Infusion Confusion

So, I finally got my first infusion for a medication I was previously self-injecting. You may be curious why and it is confusing. Sorting through this may be helpful to others so here goes.

Just to give a little history and for those of you new to the whole medication-complication-irritation world we live in: it is rarely an easy process, either shifting to new medications or shifting insurance carriers. Of course, there are other issues that arise but I am going to focus on these two for this article.

Using different RA medications over the years

Over my 20+ years with RA, I have been on at least a dozen medications, which is not unusual at all. That said, nearly every time, I and my doctors have had to have varying degrees of near hand-to-hand combat to get them approved. It is a nightmare and one of the most “painful” aspects of RA management. I never get used to it and I always find it extremely stressful. 

Sorting out insurance plans and covered treatment options

It is incomprehensible to me why insurance companies (to whom we pay hefty premiums for our health care needs) make the process so cumbersome and difficult and unpleasant. Add to that the fact that we often shift insurance carriers over the years for various reasons. That adds a whole new level of complication as we try to sort out which plan to get or what medications and treatments are covered. Additionally, we have to START ALL OVER with the approval process for medications!

Have documentation of your treatment protocol

I tell you these facts so that you are mentally prepared for this as best you can be. Perhaps the most CRUCIAL thing you can do is plan ahead as much as possible.  If you know you are making changes to your medications or your insurance carrier, discuss this with your physician and get all of the documentation prepared so that you do not have gaps in your treatment protocols. That will give you some control and ease the stress.

Medicare, a Supplemental Plan, and a Part D prescription plan

I knew in October that I would be starting Medicare and picking up a Supplemental Plan and a new Part D prescription plan in January so I started the process of getting my rheumatologist on board with the changes we needed to make. As it turns out, there were many complications along the way, human error and just incompetence. All of which made the transition chaotic and scary because I was on the verge of running out of my medication. 

Infusions under the medical side of Medicare

The good news for me, and anyone who uses injectables that are also available by infusion, is that I now can get my medication under the medical side of Medicare, rather than through the RX side, simply by switching to infusions as the medication delivery method. I did not get this information as a routine matter of course from my care team. 

Rather, when I spoke to the new rheumatology practice physician’s assistant during my first visit, I mentioned my dismay at the fact that my RX for Orencia would cause a serious financial burden for us once we moved to Medicare and the Part D for prescriptions. It turns out it is a tier 3-5 (so complicated it is absurd) and so it would not be covered by any of the reasonably priced Part D prescription plans we were considering. My monthly premium would go from $15 to nearly $300 plus an over the top deductible! 

Thankful for information from the PA

Confusing you ask? That is an understatement. Thankfully, the physician’s assistant (PA) told me I could have my Orencia administered via infusion and NOT HAVE TO COUNT IT AS PART OF MY PART D. That was the best Christmas present I got last year!

Medicare and RA treatments are confusing

The point of me sharing this saga is that there is tremendous confusion around not only infusions but all of the medications and treatments we need to manage our RA. That means each of us, that means you, must be your own researcher, advocate, and detective when it comes to sorting through all you need. Doing it in a timely manner is crucial as well. I started this process last fall and just got my first infusion the last week of February!

Continue to advocate for yourself

There were times I felt like a pest and a nag. Do I regret that? Not one bit. Because I know that had I now done that, there are outcomes that I would have had that would have been terrible for me...namely higher costs, lack of the medication I needed, and likely a flare thanks to the above issues.

So, do not ever despair, do not ever quit and, above all, stay determined! If you need to reach out to someone to help, do so with confidence that you are doing exactly what you need to in the interests of successfully managing your RA.

Nan

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