Even though Debbie Byrnes grew up with atopic dermatitis (AD), it stayed in the mild to moderate stage throughout high school, college and most of her adulthood. But when her family relocated to San Antonio, Texas, in 2004, “it was all downhill from there,” Byrnes said.
She wrestled with severe AD for more than a decade with no signs of improvement. “I was miserable. It felt like my skin was on fire. Something had to be done,” she said. That’s when Byrnes decided to become her own self-advocate. She researched treatment options online and found National Jewish Health.
After jumping through hoops with her insurance company, she was eventually approved to partake in the day program at the Denver-based academic medical research facility, where she spent eight days receiving intensive treatment and learning the ropes of wet wrap therapy.
“Then I received a phone call from a friend that changed everything,” Byrnes said. Her friend was a fellow Eczema Warrior who was participating in a clinical trial for a new biologic treatment and seeing major results. “She said, ‘I’m in the trial, and it’s really working.’ That’s when I jumped on board.
Byrnes called the treatment manufacturer relentlessly and learned there would be three clinical trial sites in San Antonio. “I was very assertive,” she said. “Then I found out which doctors’ offices were part of the clinical trial and called them every week. They kept saying, ‘We are going to call you as soon as we know something.’ But I wouldn’t give up. As soon as they were accepting people, I found the best location for me and I made an appointment.”
Byrnes was evaluated and later approved to join the clinical trial. “I was concerned I would be one of the people to receive the placebo, but not for long. I received my shots on a Monday, and by Saturday, I knew I had gotten the drug because I could feel it working. I felt differently inside—almost a peacefulness.”
The biologic treatment brought her 95 percent clearance, she said, but once the drug was approved by the FDA and released onto the market, Byrnes couldn’t get it approved by her health insurer. At the time of this interview, she was still going through the appeals process.
Byrnes offers the following advice to other aspiring self-advocates:
“I’m a firm believer that nobody’s going to look out for you like you’re going to look out for yourself. Just make it happen. You have to.”
Become your own health advocate in 7 easy steps
Understand how your health insurance works. Whether it’s Medicare, Medicaid or a private insurance policy, knowing what is and what isn’t included in your health insurance benefits will help you avoid costly, unexpected medical bills.
Research treatment options, procedures and providers. The more you know about your disease, the better off you are. But don’t rely too heavily on “Dr. Google” or the good intentions of strangers or loved ones. What helps some people could be harmful to others. The true experts are where they belong – in the medical community.
Ask your doctor questions and voice your concerns. Listen to what they have to say, but also trust your instincts. It’s OK to get a second opinion or more. Keep looking for answers until you’re confident the treatment path you’re on is the right one for you.
Keep tabs on your own medical records. Even in these tech-driven times, we can’t solely rely on electronic medical record system. Transferring medical records from doctor to doctor doesn’t always go as smoothly as we wish. Keep tabs on your own medical records by tracking medication usage, doctor appointments and disease flare-ups.
Review your medical bills for errors. A 2015 audit found that hospital bills totaling more than $10,000 contained an average error of $1,300. Always cross-check medical receipts with insurance bills as there could be erroneous calculations.
Know your rights. According to the Americans with Disabilities Act, employers with 15 or more employees must make reasonable accommodations for people with disabilities, such as rest breaks or even the ability to work from home.
Join a community of individuals with the same health condition, compare experiences and learn on each other for support. That’s one of the main reasons National Eczema Association exists – to advocate on the behalf of people with eczema. Please join us!