How I’m working to change the future of insurance coverage for people with eczema
By Tracie Thomas
Published on: April 29, 2022
Last updated on: April 29, 2022
My name is Traciee and I am an advocate for people with eczema.
When I was a child, eczema affected my arms, legs, neck and scalp. By the time I was 12 my eczema had spread all over my body and I personally suffered the hurtful social stigma of eczema.
In sixth grade I started doing athletics and gymnastics and the idea of exposing my affected skin was terrifying. I worried about what people would say or think if I had to wear a uniform that let them see my eczema. I’m always amazed at how cruel children can be, but the ignorance of adults is even more mind-boggling.
Education is key to changing misconceptions about eczema
As a teenager, I remember preparing for a race and hearing the opposing team’s coaching staff (at the request of some parents) asking that I be disqualified from competing due to exposure. “possible” to my flared, weeping, oozing outbreaks. The race was delayed for almost an hour while they looked for precedent in the rules to see if I could compete. The officials spoke to the opposing team’s medical staff, who knew absolutely nothing about eczema, and asked me if I was contagious and if I posed a potential threat to other children.
The way they examined my health and exposed me to the public was horrible.
Eventually I was able 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 record for school.
The power to share my story with my own voice
I have always wanted to get involved in the defense of those who had no voice or who were unable to find their voice. I didn’t know how to do this until an article about the National Eczema Association (NEA) came across my social media feed, which detailed ways to help people with eczema. As I read the news, all the old feelings I thought I had already been through swept away like a tornado. It made me cry.
Once I knew how public policies were made, I knew I had to share my experience.
Working with NEA allowed me to share my story with lawmakers. In 2018, I testified before the Oregon State House of Representatives with a group of providers, caregivers, and pharmacists. We talked about our inability to access care because of the paperwork put in place by insurance companies. Our goal was to remove “step therapy,” which is the process by which insurance companies require a person to try less expensive treatments before approving the treatment actually recommended and prescribed by the health care provider. .
NEA staff walked me through the process – we worked closely together. I was fully prepared for what to expect, the length of my speech and all the procedural details of how to speak in the Legislative Assembly. Once the initiative passed the House (which it passed unanimously), it went to the Oregon State Senate Health Committee.
I was extremely nervous, as we had been postponed several times, and this was the last session before their break. To my surprise, the testimony process went well; at least two of the senators had personal knowledge of eczema and how it can devastate families, finances and quality of life. They were receptive and attentive during my testimony and their interest validated our efforts.
Advocacy is not as difficult as some might think
Many people believe there is more to advocacy, but it is mostly about sharing your experience, how it has 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 anyone who has ever been denied access to their community due to an itch, flare-up or rash that no one has taken the time to understand . Personal experiences are priceless.
Now, as an adult, my eczema is not as bad as when I was a young girl. But it’s still intimidating. I have scars from constant scratching. I also have emotional scars. It took years of hard work, but I’ve come to love my “beauty scars.” Visible and invisible scars have made me the woman I am today. That said, let’s be clear: the stress and anxiety of eczema can have a profound effect on your daily life if left unchecked.
Always remember you don’t have to fight this fight alone
It is important to know that you are not alone. There is a whole community of people in this fight to make drugs more affordable. And remember: taking care of your mental health is also important. Eczema can cause a lot of anxiety, depression, and even suicidal thoughts when you feel isolated and alone. But that’s just not true: YOU ARE NOT ALONE. Don’t believe negative self-talk. The path to finding what works for you starts with a simple hello! Go ahead and reach out to the eczema community – I promise it will be worth it.
The author Traciee Thomas is an ambassador for the NEA. Learn more and join NEA Ambassadors.