Not everyone wants me to do The Right Thing™ + Ampyra update/irony...

by Michael S. Kaplan, published on 2010/05/30 07:01 -04:00, original URI: http://blogs.msdn.com/b/michkap/archive/2010/05/30/10014026.aspx

So one of the things that you can have if you work for Microsoft used to be a FlexPass to let you ride on Metro Transit or Sound Transit.

You know, a perk that is a way to encourage people to do The Right Thing™ in regard to not driving every day, etc.

As someone who seldom drove even when I had a car (before it died a few years ago), this was a tremendous boon.

Such a boon that once my car did die, I simply decided to try pretty more "independent of oil", only occasionally using a ZipCar or a taxi but usually either wheeling there with the iBot or taking the bus.

Then Seattle got rid of the FlexPass and moved to ORCA (One Regional Card for All).

Of course some people didn't like the "track-ability" that could be used with ORCA, and the promises that Microsoft made to never do anything like that were treated by people like me as cynically as one might expect.

But that was no biggee, I am used to my cynicism; that is The Right Thing™ for me.

But the bigger problem was that to get the ORCA I was "signing" an agreement that it would be used principally to get to and from work.

It didn't say exclusively, but the language implied (to me, a non-lawyer) that at least 51% of the time it would be work-related travel and/or travel to/from work.

I can get to my office in under ten minutes in the iBot in Standard mode, and under twenty minutes in Balance mode (up on two wheels).

If, at the moment I head out my door, it is not beautiful weather and a 233 or 269 or 242 happen to be 30 seconds away, I'll take that bus four stops and get to work quicker. And the same thing going home. And if the bus is more than 2 minutes away I won't bother.

But most of my bus travel is to Kirkland, and Bellevue, and Belltown, and Capitol Hill, and Pioneer Square, and Ballard, and Fremont and so on.

If I was going to have to pay for some of the buses, I'd rather get the handicapped rate - which is roughly half. I'm just saying, you know?

I could put money on it for personal travel, but I'd be paying twice as much, every time I used it.

So I talk to the commute people at Microsoft and explain my dilemma. And I ask how to get the RRFP (Regional Reduced Fare Permit) ORCA, which would save Microsoft some money anyway, and let me save money when I had to pay.

Apparently it has never occurred to any of the people who "sign" that agreement that they might actually follow its guidelines. Or at least no one asked about it.

And they do nothing for RRFP or handicapped or over 65 stuff -- they just pay for the card and that is that.

Of course I saved the email where I was explicitly told to not worry about violating the rules of the agreement. Just in case someone ever checked my usage later and saw how I was going all those places that weren't work (out of 100 trips that cross th bridge, maybe one or two is work-related -- maybe ten if it is just getting to work in the morning when I stayed over on the wrong side of the bridge!).

I have talked to a couple of the bus drivers, and they just suggested I scan the card every other time, which would make the money come out right. But that seems wrong too. That isn't The Right Thing™.

And since there is no way to get a RRFP ORCA with corporate sponsorship unless the company does the work, I am costing them a bit more money than I would have otherwise. I offered to try and reduce that but they declined. Because that wouldn't be The Right Thing™ either.

I can't help but feel a little disconnected from reality on all of this. Like every step of the way I try to do what seems like The Right Thing™ and I am told not to bother....

I can't decide if my moral compass is being magnetized, or if I just don't fully understand what The Right Thing™ is.

The reason for that was that every person who talks to me about this drug officially other than the drug company is mispronouncing it. They want it to rhyme with Elvira!

I have received the Ampyra, and am taking it now. Well, not right now, but about every 12 hours.

Now insurance picked it up 100% -- but I swear I had to talk to a nurse in my neurologist's office, someone from the Ampyra company, someone from Medco, and someone from the specialty pharmacy entrusted to deal with expensive medicines (whose name I can't remember). Each one of them had checked with the insurance company itself and wanted to make sure it wasn't an error that insurance was paying 100% of the $1094.27 charge. Remember they also paid for the iBot within months if the iBot being discontinued for lack of insurance companies willing to pay, which surprised people too (though at least that one was on appeal; this one was practically automatic, within months of FDA approval!).

You know its weird when people who regularly deals with Microsoft insurance doubts it.

In fact, if you are a Microsoft employee you may want to consider running over me at an intersection or something. Our insurance is now being so generous that even the people who routinely deal with our insurance are wigging out over what they cover. This has to be a bad thing that will impact coverage in the long run, right? Sheesh!

Anyway, I am just a few days in (sent to me by UPS Next Day Air 5/27, I got it on 5/28) and it is already eligible for refill on 6/1. I'm going to wait to see if it looks like its helping. And maybe ask them to not bother with the next day air next time. Maybe the price can be driven down a bit....

If close to the end of the month it doesn't seem to be helping, I'll stop. No idea why they'd approve it for renewal so fast, are they getting a kickback or something? Sheesh. Again.

Plus the Twitterverse is awash with people talking about the high cost and low effectveness. Check here, you'll see what I mean. But I've also heard some positive reports (sites like this one have some of the typical comments you can see if you aren't looking at the news stories, tweets, and blogs that just parrot each other -- I am continuing to doubt that Twitter is the best way to find out truth in such circumstances!). Sheesh, the third.

Apparently the drug is helpful for some people, though the criteria they used to determine usefulness was not as good as it could have been.

As I actually expected, when you read the Ampyra literature, one of the potential adverse side effects for this medication meant to primarily deal with imbalance is...

So, how am I supposed to know if it is helping and I am just seeing the side effect, or it isn't helping? I'll let you know how the course goes but I'll admit to frank amazement that they have not overflowed their irony stack buffer.

It's not uncommon for a drug that makes many people better to make some people worse. A woman I know went on Prozac for depression, and it made her so much more depressed that she tried to kill herself and was only saved by good luck: her roommate found her barely breathing after taking an overdose of some other med. So it's not a matter of "it works but the side effect makes it not work". Just see if your balance is improved, and if not (if there is no effect or you are disimproved), stop.

"Across the street" sounds weird in this context: it suggests to me that when you cross the street in front of your house, you are at work, not that it's four bus stops away.

And yes, the whole point of insurance is risk pooling: the many healthy pay for the few (like you and me) who aren't.

Lastly, issuing the reduced-fare as well as full-fare card might very well cost Microsoft more in administrative overhead than it saves in fare.

I had a nurse practitioner friend of mine remind me that I had told her of six different kinds of balance problems I have had over the years and thus I may well be able to tell the difference....fair enough. At least the irony is intact!

I am literally across the street from Microsoft's main campus in Redmond, but it is a big campus -- 20 minutes @ 3.5mph, as the iBot rolls. Or four bus stops, albeit close together bus stops!

Microsoft does not give the reduced fare cards, I am on my own if I want one of those.