Sunday, May 5, 2013

Justify This

I wanted to clarify my reasons for writing yesterday's post. I hope that no one assumed that I wanted to boast about my insurance coverage.....

What I really wanted to comment on was the enormously conflicting emotions that I felt when I looked at that statement; the first being relief that I wasn't on the hook for $56 thousand dollars and the second gratitude to John for providing insurance that was on the hook for that outrageous amount.

The third: I was incredulous that the cost was so staggeringly high. How does that happen? Why does that happen? Where does the money go?

And then the biggie.

Do I deserve this?

I mean, I didn't do anything -- at all -- to merit being the recipient of a therapy that could conceivably end up costing hundreds of thousands of dollars in the long run. I simply had insurance that covered it and a doctor that would order it and a clinic that would administer it.

That's all.

Yes, I got a good result from the medicine, but then what did I do with that good result? I sit around on my butt and write about flamingoes and wah wah wah about my weight. Is that worth $56 thousand dollars? But then, what is worth $56 thousand dollars? Is anything that I could do that would be worth $56 thousand dollars per ONE dose of rituximab?

So then this question presents itself: Should someone or something decide who DOES deserve expensive therapies? And how would that decision be made? What criteria would be used and how would I feel if I didn't meet it?

Too bad I only have the questions.........but no answers.


Brigid Rauch said...

Some more questions for you: how much of that $56,000 went to the doctor, nurses, researchers and people who manufactured the drug, and how much went straight to the pockets of the managers?

Anonymous said...

Why should it cost so much money to alleviate pain & suffering? Why should the only drug that would save my father's life from cancer cost so much? Did he deserve it? Of course he did. Please don't blame yourself Julia; what's wrong is how medicine works as a business in this country.

Laura said...

What would you feel like without it? What additional weight of time and worry and effort would that mean to your husband, your family, your friends?

What does your advocacy for people with Sjogren's do? How much does your outreach help? How would that be impacted if you weren't getting these infusions?

Would you be charged $56,000 if you didn't have insurance? Often the "cash" rate is lower than the insurance rate (although I don't doubt it would still be staggering in this case).

One dose of rituximab buys you, what, about 3 good months out of six, and two mediocre, compared to baseline bad? It's not like it's $56k every two weeks. Or like it's getting you only a couple weeks of good affect.

Even if it were...what do you do? Who are you? Try *who are you*. Last I checked, you are a human being. I think you deserve the best we can do for you, as does everyone else. I am, of course, biased in your case. :)

But I think you sell yourself short. I remember you cooking and serving a meal. I remember you hugging your family - advising them - comforting them. I remember you laughing and smiling, and my boys laughing and smiling back. I think you do a lot with these infusions, all of which in the end is living your life.

And that's what they're let you live your life to the fullest.

Not to let society judge that life. What, we should only give it to those doing "worthy" things? Then we can start arguing and at the end of the day people will try to deny it to politicians and others, if they needed it, based on their political leanings. And much as I dislike some political positions, that too would be wrong.

When we start trying to judge "what is done" with the energy and "who is good enough" I think we've already made a huge mistake. We can maybe have conversations about whether very expensive treatments are warranted if they are buying nearly nothing, or nothing, for the patient.

But your mousy chart clearly shows they're helping you a lot. And it's cute, too. :)

Julie said...

I can understand your mixed emotions, my mousey cohort. I have struggled with that, with the 6 bios that didnt help my RA/sjogrens, one bit, and now I am on Rituxan, as you are. Each of my Rituxan infusions are about $20,000. Thank God I also have insurance,through my husband, plus medicare ,because of being disabled. I feel guilty for having 6 years of expensive bios, up until this point, and now this VERY expensive mousey medicine.

I think though, that we have to come to the place, where we try to use any gratitude, to pay it forward. By this , I mean, doing things such as what you are doing, by educating, encouraging and advocating for others affected.

I hope there comes a day, when treatment is available to all, despite their income and insurance. Til then, I dont think guilt should overwhelm those of us, who have had access to expensive treatments, but not take it for granted, and do all we can to encourage our other sisters and brothers with sjogrens/other related diseases such as MCTD, RA, etc.

Shara from Seattle said...

Sister Julia, I wish we were all able to have access to quality medical care. I think you did everything right. Living right has it's rewards. You married a good man, raised a family in the same community, worshipped the Lord and you ended up with a galore of blessings. Don't you feel ashamed of that girly.

I live next door to a scientist working on a cure for lupus. He goes to work everyday, every year, looking for some kind of cure. Research and development costs money. As far as I'm concerned you are a big part of that. You are brave enough to continue that frightful journey into experimental treatments that drag you through hell each time you are injected with it. We know.You are describing those experiences all the time.

I read you every morning. You have taken me on vacations with your friends and family. I've seen the coast, a place that I wouldn't be able to even walk to the water. Places I used to see all the time but don't anymore.

Are you silly? Only sometimes and that's a good thing because you are the best kind of silly. We need a sense of humor.

Your big flamingo cracks me up. I have a friend that keeps her Christmas tree up all year. Another one that is addicted to shopping in dollar stores. A thrill seeker who likes jumping out of airplanes. You fit right in. But there is something that you have that they don't. You show up on my computer every day and say hello.

See you tomorrow.

Kelly said...

Medical billing is a huge racket, a scam. No one pays that stated amount on the bill. The insurance companies and Medicare write down the totals by something like 80%. When my mom was ill we were billed several thousand dollars for a 10 minute non-emergency but absolutely necessary ambulance transfer from a rehab center to a hospital that was subsequently deemed "medically unnecessary" by some medicare functionary even though we were not presented with any choice or warning that the ride might not be covered and could find no way afterward to fight the "unnecessary" designation.

Consequently, the ride was not covered either by medicare or her private medicare supplement, which always follows medicare guidelines about what will or will not be covered. The transport company kept harassing us until my husband offered to pay them the same amount that medicare would have paid, which amounted to a few hundred dollars and which seemed in line with the service provided, figuring the special vehicle and trained drivers and all, and which we could afford, so we paid it and they accepted it as payment in full. (We knew the amount medicare actually paid for this service because they paid for several OTHER rides of an identical nature and we had the paperwork.)

So, is that the actual amount paid by your insurance after write-downs? Or is that the inflated, pretend amount they start with so they can get paid a reasonable amount after deducting 80%? Do they do this to scare us into believing that we can't survive without insurance when we look at the pretend totals on the bills we don't have to pay?

And as to feeling guilt abut having more access to health care, I don't know if this will help assuage that guilt for you, but there was a fascinating article recently in the Wall Street Journal reporting about a study that actually looked at a population of uninsured and therefore medically underserved medical patients, some of whom were granted coverage in a state-sponsored lottery and some of whom did not get coverage. Setting aside the implications of the government using a LOTTERY to decide who does and who does not get health coverage and looking as dispassionately as possible just at statistical outcomes, it was discovered that there was no improvement in health outcomes by any statistical measure for those who got coverage as compared to those who didn't have it even though those who got the coverage did indeed USE more health care since it was perceived by them to be free. Now there is something to ponder, for sure. More health care didn't equal more health. Hmmm. Scary thought, that.

Since you know the infusions are actually helping you and the write-downs should bring the service somewhat in line with the actual cost to provide it (we hope), I would consider it money well spent.