Unfortunately some of those experiences are tales of inequity. I felt these inequities firsthand, after the health-care system failed my mother in her battle against cancer. My mother, ironically, had worked for decades in health insurance as a manager of provider relations. Yet when she was diagnosed with advanced leukemia not long after starting at a new company, an untimely insurance law classified it as a “pre-existing condition”. Because of this, she was unable to receive specialized care during those final 8 months, leaving her to fight this disease without access to doctors that focused on leukemia. It was a fight she ultimately wouldn’t win, and my mother passed in February 2008.
Years later, I gathered my community together around my kitchen table, where I witnessed too many similar stories. Black, Brown, and Latinx folks have long lacked the resources necessary to navigate the health-care system. At the time, I wasn’t sure how to fix this lack, but I knew I wouldn’t find the answer alone. The art of sitting around a table—sharing food and exchanging stories—immediately fostered an intimate togetherness. It was both magic, and a necessity. Connecting in that vulnerable way with strangers showed me the healing power of my community.
I heard repeated tales detailing a deep mistrust in the health-care system. And the data backs up these feelings. In the United States, nearly 700 women die from childbirth or pregnancy-related complications annually—far beyond other modern-industrialized countries worldwide. The CDC noted that Black mothers experience this fatal reality at a rate three to four times higher than white mothers. And that’s just looking at childbirth. The health disparities are grim for BIPOC across many other health issues, including higher rates of cancer, suicide, hypertension, dementia, diabetes, infant mortality, and heart disease.
These health disparities not only cost us dear lives, but they come with a hefty price tag. Analysis estimates health-care inequity amounts to $93 Billion in excess medical care costs and $42 Billion in lost productivity per year, along with additional economic losses from premature deaths.
But while those early kitchen-table conversations held space for the pain, we also began to envision a new future. A future without isolation; where people can bring their full selves into the wellness journey, rather than being forced to compartmentalize in a system that has refused to see them for so long.
This past year has given us a collective awakening, and many medical professionals are wanting to improve our flawed system. But where do we begin? Just as the Latinx community in the United States isn’t a monolith, but a beautiful array of cultures, our collective hope as a diverse country is to also become fluent in the same language. The language of health care.
This language can’t be learned in any textbook. Building fluency in health care means taking a comprehensive approach— beyond medicine and anatomy—to understand how systemic oppression, cultural perception, and history impacts our experiences today.
Health-care fluency can be broken into four parts:
Literacy: the ability to read, write, and speak in the language of healthcare, including an understanding of medical and insurance systems.
Knowledge: the understanding of science, medicine, and anatomy, which is crucial for informed consent on any medical procedure.
Perception: how customs, beliefs, and views of social identity shape our decisions around health.
Confidence: our trust in and understanding of how to navigate the healthcare system, which includes awareness of our rights and past systemic injustices.
Right now, there are very few spaces addressing all four areas of health-care fluency. The health-care system rarely takes the last two points—perception and confidence—into consideration. And underserved communities have less access to resources surrounding literacy or knowledge.
While our system is flawed, it's not static. We can grow, change, and heal with each other by focusing on increasing health-care fluency. I’ve seen this approach work firsthand in Radical Health, my own organization in the South Bronx, where we facilitate communal discussion using traditional, Indigenous circle practices, then share data and learnings with public health organizations to help make systemic, positive change.
Just as I witnessed this system fail my mother years ago, we were all collective witnesses to a failing health-care system in 2020. The pandemic has shown how isolating the medical system can be—a system that, in its current state, is an antithesis to my culture. Icy, sterile, disconnected. Yet the pandemic also illuminated the potential for massive growth in accessibility—particularly with the support of telehealth.
Technology is now allowing us to expand our circle and provide resources to empower the overlooked and underserved. We face a pivotal moment in healthcare to grow with the digital age, addressing all four areas of health-care fluency, while still honoring our roots. Fortunately, the bonds of community run deeper than the injustices of the current health-care system.
This pandemic has not only shown the strength of the Latinx culture, but its ability to heal. Our practices of dancing, hugging, and togetherness that were denied us this past year, are the exact tools needed to heal after experiencing this collective trauma of Covid-19. Throughout my years in healthcare, I’ve learned that the power of comunidad is by far the best medicine for a wounded world.
Ivelyse Andino is the award-winning telehealth founder and CEO of the first Latinx-owned Public Benefit Corporation in New York state, Radical Health, which is working to create an equitable medical system and empower underserved communities through healthcare fluency.
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