As a physical therapist, I’m used to advocating for my patients, but I never thought I’d have to advocate for myself. That changed on November 13, 2017. I was on vacation in the Dominican Republic with my husband, twin sister, and best friend when I suddenly had a seizure. I went to a hospital in Punta Cana, where the staff wanted to transfer me to a facility with an MRI but at that point, I just wanted to go home.
Thanks to the maneuvering of my sister and best friend, I was able to catch a flight to Philadelphia and went straight to the University of Pennsylvania, where, after undergoing testing, I was diagnosed with a brain tumor. I was in shock.
One month later, I had the tumor removed. When I first woke up from surgery, I had almost full right sided neglect, meaning I had basically no awareness on the right side of my body. Although my leg came back quickly, my hand took longer. I couldn’t even hold a pen for several weeks.
My neurosurgeon informed me that he was able to successfully remove 90-95 percent of the tumor. He then gave me the option to either undergo more surgery or chemotherapy and radiation. I knew surgery wasn’t the right option. I didn’t want to compromise the years of work I’d done to get my doctorate degree in physical therapy, only to lose the use of my hand.
That’s when I spoke with a neuro-radiation oncologist at Penn who told me about proton therapy. I was a great candidate because I was young and had a job where I needed hand strength as well as all of my cognitive faculties, and based on the location of the tumor, there was the risk of damaging healthy tissue around it with other treatments. This seemed like my best option. However, my insurance company, Cigna, denied my request for access to the treatment.
Three appeals did not change Cigna’s decision. As someone who works in healthcare, I knew I had one last option: a third-party external review not related to Cigna. By law, once an external review is conducted, the insurance company MUST comply with their findings. I drafted a letter of medical necessity to accompany my doctor’s paperwork and it was sent to the external review board. Upon review, they determined that my case was medically necessary, and Cigna had to comply.
My proton treatments were supposed to start in early February 2018 but because of this fight with Cigna, they didn’t begin until March 8. While this process dragged on, my cancer only grew.
I finished treatment in mid-April and I’m back to work part-time. I’m still in speech therapy and dealing with side effects from chemotherapy. If I’d had standard radiation, I think I would’ve had a much harder time getting back to work, and I don’t believe my hand would be as strong as it is today.
I want to tell other patients in my position that it may be frustrating, but you can appeal your insurer’s decision multiple times and you have the right to an external appeal. Fighting my denial and receiving proton therapy is what got me on the path back to health.