When you’re dealing with a rare disease, doctors can’t always tell you the best thing to do. 

“The burden of that, of making the right or wrong decision, is more on the family than on the doctors,” said Abbey Masonbrink, a pediatrician based in Kansas City. “They’re essentially giving you their best information, but it’s weak.”

Abbey’s mom, Judy Masonbrink, has a rare form of cancer, extramammary Paget’s disease. When Judy and her family learned it had spread, they faced a lot of different treatment options. Would chemotherapy work? Surgery? Could Judy get into a clinical trial?

They talked to oncologists around the country and ultimately settled on a drug called Nerlynx. It was originally designed to fight breast cancer, but targets the same genetic mutation that Judy’s cancer has. It had a 30% chance of working — but doctors thought it was their best shot.

Nerlynx, however, is super expensive. The oncologist wanted Judy to take it for a year, which would cost around $180,000, out of pocket. Insurance companies will often cover the cost of Nerlynx to treat breast cancer, but not extramammary Paget’s disease.

Judy, Abbey and their whole family decided that not getting the drug wasn’t an option. And by battling with insurance companies, pharmaceutical companies, and bureaucracy generally, they learned about the price tag that the medical system can put on a person’s life.  

This is the last episode of “This Is Uncomfortable” this year. We’re taking a break for the holidays, replaying a few of our favorite episodes and working on some new stories. Make sure you’re the first to know about new episodes by subscribing to our newsletter.