In the debacle over implementation of the Affordable Care Act (ACA), a certain aspect of the law has always drawn my attention. Even before the Supremes decided to make the Medicaid expansion voluntary for the states, I have always been more concerned about it compared to subsidies for private health insurance. All 50 states and D.C. should have been required to implement the Medicaid expansion.
To this day, I lament the fact that a public option did not make it into the final version of the ACA that was passed by Congress and later signed into law by the President. I believe that the public option would have done what Grover Norquist and his followers have longed to do to the federal government. Instead of shrinking government so much that one would be able to drown it in a bath tub, I believe that true healthcare reform would shrink the role of private health insurance companies so much so that they could be drowned in a bath tub.
I particularly distrust the motivations of private insurance companies, especially those operated for profit. For-profit organizations operate for the benefit of their shareholders or owners instead of only policyholders. To a lesser extent, I distrust the motivations of ostensibly “not-for-profit“ health insurance groups as well. My goal here is not to rant against capitalism as an entire system. Perhaps later and with substantially more thought, that would be a separate article. However, I believe that capitalism is a disservice to citizens seeking to navigate their way towards accessible, affordable, and quality healthcare. I believe in the United States that health insurance has sadly become synonymous with healthcare. As some Americans know, health insurance is not always synonymous with access to healthcare (that is both affordable and quality), and similarly, Americans can access healthcare through emergency rooms or free/sliding scale clinics, which are neither affordable nor always accessible respectively.
To me, the ACA is a good faith effort on the part of Congressional Democrats to preserve the existing system of public health insurance for low-income individuals and senior citizens and private health insurance for comparatively high-income individuals. What concerns me is the discontinuity between the access and quality of these disparate systems aside from issues of affordability.
Until I was 16, I had the privilege to have access to private health insurance through one of my parents’ employer plans. I cannot confirm the type of plan that I had between 0-10 years, but from 10-16, I was with an HMO plan. I remember the affordable co-pays (about $10-20 per visit for my PCP). More importantly, I remember the quality of the relationship that I was able to establish with my PCP. I remember the digital growth charts, the careful explanations about vaccines (that tetanus vaccine needle is huge!), being diagnosed with asthma, and our shared bewilderment over some recurrent middle ear infections. My PCP did not just treat me as a sack of cells that Kaiser Permanente would later reimburse for his services. He wanted to know about me as a person. He referred me to counseling during some rough times during my teenage years. When I started to develop an interest in chemistry when I was 16, he taught me some basics of organic naming and structure drawing. I still remember how he taught me about MTBE (Methyl Tertiary Butyl Ether). During my HMO years, I had an excellent relationship with my PCP.
A few months after turning 17, I had to part ways with my HMO PCP. My mother lost our family’s health insurance after being involuntarily terminated because of a massive stroke (roughly a year later she later made a full an vibrant recovery) after she exhausted her paid vacation and sick time and 13 weeks of unpaid family medical leave (see the Family and Medical Leave Act of 1993). Sometime between ages 16 and 17, my parents’ enrolled my younger brother and I into Maryland’s State Children’s Health Insurance Program (SCHIP), which is simply Medicaid/Medical Assistance for children.
SCHIP literally saved my life, but not without a cost to my physical health and my dignity. It also prevented my family from going into financial ruin. Between November 2008 and early February 2009 (while I was 17), I developed some mysterious symptoms. I experienced all kinds of things: vomiting, muscle cramps, exhaustion, reduced appetite, unusually high blood pressure, and incontinence. My parents and I would make frequent visits to my new PCP through SCHIP. The access and affordability were present, but quality took its time to become apparent. I saw this doctor almost every two weeks. Medicines were prescribed, urinalysis was done, physicals were done, and the rest. Yet, I was not getting better. Towards the end of each visit with my new PCP, he would ask my parents to leave the examination room. Every visit, it was the same type of question: “Is there anything you want to tell me while your parents aren’t in the room?” Every time this question bewildered me. I would always say no. I told him that what I said before was just as valid then as it is now. Despite each visit coming with the same terminal question, I didn’t question why I was being asked that question.
By late January 2009/early February 2009, my parents had had enough. I was not getting better. In fact, I was getting markedly worse. I would miss days of school constantly, and foods and liquids started to become my enemy. At that point, my parents decided to switch my SCHIP PCP. My new PCP started off in the same way with physicals and urinalysis, but with two noticeable differences. First, she did not pull me aside at the end of my appointment to ask if there was something I was not telling her. Second, she ordered a full blood workup. Apparently the first workup caught her by surprise because she ordered me in for a retest and follow up a few days later. Before she could have me come in to discuss the results of the second test, my mother called her one morning. She called because I was preparing to go to school and had been sipping a glass of water, which I immediately vomited. My PCP told my mother to take me to the emergency room. My mother did not tell me at the time, but my PCP told my mother that she suspected I was in acute kidney failure.
That night at the emergency room at Johns Hopkins Bayview Hospital, a talented team of doctors and SCHIP saved my life. It was then that I found out that I had been suffering for months due to the gradual onset of acute kidney failure. I will never forget that night and the ones that followed. The team of doctors told me that if I had waited another 2 days that I would have lost both of my kidneys permanently and needed a transplant. Under the deft care of the doctors, I underwent surgery to correct the problem and would spend a few more days in the hospital. Thankfully I recovered fully and have functioning kidneys with minimal scarring.
After being discharged from the hospital, my PCP once again resumed primary care. In our first meeting after being discharged from the hospital, she told me that my previous PCP was not taking my symptoms seriously because he thought that I had a STD that I was not telling him about. He treated me for a problem I didn’t have for months, and I nearly lost both of my kidneys as a consequence. My new PCP told me this with disgust in her voice, which echoed what I felt on the inside.
I have had many times in my life where I have been acutely aware of my blackness. But that entire experience was the first time my blackness had been an impediment to my healthcare. This is something I came to recognize in hindsight. For both doctors, I came to them with the same set of problems, provided them with my candor and honesty about what was going on, my parents backed up my story with what they observed; I complied with all tests, vigorously followed medication regimes, and had the requisite follow up appointments. Finally, I concluded that it came down to a matter of perception by my PCPs. My first doctor saw me as my ethnic and socio-economic background only; my second doctor saw me as an individual.
I never met with the first doctor again. I was too hurt by what I found out and the pain I experienced in the hospital. In so many ways, I wish I could have had the kind of interaction that Dorothy Zbornak from the Golden Girls had when she confronted her original doctor about how he didn’t believe she was sick with Chronic Fatigue Syndrome.
I wish I had that same kind of courage. I wish that I had told my original doctor that I am more than my skin color, more than a stereotype, more than someone from the inner city, more than my parents’ socio-economic background, more than someone that doesn’t know how to have safe-sex (independent of the fact that I was not sexually active at the time), and more than someone who should be disregarded. I do not need to define myself against others to gain respect and access to healthcare. I am a person. I am an individual, and I deserve to be treated as the person I am and not the person you suspect me to be.
Despite the affront to my health and dignity, SCHIP saved me. Later SCHIP would go on to provide me with a highly necessary partial urethral reconstruction that I would not have been able to access otherwise.
What brought me to write this essay is not my past experience alone. As a recent college graduate, I had and still have access to my college’s private health insurance (nationwide PPO). Recently, I called a healthcare provider about making an appointment. When the operator asked me what insurance I had, I stated my provider. When he asked me a follow-up question of whether my insurance was private or through Medicaid/Medical Assistance, I heard a bit of condescension in the operator’s voice about Medicaid/Medical Assistance. My insurance company operates as a private PPO and HMO and a Medicaid/Medical Assistance/SCHIP MCO in Maryland. I immediately told him that I changed my mind about seeking healthcare through his organization.
I may be on the private insurance side now, but I have been on the Medicaid/Medical Assistance/SCHIP side before. I believe that for now, the ACA is settled law. I don’t believe it will be repealed or some nonsense, but I think it is the first step. The ACA maintains a dual system of health insurance in the United States. Regardless of if you obtain your health insurance through a private employer plan, a private exchange plan with a subsidy, Medicaid, the Medicaid expansion, or even Medicare, we all deserve dignity when we attempt to access our benefits. For those without health insurance due to their state’s refusal to expand Medicaid or any other reason, you deserve that same dignity when you attempt to access healthcare. In the absence of truly universal healthcare, we all deserve respect from our chosen healthcare providers regardless of our health insurance provider. We are all individuals with our own stories and our own experiences, and every patient in the United States deserves that recognition and respect from their healthcare providers.