23 Jan How Mary Taught Me The True Cost of Living With HIV
I walked into the ICU room to find Mary* lying in the bed curled up, a small spot in a pool of white sheets haphazardly covering her. A ward of the state at an HIV/AIDS hospice in Harlem, she was suffering from end-stage AIDS and I was one of few visitors she had. The endotracheal tube down her throat prevented Mary from speaking, but she recognized me through the blue scrubs and mask I wore in the isolation room. I developed a relationship with Mary working as a clinical advocate. Mary had grown up around an Indian population and–before her intubation–we had shared stories of common cultural practices through bits of Hindi. It now seemed unfair that a woman with so many stories could no longer speak, that her narrative of immigration, foster care, drug use, mental illness, and the stray dog she kept, would die with her in an ICU bed.
That was my last meeting with Mary, but I couldn’t help but repeatedly reflect on how her narrative encompassed so many dimensions of the mind, body and spirit that make up a patient’s “social determinants.” I was reminded how medicine is at its core a profession of narratives –of science and of the human condition. But by seeing how Mary’s health was reflected in how she lived and, ultimately, how she died, I began to understand how much medicine was also about cost.
Reflecting on Mary’s story, I wondered about my own story. It began similarly to Mary’s with an immigrant background and culture. But our stories diverged with the social ingredients of our upbringings. The inequalities and barriers to care in the U.S. health system, particularly for the uninsured and poor, are prohibitive and complex. And one of those barriers is the cost of care for chronic illnesses like HIV/AIDS.
For low-income women like Mary to remain eligible for assistance through the AIDS Drug Assistant Program, it may mean refusing full-time employment or salary promotions since the income cut-off limit is as low as $22,000 annually. It means making the decision to pay for medications while forgoing rent or groceries, or vice versa. The high cost of treatment forced Mary into high stakes juggling, where one wrong move led to a chain of dire health consequences. And as people live longer, the CDC estimates that the lifetime cost of treatment can be as high as $400,000.
Mary knew the number above very well. She told me once that she would die before ever “getting that kind of money.” For her the perceived cost was as much a barrier as the actual cost of her treatment. That number demoralized her and I noticed she clung to it when other aspects of her life were in trouble.
Prior to meeting Mary, I had immersed myself into medicine through a socio-cultural lens. I prided myself on being able to think through the social determinants involved with patients. But I was not intimately aware of the how high medical costs and health policies that dictated Mary’s health-seeking strategies impacted her narrative.
My clinical work with patients such as Mary showed me how important it is for health care workers to understand the financial aspects of the care they provide. As I think about Mary and my entrance into medicine, I wonder how I can merge that responsibility with the realities of cost in our current system? How can I make the right medical decisions for my future patients, while protecting them from financial burden? Is it even possible? Is that even my job? The short answer is yes, but the reality is much more complex.
I now know that Mary’s story was not just about the psychosocial “costs” of care for someone living with HIV/AIDS, but of the financial barriers she faced in attaining that care while living as a single, poor, woman of color. Mary was one woman, but her narrative is not unique. And that realization, while intimidating, is a strong impetus for me to pursue a medical education that delves into the costs of our medical system.
*Name has been changed to protect privacy.
Vaidehi Mujumdar was a contestant in the 2015 Costs of Care Essay Contest.