2 Years of Cancernomics + 27 Days of Canculture

27 days. I had 27 days from the time I found out my dad was going to die until the moment he took his last breath. 2 years earlier, my dad was diagnosed with fourth stage colorectal cancer in May of 2011. There are two costs that come with a cancer diagnosis – the financial cost and the emotional cost. There’s the price of the overly expensive chemotherapy drugs, surgeries and weekly doctor appointments. And then there is the price of pain and grief. Apart from these costs, there is another underlying factor that is often overlooked: culture. Cultural differences are conveyed uniquely within cancer-affected families and furthermore, America’s money-driven culture is clearly exemplified through healthcare costs and policies.

 

The United States spends up to $2 trillion annually on healthcare, about 18% of the nation’s gross domestic product and more than any other developed country. The costs are highest at the time of the diagnosis and towards the end of the patient’s life when the cancer is declared as terminal. According to the American Cancer Society, the U.S. spent $88.7 billion on cancer medical costs in 2011, 50% of which was spent on hospital and doctor visits, 35% on hospital stays and 11% on prescription drugs.

The economics of palliative care is much different than that of the cancer diagnosis. Palliative care costs consider other factors because this is a time where the doctors, the patient and the patient’s family have decided to stop treatment and rather focus on pain relief, in hopes of creating a sense of comfort during the last stages of life. 10% to 12% of health care spending is allocated to hospice care.

Many disease-fighting drugs have patents, mechanically creating a monopoly for a medication that should not be exploited if the creators have a heart whatsoever. Last September, Daraprim, a drug that fights cancer and AIDS, increased in price by 5,000% from $13.50 to $750 per pill, according to NBC News. Impax Laboratories (IPXL) acquired CorePharma, who originally created and owned the drug. After the $700 million acquisition, Impax Laboratories decided to surge the price of Daraprim. IPXL is a profit-seeking company that trades on the New York Stock Exchange (NYSE) for about $34 per share. IPXL also acquired Tower Holdings, Inc. and Lineage Therapeutics Inc. After studying the U.S. Securities and Exchange Commission (SEC) that was filed for 2014’s fiscal year, it is evident that the CEO, G. Frederick Wilkinson, walked away with a salary of $862,793, 50% more than the rest of the executives, not including bonuses. However, with the 17% ownership of stocks that Wilkinson has, he truly walked away with $12,978,870 last year. In 2014, the company reported revenues of $596 million; with the latest price increases, IPXL’s 2015 revenue will increase by at least 35% purely from the increased prices of necessary drugs for cancer-stricken patients.

 

In my personal experiences, my family and I were willing to do anything, in hopes of giving my dad another day of life. My dad’s top-notch oncologist, Dr. Cabebe was experimenting different chemotherapies on his body causing severe side effects, side effects that created mouth sores, side effects that caused his skin to peel off of his hands and feet, side effects that made him throw up consecutively for three days after chemotherapy sessions, side effects that weakened his body. The excruciating mouth sores prevented him from eating any sort of food. Dr. Cabebe recommended a liquid medication to diminish this side effect. Unfortunately, our insurance didn’t cover the bottle of medicine. My family and I were at a point where we felt it was necessary to do everything in our power to give my dad the most comfortable life possible, despite the price; we paid for the medicine.

Cancer took my dad away from me, but it also created a lifestyle change, a lifestyle change that has reshaped my values and opinions on life and moreover, taught me the complex economics behind cancer.

 

As mentioned, the first cost of cancer that everyone considers is the chemotherapy medicines, hospital bills and doctor visits. But the cost of the pain and grief is something most families don’t take into account. There are so many sacrifices to be made when a cancer diagnosis comes into play. After facing this hardship, it is clear that the pain never goes away, but families become stronger. The pain of my dad’s death will never leave my soul, but I have gained strength. I have learned how to deal with my feelings in a healthy way. I have learned who cares about my pain and grief. I have learned who genuinely wants to help me get through the toughest of times. Grief cannot be explained in words or showed in monetary terms. It’s a heart-wrenching feeling that portrays the price of love. There is no humanly possible way to ‘get over’ the death of a loved one, especially after seeing him/her sick and suffer for a long period of time. Terminal cancer patients’ loved ones usually start their grief during the hospice days because during this time, the patient is slowly dying every single day; their bodies deteriorate; they sleep as much, if not more than infants; their organs start to fail and eventually their heart cannot beat anymore.

Everyday I witnessed my dad’s body weaken and smelled his rotting body. I remember him asking me to massage his legs and the second that I applied pressure with just one finger I could feel the fluids running through his body; it was like squishing gelatin. That is when my grief started.

 

Not only do the two costs play a factor into one’s cancer story, but culture also shapes cancer stories. The cultural aspect is something I never expected to conflict with, until my dad passed away. Most Hindu families transport the deceased body to India to perform the cremation ceremony and immediately disperse the ashes in the holy Ganges River. Instead, all of my uncles flew from India the second my dad’s heart stopped beating. Two days later, we cremated my dad’s body near our home. My dad’s brother, my mom, my sister and I pushed the button that took his body into the cremation machine. My uncles flew back to India and pocketed his ashes to scatter into the holy Ganges River as soon as possible to follow Hindu traditions.

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Pictured is my mom, myself, my sister and my uncle in our backyard during my dad’s funeral. 

The cost of the pain and grief cancer carries is indescribable and cannot be quantified. The more apparent expenses of cancer, including the hospitals, doctors and more, cost the U.S. over $88 billion annually. Although the financial burden, emotional pain and cultural differences bring so much more pain to a cancer diagnosis than anticipated, it also unlocks different perspectives. It matures patients and care takers. Through my adversity, I have discovered more about the meaning of life and what I value in my life and culture. Despite any sorrow I have faced, I will always be thankful for my experiences because each one has taught me something different about my life, my culture and myself. Cancer unveils cultural collisions that are buried beneath family dynamics, especially immigration. I would have never guessed how the financial burden of cancer, the emotional pain and cultural differences play a role in disease and death.

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