Category Archives: Uncategorized

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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Battle of Perspectives

Every day as I wake, it seems a battle between two perspectives. I resent having to fight the same fight daily about how I will view my MS today. I am all for self awareness and introspection. I just hate having to send my mind down the same tract to the same emotional boxing match.

In the dark trunks, on the near side is Mr. MonSter. He fights the long fight, rarely going down and never going out. He reminds us the way to boil a frog in a pot with no lid is to warm the water slowly. Towards this end, he opens with jabs of slowly increasing pain. He waits for opportunities to exploit faults in memory to cause cracks in confidence and temperament. If he hit with all of his tools at once, he would be giving up the isolating feeling he brings when nobody believe his opponent is worse than they usually are. He’s always up for the full bout, and his strength only increases as the rounds progress.

In the insanely bright, hurt your eyes green trunks in the far corner is Mr. Perseverance. His fighting style is characterized by a belief in what is done despite being tired one day is the best indicator of what will be possible tomorrow and all of tomorrows’ tomorrows. While many who have fought Mr. MonSter have fought to conserve spoons full of energy to either win in the later rounds or subsequent matches, Mr. Perseverance believe in punching onward taking what opening present themselves now. He is a risk taker with confidence he will be able to withstand any counter punches, and as his name implies, he rarely gives up even in the face of high costs in the near future. His belief in new methods of recovery and increases in fitness allow him to fight ever on.

Who wins? Lately, Mr. Perseverance has won by decision, but the water is slowly getting warmer. Will Mr. Perseverance ever concede one battle to take the time to hop to another pot or will the MonSter win out in the end?

Tune in next time…and the time after that….and the time after that….

In the words of an early 80’s television show, “Same bat channel, same bat time…”

O spotted this bird on a walk around Burba Lake at Ft. Meade.  I bet it wouldn't be trapped in a pot of boiling water with no lid.  Will Mr. Perspective learn from Ali to "float like a butterfly and sting like a bee?"
O spotted this bird on a walk around Burba Lake at Ft. Meade. I bet it wouldn’t be trapped in a pot of boiling water with no lid. Will Mr. Perspective learn from Ali to “float like a butterfly and sting like a bee?”

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