Advocating for Your Loved One’s Health
Categories: Being a Caregiver, Living with Brain Injury
By Carrie Mosher, Sales Manager, Brain Injury Association of America
“Appealing would be a waste of your time.” These were the words my brother’s neurologist used when my family asked if we should fight the denial of a test he needed. “There is no point in fighting the insurance company,” he continued, “you can’t win. So don’t even bother.”
As my mom, dad, brother, and I gathered our things and left the doctor’s office, I had a different idea. If my brother could secure the test, there was a chance his health – and his life – would significantly improve. Even if I lost the appeal, and I most likely would, wouldn’t it be a worthwhile thing to do? As we drove home that afternoon ten years ago, I said to my family, “We should fight this. That neurologist is wrong. I can’t think of a better use of our time.”
My brother, Greg, was diagnosed with epilepsy in the first years of his life. He has experienced nearly every type of seizure there is and has been prescribed all types of anti-seizure medication. No medication controlled his seizures completely and many of them came with horrible side effects. In his late teens, Greg was outside on the street hitting baseballs with some friends when a seizure struck without warning. He fell backward and slammed his head onto the pavement, causing him to sustain a severe traumatic brain injury.
Greg had always been a medical mystery. He tried holistic treatments, followed various diets, and traveled to many doctors. None of these resulted in seizure freedom. Unexpectedly, a new opportunity opened up – Greg learned that he might be a candidate for brain surgery. If the area of his brain producing seizures could be located, it might be possible to have it removed. This would put an end to the seizures he had been dealing with for decades.
As you can imagine, before a person has brain surgery, many tests need to be completed. One of them was a Magnetoencephalography (MEG) scan, used to produce a magnetic source image (MSI) to pinpoint the source of seizures. It was one of the last tests he needed, and our family was devastated after hearing of the insurance denial.
I found an ally in Patti Quint, B.S. (R.T.), clinical coordinator at the MEG Lab at Scripps Green Hospital in La Jolla, California, where Greg was to have his scan. Patti gave me the tools to push forward. She mentioned she would help me contact the state of California Department of Insurance requesting an independent medical review (IMR). I needed to submit a letter describing the need and Greg’s medical history. Patti would also submit information about the long-term costs of epilepsy versus a successful neurosurgery, the American Academy of Neurology’s recent policy, Medicare coverage policies, and relevant medical journal articles.
I began creating a spreadsheet of all combinations of medicines Greg had taken over the past 30 years. Organizing it was overwhelming. My family and I became investigators, searching the internet for any relevant information that could back up our case. Once Patti submitted to the state, we waited. We were told it could take months – and it did. Not surprisingly, the follow up with the state of California was a nightmare. Phone calls went unreturned. When I could get through, I was sent from one person to the next.
Even if no one ever got back to me, I knew the effort was worth my time. My brother is one of my best friends. Just when I had accepted I might never get an answer, my phone rang. Patti was calling to let me know Greg’s MEG test had been approved by the state. The insurance would have to pay for it! After doing a celebratory dance in my living room, I picked up the phone again. I called the neurologist and let him know I had appealed to the state and won, making sure to mention that the fight was time very well spent.
Greg’s MEG test revealed that he was not a good candidate for brain surgery because his seizures had several points of origin in his brain. Despite this disappointing discovery, I learned a very important lesson – that one can fight the system and prevail, and that the effort to receive better care is always worth it.
This article originally appeared in Volume 13, Issue 2 of THE Challenge! published in 2019.