Broken Promises

by Jonah CzerwinskyjSurvivor, Stage IV Colon CancerOctober 5, 2020View more posts from Jonah Czerwinskyj

Based on all the commercials one sees for cancer centers and charities, one might conclude cancer patients have infinite support and resources available to them and their families. These commercials tell the viewer we climb mountains, run marathons and are beneficiaries of all the world’s pity and admiration. We are courageous warriors nobly fighting against the most dreaded of diseases. To those who have been lucky enough to have so far avoided the supernova of a cancer diagnosis (or that of a loved one) — which creates the nigh inescapable void from which no light or sound can escape — cancer must look like something that we as a society really cares about. I can’t blame anyone for buying into any of this.

Commercials like these are well produced and allow the healthy to dissuade themselves of their fears of illness and death. They also contain a modicum of truth.

Yes, some of us do climb mountains, some of us win marathons, and we are all courageous even in the strength it takes to face another day. Yet the complete reality is far from the simple narrative that plays out on television. I have felt utterly abandoned by the society we all live in.

Every time an insurance claim was denied, every time a medication was withheld, every time my health coverage was in danger, a little more of my trust would erode. Add this to the grand betrayal of my own body attempting to slowly, tortuously murder me, and you have a massive fetid garbage heap of grief and mistrust Often during my first 2-3 years post diagnosis I was thrown into an inconsolable rage over medical bills, side effects, appointments, and the joy of infinite phone calls with insurance reps who were intentionally undertrained to slow my access to the benefits I had already paid for.

It wasn’t supposed to be like this! Insurance companies are supposed to pay for your healthcare! I am one of the special cancer warriors! I am now deeply saddened at my naiveté.

How am I supposed to feel cared for by a society that constantly demands I prove my worth? Prove that I am sick enough, poor enough, or close enough to death. Hospitals demand to see bank statements, drivers’ licenses, social security cards, pay stubs, and tax forms to provide you financial assistance; financial assistance they are REQUIRED to provide to maintain the massive tax subsidies afforded by their “non-profit” status.

Insurance companies and governmental bodies require preapprovals, medical records, doctor’s testimonies and infinite desperate pleas to cover even the most basic healthcare. It’s endlessly tiring! Why must I prove over and over that I am worthy of not dying?! I was repeatedly told during the first 12 years of my public education that one of the self-evident truths of being a citizen of the US was that I was to be given certain unalienable rights, chief among these being life. Yet when faced with a life-threatening illness, this same country does everything it can to obstruct my access to care. It builds nearly insurmountable roadblocks in the name of profit and incompetence.

This is at the core of my discontent, the feeling that a vital promise has been broken.

The most striking example was when I suffered a recurrence due to a communication error. My one-time insurance company (a company that would later be closed down by the State’s Attorney General for unpaid bills) expected me to pay $1,200 a month for my chemotherapy medication AFTER I had fully paid my out of pocket costs for the year. The insurance company even confirmed that my out of pocket was paid and the I SHOULD NOT have to pay anything for my medication!

The prolonged fight with my insurance caused a months long delay in getting my medication leading to a return of the metastasized lesion on my liver. This was an ACA plan. Where was the government when I needed them to properly regulate the insurance company? This feels almost purposeful — murder through neglect. As if it would be favorable if I were to simply roll-over and die and stop being a burden.

More broken promises.

Society created the markets that set the prices for healthcare. Society has decided that cancer treatment should be exorbitantly expensive. This same society has made me feel ashamed that I would need to ask for assistance to help offset these exorbitant expenses. Ashamed because it has labeled basic necessities “entitlements”, because it demands that time after time that I prove I am worthy of this care, and because it makes me feel like a burden for requiring the care that it has made exorbitantly expensive. I get the sensation that I’m trapped in an unwinnable game in which the stakes are my life!

To be clear, I am deeply grateful for the care I received when I could access it.

I have nothing but effusive praise for the social workers, doctors, nurses, phlebotomists, custodians, transport workers, and all the other healthcare staff that worked tirelessly to ensured I received extremely high-quality care. I am lucky that I live within an hour of some of the country’s best cancer hospitals. I am grateful to still be alive! However, I am not grateful for the days, weeks, months, and years of my drastically shortened life that have been spent attempting to prove that I am worthy of this care.

As a straight, cis, white male, I have been afforded all the societal privileges that come with each of those identities, separately and in conjunction. My complaints about feeling neglected by the healthcare system are couched in the full knowledge that I have been given much greater access to care than the vast majority of those diagnosed with cancer, and that even the likelihood of my survival has been greatly increased by these privileges.

It just sickens me that those most in need of care and their families are subjected to such indignities. The TV commercials and common narratives don’t account for this. They don’t let anyone know the price that has to be paid to survive. I will take the medicine, the surgeries, and the radiation. I will suffer the side effects: the bowel obstructions, nausea, fatigue, radiation burns, weeks-long hospital stays circling the same halls for days on end, but I won’t take the bureaucracy.

I won’t accept that I must demean myself to be worthy of care.

We all deserve better.


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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4 Comments

  • Nyasha says:

    Mind blowing to hear this happens in a first world country. Being in a third world country, I can totally relate a thousandfold.

  • Rachael says:

    Thank you, Jonah. This is so incredibly powerful and SO important. As cancer patients we get up close and personal with the brokenness of the American healthcare system. Able-bodied, generally healthy people don’t realize how privileged they are to not have to experience it to the degree that we do.

    When I was going through treatment and fighting insurance (my favorite was getting a letter signed by a doctor employed by the insurance company claiming that the mammogram that confirmed the lump in my breast was suspicious was “not medically necessary”) I realized that I was overwhelmed, and I was a highly educated, reasonably intelligent person with the resources to try to comprehend it all – so how much worse must it be for the average person? They deliberately have structured it to be impenetrable. That’s what happens when we have a for-profit healthcare system – they abuse people in pursuit of the almighty dollar.

    It’s hard to find the energy when you’re dealing with so much of your own stuff – believe me, I know – but VOTE. Vote for people who are going to try to make a change. Reach out to organizations working on healthcare reform, like Medicare for All. We have the power to change this.

  • Thank you. Beautifully written and clearly offers important facts.

  • terri nelles says:

    Thanks Jonah for writing this, this crtitical information and why as a country we need to do better. It’s baffling to me why we aren’t. You are becoming a true advocate and that is pretty cool.

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