Category Archives: adoption

Unneeded Barriers to Treatment

Super Trooper A
Super Trooper A

One of the common frustrations with our current medical system exists on the access to treatment front.  A had an endoscopy & colonoscopy on Monday. The hospital required a copy of her new birth certificate and the legal order of adoption in order for my wife to authorize the procedure. They would never require this of a child in their birth parents’ care. What happens to adoptees being equal to others? What would have happened if we could not provide both? Would they have denied the surgery?

For me, this comes back to the question of access for services. Has there been a rash of cases where people pick a random kid up off the street, make them go through the bowel clean out process, and take them in for a colonoscopy & endoscopy? I know there are some seriously mentally ill people in the world, but this crazy would need a whole new word to describe it.

I question the reason and the logic for the imposition of this barrier to treatment.

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Example 2 of a Barrier to Treatment:

Last week, I wrote my neurologist to say I was going to run out of adderall before my visit later this month. He sent me a script. Woohoo.

On Thursday, I found out I needed prior authorization again. His office called it in the same day. Then on Tuesday, I got a letter from my insurance company saying the prior authorization was denied because use of adderall is experimental for MS patients. After calling and going through menu hell, transfer hell and finally menu transfer hell for an hour, I was told to write a letter for reconsideration and mail it or fax it. They then had 30 days to respond. How can one get through these types of barriers quicker than 30 days? With 3 days worth of meds left, I wrote and faxed this because I did not have 30 days to wait (leaving off header and sign off junk):

I have taken Adderall XR since January 2010 to treat both my ADD and fatigue resulting from my Multiple Sclerosis. It has allowed me to continue to work a full time job managing a multi-year project.

Suddenly considering this drug experimental seems bizarre. As I look at patientslikeme.com, it appears I am not alone taking adderallXR for symptoms resulting from MS. There is a more than statistically significant rate of success for MS patients using it to treat fatigue, cognitive impairment and brain fog. This web page contains the results of 318 MS patients taking it. https://www.patientslikeme.com/treatments/show/3597#overview

Taking this drug has allowed me to work a full time job (no given with MS), go home to help raise three medically fragile, adopted and fostered children, and write as hobby which has lead me to a position on the American Board of Internal Medicine and the Team of Advisors for research at patientslikeme.com. Having this medication suddenly denied the week I need it refilled seems ridiculously bad timing.

Please reconsider this designation and let me know so I can fill the prescription.

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It was approved the next morning: Barrier Cleared.

What I find daunting is the prospect of going through the phone system after running out of medicine to help with maintaining attention. At that point, a patient who needs the drug would be denied simply because they need the drug. Thankfully, I had two days worth of medication left to allow me patience to go through phone system and write a letter for reconsideration. It just seems odd to deny the doctors as they put in for prior approval and requiring the request come from the patient. I am all for empowering the patients, but I also recognize our limits in knowing what is needed to best treat our medical conditions.

My neurologist wrote them too after it was approved to give them research to show the efficacy of adderall for treating MS symptoms.

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How We Choose to Error


I was having a discussion with one of my parents this week about how I make my decisions on whether or I not I want to foster or adopt another child.  It all comes back to the two types of regrets I can foresee having when I am older.  I imagine I will have mistake both of actions taken and actions I refused to take.  It must be growing up with a physics teacher.  I think of Type 1 and Type 2 errors.
Type 1 errors in science are when the experiment detects a relationship that does not actually exist.  Type 1 errors are the false positives.   In the decision to adopt, this would mean we adopted and or fostered another child when we should not have.  It would mean we took action when we should not have done so, an error of action.
We all make mistakes in the actions we choose to take.  Sometimes the actions themselves are not even the problem.  It is just the outcomes that lead us to regret taking them.  I think of the nice woman a couple of years ago who attempted to intervene when she saw me dragging my screaming daughter out of Walmart.  She worried I was abducting her, and she felt foolish after insisting on questioning me, her and my son.  I told her as I handed over my driver’s license that I applauded her for being careful.  I hope if my kids ever need it, there is somebody like her to help them.  Still, she said she was so embarrassed, and I am left hoping she never regrets stopping us.  
The second type of error or type II error is when the experiment fails to make the connection it should have made.  In our case, the error would be one of failing to act, failing to adopt or foster when our family would have benefited from the added soul(s) at the dinner table.  I think of these as errors of omission. 
I try to picture myself at 60 or 70, and I imagine looking back.  As I ask myself to ponder the worst-case scenarios, I come back to assuming we make a mistake.  With which would it be easier to live, knowing we could have helped another child in need or knowledge we over reached and are now in a less comfortable way of life?
When I think this way, I come back to my motto of “If you never fail, you never pushed your limits and almost certainly could have done more.”  I have been given a lot in my life, and I would like to think I have done as much as I possibly could have.  I find I am far more predisposed to live with the type II errors.  Let any who would comment say he lived foolishly and naïvely rather than lazily.
Continue on to next page for thoughts from a seminar on traumatic brains injuries and our 9th wedding anniversary (not related, I promise)
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As a side note, I was in a seminar today on brain injuries, and two parts stood out to me.  The first is two thirds of our veterans from Iraq and Afghanistan are coming back with traumatic brain injuries with most of them being the “mild” traumatic brain injuries.  This is interesting to me as the “mild” traumatic brain injuries tend to affect the transmission of signals through the nervous system, and so many of their symptoms match MS symptoms.  Even the delayed onset (for months or even years) can leave them not knowing from day to day when they will experience the impact of previous injuries.  I am so sorry for their injuries.  I would not wish the invisible injuries on any one.
The second part of the seminar that fascinated me was a question from a concerned coworker in the audience.  He was managing a vet, and he wanted to know if there was documentation of a traumatic brain injury ever completely changing a victim’s personality.  The presenter gave the example of Phineas Gage who had a steel pipe shoved through his front lobe and lived but was rumored to develop a host of symptoms typically thought to involve the frontal lobe (lack of self control, inhibition, etc.).  She pointed out the case is mostly psychology lore at this point though as nobody cared about his personality before the incident.   What got me about the question was the presumption we know somebody’s personality.  Is it always remembering somebody’s birthday, being rude or polite, empathetic vs. uncaring, anal vs. lax, etc.?  What is a personality that we think we can quantify it to say it completely changed?  I know J says I have changed, but am I fundamentally different than I was?  
I hope not.
J and I celebrated our 9th anniversary this week.  It’s crazy how time flies.  J, knows me and my sweet tooth very well.  She had a local bakery make me pina colada cupcakes complete with rum!  Yummy!
I gave her a picture frame with space for three pictures above the words, “Live, Love, Laugh.”  In the space for the first picture I put words I have put with every anniversary,
“Stay with me
The best is yet to be
This I believe”
The second picture spot has the photo at the top of this post, and the last spot is the picture at the bottom.  
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