General — TransplantLyfe


Insurance issue / need aranesp

Transplant Patient
Updated August 13, 2022 in General

Yesterday was a day that didn’t give me good vibes.

I am heading for orthopedics surgery in less than one month. 

And due to my CKD, my hemoglobin value is relatively low. 

Actually, it's quite low - solow that the surgeon is worried about the impact of blood loss in surgery that may trigger a blood transfusion. 

Which, per se, isn't necessarily an issue...

BUT - for a transplant patient, you want to avoid developing additional antibodies that could make it difficult to receive another kidney or pancreas in the future. 

So, my anemia needs to be treated for that reason, as well as:

  • for the simple reason that I am cold (yes, even in 90-degree weather) and 
  • the fact that I get tired at 7pm, despite having much more to do and the desire to do so.

My kind nephrologist ordered me a form of hemoglobin stimulator called Aranesp (Epo), and he advised me to take one injection per week before surgery. 

We discussed the best and fastest way to get it delivered, and I suggested the local drugstore so I could pick it up the same day. 


When I called my local pharmacy, they could not dispense it since Aranesp is a so-called “specialty drug” that is only dispensed by specialty pharmacies - not by a retail pharmacy in Westport, CT.

I called the specialty pharmacy and was turfed to mail-order after 30 minutes of waiting online and coding different messages to different mechanical voices - allwhile trying to run a business and manage my child and take care of my health (i.e., eat, drink and rest).

The mail-order group didn’t even give me a person, but rather - just hung up on me after an additional 60 minutes on the phone pressing various buttons and giving my personal information a few different times.

In other words: getting my prescription of Aranesp seemed IMPOSSIBLE.

At this point, I was in tears and gave up on the specialty mail-order.

I called my doctor and asked him to please simply send my order to my regular mail-order pharmacy and have them dispense it at their leisure (which, I thought, might happen next week). 

Later in the evening, I called and asked when my drug would arrive and they said I had already filled my prescription of Aranesp at the local drug store...

And that I needed to wait another month…

What do you do with this scenario??? 

This situation is truly not humane and not ethical to me. 

I long for the time when I had a paper Rx and went to my local pharmacy and got my pills and injections filled by a person who cared and was educated and helpful.

To make matters worse, when I returned home my little cavapoo (dog) was sprayed by a skunk and now my daughter and I - plus, our entire entrance and mudroom - stink!!!

I am now, more than ever, determined to help fix the gaping holes in our healthcare system.

Please send me any suggestions or solutions to this problem that you have discovered. I know I am not alone! 

Thanks for being a part of this solution-oriented community,

1 - 5 of 5 Replies

  • Mholer01Transplant Patient

    Utilize an independent local Pharmacy. They care more about their customers.

    Also, contact the local Pharmaceutical rep for this product…local or hospital pharmacies would have their contact info. They are usually happy to help and even sometimes can get samples quickly to the physician to give to the patient.

    August 9, 2022
  • KlaraOwenMedical Professional

    So sorry to hear - not a good day by any stretch of imagination!

    Aranesp is made by Amgen, you can also contact them directly:

    Product Inquiries | Amgen

    You could also talk to your doctor, whether the previous version of Aranesp, which is now generic (Epogen, epoetin alpha), wouldn't also be suitable - and might be more readily available.

    The best of luck!

    August 9, 2022
  • Mholer01Transplant Patient

    Lastly, when you’re not stressing over getting what you need… have a conversation w your pharmacy. What happened? They should not want to lose you as a customer! If they don’t seem to care… there are other pharmacies!

    August 9, 2022
  • StaceywrightTransplant Patient

    I’ve had Epo drugs prescribed twice in the past. Both times, I had to go into a clinic and have the shots administered - I was told I was not able to get them on my own. I had Procrit and another that started with an R. Maybe that’s why it’s hard to get? You have to have it administered?

    August 9, 2022
  • Sdey0522Expert
    Transplant Patient

    @Karin , so sorry you had such a challenging day! Completely unnecessary, especially given that you need it quickly as you prep for surgery.

    I saw some good tips from this awesome TransplantLyfe community! Thank you all!

    As someone said, contacting rhe manufacturer of the drug is a sensible option. Also, when dealing with Specialty Pharmacy outlets, be it CVS SP or others like Optum etc - often the agents on the phone aren't well trained. I don't waste their time nor mine - if it's urgent, I always insist on speaking to a supervisor/manager. Ask them to "escalate" (they understand that terminology). Often, these so-called supervisors et al have the discretionary power to make things happen.

    With your scenario, you should probably file an official 'grievance' with the Ombudsman or whomer.

    Anyway, best of luck to you - for filling the prescription + wishing the surgery will go smoothly without the need for any transfusions etc.

    Take care. 🍀🤞

    Ps. Regarding the skunk-stink - did you put your daughter in a tub filled with 🍅 juice? 😊 - I believe that's supposed to work quicky.

    August 9, 2022
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