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MS and Daytime Minutes

By Linda Chavers —

june 5th: 87 minute phone conversation with big pharm TOUCH Tysabri (my current immunotherapy) rep Angela where i explain that my current insurance lapses june 30th, the end of my teaching contract with my employing university. i explain that i will have coverage again in august when i begin my new job…in another state. and that i just need this assistance this one time for the month of july to cover my july immunotherapy…in the state of georgia. i explained that i’m a teacher and that we don’t have 12-month contracts so while literally in between jobs i’ll be staying with people in atlanta. 87 minutes consists of holds while she runs my application for financial assistance and complimentary dose (courtesy of Biogen Idec). i’m cool, i don’t mind holding as long as it’s productive. after much back and forth she says i’ve been approved but that it looks like my Philadelphia neurologist had ended her prescribing order for me after the month of june since i would be leaving her care. without a standing prescription i am effectively out of the TOUCH program which means no drugs for me. i explain that this must be a mistake. Not to worry, says Angela, just get your doc to submit a re-authorization to us and we’ll be all set. cool, i say.

i then make my next call that afternoon to my neuro’s office and, in a rare freak event, actually reach the doctor directly, explain what happened and that she needs to send a “reauth.” i hear her typing into her computer what i presumed to be an email instructing her assistant, Ivonne, to send the form. all in all, this took another 40 minutes.


june 10th: i’ve arrived to pray, montana, officially marking my vacation.


june 11th: i call TOUCH to follow up on the financial assistance enrollment process. I tell the rep, Diane, who i am, my birthdate, and explain my current situation. She says they’ve no record of receiving a reauth. i call the neuro’s office and leave a message with my neuro’s office voicemail that i still need the reauth sent in and to please do so immediately as this whole enrollment, etc process can be very time-consuming and i certainly don’t want to jeopardize the timeframe. i also send an email to my neuro, her nurse, and the assistant Ivonne stating the same. always have a paper trail.


june 12th: i get a courtesy text on my cell phone that i’ve exceeded my monthly minutes by 30% over the allotted amount.


june 13th: i call TOUCH to follow up. I tell the rep, Alison, who i am, my birthdate, and explain my current situation. Alison says there’s no record of receiving a reauth. i call the neuros office and leave more pleading emails. i also send another email to her office.

you’ve danced this dance before, i say, this will get resolved. i try to vacation.


june 16th, 6am mountain time: i wake up at 6am because its 8am on the east coast and the TOUCH lines open up at 8:30am. i call on the dot. I tell the rep, Rebecca, who i am, my birthdate, and explain my current situation. Rebecca tells me that there’s no record of a reauth. i call neuro’s office and it only rings. i glance at the clock, its 7am so its 9am there. at 730 mountain time, 930 eastern, i ring the neuro’s office again. i don’t reach her or her assistant directly but i do reach the front desk who transfer me to her assistant’s line. it rings once and then goes to voicemail. i leave another pleading message and i send another email.

june 16th, 8am mountain time, 10am eastern: i receive an email from Ivonne: “It was sent over twice last week. I’ll resend it again today.” i call TOUCH back. i tell the rep, Sam, who i am, my birthdate, and explain my current situation. Sam says they’ve received it and can get started on the enrollment for assistance. great, i say. you’ll hear from your case manager who’ll walk you through the screening process for assistance, sam says. i don’t understand, one of your reps last week told me i was already enrolled. the last step was getting this reauthorization, i said. when was this conversation? sam asks. i can’t recall the date offhand but don’t you have a record of it. the rep told me she was putting in detailed notes about this, i huffed. sam cannot find anything, says there’s no record of any financial assistance application. sam reassures me that my case manager will handle this. i say ok. i’m hungry and have errands sand don’t want this to become my day.

june 16th, 3:30pm mountain time, 5:30pm eastern time: i receive an email from Galvin, my case manager saying to give them a call at my earliest convenience to get the screening process for enrollment started. that by doing so, we can easily then locate an infusion center in atlanta for my immunotherapy. i sighed. my stomach growled but i wanted to get this over with. i call TOUCH and speak with Denise. I tell Denise who I am, my birthdate and my situation. I told her everything that’s occurred up through this day. Denise saw that my application had been opened but that they could not do anything until a location in atlanta was designated. i said that that was the entire opposite of what my case manager told me via email. Denise attempted to transfer me to Galvin but he had left for the day. i explain that i’m confused i have to apply for anything again as i thought i did all that two weeks ago. Again, Denise could not find any record of what i was talking about. Tears are welling up in my eyes. i want a cigarette. I’m put on hold for 15 minutes, during which I turn on a recording app on my phone. i notice my hand is shaking more than usual. i want a cigarette badly. Denise doesn’t come back but a woman named Sheila does from a different department that handles the “assistance” part not the “complimentary dose” part (even if you get the drug for free there’s still the medicine administration that costs and these are handled separately). Sheila explains more things to me, things i’m too tired to outline here but she does stress to me that my case manager is the one who has to locate an infusion center in atlanta and then get this assistance rolling. I send an email to Galvin that it might work better if he told me when to call him. when we finally hang up it’s 6pm and Sheila says she will forward an “urgent” note to Galvin for him to see first thing in the morning.

i’ve already set my alarm for 6am tomorrow morning. mountain time.

Dr. Linda Chavers-Multiple Sclerosis

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