I have a saying: “If it doesn’t make sense to you, it probably doesn’t make sense. Don’t stop until it does.” This is the story of why.
My son had just turned 11 and had played baseball in the morning. Later that day, he was diagnosed in the emergency room with fistulizing Crohn’s disease.
I tell people that being in the hospital felt like being in some parallel universe made up of sleeping chairs and changing of the guard every 12 hours, with the insurance representative hovering over our doctors, looking for any reason to discharge my son.
Two years later, no one can put my boy into remission. He has no quality of life. Our last hope is Mount Sinai, a hospital 5 states away from where we live. After testing, we’re told the only option left is Remicade, a biologic that, during the clinical trials, was responsible for the deaths of 15 children from a fast-growing form of lymphoma. No malpractice insurance would cover its use. Our physician said he had been having some success with Remicade and was willing to try. It saved my son’s life.
The hospital enrolled us in the Remicade manufacturer’s saving program. Our cost? A $5 co-pay for a $30,000 drug. Now it’s 2015, and we’re being turned away from Mount Sinai. The pharmacy benefit manager is telling us if we walk into the hospital, we can’t get his infusion. We couldn’t go through the emergency room, nor use the manufacturer’s drug saving program again, or pay cash, because we weren’t approved for the medication.
IT MADE NO SENSE. I DIDN’T STOP UNTIL IT MADE SENSE.
It took 4 months to get his Remicade infusion back, while I learned about this whole other underbelly of healthcare. My son missed an entire treatment—16 weeks instead of 8 between infusions. Not good.
Over time, painful, cyst-like wounds began appearing that no one could explain. He struggled even to walk but refused to leave college because he wanted to graduate with his friends. For 2 years I took him to specialists; we went to the emergency room 5 times in 1 semester. Everyone said the same thing—he needed to leave college, move home for a year, and have 4 separate surgeries by 3 different types of specialists. And he needed to recover between each.
THAT MADE NO SENSE. I DIDN’T STOP UNTIL IT MADE SENSE.
In the end, I figured out his disease myself. Researching at 3:00 AM, I saw an NIH grant and clinic listing all my son’s symptoms. He didn’t need surgery at all. He had hidradenitis suppurativa, a painful breakthrough disease from missing that entire infusion in 2015. The treatment? The same biologic as Crohn’s disease, Remicade, but now a larger dose.
The moral of the story: question anything and everything that you don’t understand—until it makes sense.
Sincerely,
Founder & Executive Director, The Healthcare Navigation Project