I knew healthcare was messed up but I legit didn’t know how messed up until it happened to me. My daughter got put on a specialty medicine because of a relatively rare kidney condition. It had to be compounded, because she is a small child but the medicine only came in adult doses.

Aetna denied coverage, stating I had to get the medicine from CVS (which is owned by the same parent company of Aetna). CVS does not compound medicine, so we couldn’t get it from them. I spent almost a full year on the phone arguing with them and around $6000 paying out of pocket before I was able to switch insurances.

I consider myself reasonable. Even in a functioning system, mistakes can happen and need to be resolved, and I spent the first month or more assuming this was just an innocent mistake. What got to me was the total lack of recourse. Day after day on the phone with people, some of whom genuinely seemed to care but could do nothing. They intentionally separate the patients from the people making decisions so that all the decision makers get is a few fields in a form, not the whole story. The people in charge are even more separated so they never have to hear anything about the people they’re screwing over. And if I couldn’t afford the extra $6000 burden, I just wouldn’t have gotten the medicine and in the best case she would have spent that year in and out of the hospital and in the worst she wouldn’t have survived the year.

I tend to think most people are decent. But the system we’ve built makes sure to separate people by impenetrable layers of bureaucracy to ensure that the decent people either can’t do anything or never know there’s a problem, while the indecent never have to be confronted with the damage they do. It’s insane.