The Stress Involved in Living with a Rare Disease

By Candace Lerman

At the end of 2014, I spent four weeks undergoing chemotherapy using the drug Rituxan. However, I didn’t have cancer. I am battling a rare blood disorder called Immune Thrombocytopenia or ITP. After months of using steroids, which were destroying my body, my doctors knew we had to change direction. This set off a few weeks of absolute panic because Rituxan is not approved for treating ITP, a common problem with rare disease patients. It left me calling my insurance company sometimes up to five times a day, just to see if they would cover it.
Every time I called, I received various responses. My doctors attempted to reach out and were met with the same aggravation. The treatment would be my best shot at obtaining a close to normal life. I knew I would never be able to live like I was when I was healthy. If the treatment worked, I would be able to attend law school and gain some of the independence I lost after being diagnosed. I should have been focusing on preparing for the challenges of chemotherapy and getting myself together. There is an extreme need to be mentally sound when going through something like that. Instead, I was trying to decipher the endless black hole of medical billing and insurance regulations.
During the time that I was endlessly pursuing answers that no one seemed to have, I started having severe complications from ITP. I could no longer chase after my insurance company to get a final price on the treatment. I remember staying up a few nights the week I made my decision. It was pathetic; I had to choose between possibly putting myself into terrible debt for a chance at life and risking my health until I received an affirmative answer. I chose to go ahead with the treatment, putting my faith in my doctors and God that hopefully most of my treatments would be covered.
The treatments were hard to endure, but successful. I am glad that I went through it simply because I am now able to attend law school in the fall. However, the panic attacks started a few weeks after my last treatment. These bills began rolling in for $90,000 following each week I had an infusion. I started to get nervous, knowing I had absolutely no way of paying that off. ITP had already drained me financially, between six days in the hospital, tens of thousands of dollars in blood tests and multiple doctor visits. My savings account was abolished, and to top it off I lost my job. I started to feel hopeless again, when I should have been celebrating.
By nothing short of a miracle, my insurance provider ended up covering a portion of my treatments. I received a final notice of what I owed well over four months after I completed the treatments. I’m currently trying to budget my expenses so I can pay off the remaining debt before I start school. It made me angry that despite calling and requesting information, e-mailing supervisors and those I was told would have the answers, I waited until a final bill came to be enlightened. The stress brought on by the unknown is terrible, especially since I am already at my wit’s end trying to manage my life as a newly diagnosed rare disease patient.
My hope is that in the future, insurance companies can create the tools necessary to answer questions like mine. It is completely unnecessary for a patient who is undergoing a major health event to have to stress over unknown costs associated with treatment. The surprise bill at the end shouldn’t provide relief or panic; it should just be an expected part of the healthcare process. Patients like myself continue to strive to be informed and active within the healthcare community. We expect insurance companies to follow our lead.

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Candace Lerman is a rare-disease patient advocate in Fort Lauderdale, Florida. She has bachelor’s and master’s degrees in International Affairs from Florida State University and is currently pursing a law degree at Nova Southeastern. Candace is one of the four remaining finalists in our 2015 Costs of Care Essay Contest. She blogs about her experiences at RareCandace.com. Follow her on Twitter @RareCandace.