How I Work to Change the Future of Insurance Coverage for People With Eczema

My name is Traciee, and I am an advocate for people with eczema. 

When I was an infant, eczema affected my arms, legs, neck and scalp. By the time I was 12 years-old, my eczema had spread all over my body and I experienced the hurtful social stigma of eczema personally. 

In sixth grade, I started participating in track and gymnastics and the thought of exposing my affected skin was terrifying. I worried about what people would say or think if I had to wear a uniform that allowed them to see my eczema. I’m always amazed at how cruel kids can be, but the ignorance of adults is even more mind-boggling.

Education is essential to change misconceptions about eczema

As a teenager, I remember preparing for a race and overhearing the opposing team’s coaching staff (at the behest of some parents) request that I be disqualified from the meet due to the “possible” exposure to my flared, weeping, oozing outbreaks. The race was delayed almost an hour while they looked up a precedent in the rules about whether I could compete. The officials spoke to the opposing team’s healthcare person, who knew absolutely nothing about eczema, and asked if I was contagious and a possible threat to the other kids.

The way they scrutinized my health and put me on public display was horrific.

In the end, I did get to race and no one had to worry about me “contaminating” them because I left them in my dust: not only did I win, but I broke the school’s record.

The power of sharing my story in my own voice

I’ve always wanted to get involved in advocating for those who did not have a voice or were unable to find their voice. I didn’t know how to do this until a post about the National Eczema Association (NEA) came across my social media feed, which detailed ways to help folks with eczema. As I read through the information, every old feeling I thought I had already worked through came funneling in like a tornado. It brought me to tears.

Once I knew how public policy was made, I knew I needed to share my experience.

Working with NEA has allowed me to share my story with legislators. In 2018, I testified in front of the Oregon State House of Representatives with a group of providers, caregivers and pharmacists. We spoke about our inability to access care because of the red tape put in place by insurance companies. Our goal was to remove “step therapy,” which is the process of insurance companies requiring a person to try less expensive treatments before approving the treatment actually recommended and prescribed by the healthcare provider. 

The staff at NEA walked me through the entire process – we worked very closely together. I was fully prepared in what to expect, the length of time I would have to speak and all the procedural details about how to speak to the legislature. Once the initiative passed the House (which it passed unanimously) it went to the Oregon State Senatorial Healthcare Committee. 

I was extremely nervous, since we’d been postponed several times, and this was the last session before their break. To my surprise, the process of testifying went great; at least two of the senators were personally familiar with eczema and how it can ravage families, finances and quality of life. They were receptive and attentive while I testified, and their level of interest validated our effort.

Advocacy is not as hard as some people may think

Many folks believe there’s more to advocacy, but it’s mostly just sharing your experience, how it shaped you and what could have been done better. Anyone who speaks their truth in a difficult situation in the hope of bringing about meaningful change, that person is an advocate whether they know it or not. Advocacy is a way to make a difference for everyone who has ever been denied access to their community because of an itch, a flare or an eruption that no one took the time to understand. Personal experiences are priceless. 

Now, as an adult, my eczema isn’t as bad as when I was a young girl. But it’s still daunting. I have scarring from scratching incessantly. I have emotional scars, as well. It has taken years of work, but I’ve come to love my “beauty scars.” The scars seen and unseen have shaped me into the woman I am today. That said, let’s be clear: the stress and anxiety of eczema can have a profound effect on your day-to-day living if left unchecked.

Always remember, you don’t have to fight this fight alone

It’s important to know that you’re not alone. There’s a whole community of folks in this fight to make medications more affordable. And remember: it’s also important to take care of your mental health. Eczema can cause a lot of anxiety, depression and even suicidal thoughts when you feel isolated and alone. But that simply isn’t true: YOU ARE NOT ALONE. Don’t believe the negative self-talk. The path to finding what works for you starts with a simple hello! Get out there, and reach out to the eczema community – I promise it’ll be worth it.

Author Traciee Thomas is a NEA Ambassador. Learn more and join NEA Ambassadors.