Insurance struggles!!

[Transplant09]

I get so frustrated with prescription insurance issues. I have to fight with my pharmacy every beginning of new year and everytime my doses change. I have insurance thru my husband's work so it is primary but I also qualify for Medicare and I have had both for almost 12 years. Nothing ever changes but I have to "tell" the insurance dept at my pharmacy how to do their job. I try not to be so demanding but it makes me so mad!!

[March-31-09]

Sounds totally beyond frustrating. My transplant nurses had a fight with the specialty pharmacy to dispense the drug that would keep my HBG in the satisfactory range the longest.

[Alfredmynewkidney]

That sounds so frustrating. I am a nurse and am blessed that my hospital is a great transplant center and they have a specialty pharmacy. Sorry you have such a hard time. Glad you are great advocate for yourself!

[Hidden]

This is annoying and I have been through the same thing at the last big chain pharmacy I used. At least you know how the system works and can give instructions. Currently, I have a great pharmacy team and they like using "override" a lot. They can be a wonderful addition to your medical team. Maybe find another one? You probably bring in several meds a month and they wouldn't want to lose your business. We spend extra time filling out the store survey and constantly compliment their work. Occasionally, we bring in pastries. They want to know they are appreciated too. Good luck.

[Transplant09 in reply to Hidden]

Thanks for the reply..."According" to my insurance plan I have to use a mail order pharmacy so it is a specialty pharmacy so you would think they would know the system.

[Hidden in reply to Transplant09]

I know. I have one med at the specialty pharmacy and it is a hassle each time. I did find the direct number to them and presented it to the transplant nurse. I also changed to the three month refill so I don't have to be pestered every month. The transplant nurse was using an incorrect number. I don't know why this is such an issue since other people are on the same plan.

[Transplant09]

Thanks for the replies and thanks for letting me vent.

[Hidden in reply to Transplant09]

This is part of the feed. Getting answers/venting and writing how you really feel without it going in you file, only to be brought up at some future point. If I wanted some polished corporate response, I wouldn't need this feed.

[Blue-Quilter]

I have the same battle every time my dosages change which has been very often since I cannot get a stable tacrolimus level. I've had dose adjustments every two weeks on average for the last 23 months. My transplant was October 13, 2019.

I just got a letter in the mail, denying me the Envarsus (slow release, once daily tacrolimus) that I've been on since March because the twice-daily tacrolimus wasn't cutting it. So I will spend another hour or more on the phone with the company I got the letter from trying to figure out what I'm supposed to do now. Then I will call my post-transplant care coordinator and have her do the same thing. It is beyond frustrating but what option do I have? I'm single so both insurances are mine so there shouldn't be an issue, with the one thru work as primary and Medicare as secondary, but there always is. I really wish the insurance companies would stop trying to practice medicine and just cover what the doctor has prescribed!

I recently was given two Rxs for arthritis, both of which were denied because the insurance companies want me to try OTC NSAIDs. Those are metabolized in the kidneys, of which I currently have only one working one, you know! I haven't had the time to fight insurance on this one because I've been in the ER twice this week for another issue, but it's on my list of things to do.

Does anyone have any ideas on how to effectively fight the insurance companies so we can follow the instructions our doctors have given us?!

[Eyak1971]

After reading this feed I feel somewhat fortunate and somewhat I ln dread of the possibilities. When you have medicare as primary you have to have supplementary insurance for medication which is why the Congress is looking to expand coverage and which is why pharma is fighting the possibility because they need the profit for investment in research. Everyone wants what is best for them and really why is healthcare a win or lose situation. When you are trying to keep yourself alive and healthy why should it come down to dollars and cents. Even when you have your initial appointment to get a transplant you are questioned on financial stability. When you are fighting for your life you have to fight with insurance, pharma and sometimes medical staff. But life is getting better with new treatments and medicines. The question is how can we make that happen and still make it affordable. I remember a time when I was much younger being sent to a doctor's office or a pharmacy and paying cash for both because both were affordable. Later when my daughter was born we had to pay cash because insurance did not cover it. But we could afford it. Today you need multiple insurance policies and still end up with bills that insurance does not cover. Today Big pharma is one of the most powerful parties in contributing to political elections and doctor's live in million dollar homes. The doctor who treated me when I was a child lived in the same type of home that I grew up. I know this response did not specifically answer the original question but I am glad I have medicare as my primary because medicare sets the reasonable price for care and even if you didn't have supplements that price is affordable which is why pharma and insurance companies are fighting to have the same thing not happen for drugs. Needless to say all patients no matter the illness are fighting the battle to pay to stay alive. So thank you for bringing up the topic and I hope you find your answer. Take care.

[WYOAnne NKF Ambassador]

See if your doctor's office can help you. My doctor had to write a letter to my mail order pharmacy. The pharmacy kept sending me generic forms of my immunosuppressants which after a couple of days caused daily diarrhea. Once I switched to Name Brand all was OK. So my doctor had to write them a letter stating that I could only take the Name Brand. All is fine now for the last 4 years. No problems, no issues...

[anne627]

I take Gengraf, which is cyclosporine as one of my drugs. Every time I need a prescription, the doctor has to fill a form out for Medicare, proving I have a transplant. I have trouble getting my meds. I tried switching pharmacies, and had to get the form to Medicare again for Medicare B. I would wait weeks for my pills. Finally I got a call from Walgreens Specialty Pharmacy. When Walmart wouldn’t continue getting it, I switched over to the Specialty Pharmacy and get my Mycophenolate there too for the past few months. They do a great job and ship my meds to me in one day every month.

[Gardner-NY]

Dear Transplant09, Boy I can relate very well about pharmacy drugs that you must take so your kidney thrives along with other meds you need too. My spouse was told to take Medicare A&B at age 59 which lasts for 36 months then that coverage ends. I work full time and have had our primary medical insurance over 22 yrs , but due to the last 6 months of the 36 months coverage, now Medicare is primary over the other insurance I have for us family plan. Well, we found out that MEdicare will not pay for two items that must be used when you give yourself an insulin injection. So now I'm dealing with getting this over $500 supplies bill handled. We were told not to take part D Medicare due to my primary insurance and how it works well. This entire time since the Nov 2018 transplant, handling Medicare as 2nd insurance and now primary has been a nightmare. Took me 9 months of being on the phone hours each week to fix a problem they caused. Like we all don't have enough to deal with as our kidney is trying to do its job for us. Stress is not needed in all this. I find that most insurance companies don't care about your health at all. You are a number to them and an expense though you are paying your premiums on time. I hope someone on this feed finds the answer to pharmacy problems. I cannot retire now due to all this or my problems will worsen--that is another novel which I won't bore you with. Stay well. Glad you are a good advocater for yourself.

[Transplant09]

It helps to hear that I'm not the only one. All we can do is keep pushing on and taking care of ourselves and keep making our voices heard.