Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Perhaps this will be helpful to anyone who is a month or two behind me - and bear in mind two things, please. One, I will sound a bit frustrated here, but I'm genuinely not; I'm stuck in the system now, and this is how systems work. And two, I'm in the US, and I have reasonably good health insurance. My experience may not apply across the board.
I got a scrip for Humira on December 29, and I will not actually have the product in my hands until January 24. However, I have spent about four hours so far this week on the phone. At no point has anything been denied here - the prescription has been improved by the insurance company, the reduced-pay card from Humira was approved. There have been no actual problems. But the the sheer number of phone calls has amazed me. The pharmacy that will eventually send it needed to have a lengthy discussion with me about the shipping process. I had to call to activate the Humira card (which will lower my copay, this is a good thing), and that meant being on a hold a few times. I was called by the insurance company to verify information. I was called by the insufferably perky script-reading Nurse Ambassador ("I'm so HAPPY to take the Humira journey with you!!!") who wanted me to list three goals I have when I go on the Humira (huh?) and wanted to talk through the process of doing the injections. She needed to read all the fine print and I had to answer 'yes' to indicate that I understood. The shipping pharmacy called again today to review the information, just in case, apparently, I moved in the last 24 hours and forgot to mention that to them.
Remember point #1 above: I am happy to be starting Humira, and I realize all these people have a job to do. I am glad someone is taking the time to make sure I understand the possible side effects, and understand the injection process. I am grateful that I could ask questions. I am really not making fun of anyone - I just have a really low threshold for perkiness, and I could have done without all the verbal exclamation points from someone telling me how exciting this was going to be.
But, seriously, I'm self employed, time is occasionally at a premium, and I had no idea that I was going to spend so much time on the phone this week. There are weeks in the year where I would literally have had to hire one of my workers for a few extra hours just so I'd be able to take an entire afternoon to deal with the phone calls. This week happened to be a light one. So, if you're going to be starting a biologic, know that this might happen.
Also, when I got the Rx on Dec 29, I let myself get my hopes up that the turnaround was only a few days away, not realizing that it would take nearly a month. It's a bit like when a volunteer told me I was 'right around the corner' from the end of a marathon and it was still four miles away. I am rationing out my hopefulness carefully, and would have held on to that particular bit had I known it would take a full month.
Oh, one last thing: there were very, very few things all these people told me about the Humira that I hadn't already learned here. So, kudos to the support system!
And Depot, hilarious your side effects for Actemra. And that is another thing we don't have to do - report side effects. We just tell our doctor and he writes Health Canada to record the changes
And I do agree with those side effects for Actemra. One of the worst biologics I was ever on. Yet, a young woman next to me getting an infusion of Actemra said it saved her life, and no side effects. We are all indeed very different when it comes to RA and treatment options!
Oh yes, Katie! One of the reasons our system is so different, is that we are not work, or company based. The provincial health plan is administered by each province. Treatment is supposed to be equivalent in every province and territory, although I know for a fact that seeing a specialist of any kind is tough in the NWT where my oldest son lives. They come in on a fly in basis, and are only there a few days a month. But I guess that is what you get for living close to the north pole!
My point being is that work has nothing to do with medical care. So it is more carefully monitored for expenses, and there are rules and regulations about what you can charge as a health care provider or for the cost of medications. So not free market, but these companies are definitely making a profit even at the much lower cost.
THANK YOU NURSE AMBASSADOR!