We humans have a tendency not to want to think about the worst. So, I get it that as a society, we have collectively plugged our ears and sang at the top of our lungs to block out the suffering of fellow Americans and the potential for ourselves and our loved ones to experience this suffering when we fall ill. However, as anyone who has been in the American healthcare system with chronic illness or chronic pain in the past fifteen years will tell you, our healthcare system is deeply broken. Also, as it so happens, our system is set up so that if we happen to fall ill, it’s also exceedingly common to fall into medical bankruptcy and poverty. It doesn’t have to be this way, despite the heavy-handed efforts to tell us it does.
I have spent the past thirteen years of my life navigating the American healthcare system and like 90% of Americans who become disabled due to high-impact chronic pain, I also had to navigate the American social safety net (or lack thereof). I have numerous diagnoses that are considered “rare” medical conditions, including Ehlers Danlos Syndrome, Complex Regional Pain Syndrome (CRPS), and Stage IV Endometriosis. When I looked into the statistics of my own conditions, I found out that they are not as “rare” as our healthcare system proports. According to the CDC “During 2021, an estimated 20.9% of U.S. adults (51.6 million persons) experienced chronic pain, and 6.9% (17.1 million persons) experienced high-impact chronic pain (i.e., chronic pain that results in substantial restriction to daily activities) with a higher prevalence among non-Hispanic American Indian or Alaska Native adults, adults identifying as bisexual, and adults who were divorced or separated.” When I saw this, and many other publications and studies on healthcare disparities, as a marginalized patient, I feel frustrated by the implication that anyone who is an “other” (meaning gender nonconforming patients, people of color, and basically anyone who doesn’t identify as a cis-gender straight white male) by default will receive lesser quality healthcare and the system knows this, but despite the many calls for change, it remains essentially the same.
What our healthcare system studies and focuses on are predominately white, cis gender male patients, diseases, drugs, and treatments. To be clear, my use of these terms is in no way an attempt to indicate that white cis gender men are inherently bad or that they always get what they need from our healthcare system. I am merely pointing out that our population is more than 50% female and more than 40% people of color. These people represent an enormous gap in the healthcare teachings, which creates an implicit bias against those who are not cis white males. This implicit bias results in downplaying of our symptoms and psychopathologizing of our pain.
Chronic pain (which also happens to be mostly a female issue in the US, despite being a place where women are less likely to have their pain taken seriously or treated at all) has been the focus of the majority of my work and is where I am most impacted by the system. According to Harvard Health, “70% of the people (chronic pain) impacts are women. And yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men.” The reasons for this are multifactorial and somewhat undiscovered, because when it comes to women’s health, the US has woefully understudied it and it has been mostly left out of curriculums.
After being disabled for over seven years and only beginning to find the answers to my healthcare needs with doctors who required patients to pay out of pocket, I realized that the lack of access to knowledgeable providers who could address my “complicated needs” as a patient lied within the US. Unfortunately, I was being denied access to them, due to the same social safety nets supposedly put in place to care for people like me. I have only recently been able to unearth doctors who are knowledgeable in regard to my healthcare needs, but Medicare doesn’t cover them and most of them don’t accept Medicare, or insurance at all, because of the limitations in coding and billing that won’t cover the kind of extensive care that patients like me need.
As the years go on I see more and more women learning to educate and speak up for themselves, like the recent success of Maya Kowalski’s legal case against Johns Hopkins Hospital. I am inspired to continue to follow my lifelong passion of addressing and advocating for change where I see injustice (ie antiracism, anti-sexism, anti-ableism, economic inequality and equitable solutions). Through this pursuit, I have concluded that the answer to all of these issues lies in a bigger movement…a movement for healthcare justice.
Healthcare Justice, according to the National Institute of Health “is distinguished by a distinctively social ethic of care that reframes the relationship between health care, public health, and the social determinants of health, and names subordination as the root cause of health inequities.” This means ensuring equal and equitable (if a person needs more support to get to the same place than a peer, then they get it) access to care contributes to healthier outcomes. But this doesn’t stop at what most would consider things involved in access to care, like timely provider appointments or affordable medications. It includes access to housing, food, education, and all of the many factors that drive patient behavior.
Despite what “The Powers That Be” will have you believe, we actually can ‘have it all,’ if ‘having it all’ means high quality healthcare with an individualized approach at a reasonable price—cheaper than what we’re currently paying (according to the National Institute of Health, Americans would SAVE approximately $450 billion a year with a single payer system), and offering that same level of care to everyone, instead of basing individual outcomes on patients’ income and insurance payer. For example, we have heard ad nauseum the claim that “The US has the highest rate of opioid prescriptions per capita than any of our fellow “High Income Countries.” However, the actual order is: the UK, followed by Germany, and then the US. The UK and Germany both use more opioids than the US and have better health outcomes and lower addiction rates. When I read this, and put it together with the rest of my research and lived experience, it led me to believe that we’re focusing on the wrong things when it comes to healthcare in the US.
What these other countries (who we consider our global peers) have that the US does not, is a robust social safety net that will ensure peace of mind and financial wellbeing for their citizens should they happen to get injured or sick. Their doctors do not base care on what patients can or can’t afford or what their specific variety of health insurance will pay for. They base it on what the best treatment for their patient is. Access to care in these countries is simply not an issue like it is in the United States. This means that patients with chronic pain or illness do not have to worry about government intervention in their healthcare the way Americans do. Ironically enough, this is the exact opposite of what most Americans are convinced of: that having bigger social safety nets would lead to more intrusive government action. I would even argue that having better social safety nets would create the kind of patriotism and care for one another that I have heard so many people say that we lack in America. A restructured healthcare system is just the kind of thing that could unite us. It’s time we focus on humanity and healthcare for all, including investing in individualized treatment and an understanding of all patients instead of profit margins and corporate greed.