A Week in the Life: Managing Rheumatoid Arthritis

I have spent most of this week on the phone with various people, organizations, and hold music, all with one goal: to get my disease modifying medication for rheumatoid arthritis. Here is a week in the life…

Monday:

Me, calling Medicare part D company: Hello, I was told to call once I had prior authorization for XXX medication in order to apply for a tier reduction.

Part d: Yes, I’ll be happy to submit that for you. [asks several questions] Someone will contact you within 72 hours to let you know if it was approved. You may also want to submit an application for financial assistance with the manufacturer. [Thank God I already have one on file.]

Me: Is it possible for me to find out how much this medication costs at the current tier?

Part d: I can transfer you to our mail order pharmacy and they may be able to help you.

[hold music]

Mail order: This call may be recorded or monitored. May I please have your name, birthdate, address?

Me: [gives info, explains question]

Pharmacy: I’ll need to transfer you to our specialty pharmacy and they can help you.

[hold]

Specialty: [monitoring disclaimer; asks for identifying info]

Me: [gives info, explains question]

Pharmacy: We can’t give that info without an active prescription on file.

me: [thinks: Am I supposed to have a prescription sent to every potential pharmacy so I can price shop???] Thank you. [disconnects]

Me, calling patient assistance foundation: [ready to push lots of buttons to get to advocate]

PAF: If this is a medical emergency, hang up and dial 911.

Me: [thinks, Why would I take so much time to call you in a medical emergency, especially knowing I would have to deal with your number-punching madness???]

PAF: Para assistencia en espanol, marke el 2.

Me: Ok, don’t press 2.

PAF: If you are new to [name of PAF] or are calling to speak with a patient assistence advocate, press 3.

Me: [frantically presses 3, because I may fall asleep at any second]

PAF: Ok, just a few more questions.

Me: [inwardly screaming, NO MORE QUESTIONS, NO MORE BUTTONS!]

PAF: For [my medication] press 1…

Me: [presses 1] Please please please give me a human!!!

PAF: Your call is very important to us. All patient assistance counselors are assisting other patients. [start piano music which is nice and soft but guaranteed to keep me awake] Did you know that you can access program information and forms at our web site?

Me: If I wanted that info I would have gone to your web site instead of calling and sitting on hold for a thousand years!

PAF: [more piano music] Thank you for continuing to hold. your call is very important to us…

Me: I can see it is.

PAF: Your current wait time is 735 minutes. If you would like us to call you back…

Me: [hangs up] By the time they call back I would forget my question!

Tuesday morning:

[Phone rings, I answer]

Part D: We are calling to let you know that your tier reduction application was denied.

Me: Ok, thank you. [suppising it is useless to ask why]

Me: [calls doctor’s office to request a prescription be sent to the specialty pharmacy.

Doctor’s nurse: I sent it on this date and this date.

Me: Can you give me the number to the pharmacy?

Nurse: I can transfer you there.

[hold]

Pharmacy: [monitoring disclaimer, asks for my info]

Me: [gives info, asks about prescription]

Pharmacy: We don’t have that. We only have YYY prescription [from another doctor].

Me: Thank you. [Loses it while hanging up.

Wednesday morning, after sleepless night due to pain]

Me [calling PAF]: It’s 8:00. Maybe the wait time won’t be so bad. [repeats all the motions from Monday]

PAF [after I press all the numbers]: Your wait time is 1 minute.

Me: [celebrates]

PAF [20 minutes later]: Thank you for continuing to hold… [The same song is playing and has not restarted. Big finish seems imminent. No it’s not. Yes it is. No it’s not. Yes … wait … wait … Oh yes! There it really is, and here the song starts over! That is one really long minute! Hangs up. Calls doctor back, leaves message]

After 5:00, phone rings, I answer.

Nurse, sounding exhausted: I sent the prescription again. I don’t know why they aren’t getting it.

Me: Thank you so much. [takes pharmacy number] I also keep trying to call PAF and they are giving me very long wait times.

Nurse: [promises to try calling them herself]

Thursday:

Me: [Calls pharmacy, answers identifying questions, asks about prescription]

Pharmacy: Yes, we have that prescription. It is very expensive.

Me: How expensive?

Pharmacy: Thousands of dollars. Do you have insurance?

Me: [I have Medicare part D. It’s tier 5.

Pharmacy: I’ll transfer you to our Medicare counselor and they can help you.

[hold]

Counselor: I can take your Medicare number and help you.

Me: [gives number]
Medicare: Ok, that is processing and someone will call you.

Me: I’m trying to find out how much this medication costs.

Medicare: We will not fill your medication without letting you know how much it costs.

All of this has been written during one hour while I have, again, been sitting on the phone with PAF, listening to the never-ending piano piece punctuated by messages about my important call and where I can access program information forms.

Remember: don’t call the PAF in an emergency. You’ll still be on hold ten years after you died!

About Sarah Blake LaRose

Sarah Blake LaRose teaches Biblical Hebrew and Greek at Anderson University School of Theology and Christian Ministry in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind. In addition to her work as a professor, she provides braille transcription services specializing in ancient languages. Her research interests concern the intersection of disability, poverty, and biblical studies.

About Sarah Blake LaRose

Sarah Blake LaRose teaches Biblical Hebrew and Greek at Anderson University School of Theology and Christian Ministry in Anderson, Indiana. She is one of three blind academic scholars who received the Jacob Bolotin Award from the National Federation of the Blind in 2016 in recognition of innovative work in the field of access to biblical language texts and tools for people who are blind. In addition to her work as a professor, she provides braille transcription services specializing in ancient languages. Her research interests concern the intersection of disability, poverty, and biblical studies.

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