chemotherapy, immunotherapies, CAR-T cell therapies, molecular biology, and genetic testing for personalized and precision treatments, come at an exorbitant cost. For example, immunotherapy alone can cost around Rs. 4 lakhs to Rs. 50 lakhs.

Younger cancer patients often face employment loss and physical challenges due to the crippling effects of the disease. The financial burden of treatment squarely falls on the parents or the patients themselves, with very dim prospects of re-entering the workforce post-treatment. Rehabilitating a cancer survivor back into society remains a challenge of Himalayan proportions. The entire family and the patient suffer emotionally, but financially as well, as they must commit a substantial productive time in providing necessary care, despite the well-known saying, "Time is money." However culturally, we are not trained to account for that time in money.

Another cause is the stage of the disease, which exacerbates financial toxicity. Early diagnosis can substantially reduce expenses by eliminating the need for certain treatment modalities and leads to better survival outcomes. However, in India and many other parts of the world, except for developed nations, early detection is still a mirage due to the non-availability of cancer screening infrastructure, policy focus, and societal attitudes towards the disease.

Late detection proves to be very costly, as it involves multiple treatment modalities such as surgery, chemotherapy, immunotherapy, radiation, supportive care, supplements, and frequent hospitalization with emergency visits. Alarmingly, in India, approximately 80% of cancer cases are detected at an advanced stage (stages 4 and 3), where the financial burden of treatment goes up and can devastate families with limited chances of survival and poor survivorship. Palliative care is a nightmarish experience, both financially and administratively, and is hardly available with dignity in the true sense in our country, with Kerala being an exception.

Compliance with treatment is another tiresome challenge that causes financial toxicity. Most cancer drugs are expensive and beyond the reach of the common populace, and are not readily available near the patient's neighbourhood. most of the drugs are monopolized by a few organizations. Additionally, OPD follow-ups often require diagnostic imaging, blood investigations, and doctor consultations, none of which are covered under any medical insurance policy, adding to the out-of-pocket expenses. Even a simple follow-up visit can cost up to Rs. 50,000. The financial burden of managing side effects can also disrupt the continuity of treatment, particularly when patients have co-morbidities like diabetes, cardiac ailments, and other age-related conditions. Families often experience a downstream effect on their quality of life as they cautiously manage their expenses with the possibility of cancer recurrence and other unexpected costs.

Accessibility to treatment also contributes to financial toxicity. Most patients are forced to travel to urban India, where comprehensive cancer hospitals are located. This problem compels affected families to incur additional expenses for accommodation, travel, food, and daily needs on top of the direct treatment cost. The duration of cancer treatment is longer and further exacerbates the financial strain on patients and their families.

Let me summarise, the financial toxicity encompasses not only the treatment costs, disease complexity, skewed healthcare distribution, and shortage of healthcare professionals but also the hidden indirect costs borne by patients and their families. Lack of government policy intervention, insufficient community support, social attitudes towards the disease, and the role of healthcare actors are essential factors in dealing with the increasing financial toxicity in the cancer care space. Healthcare actors must encourage open discussions about the cost of treatment and define the value of the treatment versus the benefits, especially in cancer care. Doctors are never trained as to how to discuss the cost of treatment with patients, leading to conversations about the value versus outcome benefits. Organizations like ASCO and ESMO have taken up the cause of financial toxicity, and have come out with some possible solutions, including financial navigation. These are all crucial aspects that need immediate attention from every stakeholder involved in the cancer care business instead of merely speaking in platitudes of idealism when discussing the real challenges across platforms regarding cancer care in India.