Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
An open letter to Congress, from a person with type 1 diabetes who struggled without health insurance for 13 months:
I’m sure you and your staff have been flooded with opinions on the Senate’s vote regarding the Affordable Care Act (ACA), so let me go ahead and add to the pile. I have lived in your district since February of last year, moving from Atlanta, GA to take a job. I’m lucky to be in a place now where I have wonderful healthcare provided by my employer and I am tremendously grateful for it. But for 13 months, before the Affordable Care Act and its provisions about coverage for people with pre-existing conditions was in place, I didn’t have health insurance. No amount of money could have gotten me coverage, because I have type 1 diabetes.
If you’re unfamiliar, type 1 diabetes is an unpreventable, incurable, autoimmune disease. My own immune system attacked my body and killed off the cells that create insulin, the hormone that breaks down food into energy for our system. There is nothing I did to get it, and nothing I can do to make it go away. Every day requires the utmost attention to keep myself alive, and I rely on our healthcare system to make sure I can do so.
Does the Affordable Care Act as it stands work for everyone? No. Do insurance and pharmaceutical companies, for-profit entities whose sole charge is to make money, need to be held accountable for price gouging and continuing to increase cost of private coverage? Yes.
But taking away access to coverage for our most vulnerable populations is not only ethically deplorable, but financially unsound. Taking away preventive and maintenance care for people who are already ill drives us to emergency care, stacks of bills we cannot hope to pay and life on a stressful, precarious edge where it is a constant choice between paying for food or rent or paying for medication, because paying for both isn’t always possible.
I’ll be frank – living with an unpreventable, incurable autoimmune disease where I am dosing lethal medicine for myself every day without any kind of medical oversight or help? It’s terrifying. It is only through others’ kindness and the ferocity with which my mom fought for my well-being that I survived.
I rationed insulin. I bought it a bottle at a time, $150+ out of pocket. (This was back in 2009. Now one bottle costs upwards of $300-$600). It should have lasted me about a week; I would make it last 10 days. I purposely kept myself on the edge of OK because I couldn’t afford anything else. I checked my blood sugar as little as possible, and sometimes less than that, because blood sugar test strips are one of the most marked up medical commodities on the planet – they cost less than a penny to make but can cost more than a dollar per strip.
I had no back-up plan. When my insulin pump broke at 2:00 in the morning, I didn’t have any other way to administer insulin, because I didn’t have a doctor who would’ve prescribed me insulin pens that I could’ve kept stocked in an emergency. I ended up in the emergency room, and later with a several-thousand dollar bill I could not pay, while I waited for my replacement insulin pump to be sent to me. I would have died within hours had I not gone for help.
I was in my first job out of college. It was the dreaded year of 2009, so no one – not even the local Starbucks – was hiring. My job was classified as an internship, so they didn’t have to provide benefits. When I started, I made $800 a month. I slowly inched my way up to $1,600 a month. My rent was $600 a month. That emergency room bill was $2,600. When the hospital’s collection agency started calling my job, I was regularly reduced to tears in shame and out of fear. I did not know what to do.
I spent a lot of time in my job’s hallway, crying, on the phone with various medical providers. The company I worked for was German, most of my colleagues were German, and being from a country where this never would have happened, they didn’t quite understand what was going on. But of course I should be able to get the medication that keeps me alive! We’re a first world country, are we not?
My insulin pump supplies cost about $900 a month that I knew I couldn’t pay. I spent seven hours one day trying to negotiate with Lilly, the company who made my insulin, about how I could qualify for their assistance program. Because I had a job, even though I made what I did, I wasn’t eligible. I asked the woman on the other end of the phone how it would be helpful for anyone if I were unemployed; I told her I was trying to get on my feet. She said there was nothing she could do.
When I went to my local state health clinic in Georgia to see if there was any way they could help, they told me the only care they could provide as a woman over the age of 18 was prenatal. I asked if they could provide care for my type 1 diabetes if I were pregnant. The clinic worker shrugged – “I guess that would make sense because we would need to make sure the baby way OK, so you would need to be OK.”
When I ended up with bronchitis that first winter out of school, it was only through the kindness of a doctor who kept my visit off the record and a technician who turned her head the other way when I was given an off-the-books chest x-ray that I was able to get the care I needed. Being “normal-people” sick on top of an autoimmune condition? Those are the random things that tend to take us out, people asking later, “But what happened? Wasn’t it just bronchitis?”
On July 1, 2010, I was made full-time at my job. On October 1, 2010, my three-month grace period was up, and I was sent an identification card for my very own health insurance plan. My coworkers baked me a cake. My mom sent me flowers. Every friend congratulated me. I cried a lot those first few days. I hadn’t realized at the time just how much terror I had carried with me for 13 months, never knowing around what corner I was about to get pummeled with a new bill to deal with, a new sickness to navigate alone, a new emergency in the middle of the night I could not get help with.
When you’re living with a chronic disease, as so much of America is, you must have a safety net. You cannot get by without it. And if our Senate votes to take that away, it would crush me.
Working for JDRF, the world’s leading organization for type 1 diabetes advocacy and research, means I will always have the best possible coverage for my type 1 diabetes – I could not be more thankful for it. But I know how many people will be caught just like I was caught, and that is not OK.
I implore you to take a more holistic look at what we’re doing here. We cannot repeal key parts of the Affordable Care Act without having an adequate replacement. Doing so could send millions of people like me back to a place of fear, financial peril and sickness that could each be managed with proper care.
I appreciate your consideration and your help. I know you work hard on behalf of your constituents and I am grateful that you will work hard for us on this as well.
This post originally appeared on Lala Jackson.
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Thinkstock photo via izanbar.