Too Big to Care: How One Pharmacy Reneged on Providing a Personalized Service
When something seems too good to be true, it usually is. Sounds cynical, I know. But however jaded I might feel, I always try to keep my heart and mind open to the outliers, health care entities that demonstrate an earnest attempt to deliver an extra layer of individualized care to MS patients.
In this case, it is a mail order pharmacy assigned to me by myt Medicare Part D plan. They handle delivery of my Tecfidera and Ampyra. Shortly after I started taking Tecfidera in September 2013, one of their pharmacists, I'll call her S, called me and said she was assigned to me and would be scheduling regular calls to monitor my progress on Tecfidera. I was deeply impressed that she would be the only pharmacist that would work with me. It made me think it might be a relationship similar to that of my neurologist, a long-term deal with one health care professional who would come to know the particulars of my own MS journey, my history of medications, and everything else about my life that might be relevant.
It turned out to be more faceted than even those particulars. Whatever method she used to retain details of our phone conversations, S was always thorough. With each phone call she would revisit issues and problems discussed in the previous call. Many times she would remind me of things I’d since forgotten, and her recall would often send to me to my neurologist for a follow-up on issues that I was more apt to blow off had S not pressed it. It could be a symptom or a side effect, minor in my mind, but not in hers.
S’s knowledge about MS, its treatments, and numerous clinical studies surprised and impressed me, too. In some ways, her knowledge surpasses that of my neurologist. A few times I’ve asked my neuro a question and gotten a blank look, after which I asked S and gotten a well-informed answer.
But this dream program the pharmacy created teaming one pharmacist with a small number of patients abruptly came to an end this month. The day I was scheduled to get a call from S, I was contacted by a stranger from the pharmacy informing me that S would not be keeping her phone appointment with me because the program had been eliminated. She reassured me that I could call the toll-free number to speak with a pharmacist any time I needed to.
I expressed my displeasure at this decision, insisting that S knew things about me and my case that no one else could know and that I’d be reinventing the wheel with every phone call. She dismissed my concern by saying that all my info is in their system and any pharmacist I talk to will have access to it. I said nothing, but, skeptic that I am, I had trouble buying it. It would be like any other generic toll-free call-in service with endless menu selections and multiple choice questions requiring a keypad or vocal response only to ring through to someone's voicemail after all that. I recalled the last few times I'd used patient support toll-free numbers to consult with nurses during the days I used injectable therapies. I became disillusioned with the whole operation when the nurses became guarded and reticent; in particular, refusing to give me suggestions about alternative injection sites when I developed hard, painful injection site problems and lipoatrophy on both arms. They claimed that they weren’t authorized to give that kind of advice and advised me to call my neurologist. A lot of good they were, I had grumbled; such business decisions often result in a loss of valuable customer support.
Nevertheless, I can end this grumble on a good note. I called the pharmacy last week to ask a pharmacist about whether taking vitamin E would negatively interact with any of my medications. Of course, my call was taken by someone I’ve never spoken with before, but recall that I had been assured earlier that my question could be easily handled by anyone because all my info was at their fingertips. So here’s how it went:
Me: Hi, I want to start taking vitamin E for its antioxidant benefits. I’m concerned about whether there are any contraindications.
Pharmacist: I’ll look up your info. So you want to know if it will interfere with Tecfidera?
Me: I want to know if it will interfere with any of the meds I’m taking, there are quite a few besides Tecfidera. You should have them all in the system.
Pharm: (After ten seconds of silence) Nope, I don’t have access to all of your meds.
Me: S knew every med I took and kept track of lots of other things besides.
Pharm: I’ll transfer you to S, okay?
Me: Yes, that’s great, thank you!
* * *
S and I talked at length. Not only did she know all about vitamin E, the fact that it would be safe to take with all my meds, and what maximum dosage would be safe to take every day, we also talked about this big change in the call program. I was so moved that she was troubled about it and how it was handled. There were several patients in her care that she had talked with for years. She had been instructed to abruptly stop calling us. Period. She had wanted to at least call each of us one more time to explain the changes and reassure us that she would remain accessible, but this reasonable method of farewell was not to be. The department had gotten too big and the pharmacists’ time would be better spent elsewhere. The pharmacists would now follow-up with new Tecfidera patients for a couple of months to make sure there were no serious issues, then cut them loose and have them call in as needed.
In an impersonal world of medical care where patients are herded through an electronic push-button process of auto-refills and appointment confirmations, it is a rare thing for a professional to blur the line between the business and the personal. It is also a wonderful thing that S urged me to call her any time I had a question or concern and gave me the 5-digit extension to her direct line. She also gave me her email address. This is how she got around the new policy without blatantly rebelling. It is professionals like S that get it, that the main thing is to take care of the patient. People with lifelong chronic diseases need long-term relationships with their health care teams.
I can only hope that there are lots more health care professionals out there like S, and that personalized integrative care will be the next big thing in the very near future.
How well do people around you understand MS?