Kidney — TransplantLyfe

Kidney

Getting medications - problems with specialty pharmacies

PassickTransplant Patient
May 2, 2023 in Kidney

I'm having much frustration getting my anti-rejection meds.

Through a What's App post kidney transplant group that I belong to, I see others have the same issue and are sharing meds till they can get theirs filled. My insurance is Aetna and they dictate that I fill my anti-rejection meds through CVS Specialty - CVS owns Aetna.

This needs to change! We transplant patient are already dealing with so much.

Are you having issues? Please share. Thanks.

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1 - 12 of 12 Replies

  • AliEm14Expert
    Transplant Patient

    That's crazy! I'm in Canada and we're not having this issue here - maybe someone from the US will have better insight? I can't even imagine the frustration

    May 2, 2023
  • PassickTransplant Patient

    Yes, it's CrAzY! Canada has always had easier drug access and pricing too.

    May 2, 2023
  • Sdey0522Expert
    Transplant Patient

    @Passick - so sorry to hear this. I've dealt with this issue in the past. Unfortunately, this situation could happen every now & then. Which medicine is it in particular? Sometimes availability/supply is low/limited across all pharmacies.

    You could try contacting the manufacturer directly, they may be able to advise you. Alternatively, you could reach out to the customer service folks at Aetna, they may be able to make some calls etc and they may find pharmacies near you that are able to fill the prescription. (It will require overrides etc - so, could be a time-consuming process).

    Good luck! Hopefully, you'll have the meds in your hand soon.


    Ps. Also, it'll help if you request your doctor to writes a 90 -day prescription. (Provided your insurance carrier allows 90-day scripts to be filled).

    May 2, 2023
  • PassickTransplant Patient

    Thanks for the advice. Appreciate it. Unfortunately insurance won't allow for 90-day supply.

    It's not about short supply. CVS has made several errors in filling prescriptions. To correct it hakes multiple calls...info always is different than what I see on the portal or the texts I receive. Each issue takes so much effort to correct and I am never certain it's corrected until I finally get the medication.

    The ani-rejection meds seem to need to come for CVS Specialty according to Aetna, my carrier. Grrrrr!

    May 2, 2023
  • ShelbycreatesTransplant Patient

    @Passick yes, that happened to me too with shortages last year. I have tricare Prime insurance. I have my meds delivered by mail through Express Scripts. I called around to local pharmacies and found one that had a bottle of my medication until they got it restocked online. Good luck! What med are you having a hard time getting?

    May 2, 2023
  • PassickTransplant Patient

    It was not about a shortage - just getting them to refill a new order by doctor...and they made several errors too.

    Thanks for your reply!

    May 2, 2023
  • ShelbycreatesTransplant Patient

    @Passick sorry I misread that. Wow! All those errors—that is NOT ok. Especially when you have a whole life to take care of. It would be nice if things fell into place as they are designed to do. Hopefully through continued advocacy we can see the changes our system needs to make!

    May 3, 2023
  • VegasrailsTransplant Patient

    I to had issues with my specialty pharmacy medications between errors and billing in Clark County Nevada. The Transplantation Center wanted me to stick with the pharmacy based on the formulas that were made there. They were concerned that another pharmacy would provide the same medication but at a different strength or formula. Resulting in further problems. Additionally pricing, and delivery rules continued to change since this pharmacy was merging with another local specialty pharmacy. This went on for almost 4 months, when I was able to break from them to my current pharmacy. It did add to the stress especially when my orders were incorrect, wrong strengths etc. I would work out compromises to make what I had work with my Transplantation Pharmacist who was supportive and very helpful through out that rough time.

    May 23, 2023
  • KarinExpert
    Transplant Patient

    @Passick i had my transplant done at Columbia (like you) and they moved me to totalcareRx which is so much better than OptumRx where I was before! Can you not get that service?

    May 25, 2023
  • PassickTransplant Patient

    I was using Total Rx via NYP. Unfortunately my insurance, Aetna, required I use CVS Specialty for my anti rejection meds. As you know CVS owns Aetna. The rest of the meds I can get locally.

    Hope you are recovery well.

    I’m having some complications- likely will be doing biopsy.

    May 25, 2023
  • KarinExpert
    Transplant Patient

    I am so sorry - hoping the biopsy shows nothing of major importance - I had to do that after my first kidney within the first year too!

    May 25, 2023
  • Nickhansen795Transplant Patient

    My employer also utilizes CVS Caremark. I have a long history of issues with Caremark, including denial of medications my rheumatologist wanted to try when my lupus was out of control. I take prednisone, Cellcept (Mycophenolate) and Prograf (Tacrolimus) for my transplant, and Plaquenil (Hydroxychloroquine) -supplements Cellcept- for lupus. Amazon pharmacy has been great as an alternative. 30 day Cellcept (500 MG x60) = $22USD, 30 day Prograf (1 MG x 60)= $22USD. That is without entering Caremark into the equation and using Amazon's rx card. This is similar to Goodrx, but seems to be much more consistent (less shopping around than with Goodrx). Just thought I'd share.

    May 27, 2023
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