General
Pill refills
April 1, 2022
in General
Hi everyone,
I was wondering if you also struggle w the monthly hassle of having to refill transplant drugs? I am literally in the phone w United /optumRx every month to secure my life saving drugs. Is there not a better way??? Seems automatic refills don’t work for specialty drugs??
Tagged:
1 - 30 of 32 Replies
I don't think I've ever had to call my insurance/prescription provider to fill meds. Our team has always dealt with the drug pre-authorization if needed and I believe that's only for the initial set up.
Interesting that you mention this. 2-3 months post-transplant and my daily dosages change frequently. And, somehow, I am dealing with 3 pharmacies - my local one, one near my hospital and one mail-order. So I am in the process of moving all my prescriptions to my local pharmacy. Will see how that goes. Still have to watch dosage - as what I actually take bears only a passing acquaintance to what is on the prescription/bottle. At least I am being taken off a lot of meds - in the past 3 weeks I have gone from 43 pills/daily to 24 (and some are supplements, such as probiotics because of 2 sepsis episodes).
I use Lee Meds who deal with transplant patients all the time and I have never had a problem with my medication
I use my local pharmacy for my non transplant prescriptions, The special pharmacy at the transplant hospital UAB for all transplant prescriptions and one high cost prescription from my medical insurance company.
Had no issues with refills unless the prescription has no refills and they must contact the Doctor directly.
Yes, unfortunately I have to deal with this every month as well. I have United/CVS for my specialty meds. I am 32+ years post kidney transplant and my meds are quite stable. So you would “think” it would be a straightforward process…but nooo. I have secondary hyperparathyroidism and have been taking Sensipar for 10+ years. I have no problems when on Sensipar, but every year I have to go through the reapproval process. Every year I am denied approval and go through the reapproval process again. Over the years I have run out of meds for several weeks, been changed to the generic version, etc. Every month thereafter I have to tell them that I am okay with the copay, or ship date…or usually the rep on the phone can’t figure out why the shipment is on hold. They will do this with my mycophenolate on occasion as well. The insurance company is paid a lot every month for service but the monthly harassment is getting ridiculous. 😵💫😕
I feel very fortunate that I’m able to get my transplant meds from my transplant hospital’s specialty pharmacy since my kidney transplant in 2015. My medical insurance, although occasionally sends information on their mail order pharmacy, has allowed me to continue to use the specialty pharmacy. So, I’ve had no problems getting my transplant meds on time. Prior to my transplant, I often had challenges either with the mail order or local pharmacies in not getting a full month’s order or delay in shipments. So I’m very thankful for my great care from the specialty pharmacy at Michigan Medicine.
Transplant Patient
So interesting to hear about the different experiences! We need to streamline this for everyone / I hear myself yell to innocent Optumrx people several times a year since I am worried about missing doses due to this messy system ! I also have at least three places where my Drs fill my drugs and they always mess it us so the Insuance company decline in some way!
I use my mail order pharmacy and get 3 months supply easily. So I am fortunate too.
I use mail order and have autorefills. That has worked very well for years however there was period where it was a constant hassle.
This is important for anyone with medications. My son struggles with this in college too
Transplant Patient
It is funny how different this seems to affect people across the US. Optumrx doesnt do three months for tacrolimus and until recently didn’t allow automatic refills!
I get mine directly from my transplant hospital pharmacy but it is costly. I was told I can get my tac cheaper thru Good RX and Kroger but I’m hesitant to leave my current pharmacy. They deal with everything for me. All I need is to make a call.
I have auto refills now and had it for a few years when I first started but somewhere inbetween they stopped to autofill. When I asked why they said they could do that. No reason other than they could. Wasn't happy
I have auto refills now and had it for a few years when I first started but somewhere inbetween they stopped to autofill. When I asked why they said they could do that. No reason other than they could. Wasn't happy
Transplant Patient
I wish I had more support on all the practical stuff related to transplant and my meds in general - speaking to insurance and pharmacy people not my preference of time spent
Unfortunately our transplant teams can only give us information for the first two years regarding who will cover what. After that, there are so many “what if’s” in regards to types of insurance coverage, who covers what, etc. that it is almost impossible for any one person to understand everything. As another poster noted, Medicare doesn’t cover all of our anti-rejection meds…I’ve always thought that was nuts. How do we want to advocate? I don’t have a good answer.
When I was initially on Medicare, I looked into an insurance that covers my meds. First the amount for most pharmacy coverages on Medicare have to pay $435 monthly, plus maybe a deductible and then it cost me too much for my Mycophenolate this way. I guess I was blessed to stay with my husband’s insurance and pharmacy coverage. Deductibles are high for medical care but pharmacy is good. Things probably have changed since then. How can people afford this with all their other expenses?? I hope they can cause people need their anti-rejection meds.
Transplant Patient
I’m in Canada and all my transplant meds are mailed to me from the transplant centre (if I lived closer I’d commute and pick them up, but since I’m rural they mail them to me). My doses are automatically adjusted in the system every time my doctor changes them. All medications are covered by the province so I don’t pay a dime.
HI KARIN. My name its michelle i’ve been struggling with ESRD SINCE 16yrs old im 42 now at the beginning i used to refills my first transplant pills at a regular pharmacy and then when i got my second transplant the staff members in the transplant clinic send all my medication to another pharmacy called (TOTAL CARE RX) they are very efficient always call you a week ahead of time to refill and send it directly to you address so try to speak with your coordinator to see if there’s a way more easy and convenient good luck
Transplant Patient
Great advice but at my center the coordinators don’t help out much after one year. I deal directly with my dr and he is overwhelmed as he should be with more important matters. This is my number one hassle post transplant - refills and making sure my drugs are here in time!
I have been using Lee Meds Pharmacy since my transplant in June of 2021. They are on auto refill. My anti rejection meds is a one month script, but Lee Meds calls me when my pills are ready to be refilled, sets a day for delivery and I get my pills like clock work every month delivered to my door by FedEx. When I was going away and wanted to make sure I would have enough pills with me, they were very accommodating and delivered my meds early for me, no problems at all.
Transplant Patient
I will look Lee up! Thanks @rmorris
Transplant Patient
@rmorris lee drugs seems to be a regular pharmacy in NY??
@Karin have you try looking for a long term pharmacy in your area or in other cities that can deliver or send with fedex its too bad that you’re having trouble getting accommodations and communication with the coordinator they’re are supposed to helping you in that matter even having a number just for prescription so you or the pharmacy can call and get new prescriptions directly to the pharmacy if you can make an appointment with your doctor and just tell him that he is your doctor and the staff are supposed to help the patients regarding the medication and they’re are supposed to be probing a list of pharmacy that are long term they do know and have info and try to speak with your social worker too i feel bad that these it’s happening to you just keep pushing i wish you all the luck and be safe
@Karin I'm in the same boat - we just switched to United Healthcare - and OptumRx - It's now March and I just got one of my prescriptions. They said they won't do any of my anti-rejection drugs for more than 30 days and none are eligible for auto-shipment. It looks like they give me about a 7 day window before I'm out to get my refill - that's very tight, and of course means that every month, I won't be able to travel because I'll have to be home to get my meds. It's really bad.
Has anyone found a way around this?
I know what u mean very very frustrating. I do not the Rx plans and why they cannot help us, especially w/cost. Check w/your social worker they may be able to help. Also Mark Cuban plan to. Good luck !!!
I'm 12 years out (yea!) so no coverage from care center/social worker. I'm sure it's not unusual to be on 30 day supplies and have to run to the store every 30 days. Just wonder what folks are doing if they travel - especially out of the country?
Travis, yes “YAY” congratulates to 12y and many more. I am a little over 2yrs. LTP cannot wait to say 12yrs. 😊💚
As an active duty military dependent member, I use express scripts. They were giving me 30 day prescriptions with no automatic refill. I messaged my team and they did give me a 90 day supply now, so that’s a lot nicer!!
I’m in Canada and it’s a bit different but still frustrating at times- I have to call in for refills on my transplant meds as they have yet to set me up for automatic refills. These meds are mailed to me so I need to inform them at least a week or more before I run out. The remaining meds I take I get locally and have automatic refills- now I also am terrible at remembering to call or even pick up my meds 😬
thankfully my spouse who is the organizer around here, keeps it in his calendar and makes sure everything is phoned in and picked up! It’s a huge help for me and makes more brain space for me to be the busy mom I need to be also! So in a nut shell I’m the problem not the pharmacist lol