Fail First Fails Patients

I’ve fought with pretty much every major insurance company over the same medication since 2011.

I have Crohn’s disease, and the drug that keeps me healthy is expensive.

But every time I switch insurance, I’m told I need to fail cheaper therapies first.

It doesn’t matter that I’ve had Crohn’s for 23 years without any surgeries (~80% of Crohnies have had a disease-related surgery by the 20-year mark)

Or that I’m in complete remission, and have been for well over a decade.

Or that my last scope showed almost no evidence of disease for the first time ever.

Nope, I’m still expected to fail other therapies first.

What does that failure look like?

• Pain and less productivity, for starters. It’s hard to do cool stuff when you’re locked in a bathroom.

• Scarring that never fully heals.

• Decreased absorption of nutrients (this can lead to early dementia- fun!)

• Surgical repair, which is not only expensive but Crohn’s LOVES to attack the surgical site postoperatively.

• That aspect of Crohn’s can lead to repeated surgeries and short gut syndrome, which is why many try to avoid that first surgery as much as possible.

• Way less hiking days.

Not to mention, failure of one of those biologics in the same class (the cheaper therapy has a higher rate of antibody creation, which is what failure generally refers to here) means the patient is more likely to fail future biologics in the same class.

But each time, I usually have to go through more than one round of appeals.

Usually I’ll argue that the larger molecule of my medication is less able to cross the placental barrier and harm a fetus. That tends to get the medication approved, but it usually takes months.

This is where I’ll grumble about women’s bodies only being protected when their fertility is at risk.

But here’s what really makes me upset- most folks don’t know they can fight, or don’t have the time/energy/resources to do so.

One of my favorite family members passed away recently after a long and arduous battle with Crohn’s. She died younger than she should have.

I have the benefit of time and technology that she did not have, but I’m also wildly lucky that I have never had to fail a therapy to get what my doctor and I decided would be the best care.

Prior authorization and step therapy are supposed to control costs, but our bodies pay the bill.

Broken links. Hidden forms. Unclear timelines. Every representative you talk to gives different information.

If you ever need to fight for medication approval, I know their tricks. Reach out, I’m happy to help.

I use the phrase “hiking days” for times when my Crohn’s feels stable. Bathrooms on the trail are few and far between!