13 months without health insurance: a pre-existing condition nightmare

By now, you’ve heard that two nights ago, while the country slept, the Senate voted against measures that would keep key provisions of the Affordable Care Act in place. I believe this is short-sighted and dangerous, potentially leading to millions of Americans losing their healthcare coverage. I chose to write to my local congressional representative, and I encourage you to do the same.

Dear Congressman Donovan,

I’m sure you and your staff are being flooded with opinions on the Senates recent vote regarding the Affordable Care Act, 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, auto-immune 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 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 okay 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 two o’clock 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 that 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 okay, so you would need to be okay.

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 auto-immune 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 3-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 thirteen 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 that 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 our Senate just voted to take that away and it has crushed 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 okay.

I implore you to take a more holistic look at what we’re doing here. We cannot repeal these key parts of the Affordable Care Act without having a replacement. Doing so would 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.

All my best,
Pamela “Lala” Jackson
Bay Ridge, Brooklyn

Please get in touch with your local congressional representative (you can find yours here) and let them know what their vote means to you. 

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