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Phone Representative; A Part Time Job That Comes With MS

Phone Representative: A Part Time Job That Comes With MS

Let me first explain what is going on, after that I promise I have a point.

Time consuming process to refill medication

 I am really frustrated right now. Well, I have been for a while now actually. I know so many of you with Multiple Sclerosis (MS) will be able to relate to me which is a pretty unfortunate truth because this situation is really stressful and can even be emotionally draining!

OK, so, I have been on a monthly injectable medication for a little over a year now; every 4 weeks I have to call the specialty pharmacy and order a refill which is not a quick task. I dial the number, navigate the menu, wait on hold, explain to the representative that I just need to refill my medication, they tell me that they have to transfer me to another representative who handles that medication, I wait on hold some more, the next representative picks up and begins to ask me the same series of questions they have to ask every time I call (a lengthy process of “in the last 7 days have you experienced stomach pain, yellowing of the skin or eyes, difficulty breathing,” and a bunch of other questions I have slowly learned to tune out) and finally we confirm all the shipment information. Simple but time consuming. All that work for one injection. But that’s ok, I get it, it’s just part of the process and that’s how it has been for me for over a year. No big deal.

Dealing with delays

Until November of 2017. I was in Colorado staying with friends and surprisingly getting my medication out there was not any more difficult than when I am at home. So I did my injection in the beginning of the month and ordered my next injection before I left back to California; it was to be delivered on the 30th of November a couple days after I flew back in. The 30th came and… no package. So I call the specialty pharmacy (HOLD-HOLD-HOLD) and I am told that they were unable to ship it to me because I am no longer approved to receive this medication and that I need to call my doctor and have him re-approve it. Well, I was a bit annoyed that they didn’t bother to call me when they found out I wasn’t approved because maybe then I could have got a head start on calling my doctor so that maybe I could still get my medication on time but whatever, it’s not the end of the world.

Contacting my doctor

I call my doctor’s office (HOLD-HOLD-HOLD) and tell them what’s going on. I give them the fax number the pharmacy gave me to give my doctor’s office so they could fax in the new paperwork needed to re-approve me. A short while later my doctor’s office calls me back to ask me if I could call the pharmacy and see if they got it. Not sure why they couldn’t check themselves but ok… I’ll play. HOLD-HOLD-HOLD. The pharmacy said they didn’t see anything. At this point I am a bit frustrated, and since I was supposed to see my doctor the next day I decided that I was not going to spend any more time on hold. The next day I see my doctor and explain what is going on so he decides to write me a completely new prescription hoping that will make things easier for everyone and clear up this mess.

Complications with co-pay assistance

About a week later I get a call from the specialty pharmacy to set up my order. It was at this time that I am told that I am no longer on the co-pay assistance program for this medication so my co-pay would be almost $3,000 unless I call the people who provide the copay assistance! Would I like the number to the copay assistance program? Ehm, yeah! So I call them up because I was told as long as I set that up before my medication is delivered I would not be charged the enormous copay. So once again: HOLD-HOLD-HOLD. I explain everything to the copay assistance representative who then looks me up an informs me that I am still on the copay assistance program. I call the pharmacy back (HOLD-HOLD-HOLD) and nope, I am still showing as uncovered. I cancel the order and call the copay assistance people back (HOLD-HOLD-HOLD) to tell them what the pharmacy told me. This time we do a 3-way call to the pharmacy so both representatives can talk to each other and share whatever information they need to clear this up. Awesome, everything looks good! So I answer all the pharmacies questions again, confirm my address again, and am given a delivery date again. The delivery date comes and… no package… again.

Being transferred from person to person

So I call the pharmacy back. HOLD –HOLD-HOLD. “Yeah, we had to cancel your order because you are showing up as not approved”. … … … I ask to speak to a supervisor. HOLD-HOLD-HOLD. I explain everything for the thousandth time and she transfers me to… the copay assistance people. I have no idea why. HOLD-HOLD-HOLD. I tell the copay assistance people what is going on (again) and that I have no idea why they transferred me to them. They tell me they will transfer me to someone who can help: HOLD-HOLD-HOLD. The pharmacy. They transferred me back to the pharmacy who just transferred me to them. So I hang up and after convincing myself to not destroy all the furniture in my room out of frustration, I call my doctor’s office (HOLD-HOLD-HOLD) to tell them what is still going on and that I don’t know what to do, that I give up. This is way too stressful. I am told I will get a call back. That was a week ago. January is over and I still have not got the medication I was supposed to take at the end of November 2017.

A part-time job paid in stress

So here is my point; I know that Multiple Sclerosis (MS) has destroyed my memory but I am pretty sure that on the day my neurologist told me that I had MS she did not also say, “and congratulations! You have also been hired as a phone representative for all health matters from here on out! You will eventually work an estimated 8-16 hours a week and get paid in stress! Enjoy!”

Being the middleman

Why am I the middleman between all these people? Why can’t my doctor’s office call the specialty pharmacy to set up my prescription? Why can’t the specialty pharmacy seem to ever confirm my insurance information? Everyone always has to call me to tell me that I need to call someone else for them and then… oh, I see… and then I am the one who has to sit on hold for 45 minutes in order to spend 3 minutes talking to someone. At first I thought it was just me and my insurance, my doctor’s office, my specialty pharmacy but when I started hearing how other people with MS were experiencing the same thing when trying to get their medication regardless of their insurance or network or whatever, I realized that this must just be an issue with the way healthcare in the United States works. Frustrating, isn’t it? Well, at least it’s just that, frustrating.

Trouble with the system

Wait. No. It’s not just that. Because I work at home and make my own schedule yet this is still stressing me out and constantly making me wonder how I will make time for all of this, so what about people who have to do this and work a typical job? Or what about people who are severely disabled or in the hospital and can’t make these phone calls themselves and have no family or friends to help them? I am not saying there is no way for them to get around this I am just saying that I don’t really know about any resources that may be out there which means that most people probably don’t know either. So I am sure that there are a lot of people out there (who just get so frustrated or utterly exhausted by all of this) that end up just saying, “forget it, I guess I am no longer taking this medication” like I did. People deciding that they are no longer taking a medication that was prescribed to them by a doctor (who obviously felt that they needed it) simply because the amount of clerical work it requires on their part is just too much for them to handle. If this is true for even just a handful of the people living with MS (or any health issue really) then something is terribly wrong with how this part of the system works. We are prescribed medications to try to help keep us healthy or feeling good not to stress us out and make us feel helpless and that is what angers me the most about all of this.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • doctp12
    3 weeks ago

    I’ve been on Tysabri for about 8 years and YES, every single time I get set up for an infusion, exactly the same thing!!!
    I am a physician, working part time, but I have the same problems getting my meds shipped to my infusion center.
    It’s as if they are trying to get you to give up and switch to another Med so they don’t have to extend the “courtesy” of financial help.
    Medicine is a wonderful, beautiful science but the business of medicine is a joke.. it just sucks!

  • CherlynK
    5 months ago

    THIS!!!! Is exactly why I don’t like going to my Neurologist. And I finally put my hands up and said ‘forget it!’ Every damn time I need to get Ahold of the nurse I have 2 options. Leave a voicemail or a email. And I am “supposed ” to receive a call back within 24-48 hrs. I do understand holidays and weekends. I never receive calls back. Not even from the after hours on call Dr. I have been seeing this particular Dr. for 5 years and don’t get me wrong, I don’t call for every broken nail, but this last time I knew I was having a horrible exhasberation and no phone call. I ended up in the hospital getting steroids and now in a rehabilitation center because I couldn’t walk. 5 weeks later. I have officially fired my Neurologist. It sickens me that we have to do other people’s work. We are already suffering enough

  • Matt Allen G author
    5 months ago

    “Your call is very important to us, please stay on hold. If you would like to leave a message, press the star key now” – except if you do press the star key and leave a message, no one will get back to you. At least not in my experience. And yeah, firing your neuro takes a lot of courage because, at least for me, the idea of having to find a new neuro is exhausting… I hate that we, the people in need of healthcare, have to do other people’s jobs. I really don’t feel like my call is “very important” to them. I feel like my call is a bother to them. Almost like they didn’t know that part of the job they applied for involved speaking to people on the phone, not just sitting by a phone while playing games on the computer.

  • Shelby Comito moderator
    5 months ago

    Hi @cherlynk, it just breaks my heart to hear about this experience and all that you’ve been through. You deserve to feel respected and cared for by your health care team, and it’s such a shame that this can be hard to find. Unfortunately, your experience is similar to others’ here – you are not alone!! I commend you for firing your doctor – that takes a lot of courage and also A LOT of energy what with finding a new one!! Have you found a new doctor you’re happier with?
    – Shelby, Team Member

  • harlynl69
    2 years ago

    I was notified end of December no longer eligible for assistance, however I just got new card for 2018 support, Maybe a system glitch on their part. The article was spot on. I am going thru the same process. I gave the pharmacy company the name of new neurologist in October 2017, When I called last week for a refill, I am out of refills and the pharmacy company does not have name of new neurologist. Called doctor to expect call from pharmacy, nothing so far is. Last fall, the specialty pharmacy called me to update their files before sending me my order of generic medication as ordered by my doctor. I advised them it is brand not the generic and that the provider could not have made the request since I no longer had a doctor. They have yet to get back with me on the matter. I am glad I am retired and have time to spends hours on the phone making phone calls for the doctor and the specialty pharmacy.

  • Matt Allen G author
    2 years ago

    It IS nice that you are retired and have the time to handle this BUT I am CERTAIN there are plenty of other things you would rather be doing with your time like, ANYTHING? Haha….

  • Nancy Korotka
    2 years ago

    Great article and so true! I have the same problem, and I think we should get paid for telling inept people how to do their job! The IRS is another one – at least 3 hours for an inquiry! Then by the time we get done with the calls, the fatigue is horrendous. Having MS is actually like having a full-time job and one must be knowledgeable about everything regarding our treatments so we can get what we need,

  • Matt Allen G author
    2 years ago

    Having MS is like having TWO full-time jobs; 1) dealing with the actual MS and how it makes you feel every day and 2) dealing with stuff like this! MS is hard enough on its own!

  • opirnia
    2 years ago

    just like that every month. and then just for fun the insurance switched meds without telling me or the dr, just delivered something different that is apparently the same but different. cue more calls as well as a trip to the dr. again.

  • Jodek
    2 years ago

    This article sure hit home. I’ve been going thru all the phones calls since 1st of year. For some reason wasn’t eligible for co pay assistance anymore . Like anyone can afford 3,000.00 copay!!!! Hoping it works out soon!!

  • Matt Allen G author
    2 years ago

    my thoughts exactly, who can afford that? Which is why I thought it was funny that they asked “IF I would like the number to copay assistance”

  • Anonymouse
    2 years ago

    Arranging for delivery of my medication is just as you described it. Thanks for writing this article!

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