Disclaimer: When I say CVS, I’m referring to CVS Speciality. CVS Speciality “helps our patients manage their rare and complex conditions to live longer, healthier lives.” Insert eye roll.

First off, I want to say I’m not new to the craziness that is health care and insurance. I’ve been learning to fight the system and advocate for myself with the help of my parents since I was 14. But it’s still hard when you don’t know what questions to ask, so I want to share my experiences to hopefully help you.

I apoligize for this being a long winded post…but here it goes. I’m on an expensive transplant drug. I have been for 11 years. Once a year, I have to fight insurance, specifically, CVS Specialty to not kick me off this drug and put me on generic. I’ve never been on the generic and my doctors do not want to switch me to it.

I called CVS Speciality to order a refill of said expensive drug on Jan. 11. They ask me a bunch of annoying questions, but I get it. They’re doing their job. I answer all the questions and finally, they ask when I’d like it delivered. (CVS Speciality has to mail order their drugs…they don’t keep “specialty drugs” in stores.) My answer was Monday since I’d be out of town Friday. They assure me it’ll be here by Monday since I run out of my drug Monday night. I do take fault in not ordering my medicine sooner. That was my fault due to a change in insurance and having to deal with that.

Monday comes. No drug. Tuesday morning I check, still no drug delivered to my door. I call CVS Speciality and they say the drug was never shipped, that I needed pre-authorization for this drug…now I’m in a predicament. It’s Tuesday, I’m completely out of my drug and the weather is terrible and places are closing early. What I’m so mad about is CVS Speciality didn’t let me know I needed pre-authorization (PA) when I called for a refill. Had I known I needed a PA, I would have called my doctor to get the ball rolling.

CVS Speciality dropped the ball. They don’t care that I’m a patient who DEPENDS on this transplant drug to live. They don’t care that I’m human. And THAT’S why I’m so angry. I do a lot to take care of my health and be an advocate for myself, but I don’t know all the questions to ask and CVS should help by sharing all the information they have.

Thanks to my care team and Walgreen’s amazing pharmacists, I was able to get a 14 day supply while CVS gets their sh*t together.

I continue to call and check with CVS Speciality on when I’ll receive my meds, as of now I’m on a strict 14-day timer. On Jan. 17 I was told by CVS Specialty I was denied my one transplant drug because I hadn’t “failed the generic.” As an organ recipient, in my eyes, failing a generic is not an option. Failing a drug means off med levels, potential hospitalization and/or most scary, the possibility of rejecting my transplanted heart. I’m sorry, but, “failing a generic” doesn’t even seem like it should be an option on the table.

I talked to my care team and they said they’ll appeal. That this happens “all the time” and normally, after an appeal and it’s explained why the drug is needed, they’ll approve the medication.

My team appeals and on Jan. 22, I learned I’m denied again. I’m planning to leave the country Jan. 25-29 and will run out of my drug the night of the 29th. So if I got stuck due to plane issues or whatever, I wouldn’t have the one transplant drug I need to survive. Obviously, I’m freaking out.

I’m talking/raising my voice to CVS Speciality multiple times a day to learn what I can do to appeal again. Let’s just say, CVS Speciality has no idea what they do. I was told multiple times I couldn’t appeal, that this was the end and I either took generic or pay ($200+/week) out of pocket. I immediately asked to speak to a manager, my fight was just beginning.

Of course, when asking to speak to someone higher up, the option to appeal and do a peer to peer review became available. A peer to peer review is when a doctor who works for CVS Speciality calls my doctor and they, quite literally, chat about why the drug is needed. I get it, this prevents the doctor’s from prescribing unneeded expensive meds, but I’ve been on this med for 11+ years and of those, I’ve been with CVS Speciality for 3 years.

I finally talk to a pharmacist tech at CVS who gets it. She’s truly listening to me and I apologize for raising my voice to her. I know it’s not her, but CVS as a whole. She told me she understood and if she was in my shoes, she’d be freaking out too. For the first time, I felt like someone was listening to me. She said she’d file for the peer to peer review and expedite it, but even then, they have 72 hours to complete it. It can take so long because the CVS Speciality doctors are practicing doctors. This was all done on Jan. 23rd.

On Jan. 24, I’m still waiting for an answer. I decided to call Cigna, my insurance and see if they can override the decision anyway. The lady I spoke with was so nice and understanding. Long story short, I got on the phone with Cigna and CVS Speciality at the same time…and once again, CVS was no help. With Cigna on the phone, I asked CVS what I’m supposed to do on Tuesday when I wake up with no mediation. The CVS guy literally says “I don’t know what to tell you.” I said, “Do y’all expected me to get sick and go the hospital on Cigna’s dime?” He continued to tell me he’s done all he could and with that, we all hung up.

To cover my butt, I paid an obscene amount of money to get a 7 day supply of meds just in case I got stuck out of the country. I hated to do this, but I was between a rock and hard place.

Finally, the morning of Jan. 25 (our flight was that afternoon), I got a call from the sweet CVS pharmacist tech letting me know I was approved. I won. Finally. I ordered my meds and have them overnighted so they’d be here when I returned.

The whole timing of it all was a bit weird to me, so I reached out to my care team to see how the peer to peer review went. Here’s the best part…THEY NEVER CALLED. THERE WAS NEVER A PEER TO PEER REVIEW! This just shows me, my health care is in my hands. I can advocate, call and make an uproar to fight for what I know is right.

So, with this rant, I want you to learn to be an advocate for yourself. I don’t want people to ever be in the situation I was in. I was lucky, I could pay for some medicine out of pocket, but a lot of people can’t. I’m sharing for them and for those learning the system.

Here are some tips to hopefully avoid the mess I was in;

• Ask if your drugs need a pre-authorization from your doctor.
• Ask if there is anything else you need to do before a drug is shipped or filled.
• Work with your care team. I’m thankful for the relationship I have with my doctor and RNs.
• Do not take no for an answer. Fight for yourself.