I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.
When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.
When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.
When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.
When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.
I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.
I was blindly privileged.
I learned my college boyfriend didn’t have health insurance. It was the first time I had ever heard such a thing. “What do you MEAN you don’t have health insurance? Everyone has health insurance!” I was shocked and bewildered. I was angry at him! I tried to convince him to get health insurance. Even though he said it was his choice, I know now that if healthcare were right he wouldn’t have had to choose not to have it.
When I graduated from college I learned not all jobs provide insurance. I began to wonder how people without it accessed healthcare and considered myself lucky to find a job that provided it. I had insurance, but it was just a cushion in case I broke my nose again, or to get my annual pap smear. And because I assumed it would always be there I didn’t use my healthcare as I should have. I didn’t have a primary care physician. My health records were all over the place; every checkup happened in a different office with a different doctor. I ran marathons, I ate healthfully, and I hardly ever got sick.
When I got burned out from my job, I made the risky decision to quit and be a professional mover. I chose to have a job that would require me to be as healthy as possible, work long hours, and lift heavy objects daily. I loved that job. But I didn’t have health insurance. I willingly gave it up – because I didn’t need it.
And I was fine. For six months.
A week after moving across the country in 2011, I landed in the emergency room. When I was discharged I couldn’t pay; I didn’t have a job yet. For a ten minute ambulance ride I faced a $3,000 bill. It was my first time experiencing a system that works for those who can pay and is harsh towards those who can’t. I learned about “charity” pay for qualifying patients. I began stressing about the health insurance I didn’t have. Finding a job was important, but none of them came with health benefits. So I tried my best to stay healthy but feared I would become sick or get injured and need care again – that I couldn’t afford.
I didn’t stay healthy.
In 2013 I discovered I had inherited a severe auto-inflammatory disease that primarily affects the spine – Ankylosing Spondylitis. I didn’t have health insurance; I couldn’t afford it working 15-20 hours a week. This was nearly a year before the Affordable Care Act (ACA) was implemented. Pre-existing conditions could still disqualify people from insurance plans (Paul Ryan is now trying to reinstate pre-existing barriers) or require patients to purchase more expensive plans, so I couldn’t get a diagnosis on paper until after I had secured insurance. I couldn’t afford health insurance but I needed an official diagnosis to begin treatment to manage my degenerative disease.
Three years later I’m still fighting for the care and insurance I need.
The ACA has made health insurance affordable for many people, but having insurance does not guarantee ready access to quality healthcare for so many who need it most. People living with severe chronic diseases (often too poor to qualify for subsidized plans on exchange marketplaces) need consistent, quality care and treatment, yet public-funded programs severely limit access to preferred providers and needed treatments.
In California, I no longer qualify for subsidized insurance through our state health insurance exchange, Covered California, because I make under $15,000 per year. I have one choice: Medi-Cal (Medicaid). Medi-Cal dictates where I am allowed to seek treatment and what treatments I’m allowed to choose on a far harsher scale than regular health insurance companies. I am permitted to choose an insurance plan outside of Covered California, but I would have to pay the full premium out of pocket – effectively a punishment for not accepting Medicaid. While the ACA helped when I was first diagnosed by allowing me to obtain insurance without being dinged for having a pre-existing condition, my current situation is such that I no longer have the option to shop on the marketplace for the healthcare that best fits my needs and budget.
Healthcare is a privilege, but it shouldn’t be.
I am reminded daily that I occupy one of the least valued seats in society. I am seen as lazy. I’m told by strangers it’s my fault I’m sick and that I haven’t tried enough treatments and home remedies to cure myself (there is no cure for Ankylosing Spondylitis).
And there’s the stigma – of being sick, but also of accepting government handouts or welfare, whichever label you prefer. Those of us who truly need public assistance would prefer we were not on it. Medicaid isn’t what I want. I want my privileged healthcare options back.
By not providing accessible care and quality options, publicly-funded programs like Medicaid and Medicare are stewards of health-based discrimination. Hereditary (and many chronic) diseases are not something we should be punished for having. We were born this way.
Healthcare is a privilege. It should be an inalienable right.
I’m still waiting for universal healthcare.