I’ve led an interesting life in terms of the types of insurance coverage I’ve had over the past thirty-plus years of my life. As a child, I was always on my father’s insurance. That coverage was great since he worked for the city as a police officer. I was covered for everything all the way up until I was twenty-three years old. Then I went on to getting my first job and having to choose my own health plan all the way up until I was thirty-one, through various jobs of course. Now, at almost thirty-three, I am the owner of my own business. Navigating the world as a person who makes too much for Medicaid, but not enough for an out-of-pocket plan in the health exchange, I would say I am part of the underinsured.
Knock on wood, I’ve lived a pretty healthy life even with the HIV diagnosis. I’ve never been hospitalized overnight, never broken a bone, and have been to the emergency room less than five times in my life. I eat right, I exercise and do my best to keep healthy so as not to become high risk for certain health issues that run in my family like diabetes and heart issues. Luckily for me, although I don’t have a primary health insurance plan, I have a state plan which at a minimum covers my HIV medication and treatment.
But all my health concerns aren’t just HIV-related. Every once in a while, something else is going on with me healthwise and I’m stuck between a rock and a $5,000 visit to the emergency room. I exaggerate, but then again, I am telling a truth that many of us face. That decision to tough out the pain or illness, try over-the-counter products until we are damn near on death’s door before making the decision to go seek medical help, or being thankful to make it through with minimal long-term effects.
This September one of my worst fears would come to fruition. I was lying in bed around 4 a.m., wide awake and in pain. It was the fourth straight night I had had hives and bad night sweats. They were getting worse with each evening, it seemed. I got up and headed to the bathroom just to see what I actually looked like vs. what I felt like. Lips swollen, face fully broken out and hives covering my legs, arm and torso, I stood in the mirror in fear. Hoping that this was just from stress, but knowing it could easily have been something much deeper going on. Yet, I still decided that I would wait one more night to see how I looked in the morning before deciding to “try” and find help.
That morning I woke up, and the hives were gone from everywhere except my top lip. I didn’t have insurance, so I knew I would have to find some other route of getting treatment. I first contacted the free clinic. I had actually done so via email two days before, but they finally got back to me that morning stating they didn’t have appointments available for fifteen days. I could also walk in on Wednesday but that wasn’t a guarantee that I would be seen. So that option was out.
I knew I was going to see my HIV doctor the next day, so I thought I could wait, but I also knew that my HIV care was just for that and he may not be able to write a script for anything different. Unfortunately, as a creative, I don’t have many options on being able to take days off when I am not feeling okay, so I still decided to head in to the consulting job I had. As I was walking I saw an “Urgent Care”—a set up for people needing care that may or may not have insurance or want to wait in an emergency room for hours.
I decided I would stop there for assistance. With no insurance, the deductible was $99, which I luckily had. The services were basically à la carte from that point. The more you needed, the more you would pay. I was seen by a doctor who spent about fifteen minutes with me. She gave a pretty simple diagnosis and prescribed a week’s worth of meds. I went to the pharmacy, with no insurance again, but luckily, they had an Rx program I could use. My meds came to an additional $40 and I was sent on my way.
With the introduction of the Affordable Care Act, the number of uninsured African Americans has dropped from 18.9 percent to 11.7 percent. However, this is still higher than whites and (7.5 percent) and Asian Americans (6.3 percent). Health disparity is also much higher in the African-American community, especially with HIV rates. According to a Center on Budget and Policy Priorities article “African American Uninsured Rate Dropped by More Than a Third Under Affordable Care Act,” by Peggy Bailey et al, “The African American diagnosis rate for HIV of 60 per 100,000 is almost triple that of Hispanics (24 per 100,000), the second-highest group, and higher still than whites and Asian Americans, who tie for the lowest diagnosis rate (7 per 100,000).” Insurance should never be based on race and ethnicity, with so many suffering from HIV.
This whole experience put a lot of things in perspective for me. How quickly things can go downhill when one doesn’t have insurance. How hard it must be for those who don’t have over $100 in disposable income to make the decision to seek help or suffer in silence. There are many more like me out there I know. I can only hope our healthcare system becomes one that is protecting the most marginalized people. I know one day I will be able to get insurance again. I can only hope that others will be as fortunate, and never have a day where they are unsure if they can care for themselves.
George M. Johnson is a journalist and activist. He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson.