I am still confused by the inconsistency and illogical practices of insurance companies. As we travel to Ohio to see the jaw specialist that dedicates his practice to people with jaw issues related to Ehlers-Danlos, I am still reeling from the insurance company’s decision concerning coverage for a mouth guard that could prevent surgery.
Since two life-saving neck fusions, I have had to deal with a jaw that slips right out of position into full dislocation, from one bite of food. Since the second fusion, the situation has gotten so much worse and has meant having to puree many meals to be able to live with less pain for the rest of the day. So, with encouragement from my manual PT, we finally broke down and made the plans to visit the person most skilled to help me to see if I would be a candidate for a mouth guard that might help relieve the problems. Having already dealt with twenty-four surgeries, I immediately called my insurance nurse in RI to share the upcoming appointment to see what they needed from the office for coverage. I did all that was required, submitted the codes for the mouth guard that would be custom made for me and waited for the response.
To my dismay, the call came back that despite my nurse even talking with the head of the company, there would be no coverage at all since the code did not match the code, they cover which is meant to protect from grinding. Not only do I grind, but I also have the jaw dislocated. My own dentist wanted to fit me for that mouth guard to help stop the grinding but felt he knew too little about my condition and thus decided not to take a chance on creating a guard that might make the jaw even worse.
So, let’s see, if I were calling my insurance to say I was choosing surgery, it would be covered, but since I was choosing the safer and much less expensive alternative, there would be no reimbursement? Where is the logic to this decision? I am trying to be safe and prevent more surgery and they don’t see the value in this since the code doesn’t match? Trust me, I am not running off to take on more surgery due to their decision but I am also not keeping my mouth shut. Their policy defies common sense and acceptable medical practice. There is no logical explanation forthcoming to support a policy which is not in the interest of the patient first and foremost. However, it is clear that this policy does not appear to be in the interest of the insurance company.
When I was finally diagnosed with EDS at the age of fifty-four, the researchers in the NIH study I was accepted into, suggested that I see a neurologist in Long Island who specialized in the condition. They suspected I needed surgeries and wanted me in the right hands. They were attempting to save me from failed surgeries by encouraging to put me in the hands of the individual most capable of helping me. When I met with the doctor, it was clear to him I needed a tethered cord release and in time, also the neck fusions. When I applied to my insurance, I initially got a rejection for coverage and was told to turn to a RI neurologist for help. I knew from my education that this could be deadly so instead pursued working on an appeal. When they received a letter from the NIH research doctors, I suddenly received a letter stating that I had full coverage to have the surgery along with a full year of coverage after if there was any needed follow up. In this case, I was very lucky to be part of the research study and have their support in writing for the right surgeon to do the work. If I had followed the initial directive of the company, there is a strong possibility I would not be sitting here writing this.
I wish insurance companies would add a human element to their decisions, particularly when dealing with rarer conditions. The best patient care will not be achieved when the primary motivation is economic. Patients die every day from improper and inappropriate care. A great deal of these horrific misfortunes could be avoided by following the direction of knowledgeable doctors and patients. We should be covered by the right doctors, not by a code. We are all different and need these differences to be respected and considered.
It is tough enough to cope with the constant issues that have to be addressed with chronic medical issues, but it sure would help if one would not make you jump through hoops to get the help needed. Lately, more than ever, life seems to be about one making the buck, saving the buck and not logically listening and considering the safest way to accomplish the help needed. I need to eat, chew and live with less jaw pain. I have help to consider trying, yet the financial obstacles have made us put off booking for a year for taking this trip on. But the decision was made and we are going to meet with him and hope I can be a candidate for a mouth guard to help hold my jaw in position and help improve eating and quality of life. It would have been nice to not to have to beg for help financially and be listened to. I don’t know about you but this process only adds more stress to life and makes me feel guilty to have to use our dwindling retirement money to make this happen.
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.