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Nothing scares someone with a chronic illness more than changes in health insurance. So I have to admit that I’m terrified.

Today I start Medicare. 

This doesn’t sneak up on you. About six months before you’re eligible, you start getting mail and emails and phone calls from insurance companies trying to get you to sign up for all the supplemental policies that come along with the government-provided coverage. But sorting it all out, trying to figure out what you’ve got and what’s going to be covered, is a bit of a nightmare.

I take about a dozen prescription medications, not counting my biologic infusion. I searched carefully through the 25 or so prescription plans available to me until I found one that covered most of these meds for a premium that wouldn’t bankrupt me (at least not immediately).  As it was, I couldn’t find a plan that covered two of my drugs. One is a blood pressure medication, which is no big deal because there are loads of those. The other is the one that I consider critical because it provides amazing relief for my Sjogren’s symptoms. There is only one substitute that I can find and it doesn’t work as well and it has considerably more side effects. And even though it’s “covered”, it will still cost me more than $100/month.

The really scary part is that I can’t get anyone to tell me whether or not my biologic infusions are covered. I’ve talked to Medicare and they tell me that the fees for giving the infusion will be covered, but they won’t tell me if the drug (which runs about $15,000 retail) is covered. They need to speak to my doctor or the infusion company or both. Even if it is “covered”, if it’s a high-tier drug, it might only be covered at something like 50% — which is well beyond my capability to afford.

Right now I’m doing better than I have in years. My biologic, Simponi Aria (along with methotrexate), is working amazingly. I do not want to go backward. I would like to continue to feel almost human again.

I’ve been given assurances by a wide range of people including my rheumatologist, the infusion company, and even the great folks at Janssen (who manufacture the drug), that it should/will be covered. But I won’t know probably until a few days before my next infusion in June.


The interesting thing is that I consider myself lucky. Given the current uncertainty in the health insurance industry and the chaos that is going on in our legislature about replacing Obamacare, I’m glad I don’t have to face those challenges. At least I have a clear definition of what I’m facing.

I hope whatever you’re facing today brings a smile to you and those you love. Thanks for checking in.