June 7: Day 7

Written 31 minutes ago

When Dr. Karwal described to us the steps: get the drug, take the drug, I really did not imagine that something so seemingly simple could immediately become so complex.

By the end of the day Wednesday our nurse told me Mom had been approved to take the drug. I was then told I'd receive a call from the drug company. 

I called the drug company proactively Thursday first thing. They told me the drug would come from Walgreens Specialty Pharmacies, but that someone else from the drug company would be calling me. Then, they told me someone from the pharmacy would also be calling me.  

Fast forward to this morning. Still no calls, so I started calling. I have now been on the phone since 8:30 am chasing people around and needless to say, I am still not officially at step one. 

I am grateful to Sheri Schmit, a pharmacist friend for taking time from her day to explain to me this process and provide some invaluable tips. She undoubtedly saved me from throwing my phone into the wall in frustration.  

At one point someone told me I needed to sign Mom up for Medicare. She's not old enough for Medicare. I've sent financial documents, retirement documents, and all the while I'm begging these people like a crazy person to take my credit card number and just send us the drug. Two have literally laughed at the suggestion. 

After talking with the third rep in as many calls it appears that they had a major mistake in their database about what the insurance actually covers. Someone recorded a $3,000 maximum annual coverage versus a $3,000 maximum out of pocket. Slight difference, and likely hence, their reasons for wanting all sorts of financial assistance documentation filed. And since someone will undoubtedly ask, no, you cannot ask to waive this part of the process. I already tried that too.

I believe I finally have the correct information in their database for insurance so again, I wait for a call. 

And I still don't have the drug.