Oxford Languages defines care as “the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something,” though in the American healthcare system, the word—in its true intent—has been abundantly misused and heavily distorted.

Healthcare, a hotly debated topic in American politics, has garnered plenty of opinions, whether voiced by politicians, activists, or those who have directly felt the sting of these policies. Frequently, I come across people’s healthcare stories while browsing social media. These posts are often accompanied by GoFundMe campaigns to help pay for hospital bills or medications. While I have seen glimpses of this issue, I’d never comprehended its scope until it became intimately enmeshed in my own life.

In September of 2021, the start of my sophomore year, my stepdad was diagnosed with Stage IV colon cancer. Like most people, I had never expected that something of this magnitude could ever happen to my family, and though it is increasingly common, it was implausible in my mind.

He had top-of-the-line insurance, so his treatment was covered. Although his prognosis was bleak, we didn’t have to worry about the financial aspect of his illness, which was a luxury considering the exorbitant prices of treatments. 

Throughout the progression of his illness, medical terminology became ingrained in my vocabulary. The stages of treatment begin with first-line therapy, which is often the most aggressive, to second and possibly third or fourth lines of treatment. For a person with advanced cancer, there is a high likelihood that they will go through various levels. A patient progresses through these levels of treatments because their cancer has spread under the current line of treatment, and a new option must be pursued in order to mitigate it.

The first-line treatment options consist of radiation, chemotherapy, or surgeries. In the specific case of my stepdad, surgery was quickly pulled out of the running due to its associated risks, so he began chemotherapy.

When my stepdad began his first line of chemotherapy, he experienced adverse side effects from the treatments.  He developed neuropathy, which is damage to the nerves that can cause pain and numbness, in his hands and feet. This limited his ability to perform movements that require fine motor skills, such as buttoning his shirts or even tying his boots. His level of activity drastically changed, and he spent more time resting than I’d ever seen before. He took medications to counter a laundry list of negative symptoms and potential risks that the treatments had imposed. 

By the time a year had passed since his diagnosis, the illness had progressed dramatically, and he had exhausted both first and second-line treatment options. With those medical routes blocked off, he continued with the third-line beginning in July. Although third-line treatment can be viewed as the last resort, it offered a short reprieve from his journey with cancer. He began to regain some of the pounds he had lost and, for the month of August, life returned to a strained normal. 

However, like the other treatments, it was only effective for a short period of time before his health took a downward spiral again in September. His oncologist recommended the drug Mektovi based on the results of his biological testing, which had revealed a mutation in the MEK pathway.  Mektovi is FDA-approved for melanoma but not colon cancer. This drug was specific to his mutation, but because it did not technically fall under the umbrella of colon cancer pharmaceuticals, his insurance denied it. His oncologist appealed this decision, citing research showing the drug’s efficacy with MEK pathway mutations. The insurance company denied the appeal.  

My stepdad’s condition worsened as we waited weeks to receive any response regarding the status of these decisions. The estimated out-of-pocket cost for the needed medication was $10,000 for a month’s supply. 

My stepdad submitted an application to the drug manufacturer Pfizer for assistance. We were notified on November 2nd that Pfizer approved the drug, and it was expedited to him overnight, arriving on November 3rd.  He passed in the early hours of November 4th, 2022 with an unopened bottle of medication sitting on our kitchen counter. 

From the outset, it was likely that my stepdad would succumb to this disease. He began this journey already at its terminal stage, and there were no assumptions that this drug would miraculously cure his cancer or save his life. However, it did have the power to prolong it and give us precious time together.

Today in America, an insurance agent has the power to override the decision of an oncologist—regardless of medical credentials or years of experience.

The emotional disconnect in an industry said to be rooted in “care” is starkly visible. Evidently, it is an industry governed by profit. My stepdad’s treatment costs for 14 months likely exceeded one million dollars, and many families face financial ruin at a time when their lives are in upheaval.  

The system is flawed.  According to the Journal of Economic Perspective, “Both the very high level and rate of growth of U.S. health spending suggests that [the American healthcare system] experiences a unique degree of allocative inefficiency, even when compared to other high-income countries.” 

Universal healthcare is viable option, one that has been demonstrated by a host of other countries to be more cost-effective and more humane. The necessity for change is growing, and for patients like my stepdad, I hope the call for change is not just heard but acted on.