I’m pissed off!
Its been 8 months and 1 week since I had my last infusion. Now some of this time I can blame on myself. I selected a new Rheumatologist poorly. I didn’t do my homework and just “ass”umed the doctor I selected was the doctor who I thought he was. So, with that time factored in of taking the time to wait for an appointment with him, we can subtract 2 months.
Why did it take so long.??? Well……I am not sure to be honest. All I can say it is a complete breakdown of the system in a whole. Somewhere patient care and making patients a priority went out the window!!
Flash back to July 2017. I made the decision to change my Rheumatologist for a lot of different reasons. At the end of the day, it really doesn’t matter why. Part of the reason it took so long to get my infusion is the lack of Rheumatologists in my area of the US. So with the demand greatly exceeding the supply – a patient can wait 3-6 months for an appointment in the Panhandle of Florida. As the baby-boomers age, the need for Rheumatologists increase. Being so close to the beach, our area has many retirees. What goes hand and hand with the over 65 age group – arthritis. Sigh…… so I waited ……….
This is my story……and it should piss you off too!!!
My new Rheumatologist ordered Remicade at my follow-up appointment in December, right before Christmas. I knew that the week of Christmas was going to be a joke and nothing was going to get done so I didn’t start looking for an approval until the next week or so. Having already tried and failed a few other RA drugs I didn’t figure the Prior Authorization to be that big deal. (That’s the problem having worked for a Rheumatologist before – I know how the process works and how long it can take). I used to joke around when doing prior authorizations – the more the patient or the doctor wanted the medication, the longer the insurance company kept you on hold, or would require us to send in chart notes to back up the rationale This drags the process on and on and on
The week of my birthday (January 12th) I get good news telling me that I was approved to receive Remicade at X Hospital. I knew that this was going to be a mess because while I was still working for my old Rheumatologist, this hospital quit infusing Remicade patients because the reimbursement was too low. Basically what does that mean to us – the hospital said no because they don’t make enough money to justify us sitting in the infusion chair for 2+ hours. Awesome. So back to the drawing board. Next try is the hospital I work at. I figured this would be a no brainier and we will be able to get this going quick . Na! That’s too difficult. Because my doctor is from 2 hours away and she doesn’t have privileges at my hospital, they said no. They told me the only way was to get my primary care to co-sign the orders in case something happened to me while I was infusing – they basically wanted a local doctor to be available to advise them in an emergency. Well he didn’t feel comfortable doing that just in the case that I have a reaction. Ok, I get that on some level. But all they are going to do for me is call 911 and take me across the street to the ER. I don’t see it as a problem. But the powers to be at the infusion center said it can’t be done. So my next best option is to infuse over at the cancer center that is 2 hr drive. I wonder if I will run into the same problem again – not carrying Remicade as they are owned by the first hospital. Sure enough – same problem. More time wasted.
We are going on over 2 months since Remicade was ordered and we are still no closer to solving this problem. Mind you I have been out of work since January due to the flu that turned into Pneumonia that flared my RA. The last 2 months have been hell!!!! So what do you do when you are stuck like this???? Cry ✔ 😢 cry some more ✔✔ Once you get this out of your system all that is left is anger! I went back to my hospital that I work for to try to negotiate with the infusion department. I begged. Cried. No luck. They told me to go to the ER to get my infusion. WTH? So you want me to check into an already overcrowded ER with overworked nursing staff so I can get my 2 hr jungle juice 🥤 ??? Tell me how this makes sense. Tell me how this works – I check into the kiosk and say I am having a RA flare and need my Remicade. I take up a bed that might be needed by a 63 man who is having a stroke, or a 49 year old lady who is having a heart attack….. so I can sit there while the ER Doctor does one of two things – either 1 thinks I am a drug seeking person who just wants pain meds, or 2 decides that since he knows little about Remicade and can’t understand why I can’t get it the “normal” way – treats me with some steroids and pain pills and sends me on my way – but not before the 5 hour wait to get blood drawn, maybe an x-ray of the worst offending joints etc. Meanwhile I am taking up valuable space. I love the ER nurses I work with and let me tell you I wouldn’t do that to them unless it was the only way I could get my Remicade and it was a guarantee that I could infuse in the ER. (doubtful)
Rather than doing that I went to Human Resources. I ended up speaking with someone higher up in the department and explained my situation. I told them how the “competitor” hospital was more than willing to try to infuse me – with the exception that they don’t carry my medication. I explained in detail how they went above and beyond to get me an appointment ASAP. There was absolutely no problem with the ordering physician being 2 hours away. I asked her politely why I felt like the hospital I worked at isn’t taking care of their own. I wanted to know why???? Within 48 hrs I was scheduled for my 1st Remicade infusion.
Wow! Being without it so long has taken its toll. I have gone from working 2 jobs, running my kids to cheer and work and everywhere else in between – to walking with a cane, living on Prednisone and pain pills. I can’t do 1/10 of what I could do a few months ago. I have become a financial burden to my family and to my coworkers I have become unreliable and basically useless. It has taken its toll on me not only physically but also mentally. Loss of function is what breaks my heart . I have always been one to go go go. But lately it’s no no no . I want my life back!!!!!!!!!!!!
What do you do in this situation? Move to an area with better care? Suck it up and deal? Or get pissed and advocate for people like us!!!!! This is so wrong. I don’t want anyone to go through this – ever!!!!!! I am sooooo thankful I have the knowledge to push the system that is broken to work for me. I can’t imagine what some of my RA warriors are going through to get their meds or infusions. It breaks my heart! I spent so many years advocating for my patients and when I have gotten to this point in my healthcare journey and needed someone to fight for me, there was no one. Why????? People with complex autoimmune diseases need better access to care. My situation is a prime example of a system that doesn’t work. From here on out, it will be my goal to fight, to fix, to find ways to help my fellow RA Warriors, not just RA, but all Autoimmune Warriors!!! We deserve better treatment, access to care, and some dignity.
Please if you are stuck and need help getting your mediciation – drop me a note I would be more than happy to try to work with you, your doctor and your insurance company to get help. We need more patient advocates to stand up and help the little guys!!!!
Together we can beat RA!!!!