Modified Atkins Diet for Seizures, Parenting, Tuberous Sclerosis

Looks like we’re trying the modified Atkins diet.

November 27, 2013 Rebecca Gaunt 2 Comments

Sigh. I really hoped this wouldn’t be necessary, but the last increase in Onfi didn’t make much of a difference and we’re still at 1-4 seizures most days. I e-mailed his neuro and asked if he thought there would be any point to another increase, or should I just bite the bullet and move forward on the diet. I knew when I sent it what the answer would be since he had brought up the possibility of the ketogenic diet a few weeks ago. I was relieved that at least he thought modified Atkins was a reasonable alternative to keto. Not that I think MAD will be easy, but just the thought of keto intensely overwhelms me.

I keep reminding myself that if it works, it’s worth the extra effort, and if it doesn’t, we only do it for a few months. We”ll be meeting with a nutritionist at the CHOA keto clinic to start.

But if it doesn’t work…then what?

We’ve tried seven different medications, and even more effective cocktails only decrease seizures — they don’t stop them altogether. Sure, there are more meds we haven’t tried, but as I shared in my previous post about medical marijuana:

…less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations. -WebMD

I’m going to start this diet fully optimistic that it will work. Because if it doesn’t, the other options are to explore surgery again or live with the seizures. Sure would be nice to have the option of pediatric cannabis in Georgia. Please watch this clip from The Doctors in which Paige Figi explains what a miracle it has been for her daughter with Dravet Syndrome.

I am also seeking guest posts from people who are either legally using medical marijuana to treat their children, or are seeking it’s use — possibly entailing a move to another state. E-mail pin.the.map@gmail.com.

Petition for legalization of medical marijuana in Georgia.

Two weeks into Ketogenic diet update (ourhazy.wordpress.com)
Pennsylvania parents of epileptics pin hopes on medical marijuana bill (triblive.com)
Epilepsy Patients Flocking To Colorado After Medical Pot Gives Them Hope (denver.cbslocal.com)

Ordinary Life, Parenting, Weight loss

I’m turning into such a slob.

November 25, 2013 Rebecca Gaunt Leave a comment

The write-from-home, stay-at-home mom thing is making me really lazy. If you had told me in my teaching days that I’d let my gray roots get so far before taking action or equate getting dressed to climbing Mt. Kilimanjaro or stretch out the months between haircuts to such an extreme, I wouldn’t have believed you. And yet, I maintain my love of clothes shopping, despite the fact that I’m too sluggish to put them on anywhere but a dressing room.

I also realized I need to pull myself out of a clothes rut:

But I did finally get a haircut:

The first thing my stylist said was, “Somebody’s been playing with color!” Sigh. Yes. Once again I’ve managed to start unintentionally turning my hair black with Nice ‘n Easy. Unfortunately, it just ain’t in the budget to do it professionally all the time. Especially since we have to pay off the hit we took when our old house under appraised, finish painting the new house, and — come hell or high water — we’re going on vacations again in 2014. We’ve gone on trips — that’s what you call it when you take the kid — but we are going on vacations –what you call it when you drop the kids off at Grandma and Grandpa’s and outrun them back to the car. And just Friday I received the exciting news that one of my good friends is engaged and I will likely be attending a wedding overseas in about a year!

Looks like I reloaded my Fitness Pal App just in time. I’ve been inputting my food intake for a week now to track my calories. I think it will really help this time since I find myself genuinely debating the merits of one Oreo cookie vs. two pieces of leftover Halloween candy. I started this right before the holidays because I really like a challenge. Also, I’m tackling my weight loss with a very specific strategy:

But here I’ve gone on and on about me when I know pretty well most — okay fine — all of you really only care about Connor, so…

Here he is relaxing with a puzzle:

To be clear, he only likes taking them apart and throwing the pieces everywhere.

This is what happens when I get up in his business about his molars:

And this pictures really doesn’t do justice to how much it hurt, right on the bone. And he wouldn’t let go. I almost panicked and smacked him, but refrained. I now know I will perform poorly in the event of an attack by a dog — or alligator. I believe the recommendation is to push toward the animal, not to pull away. Fail. Also, the state of my nails is not indicative of my current state of laziness. I’ve always been too lazy for mani/pedis. I regard them as annoying appointments to keep, like doctors. Random side story, though you can’t really tell in the picture, that nail is totally deformed from the time I slammed it in a car door when I was 15. It grows warped and downward the longer it gets, kind of like the creepy Guinness World Record keeper with the longest fingernails. But there I go about me again.

Go check out this page created for epilepsy awareness by a man who lost his young wife to epilepsy. He has been sharing people’s epilepsy stories all month for Epilepsy Awareness Month. He also makes these to share:

For those that might be confused, I don’t know if there is an Abigail, Ga — that was a misunderstanding — and my aforementioned laziness precludes me from Googling it. But these are pretty awesome. Check out his gallery of E-heros!

Coroner: Merrill Lynch Intern Died From Epilepsy – ABC News (abcnews.go.com)
‘There are a lot of misconceptions’: Experts weigh in on seizure disorder for epilepsy awareness month (nj.com)
Epilepsy-Treating Brain Implant Approved by FDA (webpronews.com)

Parenting, Tuberous Sclerosis

How I Do This.

November 21, 2013 Rebecca Gaunt 3 Comments

…as long as he cares that I’m there. Maybe not like David, newly adopted, possessive. But he looks for me at swimming, tearful, crawls up and grabs my legs, clutches my face with his wolverine claws, clings to the gate demanding I come get him. Maybe he doesn’t call me mama yet, or reach for me when someone else takes him. But if someone else has him and he’s fussing–sometimes…sometimes if I take him he stops.

Sometimes when I have something to blog, I jot it down on my phone’s notepad to remember it for later. But sometimes I jot it down somewhere else and forget about it. I just found this on my laptop. It must have been written this summer, since I mention a mild jealousy that my friends’ newly adopted son showed more outward attachment to them than we necessarily saw from Connor. It made me feel good to read this today because it helps me remember that he is continually progressing, the details of which can be missed when you’re with him every day. Still no “mama” per se, but he does think I’m increasingly awesome, so maybe when he just goes on with his muhmuhmuhmuhmuhmuh, he actually IS referring to me, but I’m far too great for just two syllables.

His attachment now borders on problematic. I have to hide from him during aquatic therapy so he doesn’t watch me and cry for me the whole time. The first time after I moved he kept looking for me in my usual spot. He chases me around the kitchen island and has nearly taken me out multiple times getting under my feet. He has sibling rivalry with the dishwasher because when I’m emptying or filling it, I am unable to pick him up. Sometimes he throws his drink around until I sit down with him and let him drink it on my lap. The last two times we left him with my parents, he wouldn’t eat until we got home. It’s a problem I love to have (minus the eating–sure hope that resolves before we take some long-awaited, adults-only trips next year). He pulls himself up at the kitchen table or couch — wherever we might be sitting — and does not like to be left alone in the playroom out of sight.

And he reaches out for me. He reaches out for me.

People ask, how do you do this? That’s how.

Aquatic Therapy’s Role in Recovery (rawlivingfoods.typepad.com)

Parenting, Tuberous Sclerosis

I despise mail order pharmacies.

November 19, 2013 Rebecca Gaunt 5 Comments

I had a full bottle when I started the process of refilling. Now I have this.

Really? I finally get Accredo out of my life, and now my insurance makes me get Onfi from mail order Optum Rx, even though it’s available locally. And what do they do? Take forever to process his upped dose on a new prescription and then just throw it on a UPS truck NOT OVERNIGHT, but 3-5 business days SIGNATURE REQUIRED, without coordinating a delivery date with me, all for it to be delivered two days after we run out. So here is my morning making phone calls coordinating getting an emergency supply. I DESPISE using mail order pharmacies. I started the process of his refill as we opened the current bottle. I thought an entire bottle of Onfi would provide sufficient time for a refill.

When I established on the phone this morning that the vague 3-5 business days would fall into the “too late” category I was transferred to someone who would help me get an emergency supply locally. Well, okay. I can deal with that. Until I realized that actually just meant I handle everything as usual and would have to do what I was already planning to do out of desperation. Call local CVS and beg for mercy. Call neuro and beg for emergency prescription to be sent over. Wait for everyone to coordinate everything and deal with initial insurance rejections and getting override codes.

Not to worry. CVS has assured me they will hook me up with emergency doses as needed because the prior approval needed to give me this “emergency” dose actually takes three days.

It sounds so pretty doesn’t it? Have your medication delivered right to your door! Don’t ever do it if you have a choice! My heart medication — the ones I’m going to need from all this in the future — will probably only be available through mail order.

To CVS Caremark Pharmacy that currently handles Connor’s vigabatrin: We have something special. Please, please don’t ever break up with me. My heart couldn’t take it. No, seriously. If you fail me, too, my heart might give out. I’m begging you to keep loving me.

On another note, I had a voicemail the other day from someone at Express Scripts in regards to my blog about Accredo. They are looking into the issues I shared. The day got away from me yesterday and I didn’t get a chance to call her back, but I appreciate that it is getting some attention there. I need to get some coffee and breakfast in my system to return the call. Oh, and Connor’s permission.

Current Events, Medical Marijuana, Parenting, Tuberous Sclerosis

Get out of the way of medical marijuana.

November 18, 2013 Rebecca Gaunt 7 Comments

Medical Cannabis Growing Operation in Oakland,... — Medical Cannabis Growing Operation in Oakland, California (Photo credit: Rusty Blazenhoff)

Marijuana is not my thing. I know there are many people who would say that it’s just a matter of finding the right kind, but I’m more of a glass of wine kind of girl. That’s just my taste. I’ve never been big on the legalization of recreational marijuana, but I also didn’t oppose it. I’ve been pretty indifferent to the whole thing.

Then intractable epilepsy entered my life. To date Connor has tried seven seizure medications. He is currently on three and being slowly weaned off one. All have the potential for some pretty serious side effects, and he still has 1-4 seizures most days. And we’re lucky. As much as his seizures suck and play a role in his delays, they are not nearly as bad as what other families are dealing with. (Knocking on wood) Connor has never had a tonic clonic (grand mal) or status seizure (requiring medical intervention to stop). I’ve never had to watch him thrash painfully on the floor, or see him intubated because he’s been pumped with so many meds to stop an unrelenting seizure that he stops breathing on his own.

That is the reality for many people, and Connor is at risk for this as well. I may yearn for full seizure control, but there are people that would kill for the degree of control we have. They watch their kid have 300 seizures a day and ER visits are a regular occurrence. This isn’t some random anecdote. I KNOW these people. Mostly online, but I know them (as I write this, Connor just woke up from his nap on the couch next to me and had a seizure within a couple minutes).

Some people oppose medical marijuana because they can’t see beyond Nancy Reagan’s “Just Say No” campaign. Others oppose it because we don’t have the studies to prove it or to indicate the appropriate dosages for pediatric patients. Some are just too caught up in the fact that people will abuse the privilege of medical marijuana by obtaining a card under false pretenses. Yes, people abuse it. They claim pain and just want to smoke weed. So what? The solution isn’t to punish the people that really need it. Shall I name a few of the far more dangerous legal medications that people abuse?

Unfortunately, thanks to the arbitrary demonization of marijuana, decades upon decades of opportunity for study have been wasted. The people who want to try MM for their children are desperate and don’t have time for politics. There have been countless stories of kids who have found their miracle in the form of a plant. That doesn’t mean it will work for everyone, and I’m not advocating it be a frontline med until we have more data, but it’s no easy task to complete clinical studies and gather that data when you are dealing with an illegal substance.

From WebMD:

Half of all epilepsy patients who are initially started on one anti-seizure drug remain seizure-free for at least a year, a new study confirms.

Among patients followed for as long as 26 years, initial response to drug treatments strongly predicted future seizure control.

Yet less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations.

The findings make it clear that epilepsy patients who are candidates for surgery or other non-drug treatments should be considered for these procedures earlier rather than later, says neurologist Patricia E. Penovich, MD, of the University of Minnesota and the Minnesota Epilepsy Group in St. Paul.

“These patients don’t have to wait until they have failed five or six different drug regimens,” she tells WebMD. “If their seizures are not controlled by the first few medications it is reasonable to consider surgery.

And when surgery doesn’t work? Or if you aren’t even a candidate for surgery? Or in the case of TSC, you have a successful brain surgery only to have another tuber fire up?

If you can stand in the way of desperate parents and individuals struggling against the devastating effects of constant seizures, then congratulations. You’ve clearly never seen your loved one suffer. But it’s selfish to further your own agenda at the expense of others.

There’s no more time to argue. We’ve wasted enough.

Articles:

Paige Figi appears on The Doctors to share Charlotte’s story. (video)

A New York Times blog about the potential of medical marijuana and how the laws are preventing researchers from effectively studying it.

Medical Marijuana: a Patient Perspective, a patients’s use for depression and anxiety.

Families are having to move to Colorado to treat their children including this family battling infantile spasms.

Paige Figi’s story and living with Dravet Syndrome (mom used to vote AGAINST weed legalization).

Dr. Sanjay Gupta’s essay on why he changed his mind on weed.

Would medical marijuana help Lorelai?

Parents suing the state of Arizona because their son benefits from MM.

A family that has had to split up in order to obtain the MM their daughter needs.

Boy with tuberous sclerosis and autism benefitting from MM.

10-year-old with Doose syndrome finally seizure free.

NYU medical conference on use in seizures and other neuro disorders.

Marijuana timeline by PBS.

Weed Pioneers Look To Save Epileptic Kids With New Medical Marijuana Strain (huffingtonpost.com)
Child with seizures to get medical marijuana (siouxcityjournal.com)
More people accepting medical marijuana (wwlp.com)
Parents demand medical marijuana for kids with relentless seizures (pennlive.com)

Ordinary Life, Parenting

I don’t want to kill my kid, I’m just really fashionable.

November 17, 2013 Rebecca Gaunt 4 Comments

I’ve been combing the Internet for an indoor swing for Connor now that winter is settling in. It has actually been in the 40s here in Georgia, otherwise known as “Oh My God I’m Gonna Freeze To Death Like The Original Pilgrim Settlers” weather here in the south. At least we have Chick-Fil-A and Waffle House so we won’t starve. His spurt in motor skills was well-timed right before the part of the year where I climb underneath 12 blankets and don’t get off the couch for five months.

His newfound independence reminds me of the Terminator films. Everyone was all, woo hoo! Skynet! Oops. Apocalypse. You see, Connor, too, has become self aware and he will soon be on an unstoppable path of destruction.

But apparently an indoor swing is not attainable for a reasonable price once you factor in the cost of hardware SOLD SEPARATELY. ALWAYS. SOLD. SEPARATELY. Everything I need is solely manufactured for kids under 25 lbs.

On my fruitless quest I was reminded why I hate home design blogs.

Originally featured on Martha Stewart (surprise), shared on other design sites.

Yeah. Let’s install a trapeze in the living room. This is modified from my initial reaction which involved some four letter words. I became intrigued…what other impractical and deadly joys are out there that I’m ruining Connor’s life by not providing?

Original credit here

Okay. This is a cute use of space and it’s apparently really the boys’ bedroom. So this is actually a lesson in parenting. It is apparently possible to have an elevated surface, two kids and no homicide attempts. I only have one kid so I can’t speak as a parent, but I can speak as a sister, and I SOOOOO would have pushed my brother off that on a daily basis. And I would have gotten away with it, too. Just like the time I gave him a bloody nose and claimed I was trying to stop him from running into the street. He wasn’t.

This is hailed as a “vibrant and lively” kid’s bedroom:

Credit here

I agree. If your kid is Don Draper.

Credit here

I mean….I don’t….what?

Buzzfeed

Just the other day I was telling Chris we need a little more excitement in our lives in the form of trips to the ER.

Credit here

Seven years I spent yelling at students to get down when they were climbing on things they shouldn’t. Could have saved my breath since apparently parents are indifferent to broken limbs.

Credit here

Again, words fail me. I assume Johnny Depp himself comes to install it with the $60,000 price tag?

Credit here

Your daughter is never too young to learn the art of pole dancing…

Credit here

Sing with me! The best part of waaaaaking up, is dying an untimely death after getting your foot stuck in a drawer!

This one’s pretty cool, I just think it was stupid to do the room in white. Getting your kid’s blood out is going to be a b****.

Spinal cords are overrated. Besides that’s why we keep prisoner clones in the basement.

lilliput-Play-Homes-a-19999-Playhouse_1 Lilliput Playhomes

Most of the people who buy this playhouse end up living in it. But the kids get the master.

Accredo Pharmacy Problems, Tuberous Sclerosis

How is Accredo Pharmacy getting away with this?

November 12, 2013 Rebecca Gaunt 185 Comments

Update July 12, 2023: Hello frustrated patients. If you are reading this, a combination of a search engine and unmet pharmaceutical needs probably brought you here. A comment left on this post earlier today led me to log in and leave a brief update. It has been nearly 10 years since I wrote this post. I have not updated this blog since 2017. Yet this post still draws readers and commenters all these years later. It really hit me that a decade has passed, and little has changed. We haven’t been with Accredo steadily during that time, rather insurance plays those games where they kick you around trying to save a few bucks, not caring that every time we start over, so does the host of issues trying to get our shipments up and running.

But we always end up back at Accredo. Over and over. This time we have a point person assigned to help us. So being an asshole online for a decade does reap some benefits. We very much appreciate her assistance. You might think having an insider clears up all the issues. It does not. Accredo is simply that badly run. Turns out they can jerk people around on the inside as much as they do us (not her words, she’s very professional. That’s my interpretation of the situation when she sets up shipments and someone else cancels them. But anyway).

As I understand it, there is one or more patient-initiated class action lawsuits in the works as well as several states seeking legislation regarding problems with pharmacy benefit managers, mail order etc.

I hope something comes of it because I think we can all agree these companies have no desire to make changes independently. It’s never going to happen. I wish I felt more hopeful about the lawsuits and legislation, but fixing a broken system, state by state at that. Well, I’m a cynic.

At any rate, this post has at least helped people realize they aren’t alone. And I guess that’s something.

Becky

Update April 8, 2024: The above-mentioned point person went MIA on us and quit returning phone calls. She even had difficulty scheduling our shipments without some other department arbitrarily canceling them.

I have previously written about my issues getting my son’s vigabatrin from Accredo Pharmacy here, here and here. (Update: this message was left on my blog Hi – This is Jennifer Luddy from Express Scripts. We do care very much about our patients, and if you have a service concern, we want to make it right. Please send me an email atExpressRxHelp@express-scripts.com, and I will assist you.)

I was so frustrated that I started looking into whether there was some sort of governing body to report them to, but just as I did that, lo and behold, our insurance had us switch to the far more competent CVS Caremark mail order pharmacy, so I never pursued it. As best I can tell, this is where one might pursue a formal complaint since they are in Memphis. There is a tab to the left for complaints. If I am wrong, please let me know so I can update this information. Especially if you have ever actually done it.

So why am I writing about them when I have been blissfully saved from the hell of dealing with them? A couple reasons. 1. I frequent discussion groups for TSC and see how many people are fighting for their child’s vigabatrin, a medication that is absolutely essential in the fight against infantile spasms, a potentially catastrophic type of epilepsy. They have perfectly valid prescriptions, yet every month is a stressful nightmare of ineptitude. I’ve talked to MANY TSC parents going through the same thing. 2. In one of my previous blogs I complained about them and made a crack that I hoped everyone who ever Googled Accredo Pharmacy would find my blog. Well guess what? They do. I can often see the search terms that lead people to my blog and Accredo shows up all the time. And not just Accredo Pharmacy or Accredo Pharmacy Complaints, but sometimes even search terms like these:

Better business bureau? Evil? Couldn’t have said it better myself.

The other night I received an e-mail from a mom who has a child with another rare genetic disorder who was on hold with Accredo after nine days of battling to get her child’s medication after they had assured her four times that it would be shipped, but then it wasn’t. She wanted to know if I had ever come across anyone there that could help her. Sadly, the answer was no. The best I could tell her was to find out if the pharmaceutical company had a program to work with consumers, sort of like how patients on vigabatrin can call SHARE for assistance. They did have one and hopefully they will be able to help her, just as I relied on SHARE multiple times to sort things out when Accredo Pharmacy struggled with fulfilling their purpose as a…you know, a pharmacy.

[Update: SHARE assistance program no longer exists. Lundbeck discontinued when generics came on the market. You’re on your own, kid]

Also, the following are comments that have been left by people who have come across my blog by searching for Accredo:

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.

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 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 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.

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.

The following comments were left on my blog after I initially posted this entry. I am adding them here (and I continue to do so as they keep coming):

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 Accredo SUCKS!!

Please oh please keep blogging on this issue. We have been with Curascript for vigabatrin and hadn’t had any issues, in fact, quite happy with them, until this year. (I hear they have finally merged with Accredo, yes, that was my heart stopping you heard) The last three months orders have all had issues, slow response times and finally, it happened, too late. Excuse after excuse, my favorite being that the order was held up due to ‘payment issues’ when our insurance company, without whimper of complaint or ‘prior auth’ pays 6500 dollars a month. How is this an issue and why does it fall on my son to pay the price for your ‘procedures’? So sick of the patient coming last. Considering offering chickens for payment like the old days so we can go back to doctor patient and family without this ridiculous ‘safety net’ between us all. Over it. Sing it Sister!!! Sing it loud!

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.

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. (an FYI from Mixed Up Mommy: two times their screw ups messed up our Saturday because the emergency-begged-for-delivery that didn’t come when it was scheduled ended up falling on the weekend and they said we HAD to sign for it on Saturday even though we didn’t on weekdays. The third time it happened and we had to have 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? It was left on the porch).

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.

I have had the WORST experience with a company I have ever had, Accredo, over medication that I need on a daily basis. I am finding as many places as possible to complain about this negligent company. What horrifies me is that my while my condition is serious, there are far more conditions that rely on specialty script care, and to have this happen, just made me sick. I am changing insurance in 2014, and will have different options, but really I just want to get out of this company’s database.

Unfortunately, I have to deal with Accredo. I have been fighting for my three year olds medication (ILARIS) for 7 weeks. It’s extremely frustrating, every time I call, I am given the run around. I have been working with the ILARIS patient support and they now call Accredo everyday. They are now getting as frustrated as I am. The thing that hurts the most is that you are seeing how sick your child is, how bad they need the medication and there is nothing that you can do. It’s sad! I’m extremely exhausted, frustrated and pissed. My next stop is my local news station.

It is December 4… I have been battling accredo since oct 22 for my ms meds!!! This company is completely incompetent!!! Every call I’ve made they have yet another excuse on why my meds have not shipped! N now I’m out of meds … A med that ur body has to build up a tolerance to .. So now what??? This company is screwing up my health and they could give 2shits. All they say is “I’m sorry for ur inconvenience” … Really??? It’s more then a dam inconvenience when ur screwing up other people’s Heath!!! I hate this company! They r completely unless!!!!!!!!

Acredo is horrible!!! Been fighting for over a week….not only are they incompetent, but the staff there is completely disinterested in resolving issues. My sons been without his medicine for 3 days now…what a joke. If anyone has a contact name or number for someone that can get things resolved at ACREDO, please share!

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 have Multiple Sclerosis and have recently had to switch from CVS Caremark (they were great) to Accredo per my insurance. It has been a nightmare! They have the worst customer service and most cumbersome refill process ever . I am currently WITHOUT meds even though I have been promised they would ship “the next day” for two weeks now. If you can avoid using this pharmacy do it!!!?

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.

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.

These stories sounds very similar to my experiences so far with Accredo. I have Crohns’s disease and have to take a Cimiza shot once a month. Without it, I’ll land right back in the hospital. My information was supposedly transferred in October 2013 from CuraScript. I never received any notification of the merger so I called CuraScript on 10/31/13 for November’s refills and was transferred to Accredo. It’s been all downhill from there. The Patient Care Advocates are quite possibly the worst customer service reps I’ve EVER had to deal with. It’s now 12/16/13 and I have YET to get a prescription from Accredo. First it was an issue with my name, then they didn’t have my prescription on file, then we were back at the name thing, then it was an insurance issue. Honestly, I don’t even know what the issue is now. We haven’t even discussed my pharmacy card/payment yet…but I’m sure that will create yet another issue. Last month I had to get an emergency prescription from Walgreens. Now, I’m late taking my meds again this month and Walgreens is going to have to go to battle with my insurance company if I have to do another emergency refill. What’s really sad is that no one cares. The Representative I spoke with 3 phone calls ago SWORE to me that she would see this through resolution. She never called me back – that was last week (sad that I’m on call #3 in less than a week). Today the rep I spoke with said she’s involved the Pharmacy Supervisor, Monica, and promised me that she would call me before 7pm today. We’ll see. The Walgreens Pharmacist said they have had a ton of problems with Accredo and that Accredo won’t even call THEM back. How terrible is that? It blows my mind that this is their specialty/industry and they can’t get it right. They are messing with people’s wellbeing. Last time I went without meds I racked up $40K in medical bills. I wonder if Accredo is going to pay for that??? CuraScript has been filling my meds for 2+ years. It was rough at first with them but now, looking back, they seem like angels in comparison to Accredo. I’m doing all the research I can and am seeking any help/advise I can get. I don’t know where else to turn.

Yes, yes, yes, yes, yes. We were recently transferred over to Accredo by Express Scripts. Prior to the change, we had delivery on time every single month. As soon as the change was made, the difference was incredible…and not in a good way. In a jaw-droppingly inept way. I have spoken with 15 different representatives to schedule our deliveries and not ONE of them tells me the same thing. One month they completely SKIPPED our order! What I can’t understand is how they don’t understand how they are holding my child’s life hostage??? Last month I had to have Lundbeck three-way call with me into Accredo to demand next day shipment. This is completely unacceptable. I could go on about this for DAYS.

Accredo is the WORST “pharmacy” (use that term loosely) I’ve ever encountered in my 58 years. I’ve been online researching my options and trying to locate governing bodies, etc. and I came across so many patient complaints. I’ll add mine to the pile. Check out complaints on BBB (http://www.bbb.org/memphis/business-reviews/wholesalers-and-distributors/accredo-health-group-in-memphis-tn-15005188/complaints) – I’m going there next to submit to them my formal complaint; I also plan to contact our state insurance commissioner. I will let our employer know as well. In short, I have the same issues with the ‘specialty’ portion of the pharmacy…..for an injectable chemo drug that I use every week (yes, it happens to be expensive … hummmm are they denying and lingering because of their bottom line ???) I never had problems with Medco/BCBS; then it changed to Express Scripts thru United HealthScare…absolutely unacceptable and worse, that they continue to get away with this. File a complaint with Better Business Bureau (BBB) please ! I”m on hold with Accredo – my 6th call this morning, trying to get my medication that was supposed to be here last Thurs ……….. are we in a 3rd world country now ?? I will check back in later when I have more time. God bless you all –

Thank you! I wanted to provide a quick update that might help some other folks out. Yesterday my Doctor’s nurse contacted their Cimzia Rep (Cimzia is the meds I take) and he is getting his company involved in this. I also contacted my company’s Benefits Administrator and she contacted our BCBS Account Manager, who then escalated this even higher. While it hasn’t been resolved, I am starting to get the help/attention I need for the first time in almost 2 months. Maybe others can escalate this as well and get the help they need. If nothing else, I know have a team of people on my side to help me through this as I move along. Before I felt like I had no one on my side – and that’s a terrible feeling.

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.

Accredo must die for light and hope to return to the world. Ever since we too were “upgraded” from Curascripts, we have had many of the same problems already posted here. They call the wrong number and don’t speak to your doctor and use that as an excuse not to send the meds you need. The “customer service” reps and supervisors are incompetent and seemingly proud of it. They refuse to take any initiative to try and help you when your child needs important medication. The only reason they can stay in business is because they know if your insurance company has contracted with them, they have you over a barrel.

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.

Please, someone tell me how to get a hold of the “Big Wigs” at this horrible company! They bought out Carascript (CS), and called me to send me my meds. I did not need them at the time and was told to call when I did in fact need the order. I did just that, I called Monday. They said my script was voided for non-payment (I have never ordered from them), so they blamed CS. I asked them for my said balance, it came back “0”. They said we will restart it, call back in 24-48hrs. It is now Thursday, still has not been handle. I did my own work and had my Doctor call today. Once I called the Accrapdo back they are telling me that it is in process and will take another 24-48hrs. This will leave me with out pills for over five days…I received a Kidney from my brother 6 years ago. You are not to go one day and day two starts the rejection phase (Not always but should not be tested). Lastly I asked them for an over-ride to the local pharmacy and they can’t full fill that either. So, I ask you; “How is Accredo Pharmacy Getting Away With This.”

Accredo is a nightmare. They don’t belong in the business of filling essential, high-end prescriptions. The problem can be summed up by they are inept and/or “give up” at handling or following up any issue no matter how simple that causes the otherwise “happy path” of filling a prescription to fail. My prescription for Enbrel was originally faxed (and confirmed) with Accredo Dec 4th, 2013. Accredo “lost” it and it had to be re-faxed Dec. 18th. After the 18th I called every business day except Christmas (logging hours of phone time) and was repeatedly told the prescription was held-up due to “clinical issues” and that I didn’t need to worry because someone would call me as soon as it was ready to ship. On Dec 27th someone at Accredo finally “properly” identified the problem as missing co-pay information, which I found unbelievable as it had already been provided to them with the prescription and again since then. The prescription shipped Jan. 2nd (after I had stressed all along that I needed it filled under 2013 insurance). On Jan. 13th my ability to place other orders with Express-Scripts was blocked because the co-pay had still not been properly processed by Accredo.

Oh my goodness! I really hate seeing that everyone is having all these problems, but it makes me feel less alone! My son has a grocery list of health problems and one requires a specialty medication. OUr insurance carrier requires that we use Accredo (which recently bought out our much better more competent company) I have been struggling for a FULL MONTH to get his prescription filled. (Still no joy). I have called every day, my doctor has called and my insurance company is now involved. The standard answer I received was “your prescription is in process” or “we should contact you withing 24 to 72 hours”. Fortunately, we may be able to get the prescription filled through CVS until Accredo can “catch-up”, but we have no choice but to stay with them. You can work with your insurance companies, if you haven;t been able to get your prescription filled within 72 hours of the date your MUST have it filled call them and you can(maybe) have them send a prescription to your pharmacy as a stop-gap measure. Good Luck!

We switched to Accredo last year (2013) in Jan and have had nothing but problems. My daughter is on Humatrope, which she has required almost since birth. For 21 yrs we have dealt with other specialty pharmacies without even a small fraction of the problems we have had w/ Accredo. (Pronetics was the absolute best!!!!!! See more below.) I am a physician and I have NO IDEA HOW ACCREDO is allowed to continue its incompetence, when it is adversely affecting so many people. I believe it will take one of two things: 1). A large news show (e.g. 60 Minutes) looking into Accredo’s substandard business practices. or 2). An actual congressional investigation.!!!! I seriously wonder how many people (children) have died as a result of Accredo’s lack of caring, no compassion, and phenomenal incompetence. ONE THING FOR CERTAIN… NO ONE WHO WORKS AT ACCREDO HAS ANY LOVED ONE WHO NEEDS MEDICATION THAT IS DISPENSED BY THEM !!!!!! Maybe there will be some poetic justice and someone near the TOP at ACCREDO will have a child or grandchild born with a serious illness requiring specialty medication. MAYBE THEN…. JUST MAYBE, someone will seem to give a damn. Until then, I suppose corporate profits, lack of intelligence, and/or sheer unadulterated stupidity will continue to rule the day at ACCREDO. The problems I have had are almost exactly the same as so many of the comments above. If anyone is interested, I’ll be happy recount my sorrows, frustrations, and infuriating hours spent dealing with ACCREDO, too. If anyone who has had severely adverse circumstances caused by the delay of their loved one’s medications, I strongly suggest you file a lawsuit. I will venture to say there are probably 100′s and 100′s of people who might be brought into a class-action case against Accredo. This kind of lack of ability to properly handle medications as important as these, should NOT be allowed to be handled by such CRETINS. It is CRIMINAL what they have been able to do. In fact, i wouldn’t be surprised if the name ACCREDO comes from the base-root CRETIN somehow. I am so sorry to hear there are so many other individuals who are suffering in the same way due to this company’s lack of competence, proper leadership, and concern. Doctor Steve

This Company is CRIMINAL is they way there are running this pharmacy, putting patients lifes in danger, My script has been lost in a Black hole since Dec 23 2013 and its Ground Hog day with them everyday, I Call. Glad I found your blog I thought it was just me. I get this same response from them we are processing it will call you. or it’s being processed. I think the stock holders need to have a light shined on the way this company is being run.

I just had my first contact with Accredo yesterday. Our insurance now requires us to fill prescriptions of Remicade with Accredo. I called Accredo to try to find out how their system works: how they receive prescriptions, turn around time, what’s in the shipment, cost, paperwork needed, etc. I got hung up on 5 times. I thought I was just having a bad day, but after reading of the experiences of others, I am now warned, and ARMED. My insurance company will be receiving my complaints and a copy of this blog. Thanks you so much for complaining. To have a company that provides life-saving medication be so incompetent and rude is beyond excuse.

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. And, as a side effect, they will put small trustworthy pharmacies out of business. How inane.

I have experienced every one of these complaints and then some with Accredo. My issues started in May and I have not had one smooth transaction since. With the amount of time and anguish I have spent with this company I should be compensated for doing their job for them! It is so frustrating to read these stories and though missing my doses of medication is not life threatening, is sets my condition back months and even then, I can’t get back to 100% remission. Something needs to be done with this company. I have researched and researched and I can’t find any evidence of someone taking this to the legal level. So until that happens, I will continue to spend countless hours and days dealing with this inept company.

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!

ACCREDO is a nightmare! I am a nurse and have a husband and son who require medicaitons from a speciatly pharmacy. We changed insurance companys on January 1st and I have been fighting for our meds almost daily. I have provided all information needed to them including credit card for billing yet they have every excuse to not fill our meds.
It is now the weekend and my husband is out of medication. His medication like many other medicaitons requires daily doses not to be missed without risk of severe side-effects. I spoke with a Pharmacist on friday evening regarding the doses my husband would be missing over the next 4-5 days. He advised me that we need not worry becasue the medication does not clear the body for atleast 128 hours, although I pointed out not at therapuetic levels, to which he agreed! My husband has a mutated version of his disease and is at increased risk of severe complications. The pharmacist agreed that this medicaiton was especially impmortant for him but there is nothing they can do. Within one hour of speaking with the pharmacist I received a phone call requesting $1000 payment to proceed. We were told emergency shipment would then be setup with earliest delivery by Wednesday! This was after weeks of phone calls and 4 phone calls throughout the day begging and screaming at them. My orginal request for refill was 1/9/14 and we are hoping to have his meds by 1/29/14, which I doubt will happen!
This is going to be a long year dealing with ACCREDO!

I want to start a class action lawsuit with Acreedo pharmacy and maybe even Express Scripts for even using them as their ONLY specialty pharmacy. They are an awful specialty pharmacy that is responsible for sending my son his very important medication. Since they became my son’s pharmacy for this med it has been nothing but trouble. The people are incompetent and no one knows why anything happens. I have searched a few sites on google and I find several of the same complaints and even people asking about attorneys they can use. I think it will be very lucrative for you if you start this class action and I as well as i’m sure plenty others want to be named as the victims in this suit. My son is 7 and he needs his meds but every month now he is getting less and less treatments due to clerical and unexplainable errors and it’s not just me and my family, it’s the families of many others please help me in getting this done as I feel they should either get there act together or close as a business because I feel this is a malpractice. This is the message I placed on Morgan and Morgan’s website. HE is a class action attorney in Memphis, TN. I’m sure they will call soon and I am grateful of you starting this blog to let me and my son’s father know we are not alone in the struggle just to get a prescription filled. Join in me and i’m sure soon to be many others in stopping this soory excuse for a specialty pharmacy before someone gets hurt.

Accredo is horrible. I am in the process of having our sons prescription taken away from Accredo and moved to a more reliable pharmacy. Our son had a liver transplant Oct, 2013. The previous pharmacies were wonderful! However, once I changed to BCBS, I was told we HAD to use Accredo even though all of the other medications go through the previous specialty pharmacy.
On 1/3/2014 I placed our 1st order. It is now 1/31 and we have YET to receive the medication he is going to need for the rest of his life! I have placed the same order 5 times and each time our request is cancelled for one reason or another. I was finally told today (by their own employee!!) that they keep a limited supply of the syrup needed to make his medication. Can someone PLEASE tell me why we are being MADE to use a pharmacy that does not even carry his medication on a regular basis??? This is crazy!
Today I have spent 3 hours on the phone with BCBS, Express Scripts and Accredo at the same time. Express Scripts kept BCBS and I on hold and never came back. After an hour, BCBS suggested we call the State, which is exactly what we did. It is now with The State Benefit Plan. In the meantime, we are writing letters to the BBB, the president of each company, the attorney general and The Department of Health. Next is the news!

WOW!!! I am not alone in this madness! But I am to the point of going postal on these ignorant, incompetent idiots! Does Accredo (Memphis) really have that much trouble hiring qualified individuals? or are they so cheap, that’s the only type of employees they can get? My husband has Hep-C, and the medications were ordered the first week of January. His prescriptions are for Sovaldi, Ribospher and Pegasys. I went through the process of getting financial assistance through McKesson for the Sovaldi, and the PAN Foundation for the Pegasys, and have given Accredo their billing information ATLEAST 10 times. The orders were finally shipped on January 22, it took 3 weeks for them to fill the prescriptions because of constant screw ups. I made countless calls, spending countless hours of hell with them just to get the meds, then they switched the billing information, so now my account shows a $4700 balance that has not been paid, therefore, we cannot receive ANY prescriptions until they pull their heads out of their behinds and get it right!!!! I called AGAIN this morning after giving them the billing information AGAIN two days ago, and the balance is still there. I spoke to someone here in Arizona this time, she was very helpful, and said she would take ownership of the issue, present it to a supervisor, who hopefully is as considerate, and gets it done right!!!! Great customer service is a thing of the past, funny, because this is supposed to be a time when it’s all about great customer service.

I appreciate you posting Jennifer Luddy’s email address. I sent her an email when I was at my wit’s end and received a call from Express Script’s customer department. The man’s name was Owen and he was very compassionate. He took a great deal of time walking me through the various phone calls which were logged into his computer. Out of that discussion SEVERAL poor practices on the part of Accredo came to light. It became extremely clear to me that whoever put the public interactive practices in place at Accredo has ABSOLUTELY NO CLUE ABOUT PEOPLE OR THE WAY THAT THEY LIVE IN THE 21st Century—or even the 20th Century, for that matter. From Robo calls that do not allow one to speak to a human being, but automatically connect you to a queue, waiting for a representative, WITHOUT EVEN IDENTIFYING THE NAME OF THE COMPANY OR THE REASON FOR THE CALL!!!!, to placing 4 such robo calls in a month (again no human to human interaction) before deciding that the client must not want to medication or has gone elsewhere for it—-are shear insanity. Who in the world these days is not busy and sits day after day by the phone waiting for an anonymous call to come in, which automatically puts them in a queue, often making them wait for 10 to 15 minutes or more before they even know who is calling???? Maybe if you are disabled or unemployed or are independently wealthy and sit around with nothing to do or occupy your life! And, if you hang up, because you are at work, or don’t even know who is calling, the computer logs that as the costumer did not want to talk about their medication needs. I was finally told that I could get some one on one service, like I have been used to from other specialty pharmacies over the past 20 yrs of ordering my daughter’s medication. However, when contacted by that person who was supposed to be available to help me order the meds, I was told that she would only be able to do so ONE TIME, with the next order. (Other companies had assigned us a personal rep who knew the status of our meds, needles, alcohol swabs, etc. and called, left voice mail messages and were EVEN AVAILABLE TO SPEAK ONE TO ONE, and had extensions and voice mail themselves!!!) This ONE TIME helper gave us a phone number and an extension, too… But, when we tried to use it, it took us to another queue, where we were not able to talk to the rep in question.!!!! I call that slight of hand. A shell game. Tell the customer what they want to hear and don’t change a thing. And, the robo calls? We were told they can’t be stopped. We would just have to ignore them while our personal rep helped us (for one month) HA! When we tried to get the medication first we were told it would be shipped on a given date. When that date came and went without us getting a call, we were told it was held and the shipping order cancelled because a deductible was owed. When a credit card was given, we were told the med would ship right away. But, when the day came and went again (w/o a call from Accredo), it turned out it was cancelled again bec a new prior authorization was needed. When the doctor’s office called us again WITH ACCREDO on the line, Accredo would not approve the PA because they had a different zip code than the doctor’s office. This was the same zip code problem which had been discussed and supposedly rectified a MONTH BEFORE. Again promises came and went. (This is just a part of the insanity that went on in Dec 2013 and Jan 2014. Luckily I called my insurance benefits administrator, who connected me with the company contracted to administer our pharmacy benefits. I was told that I did not HAVE TO USE ACCREDO!!!!! That my policy allowed me to use ANY SPECIALTY PHARMACY that was in network…and there were hundreds! IT WAS A GOD-SEND. We are in the process of changing back to the specialty pharmacy we have used for close to 20 yrs. They know what customer service is. They know how to run a company. ACCREDO needs to be shut down. It is an abomination to the world of specialty medication. And, btw, Owen, if you should ever read this, take my advice CHANGE TO ANOTHER COMPANY!!!! Your customer service talents are being wasted. Accredo has no business being in business. There are NOTHING BUT A BUNCH OF IDIOTS WORKING THERE. As for other parents and patients having to ENDURE THE INEFFICIENCIES and INEPTITUDE of ACCREDO. Do yourselves a favor. Check with your benefits department. You MAY NOT actually have to subject yourself to this torture. You may be able to chose any specialty pharmacy you wish. CAN YOU IMAGINE SUCH A BURDEN LIFTED OFF YOUR SHOULDERS! For us it is like dying and going to heaven. Hopefully, ACCREDO will be shut down one day by govt regulatory agencies, or perhaps in his benevolence God himself will send a bolt of lightening down and torch the whole damn organization!!!!!!!

I have an aggressive for of rheumatoid arthritis and need a daily shot just to be able to walk in the afternoon. They apparently have 3 accounts in my name, and my prescriptions are getting lost between the three accounts. Not only that, but my prescription is for a 90 day supply but they only ever send 30 day supplies so every couple of weeks i have to play phone tag with them for an entire week, my doctor office as well can’t get a hold of them and 3 months ago they knew about my 3 accounts and the situation has yet to be resolved….Can accredo be held accountable for lost days of work because of their ineptitude to fill prescriptions in a timely manner? They have caused undue stress in my life that is inexcusable… It is a crime that these people are failing in their responsibility to the people that rely on them so much….

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)

I am SO happy to have found your blog (thank you so very much for providing this forum for us), but also horrified that SO many people are encountering the same issues with Accredo Specialty Pharmacy and yet they somehow stay in business? I have to use Accredo Specialty Pharmacy for my Cimzia prescription which I take for my rheumatoid arthritis. It is not life-threatening if I receive my meds on time or not (like some others that have commented) but I am also undergoing IVF for fertility issues, and keeping my RA under control during the IVF cycle is a critical component to the outcome of the IVF treatment. It’s extra important to have the RA well controlled during the period of time following the embryo transfer. Well, during my last IVF cycle Accredo Specialty Pharmacy screwed up the delivery and it arrived almost 2 weeks late and meant that I was not properly medicated during the post-embryo transfer phase. Although I initially had a positive pregnancy test, I very soon after had a miscarriage and obviously there’s a part of me that wonders if I had been properly medicated would the pregnancy have stuck. Now we’re on our second round of IVF and had the embryo transfer last week. I am due for my next Cimzia shot this weekend and, after an hour and 15 minutes on the phone with Accredo Specialty Pharmacy, I learned that I “may or may not” receive my medication this weekend. The extra frustrating part about this is because I had the issues with Accredo Specialty Pharmacy not delivering my medication on time during my last IVF cycle, and not wanting to risk not receiving my dose on time this time, I started calling Accredo Specialty Pharmacy 3 weeks in advance of when my next shot was due. Yet, somehow I’m still at risk of not receiving it on time, and based on the incompetence they’ve demonstrated so far, I am not confident it’s going to arrive on time, which will again put another IVF cycle at risk. Thank you Accredo Specialty Pharmacy for making an already stressful time in my life extra specially stressful. You guys are special.

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.

Just today found your blog and this forum. We have fought with Accredo/Express Scripts for years. Fortunately for my husband, his meds are for psoriasis and not a life threatening disease. However, the stress of fighting for your meds month after month makes any disease worse. We spent the winter months in Texas at our daughter’s home to avoid the horrible Ohio winter. Both January and February shipments arrived at her house on time. When we ordered the March shipment, my husband made it very plain that it was to go to our home in Ohio, NOT our daughter’s home in Texas. Guess what? The meds went to Texas! That was last Wednesday and today is Saturday. They are still “looking into it.” We’ve been on the phone to them 3 different times, each time turned over to a supervisor who tells us there is nothing they can do until they assess who is to blame. We should have had our daughter ship them to us, but foolishly thought Express Scripts would take care of the issue.
Also we receive assistance from Enbrel Support and each month they say they can’t ship our next order because our bill hasn’t been paid. When we ask if they billed Enbrel support as we asked them to do, they do so and we have to wait again for the shipment. How on earth can a business run this way? Especially one involving medications! If anyone finds a solution please let us all know!

Sadly, it appears the only “solution” to the problem of Accredo pharmacy and it’s incredible ineptitude in business will be to put the purchasing power back into the hands of the consumer. When the people who are receiving the medications are the ones deciding where they are going to go for their business, Accredo’s doors will close so fast it will make the executive’s head’s spin!! —Until then, the only thing that you can try is to talk to your Benefits Administrator and tell them how unhappy you are. Many people are finding–like me–that “specialty” pharmacies are secondary to their insurance plan’s assigned or required pharmacy. You may have a large choice of specialty pharmacies available to you. I am still of the belief that no company wants to pay large amounts of money for health benefits only to have their employees forced to deal with total imbeciles like those who work and manage Accredo. If they can do so, they will give you another option. And, if enough people complain, Benefits Administrators all over the country will put a stop to Accredo’s ability to magnify the pain of disease by not giving a damn about the people behind the medications. The ONLY way to stop ACCREDO is the old fashioned way capitalism used to work: “If you give poor service; if your workers don’t know what they’re doing; if no one department at your company has any idea what the other departments are doing; if you are not set up to be helpful, accommodating, personable, or user friendly, your business fails !!!”
Thankfully, our family was given a choice. We now work with a specialty pharmacy that is wonderful. I hope you and others will be able to do the same. —One day I suspect Accredo will be studied at business schools across the world as the ANTITHESIS of how a GOOD business should be run. After all, the fact Accredo ever existed should be of some benefit to someone on earth! (I am an optimist…what can I say?)

I am very disturbed by what I have read here. Have most of these problems started when Express Scripts took over MedCo?? I was scared that they would screw Accredo up when they took over. I have been getting my daughters growth hormone for years from them and have had no problems. I had to deal with CuraScripts previously which is Express Scripts specialty pharmacy. They were a nightmare. I am currently starting to see issues with Accredo. They constantly tell me that my daughter’s doctor has not sent in a new script when I need to order. I know that this is not true because her doctor employs someone full time to take care of the patients scripts with the pharmacies.

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.

I too sent an email to Jennifer Luddy. After a few days she emailed me to ask for an ID number and contact phone number which I sent. We never heard from her again. Two days ago (1 week after being told someone would call us back in 24-48 hours!) we called for the fourth time. This time we got a very polite lady named Amanda W. who was properly horrified by our recent experience. She spent 40 minutes on the phone with us and finally got things straightened out. She kept apologizing for everything that has happened over the past week, but was really not in a position to do more about the problem. We should have the meds soon, but by then my husband will have missed 2 doses of his once per week requirement. I guess our next step is to contact our insurance company to ask if we can use another pharmacy.

Google led me here. It is nice to know I am not crazy or overly hyper in thinking Accredo sucks. They just don’t know thier ass from thier elbow. Theyve lost my script, forgot to send it as well. I had given them my info at least 4 times and they say it still isnt correct. Are thry frikkin playing candy crush while they are on the phone with cusomers? Sorry. I had a copay free program before my script got moved over to them, and now I don’t. I have nothing complimentary to say.

I also found this via google. I have crohn’s disease and was just placed on Humira. Our insurance company told us that Accredo was our specialty pharmacy, so we called and everything seemed to be in their system no problem. Since I’m currently fairly ill my file was marked urgent and they told me that my medicine should be ready to ship in three to five days. Two weeks later we finally had to call them. They told us that they had only gotten a prescription for my maintenance dose, not the loading dose and didn’t have prior approval from my doctor. The original prescription is just for a loading dose. So I had my doctor call them and get everything authorized and they told me that they would be calling me the next day (Friday) to arrange a shipping time. Well, the following Tuesday we called again. It turns out Accredo had voided my prescription because they hadn’t gotten the prior approval from my doctor. It has been over two weeks, I am so sick I can’t leave the house, and it has been so ridiculous that we’re switching to a different pharmacy!

I have been in Accredo Hell for 3 years. This is what i have learned. Everyone needs to contact a reporter to get this out in the public. Look on line for any consumer reporter with USA TODAY, Wall Street Journal, and major publication.
Email Brian Henry- bhenry@express-scripts.com and let him know enough is enough and we are all going to be emailing reporters.
Call presidents number and leave a voice mail- you will never get a human being.
1-800-871-4663.
This has got to stop.

I have never in my life seen so many complaints on one company!! I am rapidly losing confidence in Accredo. If they screw up the shipment of my Hizentra Shipment one more time – I have told them today that I will be writing to the BBB and to my immunologist. I will also notify medicare as they pay for it. I do not need to return home and see the box sitting on the front porch in the sunshine – it is HOT here in AZ and I do not care how ,many icepacks they need to deliver to back door, and knock and get my bsignature. All of these directions appear on the list of supplies inside the box. Unfortunately UPS does not have x-ray vision. When the supplies were ordered I said, twice, put these directions on the mailing label, and into the mailing address so that UPS will deliver the shipment as requested and to also pay attention to the date delivery is to be made. THEY DO NOT PAY ATTENTION. IT IS IN ONE EAR AND OUT THE OTHER IN THE CUSTOMER SERVICE DEPT. People like this work for the VA – where a sense of caring is minimal. I suggest they go there. They will fit in nicely. I am dealing with a forest fire, out of control and approx. 20 miles away. I am trying to recover from pneumonia. I do not need to be bothered by Accredo’s goof-ups. They will get my complaint in writing – as well as a phone call. And as many times as necessary. If there is another screw-up by customer service [why don’t they call it Customer Neglect?} I will do my best to get my prescription sent to another company. Hang in there folks and write those letters. Dottie in AZ

I too am on MS medication. I switched insurance to Anthem BCBS and their specialty pharm is Accredo. Accredo refused to acknowledge my existing prescription. I even had US Biogen fax over, and my prior specialy pharm fax over. Accredo would not accept, I HAD to get a new prescriptioin from my doctor they said. Well, good luck getting a fast appointment with a neurologist. Anyway, within a week I saw my Dr. and got the new prescription. Now I am waiting for “prior authorization” before they can fill my prescription. Do these people realize, we are on only a 30 day supply. I have now run out of my medication because of Accredo playing games with MY HEALTH. This is not right.

I can’t believe I just found your page. I was in Accredo hell for about a year and I just stop using its service and my medicine. I have written everyone including my Senator to no avail and its as if no one cares either. I am so sorry this has happened to everyone because I know many of you can’t stop taking your medicine. I am somewhat comforted in knowing I am not alone. I have felt so alone in this. Thank you for your post!! Hi all.

I am also having problems with them to. My sons meds were suppose to be delivered last weds.They never showed up.He had his last shot that day .called them Thurs. I was told my insurance doesn’t cover it anymore.They couldn’t even contact me Weds. to let me know.Now it is a week later and he still doesn’t have his meds. I have called them everyday and keep getting the run a round.My son takes other meds. If he doesn’t have one his levels are off. He can have a grand mall seizure which could kill him .I have express this to them and they say WE CARE no they don’t. If anyone can direct me to another phramacy I would be very thankful. Someone please help me.

I’m an RN working in an outpatient department in a hospital who (along with one of my patients) finally got fed up with the HORRIBLE service at Accredo. Every month we’d get the run around when trying to reorder Xolair, and countless times the patient would not get her 28 day injections at the 28-day mark. Well today I almost cried tears of joy when I called to let them know we would no longer need their services, I can now order the medication elsewhere. In 25 years I have never dealt with anyone in healthcare who cared LESS about patients than Accredo Pharmacy.

I’m glad I found this blog. I was wondering if it was just me but I can see this is a clear pattern of poor services from this company. For those using Accredo that have insurance through Anthem Blue Cross/Blue Shield, I’ve created a Change.org petition asking Anthem to either drop Accredo or provide customers with an alternative choice. https://www.change.org/p/blue-cross-blue-shield-drop-accredo-express-scripts-for-specialty-drugs-or-provide-customers-an-alternate-choice-for-filling-medications

Accredo is the worst mail order pharmacy I have ever dealt with. Everyone seems to be on a different page and operating under their own set of procedures and policies. Everytime I call to get my prescription filled, I am told something different and inconsistent with what I was told by the last representative. It takes at least 45 minutes to an hour to place my order or even answer a simple question. There seems to be a lot of confusion and incompetence among the staff and I dread dealing with them each month. They are, indeed, a nightmare! Luckily I am only on a six month treatment so I will not have to deal with them much longer. I feel for others who do. I will look into another pharmacy in the future if needed. Unfortunately, my insurance only pays for certain pharmacies to fill specialty drugs (only 2 or 3 are on the list) and Accredo is one of those. They still have not filed the first claim with my insurance company after five months of treatment. I am afraid I may get billed in the end but I don’t have the energy to address this too with such an incompetent staff. It’s all I can do just to get my prescription order filled. They could benefit from some organizational restructure and retraining!

Accredo Specialty Pharmacy, division of Express Scripts is absolutely the most rude and inefficient company I have ever come across. And they don’t have to serve customers, Customers come automatically because they’ve gone to bed with insurance companies creating a legal monopoly in southeast states. Also, the drug manufacturers helped grease the skids to pass laws so that there can be NO generic versions of many specialty pharmacy drugs (mine Humira). I would pay extra just to get my Rx away from Accredo. Hoping search engines pick this up so they get fired!

Worst. Company. EVER. I have been getting Xolair from them for about a year now and I have issues EVERY SINGLE MONTH! At one point they didn’t ship the sterile water needed for the injections because they needed a prescription from my doctor (which it used to always come with the supply pack). So my doctor submits the prescription right away. No problem, right? Lo and behold, they never shipped it. A week later I called to see what was going on and the service rep says, “Well, I see where your doctor put in the prescription, but he never called to tell us to ship it.” Now why on earth would my doctor need to call to ask them to ship what he just sent in a prescription for?? So I told the guy, “Hey…you really need to let the doctor know if there is a requirement for him to turn around and call to tell you to ship what he just asked for.” And then the rep tells me, “There is no requirement for him to call.” To which I reply, “But you won’t ship it unless he calls?” And he says, “right’. So I’m back to saying he needs to let the doctor know if this is a requirement. And he once again says it’s not a requirement. So I say, “But you won’t ship if he doesn’t call”. And he says, “Right…but it’s still not a requirement.” I told him the doctor wouldn’t have submitted a prescription if he didn’t want it shipped, to which he said, “Oh…it happens all the time.” *boggle In August I was supposed to have a shot delivered for the 3rd, 17th and 31st. I got the 3rd and 17th, but not 31st. They said they called my doctor’s office on the 31st during lunch (when I should have gotten the shot) and left a message but they said no one called back. They didn’t bother calling me or the doctor’s office again until yesterday (the 10th). And because we’re almost 2 weeks away from when I should have gotten the shot, they are simply skipping shipping the one for the 31st because they say they can’t go back in time. Which means I will have missed a round of my shot completely, which is a problem since this medication builds up in my system to help. They are adamant that they will not ship this missing dose from the 31st. Unbelievable. I told them they are NOT the doctor and that their orders are for Xolair every 2 weeks. If they missed sending one, they need to send it. My doctor will decide if he wants to give me 2 at once or 1 ever week for the next 3 shots. It should not be up to them. They should simply fill my freaking order. I HATE THIS COMPANY!!!! It’s been something like this every month. And Express Scripts isn’t much better (the company that forces me to use Accredo).

Here is a blog post from a woman battling RA without her meds thanks to Accredo.

And another post from a woman who has a daughter dealing with cancer.

*I’m no longer adding new comments as they are still coming in almost two years later, but they are there to read below. Please share your story. It IS being read by someone at Accredo.* (I mad an exception for a supposed CVS employee at the end of the post.)

This is disgusting. Trust me, people who are dealing with an illness or a family member with a health problem have enough on their plate. Even though Accredo is no longer my personal problem, they added a great deal of stress to my life when I had more than enough going on. If you are on a medication that requires use of a specialty pharmacy, it’s probably a pretty damn important med. An it’s either not available at your local pharmacy, or your insurance isn’t allowing you to get it there because they get a better deal with the mail order pharmacy, as is my case with Connor’s Onfi. I now get vigabatrin through Caremark and Onfi through Optum RX (not to mention Keppra through the local CVS, arghhhh…so fun to keep track of). Thank God Caremark and Optum have thus far been able to provide Connor’s medication without making my life hell. And believe me, if that ever changes, you will hear about it…

Yeah, buddy. Tell me about it.

Update 5/19/14

I received this comment today from an employee. I appreciate this person taking the time to comment.

I have just recently started working for Accredo and although I have not heard of any of these medications and am not working in that particular department I love my job here and am very distressed hearing the different scenerios. Just a FYI I have a problem all the time getting what I need from the physicians office to get my patients authorized. Example I requested clinicals on a patient from her MD’S office..I waited three weeks got every excuse there was.Finally I received them AFTER her authorization expired. I have lots of stories like this..Though I am sure evryone of your stories is a nightmare for you and your family sometimes it is actually the patients MD’S office that is holding up progress. WE can not move foward with out them. I have waited days/weeks fro prescriptions, clinicals waited for the MD to actually call the insurance company. So many different scenerios. Just wanted to put alittle perspective out there. My patients and their well being is the most important thing to me. But sometimes our hands are truly tied. Prior Authorization Represenative

My reply:

Thank you for your input from the inside. I think there are many cases in which you are absolutely right and there are issues coming from the doctor’s office dropping the ball. What really got me going on the issue, however, was my personal experience in which even basic refills were problematic. I have never had an issue getting my refill from Caremark, but it was a monthly issue with Accredo. I know I’m not alone because this is a frequent topic of discussion on the TSC boards. I can verify beyond a doubt that there are major issues with Accredo’s system. One of my refill issues that I detailed in a different post came from them all of a sudden reverting to calling an old practice for my son’s dr. He had not been at that practice since we started seeing him and they had been contacting the correct number. All of a sudden our meds don’t show for scheduled delivery and the day, and with no prior notice, I’m told they haven’t been able to contact the dr for authorization due to refills being used up. I don’t know why they spent two weeks calling the wrong place when they had been in contact with the right place before, but I set them straight on the contact info. Still couldn’t get meds. Nurse practitioner called for me. They still had the wrong info. I called again the next day — after recruiting the Lundbeck Share program for help — to see where our meds were and they STILL had the wrong information. Every time there is an issue, nothing is ever noted in the system. So you start from scratch with every single call. While every issue may not lie with Accredo, I do find it interesting that I have never had the issues with Caremark or Optum Rx that I did with Accredo. Admittedly it’s anecdotal, but Accredo is known as the devil pharmacy in the TSC community. I have never seen near the complaints with any other place. It concerns me that so many complaints are coming in for so many important meds. I follow links back to see how people are referred here, and have seen similar discussions on other health boards of outstanding problems with Accredo, most recently an HIV discussion board.

I know many moms from my online community that are reduced to tears on a monthly basis trying to get their meds. Thank you for being so concerned for your patients. Unfortunately, many of us feel like you are the exception and not the rule.

However, this employee has a different take:

Hello. I cannot say my name since I work at accredo but it’s all true! I have many years experience in the medical insurance industry as well as pharmaceuticals and it totally scares me how they have not been sued down to their last nickel. I’ve seen Rx’s for transplant medication prescriptions just sit while a patient goes without and we as representatives are not allowed to fix or do anything. We have to “create a task” to request something corrected or processed or anything else needing to be done. I’ve seen orders be cancelled for no reason and some just not ship out. All the company cares about are numbers and quantity verses quality so if a couple hundred orders go fine it’s no matter to them if one does not! There are HIV patients who get the run around also. Yes, insurance companies do delay their prior authorizations and yes they also deny claims too but as a specialty pharmacy more care should be with quality and accuracy. They flat out do not train for the type of job and for sensitive meds and nothing is done to coworkers who make mistakes constantly or give wrong information. I pray everyday to be able to help my patients as they are often fighting to live and that my employer will even just care about that. I am hopeful for tomorrow.

My response:

Thank you for the additional information. I’m happy to add your comment to the post to add some more perspective to the situation. Unfortunately, the average patient isn’t going to know the ins and outs of the merger and who is who–all patients know is that they’ve been assigned to Accredo pharmacy. If indeed people within Accredo are trying to improve, that’s fantastic. But unfortunately at his time this is what many people are experiencing when dealing with them, even if it isn’t the original management’s fault. ESI/Curascript may be at fault, but they are destroying Accredo’s name in the process if that’s the case. Asking for supervisor seems to be met with mixed results–sometimes successful, but not always.In talking with people in my groups, it seems like sometimes they can get assistance for one problem, only to be met with the problem again the next month. When exactly was the merger? I’d like to add that to my post so I can clarify for readers so they can compare their experiences before and after.

Update 10/10/14

I was contacted by a reader who has formed a Facebook group to collectively combat this issue. Please join and share your story here.

Update 8/16/16

This continues to be a frequently-read blogpost. I know there are people who have issues with Caremark, however, I can only speak from my experience –and share the experiences I am sent. These comments were left on my blog today by someone claiming to work for CVS. I can’t help but suspect this is really an Accredo employee, masquerading as a CVS employee, but I don’t really know. Either way, this is the sort of person who is a problem in these companies. If this person thinks nothing of taking a handicapped spot and belittling the people who need them, there is no way this employee can comprehend just how serious the issue is of not getting lifesaving medications on time.

Comment 1: I don’t see anywhere to email you this, but I saw your blog post from 2013 in which you said this: “I was so frustrated that I started looking into whether there was some sort of governing body to report them to, but just as I did that, lo and behold, our insurance had us switch to the far more competent CVS Caremark mail order pharmacy, so I never pursued it.”
I was curious as to the amount of “care” you are getting from Caremark, because I work there and I hear the same thing albeit in exact reverse. “Accredo never did these kinds of things but now they make us use you, I hope you’re ashamed to work there,” are some of the minor things I’ve been told.
So please, prey tell how that is going for you because I really don’t want to spend any more time searching your blog, because it’s parents like you who can make someone trying to make an honest living mad enough to write about it on some lady’s blog post. This is me in real life, now if you called me I wouldn’t know it but do you know how many times people take this stuff out on the people who can’t even fix it?!!
I’m sorry to hijack your handicap parking post, maybe they just forgot it, never bothered me once, or maybe it would be nice for you to park way at the back sometimes for some fresh air for your son, but what does bother me is you having a blog post about how bad your experience with express scripts or accredo was and then was switched to Caremark, whom you deemed more competent. Well tell that to the people that like to take their frustration out on people like me, who just get paid $13/hr to hit some keystrokes so your meds go out. You should be ashamed of yourself, being a mommy and all, spreading that crap. Yeah it was from 2-3 years ago but people still read it. Take it down for the sake of people like me, because I bet you won’t tell me where you work, or husband, so I can go complain about the crappy service we ALL get at one point. smh

Comment 2:
I’m sorry, but the fact that you need to approve who can post on your blog is straight up wrong, again another reason to be ashamed. You really are mixed up I guess.

Comment 3: My comment still won’t show on your latest blog post about having to walk a few extra feet with the whole handicap thing. Your express scripts post disgusted me, and I don’t even work for them, I work for Caremark in Monroeville PA and I take calls all day from people like you. Except they say “I wish our insurance didn’t switch to your company, Express Scripts was so much better. Yet you publicly said that going to Caremark was a saving grace or whatever it is you said. So which is it? None of you get it, some do, but most don’t. And you, mommy, need to post or approve my reply because this is a public blog and people need to know the truth about your fraudulent claims. I will keep bothering you until I get a reply. phasedance@gmx.com

Why I stopped working with mail order pharmacies (kevinmd.com)

Parenting, Tuberous Sclerosis

Guest Post – Mixed Up Mommy

November 10, 2013 Rebecca Gaunt 2 Comments

Savanna's Journey

Infantile Spasms are not diagnosed early in many cases due to a lack of knowledge, even by physicians. I am not putting any blame on physicians, but the fact is that this is so rare, most practicing pediatricians simply won’t even see a case in their career. Parents are almost always blindsided by such a diagnosis. In some cases, a family has warning of a symptomatic onset of this epilepsy. All scientific evidence indicates early diagnosis and aggressive treatment gives the patient the best chance at the not only stopping the seizures, but the best developmental outcome as well.

The only thing I have obsessed over more than my son’s tuberous sclerosis complex diagnosis was the possible onset of infantile spasms. Since we had Connor’s diagnosis shortly after birth, we were in an uncommon position of knowing to be on the lookout for this rare and catastrophic seizure type. We…

View original post 998 more words

Parenting, Tuberous Sclerosis

A mommy fail and cognitive growth

November 8, 2013 Rebecca Gaunt 6 Comments

I was on such a high yesterday about Connor climbing the stairs that I could have been the mayor of Toronto. Of course, this morning brought the sobering (though still awesome) reality of this development. I thought I had secured him this morning when I ran upstairs to get something. I stayed for a couple minutes talking to Chris about his progress painting the master bedroom, then opened the bedroom door only to find a toddler charging at me from the top of the stairs. It appears I failed to secure him properly and he followed me up the steps. Bad mommy.

Problem is that we actually tried installing a gate at the top of the steps but it didn’t really go so well as it is wedged between two bannisters and no wall. Same at the bottom. The bannisters just sort of start to push outwards as the door is tightened and doesn’t seem particularly safe, so we will just have to be sure to secure him away from the stairs all together.

But in all my excitement about his motor development, I forgot to talk about his cognitive development. I think I did mention how excited I was when I asked him if he wanted to read his favorite book and he crawled into the play room straight to it. But I have also seen an unbelievable change in his ability to manipulate apps on the iPad. We have several that we downloaded a long time ago at the suggestion of his therapists to teach him cause and effect, but he really just banged on the screen as we tried to help him manipulate them.

He did best with this one, Baby Piano, as it actually does respond well to random banging. In the last couple weeks he has had a renewed interest in it with more careful tapping of the keys.

He also figured out how to manipulate Peekaboo Barn independently. It’s pretty basic, just tap the barn door to open it and a new animal appears each time making sounds. But I could see that he was actually waiting to see what animal would appear inside instead of just hitting the screen.

A more recent download is the Crayola App which allows him to use his finger to color. He just has to touch it to make the colors appear, and I only helped him as far as changing colors for him. And he seemed to notice that I was changing the colors.

But this was the one that blew my mind. During the IFSP meeting this week, his speech therapist put Itsy Bitsy Spider on for him. We hadn’t used that one with him in a long time as it’s slightly more involved with moving characters and multiple places to tap to make things happen. I’d never seen him use it very productively. We either guided his hand or he banged randomly. Without even having seen it for weeks and weeks, he began to carefully watch the spider and tap it at opportune times to make it interact. I could barely concentrate on the meeting I was so shocked.

I had a really vivid dream last night that he started talking. Maybe it was a premonition 🙂

Parenting, Tuberous Sclerosis

Connor climbed up the stairs!

November 7, 2013 Rebecca Gaunt 7 Comments

Connor climbed up the stairs this morning! I almost had a heart attack. It came out of nowhere as we only just introduced it in PT last week. We hadn’t even really worked on it yet. Sure, he goes over to the stairs and props himself up with his arms on the step. He’d even managed to go up one with assistance. But today I was on my computer and I glanced over to the stairs and there he was on the second step. I gasped and ran to the bottom in case he fell, but he just kept going. I did a whisper yell to get Chris out of his office, but not wanting to startle Connor or stop him. He would have gone all the way to the top but Chris stopped him since we are painting (ahem, correction, he is painting) the bedroom and there is stuff all over.

Just this week we had his IFSP meeting with his early intervention team to check his progress and set new goals. His physical therapy goal he was to have met by now, set based on the speed with which he met previous goals, was to be sitting independently with hands free for play. Instead he surpassed that and started crawling, pulling to stand and cruising. And now climbing the stairs!

Here is video of a repeat performance.

I’m wigging out like I just did 27 espresso shots.

Mixed Up Mommy

Monthly Archives: November 2013

Looks like we’re trying the modified Atkins diet.

I’m turning into such a slob.

How I Do This.

I despise mail order pharmacies.

Get out of the way of medical marijuana.

I don’t want to kill my kid, I’m just really fashionable.

How is Accredo Pharmacy getting away with this?

Guest Post – Mixed Up Mommy

A mommy fail and cognitive growth

Connor climbed up the stairs!

Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.

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Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.