If there’s a reason I’m still alive when so many have died…

Without affordable healthcare many non-fatal diagnoses become life threatening.

Author receiving breathing treatment for pneumonia.

The poverty level in my city is 28% higher than the national average, and my family has always been a part of that statistic. I’ve had health issues my whole life, in fact, I became home-schooled because I was missing so much school due to illness. As a child, I was eligible for Medicaid but lost coverage as an adult. Despite still living in poverty I was not eligible for assistance as an adult with no dependent children. I went seven years without medical coverage before finally being able to get a plan through the Affordable Care Act (ACA) Marketplace.

During those seven years, my health issues worsened. Truthfully I’ve always been disabled, but I tried to work until 2011. I was never able to work for any employer very long as they quickly tired of my excessive absences. Somehow I got the credits needed to qualify for Social Security Disability Insurance and applied when I hit the “acceptance” stage of grief for the healthy life I would never have. Unfortunately, going without health insurance meant I had been unable to pursue treatment for several of my health problems. Therefore, I could not prove an ongoing diagnosis and/or severity via medical records and was denied.

Regardless of not being able to seek care in many cases, there were times it was unavoidable. In the past decade I’ve spent more days in a hospital bed than I have a hotel. Thankfully our hospitals are required to provide care even in absence of payment, but that doesn’t mean they don’t charge. Being unable to pay has left my credit rating in the 400’s.

Many of my diagnoses come with chronic pain, and during my uninsured years said pain was rarely managed. I was labeled a “drug seeker” and not even offered physical therapy for the conditions it could have helped. I only survived by sheer force of will and practically overdosing on ibuprofen. This has caused lasting damage to my throat and stomach. So much damage that I am banned from using any anti-inflammatories for possibly the rest of my life. That wouldn’t be so bad if I wasn’t living with arthritis.

Shortly before the ACA was passed my mental health plummeted. At the time I was physically unable to get out of bed most days other than to use the bathroom. I could not fathom spending several more decades in that state. I often fantasized about being diagnosed with something fatal so that there would be an end date to my suffering. I had lost all hope.

If it were not for a combination of things that changed with the ACA (including not being denied for pre-existing conditions, no more yearly or lifetime dollar limits, and government subsidies) I feel confident that I would not be alive today. Even if none of my other diagnoses were fatal, mental illness can be. Because of my Marketplace plan I have been able to go to the doctor when I need. I have been able to have surgeries and procedures done. Having insurance saved me $150,000 in medical costs last year (2016) alone. I had hope again that while my life will never the way I’d imagined, it was still worth living.

Some act as though surviving prior to the ACA came easily, thus repealing it is no big deal. I am one of the lucky ones still around to testify otherwise. Reform came in time for me, unlike so many others. We must not ignore the real suffering and the real danger a repeal would cause those already disadvantaged. We must not forget those already lost to the worst healthcare system in the industrialized world.