Category Archives: foster care

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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"At Least They Let Him Die"

J and I went to a foster parent training on Saturday.  It was incredibly boring, and became kind of a running gag between us about how we have the “most interesting dates.”  Of course it went late, but we stayed because the last 2 speakers were the only 2 we would have gone out of our way to hear even if the last was sad as all get out.  The highlight of the 5 hours before the last 2 speakers was this Chinese proverb:
“A farmer planted a tree, but it seemed that this tree when planted, watered, and nurtured for an entire growing season did not outwardly grow as much as an inch. Then, after the second growing season, a season in which the farmer took extra care to water, fertilize and care for the bamboo tree, the tree still did not sprout.  This continued as the sun rose and set for four solid years. The farmer had nothing tangible to show for all of his labor trying to grow the tree.
Then, along comes year five.
In the fifth year that Chinese bamboo tree seed finally sprouts and the bamboo tree grows up to eighty feet in just one growing season! Or so it seems….”
This story was told to us to try and instill a keep the faith attitude even if we don’t see the changes in our kids.  I wrote a message to J noting that while the class was talking about the miracle 5th year, I think the miracle was the farmer continuing to water and fertilize the spot in the ground where a seed had been planted four years ago.  Seriously, 4 years of nothing = me giving up and spending my time on another spot…2 years before.  Now think about how long it took to read that blurb… That’s what I got for my first 5 hours. Did I mention we were a little bored?
2nd to last speaker:
For our second to last speaker, we heard from Senior Judge Arthur Burnett Sr. (http://www.dwlr.com/files/bio/aburnett.pdf).  I’d heard of Brown vs. the Board of Education, but I didn’t know there was a case settled before it.  The case before it allowed him to attend college and then New York University School of Law.  From there he went all the way to federal court and advising presidents like Kennedy during the Civil Rights marches.  It’s pretty amazing to think of the path he blazed and through his work with children, continues to make.  I try to keep his story and inner strength in mind as a counter to the often ugly sides of our history both racial and other civil history.  We really have come a long way. 
(Last speaker on next page)

Our last Speaker:
Our last speaker is a former foster-child. I don’t think I will soon forget the exchange he recounted.  He is a survivor of foster-care in the 70’s who went on to graduate college and then law school and is now politics.  He talked about walking back from school one day when he saw another fostered kid he knew from one of the homes. 
 “What school are you in now?  I haven’t seen you in forever.  So what have you been up to?”
“I dropped out.  Prostitution.”
“You mean women pay you to have sex with them?”
“Not that kind of prostitution…  I hate it.  I can’t…”
“It will be OK.  Do you believe in Jesus?”
“You mean the guy on the cross?  At least they let him die.”   
I keep comparing that conversation to the one my kids had last week about their surgical experiences.  I think about his description of boys’ homes, the group living centers for foster kids with no foster families to take them.  If nothing else, his stories get back to the “why do I do this?” in a big way.  It’s a bit unfortunate we ended with him because the speaker before him had an awesome, uplifting life story.  Did the kid he saw on the path even have a chance to live life well?  Still, when I think of what I (we) give up to provide homes, it seems so small compared to what happened to some of those who never got the homes they needed. So maybe his was a good story on which to end.
I was also taken aback when he mentioned only 2% of foster children go onto graduate college.  In part, this is because so little is expected of them.  I expect my kids to go to college or get some schooling after high-school, but that is in large part my passing expectations which were on me to my kids. The expectations led me to know if I put in the work, I will be able to go (and I darn well better put in the work).  Maybe that’s the difference between me and the Chinese farmer.  Because I have no expectation of success farming, if faced with no immediate or short term signs of progress I would give up and try something else.  Maybe the 98% of fostered kids follow my thought path.  With my kids, I am more content to keep watering and fertilizing like the farmer even if I see nothing in the 5thyear.  Eventually something will grow there, even if it looks different than the tree I thought I was waiting to see grow.
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