How Much Does My MS Cost?


Does anyone understand his or her medical bill?
I read this article, Bitter Pill, and I can honestly say I both understand more and less than I did going into the article when it comes to how much my healthcare costs.  It is an incredibly interesting article for me because in many ways it brings to the forefront issues about which I did not know I was clueless.
I have gone through medical bills, spotted mistakes and even brought them to the attention of my insurance.  At times, this was not in my financial interest as some of the bills mistakenly put me over my deductible for the year.  I have certainly questioned and denied permission to have lab tests both in the hospital and outside asking why I should have tests that will have no impact on my treatment.  Still, the tests are common and acceptance implied unless disputed.  How many people talk coherently to the nurse coming for a blood draw at 3am? 
For what it’s worth in this article documenting much of our crazy charging healthcare system, Biogen mentioned on page 6, also makes the MS drug I take. I have had 73 infusions thus far. The last 15 have come with the benefit of the copay assistance to reduce drastically my costs (props to Biogen). It is still noteworthy to me that I had more than 55 before anyone mentioned the possible help to me.  Of course, my insurance does not care who pays my deductible so why would they mention assistance.
Reading this article, I have rarely seen a better argument for a Universal Payer system. This article is crazy, and it is completely inline with what I have experienced with my MS treatments.  To think, people routinely get on the government for the notorious $100 hammer in the 80’s. That is nothing compared with a $7 alcohol prep pad. Good grief…and this is the efficiency of private industry?
I note single payer does not mean exclusively government run. From the example used in the article, a data center run by Blue Cross Blue Shield gets and processes the claim.  Then they send the result to an auditor (also private) and following that process to a payment center (private).  The system is then backed up by a recovery system allowing private firms to audit past payments for over payments with 80-90% of what is reclaimed going back to the government and 10-20% going to those who found the problem. Government role in Medicare is to set up contracts, set up payment rates, and pay. Single payer need not be the mismanaged mess of a state’s or county’s DMV.

I think we need to get away from the chargemaster system currently in place. Can anyone really claim this is more efficient than Medicare?  I wish I thought this article was out of bounds, but it fits too neatly with my experience. Do people really think Medicare is inefficient compared with chargemaster driven double and triple billing common in many medical bills.  

Amongst all the questions this article raised for me is one for which I still have no glimmer of a solution:
 “If we need to get away from a chargemaster, mysterious billing driven system for all aspects of our healthcare, how do we do so?”  First I think we may need O’s truck to handle the current system.

(More on my MS and fostercare on next page)

On a personal note, every couple of months a nurse calls to follow up on my MS progression and treatments.  I am always asked, “Have you missed any work because of your MS?”  I respond truthfully, usually with a negative.  Still, without missing work, I often end up missing family events. 
Why is this type of question so rarely asked about family and non-work events that are to my mind at least as important?  My answer would often differ.
Second personal note: I find it often feels terrible to make mistakes or to work slower than others may want, but you know what is worse?  Not even being asked to try is a harder sharper blow to my confidence.   Of late, I have found this more frequently invading my consciousness.  When did I become sensitive to this kind of crap instead of just thankfully taking the help?  It is a hard pill to swallow because I know the issue is my own.
My last memory and question for the week revolves around the foster care and adoption system in the U.S.  Why is there so little concern when a young kid has visits with their biological parents for months and still shows no signs of bonding, even to the point of the child throwing temper tantrums when told they will spend time together?  Should other common passive resistance strategies like instantly getting sleepy in an effort to sleep away time spent with biological family be a cause for concern? 
It’s heart breaking to watch a foster kid screaming as (s)he is passed back to a biological mother for the day.   It’s worse when the mother shows no enthusiasm to see her child.  For the love of all that is good, show some emotion at the prospect of time with your child!  They can sense apathy or worse.
I think this weekend represented one of the hardest parts of foster care.  We have only so long to touch lives. At least there are moments like below where we bring what looks like happiness, even if we know the child has been sick and miserable all day.
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16 thoughts on “How Much Does My MS Cost?”

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  3. My blog is sharable and open for any to read or pass along. I’m glad people find the information useful. For me, it is simply a way of tracking what’s happening in our lives and what I am thinking about this week.

    As for follow ups on this topic, sadly, I am sure it will come up again and again.

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  6. Yes, this one hits the nail on the head, although even that doesn’t easy nailing the jello to the tree. I will also share this article at Facebook pages where I add resources for people with MS.

    Be well, Geoff, and love love love those little ones!You both are their angels, you know!

  7. Thank you all for the comments. I am honestly surprised the Time article hasn’t gotten much attention. I know it isn’t a short read, but it is a great summary of many of the problems we face with healthcare in the U.S. today.

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