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The Unexpected Cost of Having a Pre-Existing Condition

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With the all of the different efforts this year to repeal and replace the Affordable Care Act (ACA), I wanted to share my story of being a college student in the 1990s with a pre-existing condition. Experts and non-partisan advocacy groups have reported that the changes being proposed could have a devastating effect on people with pre-existing conditions. Easing restrictions will allow insurance providers to raise premiums or deny coverage for people with pre-existing conditions. And now the Trump administration has filed a law suit alleging the Affordable Care Act (ACA) is unconstitutional. As a person with two pre-existing conditions (one rare disease and one chronic illness), I have faced multiple struggles to access care and treatment.

In 1995, at the age of 20, I was diagnosed with hypothyroidism. My doctor assured me it was treatable, and that as long as I took the prescribed medication and followed up with an endocrinologist yearly, I would be fine. That sounded easy enough at the time, until I decided to change jobs.

While attending college full-time, I also held a full-time job. I worked in retail throughout college until I graduated, always having to pay to access health insurance. I was a young, healthy, single woman, so for me insurance was pretty cheap — about $50 per month. After my diagnosis, I would soon learn the price was much higher.

I was working for a small toy store when I was diagnosed with hypothyroidism. I really enjoyed my job and had a wonderful supervisor who was incredibly supportive of me going to school. Things being what they are, management changed, and my new supervisor was not so supportive. My mom always said you don’t leave a paying job until you have a new one, so I searched for a new job and quickly found one. I was so excited to start, especially since I again had a wonderfully supportive supervisor. That’s when the trouble began.

As recommended by my general practitioner, I continued to take the Synthroid as prescribed and follow up with my endocrinologist. However, I would soon discover the new insurance policy I was paying for would not cover my medication or my visits to the endocrinologist because hypothyroidism was considered a pre-existing condition.

Up until that point, I had never heard the term pre-existing condition, and wondered how my insurance could deny treatment for a medical condition that was diagnosed by a licensed physician. In fact, my insurance company began denying all of my claims, regardless of the reason for the appointment or type of doctor I was seeing. My condition was diagnosed while I had insurance, but when I changed jobs, the  insurance providers changed. Therefore, my hypothyroidism was now considered a pre-existing condition.

My mother and I would spend hours on the phone attempting to sort through it all, only to be told my hypothyroidism would not be covered. I was also told my insurance would not cover other doctor visits until I could prove those visits were not related to hypothyroidism. If I saw my gynecologist and she discussed my thyroid, and happened to make a note of it, my insurance would not cover it. If I saw my general practitioner for a physical and she wrote a refill for my prescription of Synthyroid, my insurance would not cover the visit. In the eyes of my insurance provider, these visits dealt with a pre-existing condition, even though the primary focus of these visits was not my thyroid.

As a result, I had a mountain of medical debt that negatively affected my credit score, which followed me for years. I also stopped seeing the doctor and stopped taking my medication because I could not afford it. Consequently, I started to get sick and began exhibiting symptoms of hypothyroidism, included extreme lethargy, weight gain, depression and hair loss.

My parents helped me, but most of the time I did not share my symptoms with them because I didn’t want them to feel like they had to bail me out. My mom would notice how tired and depressed I was, asking if I was taking my medicine. Even though it was not true, I would say yes.

After three years at my job, I found myself in a situation I was not comfortable with, and quit my job. While I didn’t want to quit without having a job to move into, I really felt I had no choice. Suddenly, I found myself without a paying job or health insurance for the first time in a while. During this time, I discovered the Cleveland Free Clinic, a wonderful free service available to residents in North East Ohio. Initially, I was skeptical about receiving services at the free clinic, as I had unfounded, stereotypical ideas about who it served. Of course, what I found was the exact opposite. I was able to get my prescriptions filled for free. I was able to see an endocrinologist, gynecologist, dentist, and other doctors as well. I received care there for a few years, until I found a new job with quality insurance.

Reflecting back, I realize I was young. It never occurred to me to spend extra on my insurance so I could have a quality plan. By the time I was labeled as having a pre-existing condition, it was too late. Perhaps if I had spent the extra money, I would not have ended up with so much debt.

The president and some Republicans defend their choice to repeal and replace the ACA as a way for young, healthy people to save money. I admit — it sounds good — especially if you are a young working person with limited income.

However, I was one of those young healthy people. No one likes to think about what they will do if they get sick, especially when you are 20 years old.

We need to remember that a pre-existing condition doesn’t have to be something life-changing like cancer or a disease so rare most doctors aren’t familiar with it. Hypothyroidism is a common condition most doctors understand how to treat. I take a prescription drug that is relatively cheap in comparison to others.

I now have two pre-existing conditions, as I was diagnosed with Pompe disease in 2015. Treatment for Pompe is extremely expensive, costing about $140,000 per month. There is no way I or any other Pompe patient could afford to pay for their treatment if insurance providers suddenly become able to deny or charge people higher premiums because they have a pre-existing condition. It could lead to large amounts of medical debt for many Americans, which is why the current efforts to repeal and replace the Affordable Care Act are a step backwards for patients and our healthcare system.

Originally published: June 27, 2018
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