Why Fighting for Access to Medication Is More Than ‘Adulting’

When I was first diagnosed with Crohn’s disease it seemed like every minor misstep upset me. Going somewhere and not being able to eat the food triggered a breakdown. The mere thought of having to do my own shots brought tears to my eyes. Dealing with insurance and pharmacies always sent me down a dark mental path. To me, the frustrating process of having to fight for my medication always served as the biggest reminder that Crohn’s disease is chronic.

I was 20 years old when I was first diagnosed, but even at 20 I could see through the façade. It was clear to me immediately how insurance and pharmaceutical companies try to take advantage of patients. Medication prices are increased out of the blue, or medicine is withheld completely for unexplainable reasons.

At 23 years old, I thought I was an expert at having to deal with the roadblocks Crohn’s disease threw at me. Until I pulled up to the pharmacy drive-thru window and was told my medication was $65 instead of $5. The reason? The assistance program I was enrolled in on top of my insurance was suddenly missing from my file.

I had to take my medication that day, so I had no choice but to pay for it and deal with the issue later. I called the assistance program and they explained that error should never happen. I was transferred to the pharmacy’s customer service number. A woman told me the assistance program information was nowhere to be found. I asked why and explained that it had been in my file for a year without a problem.

“Well it probably expired after it hit the one-year mark,” the woman said.

“If that was true, it would have expired last October. It’s July,” I deadpanned. “And it never expires.” For a second she was silent, not answering my rebuttal. “Can you just stop lying and return the money that is owed to me?” I asked.

Immediately, she agreed to transfer me to the billing department and apologized for the mistake. Even once it was fixed, I sat in my car for a few minutes to try and collect myself. I buried my face in my hands and let out the sob I had been choking back for the past 30 minutes. Despite how confident I sounded on the phone, the stress of the interaction broke me.

In the years since my Crohn’s disease diagnosis, my pharmacy ran out of my medication, and insurance denied the medication my doctor prescribed twice. Another insurance company took weeks to authorize a prescription only to try and change the medication type once it was approved, forcing me to stay on my parent’s plan. Nothing about that phone call was new, but that didn’t make it easy.

A few hours later, I felt a bit guilty for the harsh way I treated the woman. It most likely wasn’t her fault; she was just doing her job. The moment of guilt quickly faded when I wondered what happened to people who were not as assertive as me. Did companies continue to take advantage until they caught on? Was their battle to get the medication even more difficult?

Over a year later, my pharmacy delayed my prescription’s delivery. There were still a couple of weeks until I needed to take it, so I shrugged it off. Except then it was delayed, again, and again I called and apparently the pharmacy was waiting on insurance approval. The woman I spoke to said she would try to expedite the process so I could receive my medication the day after I needed it.

When I received the email notification that it was delayed again, I called back. The person on the phone told me it was actually my doctor the pharmacy was waiting on. For weeks, my doctor allegedly had been ignoring the prior authorization forms. I called my doctor’s office and explained the situation.

“Yeah, that’s a lie,” the nurse said bluntly. “We haven’t received anything.” She then asked for the pharmacy’s phone number and said she would take care of it. Within a few hours, she called back and confirmed it was done.

I called the pharmacy back the next morning and asked for a status update. The woman on the line said they were still waiting for my doctor. When I said I had spoken to my doctor’s office twice in the past 24 hours and that the forms were sent, she put me on hold.

“Yes, so…” she said once she returned. “We did receive the forms this morning.”

“They sent them yesterday,” I interrupted. “But continue.”

After weeks of back and forth, I finally got my medication three days after I was supposed to inject it. I hoped that would be the end of it, at least for a while. But a few months, later I found myself faced with a similar dilemma again.

As I talked to my mom on the phone, she lamented at how fun “adulting” was. In the background, my dad made a joke about Bernie Sanders. I hung up on them and slammed my phone down on the couch, bursting into tears.

Fighting with insurance and pharmacies for access to medication you need is not just “adulting.” It’s surviving. People with chronic illnesses and preexisting conditions, no matter their age, must explain why they deserve to live a full life over and over again. It’s a never-ending and dehumanizing battle we shouldn’t have to fight.