Category Archives: MS research

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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What Numbers Matter?

Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
I asked for a long time why we cared so much about dots on an MRI if they don’t correlate well with symptoms.  As an MS patient for more than 8 years, I don’t care much about the dots on my MRI.  Still, I can appreciate the goal when we use MRI’s to determine whether our MS is “active” or whether a drug is effective.  We need a measurable, and so we pick a variable we feel gives us the most accurate way to model reality.  Is that not the reason man uses numbers for anything, to describe reality in the way which feels most accurate?
When attempting to solve a problem, one must first define exactly what the problem is.  For us patients, the temptation is to think problem begins and ends with our symptoms.  I think this has been my biggest problem with MRI’s as a measure of MS activity.  Even with a stable MRI, my symptoms progress.  This doesn’t mean MRI’s are not a valid way to measure MS.  It just means MRI’s are not accurate enough to paint the picture I am looking to use.
Over the past few years, I have come to appreciate the inherent logic in dealing with complex systems.  Complex systems are different from complicated systems in that, one can never accurately predict the impact of damage to any one place in the system. They are different from the a->b->c…->z complicated systems where one knows the impact of breaking the chain.  A complex system is more akin to a road system.  Interestingly enough, the complex system theory was designed to replicate the brain, but is more commonly used today for other system models like roads.
One of the studies I found interesting was a recent one showing brain atrophy predicted long term cognitive issues were correlated with brain shrinkage and physical issues were better correlated with flares. http://jnnp.bmj.com/content/83/3/282.long Interesting to me is that neither flares nor shrinkage accurately predicted both.
Brain shrinkage would seem to imply a less able system simply by reducing the size of the system.  Even if we can not identify the specific area of deficit, the sum of all the paths now reaches less than it once did.  If the brain shrinks, the number of alternate paths for signals to take likely shrinks too.  The alternate routes for traffic disappear and the fragility of the system increases, even if it appears traffic is moving at the time.  Shrinkage would seem likely to predict future problems.  This study seems to be validating this assumption at least in terms of cognition.  In doing so, it redefines the problem and measurement of MS.  It is no longer enough to simply look for a flare (think car crash).  One must also look to see if the map still needs folding to carry.
I owe thanks once more to http://multiple-sclerosis-research.blogspot.com for publishing multiple posts about brain atrophy in MS patients.
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On a side very cool note, after my interview last week, I was asked to participate on the American Board of Internal Medicine as a patient advocate.  I’m amazed and incredibly honored.  I can hardly wait to find out how I can help.
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