When Cancer Care Becomes a Logistical Balancing Act

Colleen Mabasa, a patient advocate with multiple myeloma, sat down with CURE for an interview to share her experience navigating CAR-T cell therapy beyond the clinical aspects of treatment.

Although she felt well prepared medically, Mabasa discussed the significant logistical, financial and caregiving challenges that emerged, including housing costs, insurance complexities and coordinating responsibilities for her family. She also reflected on the strategies that helped her cope, from breaking overwhelming tasks into manageable steps to learning how to accept and direct support from loved ones.

Transcript

You were medically prepared for CAR-T cell therapy, but what were some of the unexpected logistical, financial and caregiving challenges you faced, and how did you find ways to manage them throughout the process?

Clinically, I was so prepared. I knew what I was getting, what it entailed and what my disease burden was like. I understood it clinically, so I was all set. The biggest challenges were more logistical. For example, I did not actually get referred to the social worker in the CAR-T program until it was a done deal. Consequently, there was a question of where I was going to stay. We are a very middle-class family; we have the kind of money where we can say, "I don't feel like cooking, let's get pizza tonight," but we did not have "let’s stay in New York City for five weeks in an Airbnb" kind of money. It was a major reality check for us: could we even afford this? Is this something we could actually make happen? That was a huge concern.

I also did not understand insurance. I thought once I received prior approval for the actual procedure, it was going to be one bill. I did not realize that every time a doctor saw me, it was a different bill and a different copay. I was not prepared for the volume of invoices coming my way, nor for the task of figuring out why one was accepted while another was not. I had to investigate whether a doctor used the wrong NPI number or the wrong address; a lot of times, these were just human errors because there were so many. It was really nerve-wracking.

To give a perfect example, they approved and paid for my catheter but then denied the T-cell collection. Why would I need a catheter if I wasn't doing a T-cell collection? The whole purpose of the catheter was to collect the T-cells, so we spent a lot of time trying to navigate what was wrong with that invoice.

One thing I realized is that when you look at the situation as a whole, it seems overwhelming and daunting. However, once I broke it down piece by piece, it became more manageable. I had a night where I just did a "brain dump." I asked myself: who am I responsible for? I am responsible for my son, a disabled sister and an elderly mom. What am I responsible for regarding my house? I figured out my financial obligations and home maintenance needs. I did this for work and every other area of my life, and then I spent about 20 minutes each day working on those tasks.

For instance, regarding my son; I love my husband to death, but if you asked him who our son’s pediatrician is, I honestly don’t know if he would even know what a pediatrician is. He would never be able to tell you, nor does he know the difference between an orthodontist and a dentist because he doesn't schedule those appointments. I had to make sure all those contacts were listed on the fridge in case of an emergency, plan for visits after I was done, and figure out who would take him where. I did it a little bit at a time, and when you do it bit by bit, it isn't so overwhelming.

Another thing is that people are going to want to help you. Take the help. If you can be specific about what you need, it helps even more. One of the greatest gifts was given to me by my husband — I wasn't feeling great after I got back, but he took my son and a friend snowboarding for the day. The weather was miserable and freezing, but he stayed from morning until closing time. That was something I didn't have the capacity to do, but I really wanted it for my son. Seeing him have that normal experience made me feel like a good mom, and it was such a gift. When people offer help, use them and try to be specific.

People can participate in different ways. For example, most Epic systems now allow you to invite a caregiver. If you have a child living in a different state, you can invite them to view your chart. They can look at it ahead of time and say, "Hey Mom, hey Dad, these are the things I’d like you to ask the doctor." They can be part of the experience because they can read the notes from previous visits. Whatever the method, try to get people involved as much as possible.

Transcript has been edited for clarity and conciseness.

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