My cancer battle: An unsettling compromise
Written by:
Elizabeth Yantchevskii, BSc. candidate, Western University
I was born with a condition called microtia, a congenital malformation resulting from incomplete development of the external ear. Although there are various grades of this condition, I fall into both stages 1 and 3, where the appearance of my ear looks completely normal, but most of my inner ear structure is missing. This makes my disability practically invisible other than the fact that I struggle to hear some things on occasion.
My microtia never impacted my health or well-being. I finished high school as an honour roll student, and came to Western in September 2021, as a first-year medical science student, eager to take on the next chapter of my life. Then, in mid-October, I was given the news that no one wants to hear: “You have cancer”.
I spent the next six months receiving chemotherapy treatment. In May 2022 I was declared to be in remission, the thing I needed to hit the resume button in my life. This past September, I came back, ready to start over. Unfortunately, before I knew it (in October, again) I was given the news no one expected: my cancer had recurred.
This time, I was referred to a hospital farther from my home, where the team of doctors strongly recommended that I participate in a medical trial. Instead of going with the standard-of-care chemotherapy, the trial would randomize me either to the same chemotherapy, or a new immunotherapy drug that is proposed to have a better success rate. As I was sitting on the bed, being read the endless pages of the protocol, and the hundreds of side effects for both arms of the trial, I was suddenly alarmed when I heard the words ‘hearing loss’. The chemotherapy arm, the one that is also the standard of care, posed a significant risk of irreversible hearing loss as a result of what is medically known as chemotherapy-induced peripheral neuropathy (CIPN). This risk would be significant enough for me - with my pre-existing condition of microtia - to lose my hearing completely.
My parents and I explained my situation to the doctors, and the doctors acknowledged the detrimental impact the chemotherapy might have on my hearing, considering I already have nearly 50% hearing loss. Although this made me glad I might avoid this risk now that I was in the trial, this also meant that my only access to a safer treatment was through the trial. I instantly started looking into other possible treatments and found two options:
- A regimen consisting of 2 medications, one of which was not covered by OHIP. After some calculations, it would have cost us approximately 25,000 at baseline just for the first two doses and dispensation fee, and it would accumulate based on the number of treatments I needed.
- The same trial drug, but since it was still not approved in Canada, I would have to seek treatment in the United States. The costs of this option were astronomically high.
My parents were willing to do anything for me, but I also understood this would mean significant financial difficulties for my family. Once the trial randomization day finally came, the tension and worries in the hospital room were through the roof, from me to my parents and even for my doctor. We all knew receiving the experimental treatment was more appropriate for me given my microtia, but the odds were 50/50 that I would not get randomized into that arm of the study. It was all at the hands of an AI machine. After the longest ten minutes of my entire life, I found out I got the trial drug arm. This news was followed by a huge rush of relief and joy.
I am currently on my third round of treatment and am so glad everything turned out the way I hoped, but I constantly look back on this experience and wonder, What if I had not been selected to receive the experimental treatment? Where would I be right now? Would I be receiving treatment in the US? Would my sister be able to afford to go to university? Or, would I be praying that with every round of treatment, I would not lose my hearing, and worrying that any ringing in my ears could be the sound of nerve damage?
My experience has provided me with a unique up-close perspective on the barriers individuals with disability can face in healthcare, and the importance of thinking about equity, rather than just equality, when considering disability. Equity is about providing individuals with an equal outcome by equipping individuals with all necessary resources they may need, rather than simply distributing resources equally which will produce a wide range of outcomes, some much more unfavourable than others. I also have come to understand in a new way just how far inequities can be ingrained into our healthcare system. These go far past specific institutions, and are rather system-wide. Although my doctor did consider all aspects of my identity and medical history when coming up with a treatment plan, she was limited in her abilities to provide me with the care she felt presented lesser risks to me, given my pre-existing hearing impairment. Unfortunately, this is because when establishing standards of care, there is sometimes a lack of appreciation for the patient’s underlying conditions and unique differences. And, although they may be almost invisible, those differences can become amplified with treatment and have potentially far-reaching consequences.
As explained by the Fundamental Principles of Disability document and the social model of disability, ‘we are not disabled by our impairments but by the disabling barriers’ (Oliver, 2013, p 1024). In my case, my treatment being equal to that of any other individual in need of cancer treatment meant that my hearing disability was at risk of being amplified. This issue extends to all marginalized populations encompassing a range of social identities aside from disability, where less effective or inappropriate treatment is the only funded and widely available option, even for those for whom this option can result in physical harm or further disability.
Now, I understand firsthand how various social determinants of health intertwine and contribute to our overall experience with the healthcare system and consequently our health outcomes. Living in a middle-class household, I would most likely experience some financial instability as a result of seeking other care, whereas a wealthier person would experience fewer consequences of investing this amount of money. It also made me realize if I was even less fortunate and did not have possessions to sell or be granted a loan, my treatment options would be even more limited.
Although my doctor was not able to guarantee me the trial drug in accordance with trial protocols, I do think the healthcare system should be able to provide particular patients with other comparable treatments that are available, but at a greater cost, when the standard of care poses such risks of causing harm to those patients. And although I was at first upset with the doctors and the hospital, I had a moment of realization that showed despite how hard doctors may strive to treat their patients with equity, they too are disabled by the medical system that consists of structural inequities which fall under the umbrella terms of policy and attitudinal barriers.
We need to concentrate on providing a high standard of disability education not only to medical staff but to policymakers who need to understand our unique needs as well as work alongside both patients and medical providers when generating treatment guidelines and possible exceptions. We also need to provide physicians with all the resources they may need to provide patients with care, in my case, drug reimbursement.
I wanted to share my story with no intention to criticize my doctors or the hospital where I am getting treated, but rather to bring attention to the greater underlying problem that is within the fabrics of our healthcare system due to long-standing inequities. Specifically, I want to draw attention to the ways in which many standards of care may fail to take into account populations with unique health conditions and needs. I believe that the movement towards health equity starts here, by raising awareness, educating, and advocating for “equal healthcare for all” and by speaking up about our individual experiences. We need to continue holding these uncomfortable discussions to escalate them, with an aim for them to work their way up and reach the target audience at higher decision-making levels- those participating in policy implementation.
So, if I could ask you to take away one thing from my entry, it would be that society needs to take action and address these inequities. We need to advocate for our health to ensure our standard of health practices match the upward trajectory of our medical advances.
References
Oliver, M. (2013, July 22). The social model of disability: thirty years on. Western libraries off-campus access to electronic resources. Retrieved March 17, 2023, from https://www-tandfonline-com.proxy1.lib.uwo.ca/doi/full/10.1080/09687599.2013.818773
Rodriguez, S. (2022, October 10). Discrimination shapes care access for patients with disabilities. PatientEngagementHIT. Retrieved March 17, 2023, from https://patientengagementhit.com/news/amp/discrimination-shapes-care-access-for-patients-with-disabilities
Photo by Angiola Harry on Unsplash
