Nov 272015

Picture of what the auto-infuser looks like. It takes an Hr. for it to complete.

First off the steroid treatment went better than any other had gone in the past. I did not have the horrible bad attitude, well no worse than normal, and my tastes were not negatively impacted. Day one of the prednisone went very well. The nurse offered to leave a permanent IV needle in, but it would be in my hand. I told her I do not mind getting stuck, my mistake. Day 2 a new nurse it took 8 sticks before she was able to get a vein that worked for her. This was not the first time tis has happened while I have taken prednisone. Apparently prednisone does awful things to your veins because normally I am a very easy stick. Unfortunately, day 2 was not yet over and because she ran out of IV needles and had to switch to her personal supply of butterfly needles I moved and the injection became occluded. I was 2/3 done with the IV and she asked if I wanted to quit for the night; I think it was pretty clear she wanted to call it a night and not battle getting another IV in me. I told her no I wanted to finish the medicine and two sticks later I was ready to go with a stern warning not to move. 🙂 Day 3 went much better.

In the interim I am supposed to have blood work done to test for the JVC antibody. I tried twice and lost the lab slip. I have to assume that was for the best because getting the lab work done is a waste of money. I do not plan on taking Tysabri or Tecfidera that carry the risk of PML at this time. The Dr. did think that Tecfidera was a good option for me at our previous visit. I do not plan on signing up for the Death Therapy as a treatment.

I will not do the interferons because I think they are garbage, and they did not do much for me. That only leaves Copaxone as drug, or nothing. We look up Copaxone and learn as much as you can without a full understanding of the immune system. 🙁 I also look up how much it will cost through my insurance. The drug is roughly $5,000 a month with a copay of $150. The $150 is doable, but I am on a high deductible plan so on January 1 I would have to eat the $5000! If that is the case it is a no go.

Off to the follow-up with the neuro. A minor exam and in his professional opinion I am walking better. I guess that is why he makes the big bucks because I had not noticed my walking had improved. 🙁 The rest of the brief visit was discussing Copaxone. I told him the $5000 price tag, and his response is that it is a very expensive drug to make it is not all profit. He sounded like a drug shill from Teva. If that drug costs more than $5 to make I would be shocked almost to death. There is obviously good money in drugs so I need to continue my own drug research. MVT with the proper marketing certainly can help a lot of people. 😉

To wrap this all up Teva/Copaxone called today. They wanted to discuss the initial setup with me. I said that is fine, and we got that all worked out. I then brought up their $5000 per month cost. She said that they can eat the first part for the high-deductible plan and possibly the copays from then on. I thought OK as they are gouging my insurance and I am making my insurance more expensive for everybody in 2017. 🙁

As a postscript I was looking at Tecfidera on the NMSS site. I could not shake the BG-12 name it had before it was Tecfidera. I was certain I had written about it, and I had. BG-12/ Tecfidera was a Mold Killer! Who in their right mind is going to take a mold killer as a treatment!

Aug 102007

As a little bit of a background on my prescription insurance: I either pay 10% or $25 for a drug; whichever is more. When I went to pickup the Malarone Walgreens did not have enough in stock so I go about a weeks worth. This cost $25. I then went back after a couple of days when they got the rest of the Malarone. Unfortunately, this was again another co-pay of about $28 (apparently the 10% was a little more). What should have happened, if I had gotten it all together, would have been a co-pay of around $32. I tried explaining this to the clerk at Walgreens, and that I should get a credit for what I already paid. Of course this concept was way beyond her mental scope, and after she went and talked to the pharmacist (or tech) we got a lecture about how our insurance worked (shockingly she was wrong). Ultimately, we had to concede defeat because I was on the verge of an aneurysm. I know co-pays and higher math like addition and percentages can be complicated (what did we do before computers, and in hindsight couldn’t her job be replaced by a robot or fancy ATM); but maybe I should blame the public school system.

May 052006

When the health insurance works it works great, but when it fails it fails miserably. I was reviewing my EOB’s (Explanation of Benefits) yesterday, and I came across the one indicating that I owe SW Medical Center about $248 for my last visit to the MS Clinic. Apparently, the new doctor I am seeing is not on my insurance plan, and my plan doesn’t pay for out of network care. This certainly came as a surprise since my last doctor at the MS clinic was covered. I am heavily irritated at the MS clinic right now that they did not check this. On the other hand I am also irritated at myself for not thinking to check in advance. On a plus side there is money still left in the health care flexible spending account; which mentally always seems like free money – which is good because otherwise that bill would be a pretty bitter pill!

Feb 032005

My wife sent me the article Medical bills lead to personal bankruptcy today, and I thought it was worth writing about. I’ve had a very similar thought, if I lost my job I could not afford my medication/Rebif. Heck, I was going to have trouble affording my medication the way this year’s health insurance plan was originally written. This is why I go to great lengths to hoard as much Rebif as possible (currently an extra 3 month supply) in case something bad happens. I would certainly be one of those people that, without insurance, would be going without.

Jan 192005

Well here is the message (edited to remove my employer’s name – per corporate policy) I sent to the Executive Vice President over Human Resources, and CC’d my boss and my boss’s boss. While I have about zero expectation anything will change, this was my very best effort. I will post the reply – and I’m sure I will get a reply. 😉

And while I am not “extremely” disabled, I do score a 1.5-2.0 on the EDSS and I think that should count.

I wanted to make you aware of, and petition you to change, some of the modifications implemented in the health plan for 2005, specifically changes to prescription benefits. As someone suffering from Multiple Sclerosis, with continuing disability, these changes significantly punish me; especially in regards to my primary medication, Rebif.

Last week I called the mail order pharmacy to schedule my first refill for the new year, to be delivered this week. I got a call from them on Monday to make me aware of the new co-pay of $281.88. In disbelief, I called Walgreens Health Initiatives (WHI) to see about resolving this problem. The lady I spoke to, after looking at our plan for this year, said that XXXXXXXX had modified the plan so that “specialty medications” through mail order would now be paid at 20%, and that Rebif is specifically listed in the plan as being a specialty drug. This is up from last year’s co-pay of $25.00 per month. From a financial perspective this is very upsetting because this devastating change in the plan was kept secret and hidden. No where, in any documentation, is there a “specialty drugs” designation; furthermore, there was nothing stating that the plan would be radically changing for that group of medications. With the information I was provided by XXXXXXXX, and what I assumed the cost would be, I setup my health care account incorrectly. Keeping this intentional change to the plan secret, especially with such a radical and negative effect, seems to me, exceptionally unethical.

On a personal level, and as one already suffering disability, I am severely disappointed by XXXXXXXX changing the insurance plan so negatively. The changes to the plan seem targeted to save money at the expense of those of us with disabilities and chronic illnesses, the small subset of XXXXXXXX employees who use these specialty drugs. It would seem that, regardless of the talk, XXXXXXXX is not interested in their disabled employees; and is actively making changes to drive the disabled away.

Now I am caught in a dilemma. I can either find some way to pay for the medication that unexpectedly had over an eleven fold increase in price; or face a rapid worsening of disease progression, and thus increased disability. As I look at the XXXXXXXX plaque, and screen saver, on my desk about “Principals That Endure” I really question how well those are being fulfilled; in particular the “Commitment to the Well-Being of our People” and “Unquestioned Integrity.” In the minimum, XXXXXXXX does not seem to be interested in diversifying the workplace with the disabled when they make such penalizing changes to the insurance plan, as happened this year. I beg you, as one who has the authority to make this change happen, reverse out these modifications in the 2005 insurance plan.


Erik Smith