The (SP)ecial Battle

The Saga Continues...

Last month I wrote about an issue I had with my home healthcare nurse. She sped up my infusion to fit her schedule after I told her not to because I would react. She did it anyway, and I, of course, had a reaction. I am happy to say I found a great new home health care nurse, but my battle with my specialty pharmacy(SP) continues.

This post has taken me a few weeks to sit down and write because I am just angry. I am upset that as a patient I feel like I am being taken advantage of and that no one sees my battle with this disease, they know process efficiencies that need to be corrected to squeeze every penny they can from my care. I am mad because when I voiced my concerns no one listened, they wrote me off.

So, what happened you ask, it was a regular call to my SP to arrange my next shipment. The lady on the phone was nice but very confused about my order. I go through this every month, as I have a slightly complicated order. Every month I have to educate the pharmacy tech on my order, they always question me, and I take a deep breath and tell them to please read the notes in the system.

Order placed, and I went on with my evening meeting friends for dinner. About 3 hours later I get a call that my order is on hold because my prescription has expired. Mind you the person who took my order missed that, the person I spoke with last month never caught it was my last refill, and the people I talked to in between, to deal with the nurse issue from the month before missed this as well.

When they called me, they suggested I call the doctor in the morning to help expedite the process. Furious, I went back to dinner and set a reminder to call the doctor in the morning. This situation is where it starts to go from bad to worse. The doctor immediately sent everything in, and an hour after the confirmation I called the SP to verify, and they said it takes 24 hours to clear the system, call back tomorrow. 24 wasted hours. I have only ever come close to missing two infusions, and both have been in the last year since I was forced to switch to this provider.

Later that day, I get a call from the SP, I figured they got everything sorted out. The person on the phone tells me I need to call my doctor because they attempted to call him for a refill and the office said they could not refill it because the doctor's office needs to see me for an appointment. Mind you the doctor has already sent everything in, alerted his office of the situation, and I was just there two weeks ago for a checkup.

I called the doctor after and no one had any recollection of any calls about my care. So now the SP is resorting to lies. I call and speak with someone who has helped me with other issues here, and everything dumbfounds her. The process was easy enough that she leaned back to a pharmacist behind her and had him pull my case up. He finds everything he needs and confirms someone will call me later to verify everything. I ended up having to call them back to confirm. After five calls, catching them in a lie, and getting nowhere with a supervisor, I gave up.

I wish I could say that was the end of it. I did manage to get the product an hour before the nurse arrived. About a week later I discovered there had been a recall of my product. I forgot to ask the nurse to save the lot numbers for me, so I started to get concerned. I called the SP, asked them for assistance. They informed they do not track lot numbers and cannot access what they sent you. Yes, let that sink in for a minute, they cannot obtain the lot numbers they send you every month. They said they would investigate and get back to me by the end of the day. Nothing. Two weeks later, 4 promised phone calls of follow-up, nothing.

I finally went to the nursing agency because I knew they would have it, and they verified that I did not receive recalled product. They sent me all the paperwork to prove I was safe. Even they could not believe the mess that had unfolded. The paperwork they sent me was interesting because it showed that my SP was six months late in renewing my prescription and that the new nurse is the one that caught it.

Where are we in the mess now? I have not been able to get to a supervisor at the SP, outside of one particular one and he is part of the problem. I finally talked to the benefits department at my day job. They were very sympathetic and promised to reach out to the SP and request an investigation. To my surprise, I am not the only person having problems. I have started to reach out the SP corporate office because this is unacceptable. I hope to update you on those efforts soon.

I happened to have my refill call today, and I wish I could say it went smooth. The pharmacy tech told me she couldn't promise me my medicine for my scheduled treatment, but she will see what she can do. Like no biggie right? This stuff isn't important. 


What makes your specialty pharmacy experience go good or bad? I am curious to see what you are experiencing. Let us know!