A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!
Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.
He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.
I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).
Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.
So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.
And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.
Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.
Having your own Accredo issues? Please read my followup on Accredo here.
Mixed Up Mommy 
medco pharmacy rates right up there with yours
It’s a shame that companies that do something so important, just don’t care!
You’re gonna love this! Just realized Accredo is part if Medco!
OMG!!!
Pharmaceutical and insurance companies have far too much power (and money)!!!
So true!
Our son has TS. And I give all the Acreedo Calls to my husband. Bless him, I’ve only talked to them once and almost lost my religion.
wow…just found your blog. Accredo is pressing my buttons also. I am currently on hold to fill my medicine and have been waiting 1 hour and 20 mins and no one has checked on me for at least 30 mins and I have to refill every 6 weeks. If this happens again then I am going to stop using their service. Surely they are not the only specialty pharmacy out there.
Our insurance finally switched us to CVS Caremark. If yours will let you switch, I recommend them!
Wow – I am so glad I found your blog. It makes me feel a little more sane! My son (20mos old) also has TSC and we were recently “upgraded” from Curascript to Accredo Pharmacy…it has been a nightmare. As I write this, I have been hung up on 5x this morning trying to get a supervisor so that my sons Vigabatrin can be refilled. I went through almost the same thing as you, getting a new authorization etc. and now, for some reason, the refill is in their system…but it hasn’t “processed” yet. It’s been there for 1 week and our last packet of sabril will be used tonight. I have been transferred to a “Supervisor” Alex 2 times, and everytime the “transfer” happens, the phone is disconnected. I am so mad right now, so reading your blog and writing this response has helped me vent a bit. LOL – I am honestly not sure what to do now….I am now on hold…again….and the person I just spoke with supposedly can’t find my son’s information in the computer…even though this wasn’t a problem the last 5 calls. Grrrrr! We are starting to ween off of this medication so hopefully I only have one more refill with this AWFUL pharmacy!!!!!
I don’t know if you’re a member of the Alliance discussion page on FB, but it’s unreal how many of our TSC families are dealing with this!
I actually just did a goodle search for Acreedo Pharmacy reviews because I am having so many issues with them at this very moment. For medivation that theu lost my prescription for and then wrote disreguard on it so it couldn’t be filled. Mean while for the last 2 weeks I have called and nobody knows anything about anything and nobody thinks its neccessary to call me about problems instead they just push them off like its not important. I have never had to deal with a pharmacy other than like a walmart or walgreens and I have had the absolute worst experience with them.
They are truly the worst. It’s up to your insurance unfortunately, but ask if they work with any others. We got lucky that our insurance dropped them and switched to Caremark.
They have done me the same way with my ms medications. I now have trouble walking and I can’t work because of them not calling me and letting me know that there was an issue. They have destroyed a lot for me. Now that I know I am not the only one, something truly has to be done about this.
I did at one point try to look into lodging a formal complaint, but wasn’t real clear on where or how to do it. Let your insurance know, though! You never know if they’ll give you another option.
Hey, your blog is really cool, first. Second, you’ll be happy to know your post did come up in the Top 10 results for my Google search of “Accredo sucks.” I’m a nurse in a physician office, and I’ve been having nothing but problems with them since they took over every other mail order company in the world.
Thank you for commenting! I wrote a follow up that got the attention of the parent company and your comment was part of it!
Haha I just did a search for Accredo…your blog came up. I have thyroid cancer, and I need two shots of thyrogen before I swallow radioactive iodine. Oct 30 I spoke with a rep, paid for it by cc, was told it would ship to my Dr. Office. Ok. This after a week of playing phone tag. Friday nov 8th my Dr office called me and said it had not arrived yet, but they had been in contact with Accredo and were told it was to artive that day. Today, Monday Nov 11th I get a call from Accredo just to verify that I orgered the drugs. They made it sound as if I had not done something to verify, or even complete the order, yet they had a credit for the amount to my account?? So now I am another week behind in getting my treatment. Yes Accreo SUCKS!!
I added your story to my more recent post about Accredo! Thank you for commenting!
Wow! I’m having the same issue so I’ll put my complaint here in case others read your blog and comments. My 60 year-old, otherwise healthy husband has a GBM primary brain tumor and BCBS won’t let Duke Oncology Pharmacy fill the Temodar script that my husband needs to begin radiation on Tuesday. I called Accredo last night and set up the insurance information and got a script fax # for Duke to use. Well, then I called Accredo this morning to check up on things and THEY DIDN’T have him in the system AND…they told me that I’d been given the wrong fax#. This new person on the phone at 11am fills out everything and assures me all is okay. I call again at 4pm to make sure they have the script. No record of my husband! I had the Duke nurse call Accredo….the Duke pharmacist call Accredo…even the BCBS customer service rep call Accredo…no one on the other end of the phone had the Temodar script in the system for my husband even though Duke sent it over early this morning! So, BCBS tells me “I” have to be proactive and call Accredo tomorrow morning. If he’s still not in the system, call Accredo on Friday morning! BCBS assures me that Accredo will expedite and get me the drug on Saturday (but I have to be home…and, I’m supposed to go to the baby shower for my first grandchild). Anyway, BCBS told me if Accredo doesn’t have things straight on Friday, I can call BCBS and ask for a override so that Duke Pharmacy can fill the script. I’m so frustrated, worried sick…as if I don’t have enough stress with my husband’s inoperable, fast-growing cancer.
I am so sorry that you are dealing with this on top of your husband’s brain tumor! That’s awful! They are unreal, but at the same time, totally believable as I have also experienced their impossible to update computer system. You can tell 10 different people the same info and the next time you call, it’s brand new information. FYI: two times their screw ups messed up our Saturday because the emergency-begged-for-delivery ended up falling on the weekend and they said we HAD to sign for it even though we didn’t on weekdays. The third time it happened and we had a Saturday delivery, the rep said, “oh, no you don’t have to sign on Saturday. We can deliver it without.” What. The. F***. Why were my other two Saturdays ruined then? I’d push them on that one!
I just Googled “Accredo reviews” and it led me to your blog, I have another tale of fury, they are the WORST. Don’t even know where to begin. Why isn’t there an alternative? Accredo just bought my old pharmacy, Curascript, who now look fantastic in comparison.
So far I have only had good experiences with CVS Caremark. Thank God our insurance switched!
And thanks for reading and commenting!
Just want to register yet another horror story that echoes much of what has been said. I thought Curascript was bad until we were switched to Accredo. Spent about 10 hours on the phone over 8 days. Lovely people answer the phone but constant misinformation and dropped balls. I believe they have systems in place that discourage insured people from getting these medications. There is no way someone that is sick and does not have a committed care provider could navigate the roadblocks that are in place. In the end, they don’t ship the medication until they believe there is a crisis that may result in liability. I’m looking for a class action law firm or legislative office that will provide greater visibility as to this problem. I welcome any helpful input.
Thank you for sharing your concern. I’m adding your comment to this post https://mixedupmommy.com/2013/11/12/how-is-accredo-pharmacy-getting-away-with-this/ as it actually got the attention of the company. They called me and say they are looking into the concerns I expressed. But Accredo is so poorly operated, it makes me wonder if it will really be fixed. Thanks for reading!
I also had a problem dealing with Acredo. I would get a call saying call and set up shipment. When I called everything seemed fine, a delivery date was arranged, but no medicine ever came. When I called back I got excuse after excuse. Finally had blue cross set up a shipment. That never came either. Finally got a supervisor at blue cross through our benefits dept to call Acredo. After 5 confirmed no show shipments, one finally arrived. I can’t go through this every month. My suggestion is to call your insurance company after the first no show and let them deal with it. If insurance companies stop using Acredo they will go out of business.
I agree that people need to let their insurance know. i wrote a followup on Accredo that got the attention of the higher ups.
I also just found this blog by Googling “Accredo pharmacy reviews.” I plan to file a complaint with my insurance company about them next week but have spent enough time on the phone in the past week! I discovered that my daughter’s RX was transferred to Accredo when I tried to log onto my Curascript account to schedule her RX delivery. I received no notification that the RX was transferred from Curascript to Accredo, or that her RX was overdue for refill (luckily, we had extra).
I never thought that a pharmacy could be worse than Curascript, but Accredo wins! I have not been able to set up an online account with Accredo, and their web support hung up on me yesterday (I’m probably supposed to believe that we just accidentally got disconnected). But, I have been told that we can’t schedule deliveries online anyway (which we did with Curascript). I stayed home last Friday waiting for a delivery that I scheduled by phone and, when it didn’t arrive, I was told it had never been placed. While setting it up for this past Tuesday, and I learned that our co-pay assistance program information had not been transferred from Curascript to Accredo. Each of my phone calls about getting the RX filled lasted about a half hour due to “unusually long” wait times. But, when I called their billing department, that line sure was picked up quickly!
UPDATE: After I let both our insurance company and our hospital know about how terrible Accredo was, my daughter’s RX was transferred to CVS Caremark and the hospital filed a formal complaint against Accredo.
Fantastic! So glad the hospital is taking action.
I also just found this blog by Googling “Accredo pharmacy reviews.” I plan to file a complaint with my insurance company about them next week but have spent enough time on the phone in the past week! I discovered that my daughter’s RX was transferred to Accredo when I tried to log onto my Curascript account to schedule her RX delivery. I received no notification that the RX was transferred from Curascript to Accredo, or that her RX was overdue for refill (luckily, we had extra).
I never thought that a pharmacy could be worse than Curascript, but Accredo wins! I have not been able to set up an online account with Accredo, and their web support hung up on me yesterday (I’m probably supposed to believe that we just accidentally got disconnected). But, I have been told that we can’t schedule deliveries online anyway (which we did with Curascript). I stayed home last Friday waiting for a delivery that I scheduled by phone and, when it didn’t arrive, I was told it had never been placed. While setting it up for this past Tuesday, and I learned that our co-pay assistance program information had not been transferred from Curascript to Accredo. Each of my phone calls about getting the RX filled lasted about a half hour due to “unusually long” wait times. But, when I called their billing department, that line sure was picked up quickly!
Thanks for reading and sharing your story! I’m adding your comment to the body of my entry “How is Accredo Pharmacy Getting Away with This?)
I’ll be more specific about my story as well.
I called to order my meds (for the first time dealing with Accredo). It went fine, the woman assured me that they would deliver 2 days later, noted my copay, etc. Delivery day came and went, no meds. The following day I called, was told I had been “missed by the system” and that they would arrange for Saturday delivery, which was the following day. Again, no meds. I called on Monday, and the agent said, “Did you even order this medication??” and “Ohhh, it says there’s an insurance problem.” I was put on hold for about 10 minutes, she came back and said I would have to call my insurance company, and that it was too late in the day (2 pm) anyway to arrange for delivery for the next day. I asked to speak to a supervisor and was put on hold for a half hour, after which I gave up. Not believing the “insurance company” excuse, I called Accredo the next day to try again and was scolded by the agent for “hanging up” the day before. At this point, I admit, I became belligerent–I was basically beside myself–and said, “Okay, tell me today’s reason why you can’t send me my medication.” And she did! Turns out 1 pm is the cutoff time for next-day shipping, which I need. So no meds for the following day, AND the agent denied there was any notation of an insurance problem. But she finally placed the order for me–in very slapdash style, not asking about a credit card for the copay, nor about the need for a signature on the package, nor verifying my address. I didn’t believe that she had actually placed the order, so I called back to confirm. I got my meds 10 days, I believe, after I was originally supposed to receive them.
I’ve added your story to my other post. Thank you for elaborating!
My wife is on chemotherapy. She started getting her prescriptions from Accredo last month. Last month her chemotherapy was two weeks late! This month, it will be three days late. When they called today, they had the nerve to blame the snow storm in Massachusetts for the delay. They are located in Tennessee!! I just called HPHC and left a message. This has to be illegal.
I’m so sorry!I am adding your comment to my post “How Is Accredo Pharmacy Getting Away With This.” Thank your for sharing your experience. I know it has been seen at the parent company and I hope it will urge them to take action.
OMG!!! I was on the verge of tears and then I googled Accredo to see if they were doing this to other people. Why does this have to be so difficult. I see that you have had some success in making your experience known to your insurance company and I will be doing the same thing. As of today, my daughter is 9 days late for a medication (shot) that she is supposed to take every 28 days. Every month I get phone calls asking me how I plan to pay even though I have established the payment. Then I get recorded calls that tell me the shipment is being filled and on the way. Then nothing happens until I have to track down what is going on because the shot was not sent to the doctor’s office.
Ida, that is so awful. Lots of people are having these issues. Did you see my other post I will add your comment to that post. Feel free to share it with your insurance company. My blog did get the attention of the parent company who said they will look into it, but the issues aren’t solved at this point. Also, please email Jennifer Luddy at ExpressRxHelp@express-scripts.com and let her know. She is the parent company rep that contacted me. If you have a Twitter account, please ust that to Tweet and get their attention as well. Hope your meds come through soon!
Accredo is the worst. There.are.no.words.to.express.how.absolutely.horrible.they.are.
They are mostly quite nice to speak with (the customer service reps) -and yet they’re completely and utterly inept (it may be a technology/database issue). We repeatedly have to call to get Rxs filled, they frequently ‘lose’ my husbands information, prescriptions, etc. My husband has TRIED to pay them for copays he owes them for 2013- but they can’t find record of any invoices! This past week he tried to call them to make sure they received the 90 day Rx, and the agent was surprised that he was calling about a refill because there was no record of any previous shipments. (He has received multiple shipments already!! )The agent actually told him that if a new Rx gets sent in, it is probably best to call right away to have an urgent request put in to ‘find’ the new Rx so that they can start processing it. The place is messed up beyond belief and their management/resolution teams refuse to acknowledge that there have been issues in the past, or provide any clarity as to why it has happened it or what they will do to fix the issues.
Thank you for sharing your story! I’m adding it to the post “How Is Accredo Pharmacy Getting Away With This.”
Accredo = Ah-GREED-O….Greedy corporate, non-performaning, completely apologetic, totally pathetic, constant calling, constant ordering, constant canceling, spoc appointing, overcharging, incurrent billing pharmacy EVER!!! It all started in Sept 2013!
I’m adding your comment to “How is Accredo Pharmacy Getting Away With THis.”
Dealing with Curascript & Accredo over the past 2 months has been an ABSOLUTE NIGHTMARE for me. I am a 28 year old male with Psoriatic Arthritis. I have Anthem Blue Cross/Blue Shield through my job, and have had the insurance for at least a few years now. I was on the medicine last year, but decided to take a break due to the serious side-effects. Recently my arthritis & psoriasis has gotten a lot worse, so I decided to go back on the medicine.
Here’s a breakdown of what has happened to me over the past 8 weeks:
– Anthem told me ExpressScripts would be my new pharmacy. I previously had Curascript
– Called Express, they told me that they are “still migrating” old customers to the new system.. so I had to still deal with Curascript
– Curascript gave me the run-around for approx. 6 weeks.. told me they needed to get prior auth, told me they didn’t receive the script (despite having a copy from my doctor’s office 1/24), told me it would take over a week to “process”, etc. Promised me they would expedite, blah blah. Finally about 3 weeks ago they told me that I need to deal with Accredo! (Huh?! 1st time I had ever heard the name.)
– Dealing with Accredo has been even worse. First they told me they couldn’t use the script from CuraScript, they needed a new one. Then they told me that actually could see/get my info from Cura, but there was no record of any communication, no notes, and NO prescription
– I’ve been constantly disrespected and lied to. One rep told me he would look into my problem, put me on hold for 15 minutes.. then PUT ME BACK INTO THE CALL QUEUE!
– Another supervisor named “Consuela” told me she’d reach out to my doctor’s office for the Rx and personally assist me. Lo and behold.. she gave me a SIX-DIGIT extension when their system only uses FIVE digits!!
– And they LOVE to play the ping-pong game.. they are constantly blaming errors or issues on their “system”, the other company, their multiple call centers, etc, etc. They pretend to be so nice, but I think they must just deal with complaints all day long…
– Today (2/20) I was told I needed to DEAL WITH CURASCRIPT! I blew a gasket and asked, yet again, for another supervisor. Like magic, a new excuse has entered the fold: Now I’ve been told that the issue is that I need a new prior authorization because, get this, it expired yesterday for me. I got another supervisor’s name and a brand new set of numbers to confuse my doctor and probably further delay the delivery of my script. For reference, I started this process in late December.
I am so, so, so frustrated right now. To the point of tears. I am tired and sore from my condition and my psoriasis has been spreading all over my scalp and my nails. I am tired of feeling like crap and looking gross. These people pretend to have sympathy over the phone, but they’re all heartless. They should be ashamed how they run their business.. they have ZERO compassion and are grossly incompetent. Their negligence is going to end up seriously injuring (or worse..) someone some day, and I hope they get sued for all the money in the world. They don’t deserve to be anywhere NEAR the medical profession, period.
No one should have to suffer like this, I’m just thankful that my condition isn’t life-threatening…. (sorry for my massive rant, and MUCH sympathy to everyone else suffering)
Awful. I’m so sorry. I am also adding this to my post called How is Accredo Pharmacy Getting Away With This?” When I initially posted about their ineptitude, I thought the issue was with them dispensing vigabatrin. But I’ve learned that they can’t seem to dispense anything properly.
Wow, I’m not surprised there are this many bad reviews. I too googled “accredo reviews” in hope that I wasn’t the only one that felt this way. My stories would take up this entire page so I’ll spare you but just today they delivered the wrong medication to me (after having to call me again because ups couldn’t deliver it to me at first because they didn’t give them my apartment number even thought we ALL know that they ask you over and over and over what your address is to confirm….dumb) and just last week someone from Accredo told me “yea, I really don’t know how to help you, let me pass you back to Express Scripts”…and then having the woman at Express Scripts LAUGH at me on the phone after I expressed how horrible their company was set up that they can’t see Accredo and Accredo can’t see Express Scripts and no one knows how to help me and for someone who is battling with a lifelong disease, you are making it impossible for me to get the drugs I need to survive….yes, she laughed at that.
Unreal! I have added your story to my post “How is Accredo Pharmacy Getting Away With This?”
I have had so many problems with Accredo as well! I am so glad to know that it is not just me! I just want to bang my head against the wall every time I call them (because we all know they NEVER call to let us know there is problem). I don’t know how it can possibly be so hard to fill and ship a prescription.
Accredo S__ks! I went through the same thing that you went through many times. When I have any problem with them, I go on a calling bliz. I call in my order and when they say no, I explain in extreme detail what has happened and what I expect from them. I always ask for a supervisior and another number to call. I been put on hold for hours. I feel that the more of their time that I use up and hope to annoy them (they have even hung up on me) the better. This is the only way that will hurt them. The more people that do this at one time the better. Cripple them with phone calls! Bliz them! Try to do it as much as possible1 They are counting on sick people being to weak to protest because it takes too much effort. Please complain and complain every day and talk and complain to as many people as possible. They are a big company so a lot of people need to do this. Any spare time, just call them and put in a complaint. I hope the best for all of you who suffer at their dirty greedy hands.