Beyond the many concerns and questions of being a caregiver I shared previously, I don’t have much experience dealing with the healthcare system. Lisa is quite independent and so she doesn’t often ask for my help with healthcare questions. Recently, however, we had an experience where she needed my help. Through this experience, I found myself growing as a caregiver and I didn’t even realize it at the time.
A little background. As readers may know my wife, Lisa, has MS and RA. This is not something I’d wish on anyone, but oddly enough, having more than one autoimmune disease can have a silver lining. Some years ago, Lisa began to have difficulties and researched for a more effective treatment. She learned that Rituxan, approved by the FDA for treatment of RA and non-Hodgkin’s lymphoma, had been studied for use in MS and that early published reports were quite positive.
Lisa consulted with both her rheumatologist and neurologist about switching to Rituxan. Both physicians were encouraging. Rituxan is an intravenous drug which Lisa soon discovered her health insurance company would provide far better coverage than it did her previous injections. If it worked, this treatment would offer several benefits, namely, she would only need one medication to treat both diseases, the infusions are given every 6+ months, insurance covers 90% of the cost, and the drug company picks up the out-of-pocket copay expense.
Lisa began using Rituxan in 2009 and for the first four years the billing process went as expected: the hospital billed her insurance, her insurance paid based on negotiated/contracted rates, and the hospital then billed Lisa the amount insurance said she owed. At this point Lisa would gather all the appropriate paperwork and send it to the drug company who paid the hospital. Lisa typically only had to pay a few hundred dollars left as her co-insurance responsibility. Simple, right?
In the summer of 2013, an oddity occurred between the hospital charges and insurance payments. Perhaps it was just an isolated mistake, but it meant that the hospital didn’t bill her for the 10% co-insurance. It seemed to make sense since the cost of Rituxan had dropped to the point that insurance’s 90% coverage exceeded the hospital’s total original charges.
Based on the prior year’s experience, Lisa thought a precedent had been set and therefore didn’t renew her copay coverage with the drug company. Moreover, the unused copay card she still had on hand had a 2015 expiration date on it. The bill she received this summer appeared much like last year; her insurance ‘overpaid’ the hospital as it had in 2013. But Lisa also noticed that, unlike last year, the hospital billed Lisa for the 10% of allowed charges listed on the EOB. This was an amount which came to almost $2000. Lisa tried to resolve the situation immediately. First, she called the hospital to correct the bill to no avail. She then tried to use the copay card without success. Then she called the drug company to learn that she wasn’t in the assistance program (2 programs had merged into one) and that it was too late to retroactively approve assistance for infusions that had taken place outside of the past 45 days.
I was sitting nearby and heard Lisa choke-up and begin to cry as she asked who she could contact and appeal to for help. This is where an unexpected caregiving opportunity arose. Lisa asked me if I could make the call to the number provided her. She was too emotionally upset to talk.
I knew I had to help right away. Lisa gave me the phone number for the manufacturer’s other assistance program and asked me to call. I got out my phone and dialed right away. My mindset was that we had likely missed our window of opportunity for the program, but perhaps we might be granted an exception.
I spoke with several people, but eventually did reach a case manager who was quite patient and let me explain our situation. She empathized, but indicated that the company did have a well-defined application policy in place. She told me that despite the unusual handling of the bill by the hospital, we were probably not eligible for assistance because we had not renewed the copay card by the application deadline. Nevertheless, the case manager said she would have our case reviewed by a supervisor. That was all I could ask of them, so I thanked her profusely for her help and said we would await their response.
After I hung up, I relayed what I had learned to Lisa. Her outlook visibly brightened. As she thanked me, she said that perhaps I didn’t realize it, but what I had just done was act as a caregiver to her. I was surprised and considered what she’d said. When I’d picked up the phone, I hadn’t thought at all about providing care. To me it was a financial matter.
But as I thought more about her remark, I realized that I had indeed provided Lisa care. My willingness to step in so that we could get help with our case was more than just resolving a financial matter. I was supporting her with a healthcare matter, one that can be frustrating and wear down many patients.
Our story also has a happy ending. Several days later, the case manager from the pharmaceutical company contacted us to let us know that assistance program had granted the exception and would pay Lisa’s out-of-pocket expense. Lisa was ecstatic when she heard the news. Without even realizing what I was doing, I had just served as a first-rate caregiver.