F26 with Seronegative RA (suspected YORA) diagnosed Oct 2025. I just need to rant.
I am so fed up. I have been in and out of doctors since 15, but have never experienced healthcare as bas as it currently is. This is my third medication in 6 months and it has been nothing but issues. One thing I will NEVER understand is why the costs of these drugs are SO high, to the point where companies HAVE to offer a savings card and credit card. If the cost of the drug is modifiable with these "cards", then why arent we selling it for low-cost to begin with? Why do you HAVE TO ENROLL in order to receive your medication for 1/50th of the original price? Then there are all these suggestions such as "dont add the credit card to your file" that makes the whole thing just confusing.
On top of that, Express Scripts/Accredo sucks. It got so bad at one point switching from Med #1 to Med #2 that I had to report them to the BBB. Unfortunately, that was the only way I could get ANYTHING done. After turning 26, I was without Med #1 for 6 weeks for an unknown reason... Allscripts just kept telling me I owed $1700. They kept blaming the savings card company (AbbVie), but when I would call them, there was no issue. I called Accredo 17 times over that 6 weeks in an attempt to get my meds. I double- and triple-checked all my information, having given them my new insurance information 8 weeks ago. I eventually got fed up and reported them to the BBB and that I wanted to switch specialty pharmacies. It wasnt until I spoke with a member of their management that the issue was actually Accredo's fault and was corrected within 6 days. The issue? Accredo was trying to charge my old insurance card on file that I wasnt even covered under, and did not even bother trying to reprocess the order. If they did, they would have known I was not covered anymore. Once the meds finally got switched, I had a malfunction with the first injection of Med #2 causing the needle to prematurely activate. Instead of receiving support and advice, I was blamed for the malfunction.
Switching meds is a terrible experience. My insurance claimed my "reaction to sulfasalazine wasnt considered major enough" (I broke out in whole body hives from a Sulfa-allergy), and denied me from stepping up. My doctor was not willing to put me on Methotrexate as I am of child-bearing age. Fast forward, I am on humira and one day it is changed, without warning by the specialty pharmacy, to the biosimilar Simlandi. I end up having a systemic adverse reaction to Simlandi. Doctor decides to switch me to Rinvoq and I am denied AGAIN! This time for "not failing a TNF-a inhibitor".... but I did.... I failed Simlandi. Another prior authorization is needed, the second one in 6 months.
With the RA diagnosis, I was happy to atleast seek disability accomodations as I am a PhD student at a computer desk all day.... Nope! Disability accomodations are pay-walled behind a $180+ fee asked by your provider/Rheum. Could you fill out the form yourself and get their approval? nope. They. HAVE. to. fill. it. out. It almost seems like a form of disability discrimination... I cannot get the proper accomodations simply because I cant afford to pay the fee (I am a PhD student).
I am sorry for complaining, I am not usually one to. However, these things are genuinely impacting my quality of life. I thought that would come more from the disease itself, but all these external factors are making it worse. RA is already, albeit, a bit discouraging knowing what the outcome of our future could be. However, these issues do not make our lives easier, especially when halting our disease progression is dependent on being on medication. Hopefully some of you understand where I am coming from. Thanks for listening.