Learning that I had breast cancer that had already spread to my bones, liver and adrenal gland was overwhelming. Of course I was devastated, but immediately realized that I had to figure out what to do next. My primary care provider (PCP) suggested a large research hospital. My first thought was Mayo, but it is not a network provider for my health insurance. My PCP is a graduate of Washington University and suggested Barnes Jewish Hospital/Washington University in St. Louis, which is about 3.5 hours from my house. Barnes is not a network provider for my health insurance, but is considered tertiary – meaning my insurance might approve them if it is necessary to seek treatment beyond what in-network hospitals can provide. My PCP set up an appointment with a breast cancer oncologist and my battle with health insurance began.
My insurance company assigned me a nurse care coordinator named Heather. You know how Mr. Rogers said to look for the helpers? Heather is definitely one of those. She monitors my symptoms and side effects and helps me navigate the health care system. As a former oncology nurse, she understands the medications and treatments and tests. I have learned so much about health insurance from her including some tricks to work with the claims department.
I learned that my insurance had approved my treatment at Barnes as I was driving down there for my first appointment. (I took a leap of faith and scheduled the first available appointment and hoped things would work out.) Since my diagnosis was de novo (stage 4 from the start), my type of breast cancer is very aggressive, and I had extensive metastasis (spread), my insurance agrees that I need to be treated at a larger hospital than anything closer to me. This means that they allow my treatment there to be considered in-network (covered at a higher rate with a lower deductible), even though Barnes is technically an out-of-network provider.
You would think, then, that I wouldn’t have any further problems with that decision, but I do. Frequently claims are processed as out-of-network. That is when the battle begins to get it changed to in-network. I always try to work with customer service myself first and then get help from Heather if that doesn’t work. Sometimes she can get it corrected herself. Other times we involve my PCP’s office for assistance. Sometimes I have to call my oncology nurse coordinator at Wash U for some help. I log into the online portal for my health insurance every day to monitor my claims. I have time scheduled in my google calendar twice a week to make calls about any problems.
I have become an expert at health insurance terms and understanding all the details of my policy. Next Tuesday is a huge day for me in St. Louis. I will have: brain MRI, bone scan, abdomen/chest CT scan, neurology appointment, radiology appointment. I spent time on the phone yesterday to verify that all procedures had been authorized as in-network. They had not, so I made calls to get that corrected and was able to verify that the correct authorization was in place late this afternoon. I also had to make sure the neurologist and radiologist I will see had been referred by my PCP. I was able to verify that earlier this week. When the claims are filed, I will monitor their progress in the online portal to make sure they keep their in-network status. I have a large binder that I use to track all this, with very detailed notes for each phone call.
Is it worth the hassle? Absolutely! I have complete confidence in my oncology team at Barnes/Wash U. By being vigilant in tracking my claims, I am able to ensue that I only spend the annual out-of-pocket maximum. That is a 5-figure number and a scary amount to pay annually, but one-fourth of what I would pay if any of the claims are considered out-of-network. Thanks to the Affordable Care Act, my policy has an out of pocket annual maximum and no lifetime limitation. Each treatment I receive has a claim cost around $40,000, not to mention the cost of the scans. I am grateful for the health insurance I have and I remind myself of that when I am weary from working full-time with stage 4 cancer. It is absurd that health insurance is tied to employment in our country. It is absurd that anyone with terminal cancer who qualifies for social security disability has to keep working in order to keep health insurance. I should be on disability and focusing on my health and spending time with my family, not working full time to keep myself alive and my family financially stable. I believe that working full time is lessening my survival time. But I also believe that not having quality health insurance and the money to pay for care at a fantastic research hospital would also lessen my survival time. It sure seems like we should be doing this in a better way in our country.