Why the Patient Protection and Affordable Care Act (ACA) Made Me Cry

Why the Patient Protection and Affordable Care Act (ACA) Made Me Cry

I remember the first article I wrote about the Patient Protection and Affordable Care Act (ACA). It was in 2010.

During my research, I saw that part of the legislation was that “pre-existing conditions” could no longer be used to deny insurance coverage, starting in 2014.

The implications were so personal and important to me that I cried.

Do You Remember What It Was Like “Before”?

I cried because I was subject to neglect by an employer and had a gap in my insurance coverage. I had ulcerative colitis and I had no insurance to cover the care I needed. I paid out of pocket for my medication, which by the time I was uninsured, was no longer working for me. My physicians at the time looked the other way when I paid only a fraction of their in-office fees. I went several years without a colonoscopy, which was a grave mistake.

How could this happen? I was in my early 20s. I didn’t know what I didn’t know and there was no one to help me sort through this. There was no internet and I was only tangentially aware of patient advocacy groups and not aware at all of how they could help me in these circumstances. I thought my only choice was to power through, take my medication, pay my bills, and carry on as best I could.

My prescription ran out. I could no longer deny how extensive my symptoms were. I was only existing, barely eating, going to work and coming straight home, always looking for the nearest bathroom. Eventually I was able to get insurance again through an employer. I moved to a different state, changed physicians and hospitals, and started the diagnostic process again.

I had a sigmoidoscopy. What the doctor saw was bad. I had a colonoscopy. That showed disease so advanced that it scared the hell out of my new gastroenterologist. My colon was falling apart. The biopsies from my colon came back showing high-grade dysplasia. I needed surgery and I needed it right away.

I was 25.

I’m Not Unique: This Is A Common Story

The cascade of events that led to my being uninsured and then not receiving care almost killed me. I didn’t know that my disease was advanced and could have led to a hole in my intestine (a perforation) or colon cancer. Once those processes started, there’s no telling how much worse my health would have become and if I would have even survived. I was in poor shape overall and the inflammation in my body was out of control.

It was only through the heroic efforts of my care team that I received the tests I needed and underwent the colectomy surgery that gave me my life back. To this day, I’m still not aware of all that they must have done to be able to get me the care I needed.

I now had health insurance but it didn’t pay for everything, of course. My surgeries to have a subtotal colectomy and j-pouch creation were expensive. The bills were overwhelming. I went back to work. I paid the bills, a little at a time.

Then, in 2014, the ACA made denial of care for pre-existing conditions illegal. As of this writing, it has only been 6 years since this provision was put into place. Even so, it seems that so many people have forgotten what it was like when “pre-existing condition” could mean denial of coverage.

Here’s what I wrote at the time:

“Prior to the Affordable Care Act, there was a provision under which an insurance carrier could refuse to pay for health care services or deny an individual coverage altogether. This situation is known as a pre-existing condition. What could happen is if a person had a chronic condition, such as inflammatory bowel disease (IBD), and their coverage had lapsed, another carrier could refuse to ensure that person because of the pre-existing condition. Because of this loophole, people who had a gap in their health insurance coverage for whatever reason could be denied coverage in the future. In some cases, even a healthy pregnancy could be considered a pre-existing condition, and an insurance carrier could deny any claims associated with the pregnancy. Under the Affordable Care Act, insurance carriers will not be able to deny benefits because of a pre-existing condition.”

Amber J Tresca, 2010

Between 50 and 130 Million Americans Live With a Pre-Existing Condition

Where is there a person who doesn’t have a “pre-existing condition?” Who can say exactly when a cancer started growing? Or when a disease process first started? What’s to stop an insurer from deciding to go back in time to birth and blaming our genetics for a disease or condition? A “pre-existing” condition is a ridiculous concept that was put into place to deny people coverage.

IBD is expensive. I’m an expensive person to keep alive. But I’m also a wife, a mother, a friend, and a human who has value. So is every person who has a so-called “pre-existing condition.” We all deserve access to health care.

How You Can Ensure We Don’t Fall Through the Cracks (Again)

This is why it is so important to advocate for the continuation of the ACA and to push for further health care policies that will help everyone, including the most vulnerable among us. The ACA continues to be under attack without a comprehensive replacement.

Are you like me? Do you live with a chronic illness and worry about how your care will be affected in the coming years? Here’s how you can make sure your voice is heard by your elected officials:

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