Have You Experienced Any Issues Refilling Meds With Your Speciality Pharmacy?

[Colleen]

@jenc I’m relieved to hear you finally got a hold of someone who is helping to expedite this important order. So frustrating! I have been through multiple experiences like this. I now have a case managers name and number who said I can call her if I ever get the run around again. I would share it but I think she is specific to transplant.

I repeat, multiple times, things I need to make sure the person on the other end understands…dosage changes, when I need it by, etc.. I repeat to the point that I annoy myself but I have found it necessary, and frustrating when they still get it wrong.

What I find really aggravating is they tend to place the blame on the doctor’s office and then the doctor’s office claims they did their part. And around and around it goes!

[jen-cueva]

Thanks, @colleensteele; I know that you and most others here have experienced an issue with them at one time or more.

I find myself repeating and clarifying with them often, but I need to be sterner, I guess.

I did receive the Adempas this morning, so I only missed my dose last night. My PH doc and Accredo nurse are all aware. Uptravi should be here later today, but it is not too low. I have several days left, probably a week. I usually keep a week extra for issues like this, but with Adempas, I couldn’t as I was using the previous supply before I transitioned up.

I agree; they tend to play the blame game, and that is not helping anyone.

[Jill Upshaw]

Jen, I had one problem in November. My medicine did not arrive. I had 2 days left. Accredo actually got it to me from Pa. to Tn. in about 9 hours. He told me if it did not arrive, he would send some with a currier. I was actually impressed. UPS had taken my first order to Louisville, Ky. BUT, I was so worried that it would happen again, I intentionally held back one week’s worth that I do not include in my count when I call them. I need that security.

[jen-cueva]

Oh, No, @upshtcx. I know that low certainly must have caused you some increased anxiety. On Monday afternoon, my home health nurse told me that if my Adempas was not here on Tuesday, she would have them bring by courier from Houston.

I will start keeping my extra week as a backup and safety net again. It seems that there is an ongoing issue with them at times.

Thanks for reminding us all to have that stash. I always did that before and had slacked on that with Adempas.

But so thankful that I do have some Uptravi stashed as I found out this morning after calling that it was not delivered again yesterday,. that I now have a $5000 copay, really? And why am I finding this out today when I reordered last Tuesday.? Thankfully the Jansen patient assistance department is trying to work with me on getting that lower and also delivered ASAP.

[Carol Volckmann]

So so sorry Jen you had this mixup happen when our meds are crucial. I also deal with Accredo. From day one (17 years ago) I make sure I am comfortable with the rep helping me and then ask his/her name and extension and email and ask if they would be comfortable if I dealt with them each time.

It has worked out really well 99%. Then they get promoted – when that happens I ask them if they would refer me to someone they trust. I am now working with #4. I would recommend her, but she is now a supervisor – she is still working with me though she should have given me off to someone.

I will ask her who she would recommend and let you know.

A couple of times there have been a few glitches but they have been on top it. These glitches seemed to have happened when Accredo merged with Express Scripts.

I sure hope this never happens again. The anxiety it must have caused you – I am so sorry. ❤

[Colleen]

@cdvol3gmail-com my thoughts exactly, issues started happening when they merged with Express Scripts. Prior to that it was rare that I had any problems when refilling.

[jen-cueva]

I love that tip, @cdvol3gmail-com; having one person to contact would be helpful. I really do think that would help all of us rather t is Accredo or another pharmacy.

Our meds are crucial. Yes, my anxiety level was high on Friday evening and again yesterday. I did miss my night dose last night. They all said that was fine.

I did remind the pharmacist that I spoke with yesterday that this is not aspirin or something OTC; these are meds that we need as ordered, not skipped doses because the pharmacy or doctor’s office can not seem to communicate effectively.

You are so kind and supportive; I appreciate you looking out for me. I would love to find one person whom I can call each month to fill those 2 meds.

Giant hugs are coming your way from Texas.

[Colleen]

@upshtcx when my son had PH his doctor required that we always keep an extra week on hand for any type of emergency or delay that might happen. So I would say that it is very wise to do that.

[Jill Upshaw]

For the longest, I did the exact count and order at 14 days. Now, I check my stash first. Gotta have that safety net for sure.

[Carol Volckmann]

Another tip I learned from the rep I go to at Accredo is never put in a Friday delivery in the event there may be a delay. Use Thursday or better yet use Wednesday giving a day or two leeway. When we were traveling one order was so late and we had already moved on. The rep got approval from our Insurance and sent the order to our destination (UPS store). She really went above and beyond. When you are able to have a dedicated rep working with you, it makes all the difference.

Colleen is Cullen still using Accredo for any of his meds? It seems whenever there is a merger the consumer gets hit with the corporate cost cutting.

Here, after the merger two PH nurses were fired for nonsense and the new supervisor was over her head and incompetent. Patients lost 2 of the finest.

[jen-cueva]

Thanks again, @cdvol3gmail-com, for your help and tips. I never thought of that either. But certainly makes sense. Sadly, I am unsure if any day mattered at the rate they have been screwing up mine this month.

I am grateful to have them supply us with our meds, but sometimes the communication is lost somewhere in between. I am hoping and praying for the best. My Uptravi is good for several more days, thanks to my backup stash.

Oh, I plan to have a dedicated rep soon, thanks to you, Carol. That cannot be soon enough, it seems.

And until next time, on the Lifestyles of the sick and in need of meds…

[Carol Volckmann]

I am so so sorry you are having such a problem with Accredo. I hope and pray this is resolved TODAY!

I do have to admit I have made sure I have a bit of a meds to cover me for a few days just as a safety net. When doing my count I might be in the car when I get the call to reorder, so my count might come up short … when my order arrives now I have a few days extra.

Fingers crossed ???? you get everything you need right away.

[jen-cueva]

Thanks, @cdvol3gmail-com; I am hoping that my Uptravi arrives tomorrow morning. I did usually have enough for almost a week’s backup. That is what has helped me with my Uptravi.

The Adempas , I did not because I was using the remainder of an older order.

Also, thanks for suggesting having a dedicated CSR to reorder meds. It sounds like that’s already in the works. Sadly, yesterday afternoon, I frustrated 2 managers as they both wanted to start that blame game. I said in my not-so-sweet voice that the blame game is not helping at this point. I don’t care who dropped the ball, but I need this life-sustaining med and ASAP.

I hate being rude, but I was not a happy camper after talking to like the 5th or so person.

[Susi Steppins]

I am expecting my Accredo prescription today.
I will be completely out of my meds his Sunday so we only have a couple of days to get it here.
I hate that they wait until I am almost out of my medicine until they fill it.
I asked the woman on the phone why they do this and she said they had been calling me for 2 weeks.
I don’t think they are calling the right number.
I verified the number with her and signed up for their email reminder as well.
Thanks for the tip @cdvol3gmail-com.

[jen-cueva]

Hi @s-steppins,
I hope and pray that your shipment arrives on time. I have not had this big of a mess with them before. Small little issues at times, but never this stressful.

I think they have taken a few years off my life already by stressing me out.

They do usually start calling about 2 weeks out. But, sometimes, I have called, and they said it is too early and insurance will not allow them to ship it too early. So, we must call and do the reorders within that window. Have you had that happen yet?

Please let us know if your meds arrive on time. Accredo has some awesome staff than some who could care less. I think that is the issue.

[jen-cueva]

Hi @s-steppins,
I hope and pray that your shipment arrives on time. I have not had this big of a mess with them before. Small little issues at times, but never this stressful.

I think they have taken a few years off my life already by stressing me out.

They do usually start calling about 2 weeks out. But, sometimes, I have called, and they said it is too early and insurance will not allow them to ship it too early. So, we must call and do the reorders within that window. Have you had that happen yet?

Please let us know if your meds arrive on time. Accredo has some awesome staff but some who could care less. I think that is the issue at most places.

[Carol Volckmann]

Jen, your actions were NOT rude – these are life saving medications and having to talk to 5 or 4 or even 2 different people is unacceptable. To have your meds arrive late is totally unacceptable. Susie I pray yours arrive on time!

I asked years ago to be notified by email and text 2 weeks prior. Today I find myself out of one of my meds which should have arrived Tuesday.

Accredo, we have a problem you need to fix!

[jen-cueva]

Oh, No, @cdvol3gmail-com, you are trying to help all of us, and then you have a mishap! I am sorry to hear but happy to read below where they did get it to you.

I think that with just these issues among this post, Accredo needs to get in gear and hopefully a better system. I am hopeful that my one person of contact will prevent any further mishaps.

I am grateful that @s-steppins received her meds, and I am happy to report that I finally received my Uptravi.

I have had the issue a few times that I wanted to order, saying it was not yet time.

@cdvol3gmail-com, you mention hurricanes, fires, and other natural disasters. This is when I do try and stock up as much as I can. But often, with insurance limitations, they refuse to fill meds early.

Thanks for all of your tips, sharing, and contributions; I hope you and everyone here have a nice relaxing Memorial Day.

[Susi Steppins]

I agree Carol.
Sometimes you need to clarify why something is important to get stuff done.
I went out to lunch with my husband and when we got home my meds were at the front door waiting for me.
So I am set for another month.
@jenc, I hope yours get there tomorrow as expected.

[Carol Volckmann]

So relieved for you Susie! Hopefully Jen’s meds will get delivered tomorrow! My tips did not help me this time – one of my medications is 3 days late! UPS said they will arrive tomorrow fingers crossed ????.

I do know insurance companies allow only a short window which is really insane – are we going to take an overdose or maybe we could sell them on the black market!

So … we have to make sure we have a stash set aside. Winter storms, hurricanes (Jen, I know you must get concerned every hurricane season) fire season – we were hit with that living in the mountains so now … mother nature will throw something at us so we must be prepared. I don’t think Accredo or any other special pharmacy has any clout with the insurance companies.

[Colleen]

I feel everyone’s pain here because I’m going through it too. I thought once my son received his transplant his Accredo days would be over, but they fill his specialty immunosuppressants. Half his meds are filled by the Express Scripts side and the other half is Accredo. What I found out a few months ago after battling like crazy to get dosage changes updated, is that the doctor’s office was sending the prescriptions Accredo handles to Accredo.

Well, as it turns out ALL prescriptions should be sent to Express Scripts and they will communicate with the Accredo side. What happened was multiple accounts were made in Cullen’s name which needless to say, caused a lot of confusion and delays.

This time the issue is what I believe to be lack of updating records. Express Scripts still has most of Cullen’s meds as subscribed by his Stanford doctors. A year ago he transitioned to adult care at a hospital in WA. I believe all medication contacts were provided but Express scripts isn’t seeing it. I’m contacting multiple doctors trying to get it all updated so refills can be mailed in time.

@jenc and @s-steppins I hope you get your meds ASAP! @cdvol3gmail-com Cullen has 1 prescription in particular that is often an insurance battle. He will run out but insurance will claim he has another week or 2 before they can refill it. Finally got it straightened out but it seems like once a year we have to go through the battle all over again.

Oh well, thank God we have these medications available but sometimes the process getting them is so stressful.

[jen-cueva]

Oh no, @colleensteele, I feel the pain. I am sorry that you’ve continued to have issues filling Cullen’s meds. Ironically, I found out that one of my issues was that they had two separate accounts for me. One for Adempas and one for Uptravi. This is why the HH nurse notes were missing. Somehow her notes were added to my Uptravi account. She is who figured this portion out and hopefully corrected it.

Another issue when I needed an Uotravi refill, they did not have the correct doctor in the files. Crazy, the med label had my current PH doc’s name, so strange.

I hope that everyone ow has all of their meds without running out.

@cdvol3gmail-com, wow, you did an excellent job on getting the meds from UPS. Like Colleen, I am wondering how you kept your cool with this issue.

I am grateful that I shared, as I think we learned so much from just one post. I appreciate each of you for sharing your experiences.

Thanks, @mamabear007; I hope that the resources will benefit you when you do the support line. It is my pleasure, and we want to help all we can.

[Carol Volckmann]

I hope everyone gets their delivery today! I contacted UPS – 1st person said tracking # was wrong next 2 told me meds were in two different places 4th person called back, found the meds and an UPS driver delivered it after his shift in a rental van not UPS van. If I had not gotten them last night I was going to call Accredo’s office in Seattle and have them send a courier with meds.

Wishing everyone a safe weekend! ????????❤

[V.R. Peterson]

Thank you for that excellent resource from PHA, @jenc! My son never experienced such problems while he was on the specialty meds, but that was before COVID and the shortages. I’ve bookmarked the link, so if anybody else complains of such trouble, I can help them find help. Again, thanks!

[Colleen]

@mamabear007 when Cullen had PH we never had problems with Accredo. In fact, they were supportive and quick to respond with rarely any mistakes. I think when Express Scripts got involved they have had issues. I’m sure Covid hasn’t helped the situation.

[Colleen]

Good Grief @cdvol3gmail-com! How did you keep your cool through all of that? At least it ended well! I had success yesterday getting Cullen’s refills taken care of. His UW doctors responded and updated Express Scripts quickly. Hopefully he will receive everything in time next week.

@jenc and @s-steppins how are things going for you two?

[Carol Volckmann]

Wow Colleen, seems everyone was/is having difficulty with receiving medications. Having to deal with both Express Scripts AND Accredo has to be a real hassle. Thank goodness for UW who came through. My Pulmonolgist is also at UW and soon Dick and I will have a new Cardiologist also at UW. Have a good weekend with your family it is going to be beautiful here. ???? Just hope Jen and Susie have all their meds and can relax this weekend!

[Colleen]

Time to bring this topic back around!

Cullen swallows 224 pills a week to keep his transplanted organs healthy and co-existing conditions stable. He takes them like a champ and usually, with the patience of a saint, I order his prescriptions through 2 specialty/mail order and one pharmacy store chain.

To heck with my patience! The specialty pharmacies have poked this momma bear too many times over the past few months! The store chain…no issues!

Cullen’s insurance has not changed, just his ID #. Yet they had to create a new account. Two issues! 1) The process is SLOW! It can take 7-10 days when a new account is created for prescriptions just to get processed let alone shipped. 2) Also a new account is made when a prescription is added or dosage changes. Old accounts don’t get closed out and not all of his prescriptions get transferred over to the newest one. This turns into a game of “Which Door Is This Prescription Behind”.

I am so grateful Cullen has access to the medications he needs but so frustrated with the process!

[V.R. Peterson]

Oh my goodness, @ColleenSteele, I’m so sorry Cullen is having to deal with such ineptitude by the specialty pharmacy! Any momma bear worth her salt would be steaming over this, as I’m sure you definitely are!

[Colleen]

Thank you @mamabear007. I THINK we finally have all the issues resolved but I won’t hold my breath. I know @jenc has been going rounds with her specialty pharmacy too. As if we don’t have enough to deal with!

[V.R. Peterson]

Prayers that all those having issues with specialty pharmacies (and all other medical providers) will experience the providers pulling their collective heads out of their collective…. (fill in as many blanks as you dare)

[Colleen]

I needed a laugh today, thanks @mamabear007! So far I ordered from Accredo today without issue…unless of course it doesn’t really arrive on Monday like they promise.

But Express Scripts left a message there is a medication they can’t refill because they don’t have doctor’s approval. My guess is they still haven’t updated his doctor’s info and they are contacting his pediatric team. That has happened a few times. Gonna enjoy a Starbucks then tackle this issue.

[V.R. Peterson]

Good luck, @ColleenSteele! Express Scripts is gonna wonder what hit ’em!

[jen-cueva]

Thanks for the laugh, @mamabear007! I pray Cullen now has all of his meds, @colleensteele. I know how frustrating this can be! It might take more than a strong SBUX, hehe.

I do like to try and find one contact person, @cdvol3gmail-com. One issue was that person was often too busy, so I didn’t always get to her, but I knew to ask for her if I had any problems. I could also leave a VM at her extension.

I hope we have resolved all of our specialty pharmacy issues now.CVS specialty is the one we were switched to last year when our insurance switched over. They are not as simple as I had filled with Accredo.

Apria, my DME company for oxygen, had 3 accounts for me at once. I believe we finally have them all closed, minus my current one. It was a never-ending battle with them, too. I paid them off for the balance just before our trip to Texas.

We have plenty to stress about, especially you and your family right now, lets’s hope and pray all meds are back on track.

[Carol Volckmann]

OMG Colleen with everything else you are dealing with to have Accredo/ExpressScripts put you through the wringer and putting Cullen health in danger. They have no idea what Momabear they are dealing with! 🐻

It is my understanding that ExpressScripts bought Accredo a couple of years ago – there is absolutely no reason for the screw up.

From day one 17+ years ago when I first dealt with Accredo and found someone I was totally comfortable with I asked them if I would be able to just deal with them -Yes – then asked for their extension. As the years went by the individuals would get promoted and I would ask them to refer me to the next and I would get their email address.

Any problems that would come up the individual would square it away right away. Also I found their Pharmacy department has been very helpful and the after hour nurses have been outstanding when I have had horrid issues, of course on a Sunday night!

Whenever I did call in the beginning and get the next in line I was never satisfied. When I find someone to deal with all the time they have my whole history including insurance, the grant info that picks up my copay etc.
I am sorry Jen you had to switch when your insurance changed. I hope you can find an advocate with CVS who really cares and is a problem solver.

That’s what we all need – advocates that are problem solvers – we need a “Fixer” so we would not have to turn into mamabears, maybe just a cute one 🐼!

[jen-cueva]

Hi @cdvol3gmail-com, thanks for sharing your tips again for Colleen. Yes, we all need to have an advocate everywhere to be the sweet mama bears, not the wild and grumbly ones. Hehe.

Once we finally got all switched over, I tried and refilled my Revatio and Uptravi at once when I called CVS Specialty. At first, they did not want me to, but I talked to a manager recently, and she said that was fine. She made a note in my chart, well said she would. It worked with my last order. Unfortunately, that manager said they do not have extensions, so I took her name down in case I needed her.

I hope you, Dick, and Cloud enjoy a relaxing weekend and feel good, my sweet PHriend.

[Carol Volckmann]

Hey Jen, I hope you can relax and think of the good moments you had in TX – thank goodness you are no longer living there. So happy you did have fun and quality time with family.

I am so sorry to hear you too are having issues with CVS. It makes me so angry. It is just unacceptable to have to fight so hard for your health!

Last Friday I did have a new Hickman line put in, but because it is smaller in diameter they had to make a new incision so. I have been pretty sore all week and my skin feels raw. This morning was the first day it felt better – so … on the mend. I do have a call in to find out if the nylon stitches to hold the line in will be there for the duration or do they need to come out. Called yesterday – no call back so I will call again today.

Here’s to a lovingly relaxing weekend for you, Manny and Zoe 😊🐶🤗❤️❤️

[Hilda]

Hello to the phenomenal phamilly of pulmonary hypertension. I will like to bring the attention the experience that I had with alliance/Walgreens specialty pharmacy. When you call for renewal everything is by stages: first is the traffic management then you get transferred to a different traffic guidance person. This second persons take your renewal. This person does not know if the meds are available in stock or not for your delivery day. You can call for renewal up to 10 days before your last pill. This will give you the opportunity to tackle any issues. If your meds don’t get delivered return a callback, ask for a supervisor, your call maybe longer than expected but it will be worth the time for safety. Good luck, be phantastic always. Smile, it will give you good memories😂🎉🥰❤️

[jen-cueva]

Hi @sevo, do you have to go through all three stages when calling monthly for refills? Or do they allow you to fill in every 90 days? I don’t believe I have worked with Walgreens specialty pharmacy in the past.

Do you feel that ordering 10 days or less before your last pill is sufficient? I usually like to have a minimum of 2 weeks on hand when I refill. Of course, for some meds, insurance requires us to wait until closer to empty to fill. I can grab Those at my local CVS, and I still would prefer to have a week left for those if possible.

How long have you worked with Alliance? Thanks for sharing your experience. It helps us to understand better how each place is different, too.