Op-Ed: My Pre-Existing Condition Doesn't Diminish My Self-Worth

I was born with a pre-existing condition.

If you think about it, that statement doesn’t even make sense, but somehow, it’s defined my experience with the U.S. health care system.

I came into this world with a rare genetic disease that causes episodes of mass swelling ranging from simply painful to fully life-threatening. I had no control over any of this, but that didn’t prevent it from being held against me.

When I was young and covered by my dad’s insurance, my claims were frequently denied, leading to costly out-of-pocket expenses for medications, treatment and surgeries. I was so sick and so desperately needed care, but in a country where health is a commodity, it simply wasn’t affordable to be healthy.

As an adult, I bounced between not having insurance at all to having costly insurance that wouldn’t cover what I needed. Emergency rooms for life-threatening swelling became my only health care, and I would even put that off until the last possible moment. I remember holding my EpiPen as my throat swelled and wondering if maybe I could get away with not using it this time. I would try in desperation to just give it a couple more minutes, because if I use it, I have to buy another one, and that would cost my grocery budget for the entire month.

To make that calculation, “Which can I afford, to breathe or to eat?,” is dehumanizing in ways that I will never be able to fully express.

Over the years, this system had trained me to believe I didn’t deserve health care. I developed depression with severe anxiety. I stopped trying to live and just tried to survive. It feels like I’ve spent my whole life begging to be allowed to be healthy.

I now have health insurance that, along with protections from the Affordable Care Act, has allowed me to access the care I need. I have gone from merely surviving to, in many ways, thriving, and I am so grateful. But even this insurance carries a high deductible and ever-increasing premiums.

I still unexpectedly end up with bills for thousands of dollars after necessary testing or treatment. I get to the pharmacy only to find out a new prescribed medication is too expensive for me to take. To this day, I ration my inhalers because they are so expensive to replace.

Living with a chronic illness is a full-time job. Take your medication on schedule. Do your respiratory therapy every day. Exercise. Follow the nutrition plan. Fighting a disease is hard enough, and the high cost of care makes it even harder.

Despite the high price tag, I am healthier today than I was years ago. I invest in myself to remember I’m more than the cost of a pre-existing condition. I do triathlons to show myself how strong I can be. I try to remember to truly live this life I’ve been given.

But it shouldn’t be this hard.

Last month, I shared my story standing alongside Governor Jared Polis and Lieutenant Governor Dianne Primavera, who have made health care affordability a key goal of their administration.

Their ideas — importing cheaper prescription drugs from Canada, a reinsurance program to help balance the costs of treating unique and expensive illnesses like mine, more transparency in the system, and a public insurance option to increase competition and help drive down premiums — would all have an enormous positive impact on my life and my monthly budget.

I hope that the 2.4 million Coloradans living with a pre-existing condition join me in making their voices heard, and I hope that every lawmaker across our state and country hears our pleas.

Having a genetic flaw does not reduce my worth. Needing daily medication does not diminish my value. Every person deserves to have the care they need, because health care is a human right, not a privilege for those who are lucky enough to afford it.

Kudos to our new governor and lieutenant governor for recognizing this and taking action on it.

Rachel Wall is a baker who lives in the LoDo/Ballpark neighborhood and manages a kitchen for High Point Creamery.

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