Our income is too high to qualify for Medicaid, but if we could, Ms. Ché and I would receive rather strictly rationed care for our conditions at no out of pocket cost -- or very little cost -- to us.
Our conditions (she with diabetes and a number of chronic conditions that come from it; me with RA and a number of complications) are rather startlingly expensive to treat, starting with medications which, if we had to pay rack rates for them would run about $4,000 a month. Her's run approximately $1,200 a month at full price, mine around $2,800.
Thankfully, we don't pay that. She gets hers at no charge from IHS, and even though I am now in the Medicare Part D donut hole, my meds are expected to cost me only $600 or $700 a month until my total drug spending for the year tops $3,700 which will then trigger catastrophic coverage (how reassuring) which I understand will mean I receive future medications at no out of pocket charges -- though I'm not entirely sure about that. Co-pays before reaching the donut hole usually ran $10 to $45 a prescription.
My most expensive medication is mycophenolate; hers is insulin. Mycophenolate is prescribed to control my ILD (interstitial lung disease, ie: pulmonary fibrosis) caused by RA -- which is not to say I don't have other lung problems thanks to years of smoking cigarettes (stopped about 20 years ago).
In the original capsule form I was taking it, mycophenolate was running about $900 a month at full price. My doctor changed to tablet form when I told her how much it cost, and that's running about $500 a month I think (I haven't got a complete statement yet). The other medications I take for RA and other issues run another $2,300 or so a month. Wow. That's for nine other prescriptions.
Then there are the infusions which are supposed to control or even suppress the RA to the point where I go into complete remission. So far so good. I've had two infusion treatments, the last one a month ago, and since then, I have had only minor joint pain and discomfort, and as a rule, whenever the pains come on, they self-correct within minutes or an hour. It's remarkable compared to what I was going through -- days of intense pain week after week that apparently nothing would abate apart from -- on occasion -- heavy duty opioids which I'd rather not take. (Gee, ya think???)
Shall we talk about the cost of the infusion treatment? Sure, let's talk about it.
I just got the bill for the infusions in May: total is $46,583 for the two infusions (and I may have to do this again in six months.) Most of the cost -- $42,562 -- is for the Rituxan (I think I received 5mg of the specific drug in an IV drip each time.)
This is literally ten times what I was told the treatment would cost.
I'm flabbergasted. Who wouldn't be? My co-pay -- at this point, as adjustments are still possible -- is $1,898, whereas I was told it would be between $500 and $900 depending on how much "insurance" paid, and it was possible there would be no co-pay at all if "insurance" picked up the whole bill.
Insurance being a Medicare Advantage plan. OK then.
$46,583 for 10mg of Rituxan. It seems to be working, so I'm not complaining about that, not at all. But the cost? What the Feuk?
This is a cancer drug that is used for RA in particularly difficult cases (such as mine) that aren't responding well or at all to more conventional treatments. What happened in my case was that my rheumatologist tried a variety of "standard" treatment medications, and they all ultimately failed. For the three months leading up to the infusion treatments, I was experiencing repeated RA flares, essentially every week, each one lasting five days or more, during which I had terrible, debilitating joint pains which none of my usual medications seemed to control. I wound up in the ER due to sciatic pain which was alleviated with a muscle relaxant. But the RA issue remained, and doing something outside the usual treatment seemed to be required.
I agreed to the infusions because my rheumatologist seemed to have run out of options. My condition was clearly getting worse, and medications weren't working.
So. Infusion it was to be. I asked about cost a number of times, and it was difficult to get a straight answer. It all depended on factors that couldn't be known in advance. Ultimately, I was told that the standard rate for treatment was $4,600. How much I would be liable for would depend on how much "insurance" paid, which could vary between 90% and 100% depending. So I should be liable for no more than a $460 co-pay, and I could conceivably owe nothing.
Well, that's not even in the same ball park with what I was billed. Not even remotely.
First, of course, the treatment cost is not $4,600, it's over $46,000 which -- if it was known -- was concealed from me and apparently from the nurses and patient advocates I was trying to get information from.
Second, "insurance" has paid nothing toward the cost. Instead, there was an unexplained "adjustment" of $44,584, which is how my co-pay of $1,898 is arrived at.
What I suspect is happening here is that -- like so many other hospital billing practices -- the hospital is presenting an absurdly high initial bill for payment by "insurance." I was told the initial bill would go to Presbyterian Senior Care which would then bill Medicare for my treatment, and the amount I would be charged would depend on how much Medicare paid. But that doesn't seem to be the case.
In fact, nothing I was told seems to be the case.
At least at this point, it doesn't appear that "insurance" is involved at all, and I am being charged the "patients'" rate for treatment as if I'd come in off the street. But I don't know that that's the case because the billing practice is so opaque, and nobody seems to be able to penetrate it.
This is a very strange way to engage in economic practices, but it seems to be universal in the health care industry. It works for them. More or less. But it doesn't work for anybody else. It wasn't meant to, was it?
I'm not sure how to proceed at this point. I was talking to a friend yesterday who came over to pick up some tomato plants. The issue was, "Do I feel better?" I do, much. Pain is almost completely gone, and that counts for a LOT. Compared to where I was before I started Rituxan infusions, it's night and day.
Therefore: "whatever they charge is 'worth it', no?"
Just wanted to get some of this down before I forgot.
UPDATE: I got a detailed breakdown of charges and who pays what today. I'm still going over it, but it makes somewhat more sense (well...) and I'll try to get into it in another post.