Summary:
Patient advocate and cancer warrior, Megan-Claire Chase, explains her experiences with dealing with insurance issues after a diagnosis of cancer. She highlights challenges having testing covered, difficulties of being an AYA (young adult) patient, and strategies to communicate with doctors and advocate for yourself. Her message is clear: you have a right as a patient to appeal insurance decisions, along with your medical team, to advocate for the care you need, although this is not always easy or straightforward.
I’ve always been aware of what the term pre-existing conditions meant when discussing health insurance. I never realized that term would become a permanent mark on my health record. Ever since getting breast cancer, I feel like every nurse and doctor’s note, prescription, and chart has my initials with a Scarlet C for cancer instead of a Scarlet A.
Navigating health insurance once you receive a cancer diagnosis becomes extremely complex. The visceral stress from opening the mailbox and seeing multiple billing statements and invoices almost daily during active treatment would wear on me. I never thought health insurance could deny a cancer patient any test or medication, whether they were in active or post treatment.
Tests
I know many patients have felt the frustration of having a test or procedure denied by their health insurance company because they do not deem it as medically necessary. I find it infuriating that someone without a medical background is making life and death determinations about my health based on company costs and not me as the patient.
Since I was diagnosed under 40 years old with Stage IIA Invasive Lobular breast cancer in September of 2015, I assumed all tests ordered by my medical team would be approved without question for the remainder of my life. After all, with there being so many unknowns in the world of cancer treatments, I naively thought my health insurance would see that history and other pre-existing conditions and see the seriousness of my case.
It has been a harsh reality discovering there is no humanizing the patient where health insurance is concerned. When my medical team orders certain tests for me, I have consistently been told the following by health insurance:
“There is no medical necessity for this test.”
“The patient is too young to need this type of test.”
Appeals
Now that I am four years post-cancer, I continue to have health issues stemming from chemotherapy and radiation treatments and multiple surgeries. The permanent side effects have continued to affect my quality of life. Because of that, I currently have a lower back issue that has been getting worse for the past few years.
Once I got a new primary physician, I explained how previous doctors were dismissing my back pain as part of my healing from the hysterectomy and oophorectomy I had back in 2017. I knew something wasn’t right on the left side of my lower back but wasn’t being heard. I was elated when my new primary agreed and scheduled a CT scan.
I learned early on to trust my gut when I have pain and to keep pushing until a doctor takes me seriously. When the results showed I had a herniated disc, a tear near the nerve, degenerative arthritis, and two lesions on my spine that appeared to be benign, I felt validated. All these years of pain was not all in my head. It was real. Of course, what concerned my primary and me were the two sclerotic lesions on my spine because at that time I didn’t have a history to reference. Neither she nor I liked the language “likely benign,” so she notified my oncologist who agreed with that thought as well.
It was great to hear them discussing options while I was in the room. They agreed that my primary would order an MRI with contrast so we could clearly see the lesions and confirm if they were officially benign or not. After all, no one wants to go off “likely benign.” While it made sense to us, my health insurance at that time disagreed and denied the request. They were satisfied with the CT scans “likely benign” scenario.
My insurance denied the MRI request two more times. It’s important for patients to know that you can have your medical team appeal any insurance decisions. My oncologist spends an hour every single day appealing insurance decisions on his patients’ behalf. Though I was frustrated, he said this is how the game is played to get the tests needed, which is unfortunate and not fair.
Peer-to-Peer Discussion
After that third appeal from my oncologist, the insurance company stated they would need a peer-to-peer discussion. It was my first time hearing this term. The insurance company scheduled a call with one of their doctors to speak with my oncologist to discuss peer-to-peer as to why this MRI is medically necessary.
Why didn’t the insurance company suggest this after the second appeal? Why did it have to get to three appeals before they decided to speak with my oncologist?
The fear of what could happen to the body while fighting with insurance decisions causes so much undue stress on the patient and the doctor and their team. My oncologist said he has never lost an appeal. He knew, in the end, he could get the insurance company to approve the MRI needed.
So, after four weeks of endless calls and letters appealing the three insurance denials, they finally approved my oncologist’s request for the MRI of my spine. Instead of insurance approving it in December when I had already reached my deductible and out of pocket expense, it was approved in January where I had to pay 80% of the cost. Though the two lesions were officially concluded to be benign, sclerotic metastatic disease can have a similar appearance, so these lesions on my spine must be monitored to make sure there is no progression.
Know your rights
If your health insurance denies a test, coverage of medication, or even a bill, know it is your right as a patient to have your medical team appeal the decision. While it is stressful, your medical team is fully prepared with the ability to fight on your behalf. You don’t have to do it all by yourself, but it is important to select physicians you trust to advocate persistently on your behalf.
Here are some excellent resources I recommend to help you conquer any health insurance issues and ways to advocate for yourself. After all, knowledge is power.
Cancer and Careers: Conquering Insurance Issues and Problems
About the author:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.