Access to healthcare is never something I have had the privilege of taking for granted. Throughout my childhood, my mother, sister and I spiraled between lack of access to care, charity care programs and intermittent health insurance coverage. When I was 14 years old, my mother was seriously injured in an accident that exacerbated her underlying medical conditions, including diabetes and obesity, and compounded our financial disadvantage. Following her accident, we tried to enroll in private coverage only to learn that the cost would have exceeded my mother’s entire workman’s compensation check. Even when we did have coverage, the copays and coinsurance were barriers. Then, at age 49, my mother was diagnosed with metastatic pancreatic cancer.
Between her accident and cancer diagnosis, my mother was able to enroll our family in a charity care program to be able to access healthcare after our insurance once again lapsed. While I now had access to affordable care, it was not accessible; I could only seek care two states away from where I was attending college. As an aspiring physician, I was personally discouraged and deeply invested in understanding the opportunities to change the system.
Limited access reverberates through families and compounds as issues worsen. While much of my recollection of my childhood revolves around my mother and her illness, she was not the only one alienated from care. My sister and I often had health issues that would have been easily remedied if interventions occurred earlier. My sister and I were incredibly fortunate to receive care from a pediatrician who often did not bill us for the visits. Yet, the cost of the visit itself was not the only issue, it was the time away from work and the gas to get there. Until matriculating into medical school, I had not been to the dentist since the seventh grade. My sister’s lack of dental care led to unaffordable treatment options and repeated missed work for her emergency care. While examining my own vaccination records before matriculating into medical school, I discovered that I never finished the varicella series.
The lack of access my sister and I had as children while my mother was uninsured is consistent with national trends. Children whose parents receive care via Medicaid expansion are more likely to attend well child visits themselves. While programs aimed directly at children are essential, addressing the insurance status of the parent to support family coverage improves children’s rates of coverage. Systems that rely on children receiving care from employee-sponsored programs leave children at risk when their parents, like my mother, lose their employer-sponsored plan. Most recently, the issue of tying child health coverage to employment was exacerbated during the COVID-19 pandemic.
Access to care is a human issue that extends far beyond disabilities and socioeconomic status. Experiences with homelessness, immigration status, race, ethnicity, identification with the LGBTQ+ community and the extremes of age all impact access to high-quality and comprehensive care. Policy decisions, such as South Carolina’s decision not to expand Medicaid along with the recent withdrawal of waivers that had increased access, disproportionately impact many of the aforementioned communities that have historically experienced oppression.
The impact of parental disability and lack of insurance on children extends beyond healthcare. My older sister never attended college due to pressures to stay home and help our mother while affording me the opportunity to attend college and eventually my dream of medical school. I missed more than thirty days of school each year while serving my dual role as a child and a caregiver. While I was away at college, I would find myself suddenly anxious over my mother’s health. In medical school, I am repeatedly confronted with the inadequacy of our health system to provide equitable care, a lesson I first learned as a child. Research is limited on the impact of parental health coverage and disability on educational outcomes for children and youth and has largely been from abroad. Yet, my personal experience as a first-generation college student and the first in my family to graduate from college and to attend medical school have revealed patterns that may merit investigation.
Despite the adversity I experienced, I remain grateful for the privilege I have been afforded through the unwavering, loving support of my family. My mother and sister may have not been able to offer formal guidance on my educational journey, but their support has been protective, and our lived experiences have ignited my desire to improve the system. I will always wonder what could have been different if we had consistent access to comprehensive healthcare; perhaps many of the medical issues our family experienced could have been prevented, including my mother’s cancer. What I know is that my deep commitment to advancing health equity is rooted in my family’s journey, fueled by the data behind our story and sustained by the value that all families deserve access to high quality, affordable health care.
Acknowledgements: Firstly, I would like to acknowledge my mother and sister for their unwavering support of my growth and the sharing of our story. Many thanks to Dr. Julie Linton whose guidance was invaluable in bringing this piece to life.
Image credit: Traffic: A Lot of Cars Driving Across The Golden Gate Bridge by Victor Hanacek is licensed under CC BY-NC 2.0.