Advocating for Rheumatoid Arthritis: Being a Voice in Court
The Merriam-Webster Dictionary defines being an advocate as, “one who supports or promotes the interests of a cause or group.”1 The day we were personally diagnosed with RA or someone close to us was diagnosed, we became an advocate for auto-immune disorders. Advocating on this journey is not easy, but necessary.
RA severely impacted my dental health
RA is a systemic disease that affects our joints and every organ system, including our mouth and oral cavity. Since my diagnosis in 2004, I have personally seen a decline in my dental health, despite amazing home care.
I have taken several RA medications that have side effects of dry mouth. The dry mouth for me led to increased cavities and decline. Additionally, I experience inflammation in my gums and have seen a decrease in my range of motion in my jaw. Over the 18 years since diagnosis, I estimate that I have personally spent tens of thousands of dollars to repair and restore my teeth.
Countless insurance denials
In the years 2018-2021, I received countless denials for dental work. In this period, my dental health significantly decreased. I have had to perform abdominal thrusts (Heimlich maneuver) on myself twice in those 3 years for choking events. However, despite extensive medical evidence, denials continued.
Time to stand up for myself
In February 2022, I decided that I was going to defend my rights and advocate. Once I exhausted my appeals with the insurance company, I was then able to file for a hearing and have my case heard in state court. I attempted to obtain a lawyer from a free legal program, however, I was unsuccessful in doing so. Unfortunately, there is a high need for representation in medical cases and only so many resources.
In June of 2022, after 5 months of constant and continual stall tactics by the dental insurance company, my case was heard. I spent hundreds of dollars in copies, mailings, etc., and the countless number of hours preparing evidence. This process was not an easy one.
Taking the insurance company to court
I knew from the start that it would be an uphill battle. I was taking a state-funded insurance company to state court. However, it was important for me to advocate for all the countless individuals with autoimmune diseases who were experiencing a similar situation. Representing myself was one of the most emotionally exhausting hours that I’ve had, but for me, one of the most important moments in my advocacy journey.
The final decision
A couple of weeks later, a decision was mailed. Unfortunately, it was not a favorable one for me. It came down to how the state insurance code is written. When you do advocacy work, it doesn’t always have a fairy tale ending, but I truly believe that in that hour, I made a difference. I was able to educate all of those present during the court proceedings. Defending my rights, identifying cracks in the system, and being a voice to those with autoimmune diseases that are unable to get through the arduous process. It was priceless.
Never stop advocating
To all of you, never stop advocating for yourself or your loved ones. Awareness does not always mean victory at that exact moment. However, advocacy helps pave the way for individuals with disabilities in the future. Never ever give up and always remember to just keep swimming!!!
Did you have difficulty receiving a RA diagnosis?