Most of the hardest parts of my chronic illness have been struggling to access care. That’s what crushes me. It doesn’t have to be like this.

In 2017, the online pharmacy my health insurance forces me to use failed to deliver a refrigerated, extremely expensive med... 1/ https://twitter.com/ailahoss/status/1289764509989474304

The online pharmacy required me to be home all day to receive the med and would not give me a delivery window. I was in school and couldn’t miss classes. They agreed to send it to a UPS pickup point where I could sign for it after class. 2/

I went to the UPS and they had turned the med away because they “weren’t expecting a delivery” at a UPS pickup center?? I don’t know whose fault this breakdown in communication was.

What I did know was that my insurance was unlikely to replace this 3 month supply of a vital med I needed to survive. So I’m crying in the UPS store, 60% lung function, eyes burning, out of breath walking from my car to the store.

They tell me I can drive 30 mins to the warehouse to try to find it. I’m on a clock bc the med is in a styrofoam box with an ice pack and must stay cold. I drive to the warehouse and the workers won’t help me. I start digging through the huge pile of undelivered mail.

I’m so out of breath I worry might pass out. But I’m on a downward spiral and I’m more scared of my GVHD progressing and my insurance refusing to replace this med. I found it 2 hours later.

I drove 30 minutes back to my apartment and sobbed and sobbed. I didn’t finish my homework because I’d spent 4 hours trying to get this med. Professors don’t want to accommodate because I should have planned for this (?).

If I could have had ONE of these things:
- used a local pharmacy
- trusted that my insurance would replace it
- had a delivery window to receive the med

I wouldn’t have had to go through that. And that’s just one of so many bad things. /end

Ooh forgot to tag my faves @ExpressScripts @AnthemBCBS