Takes your breath away

by Michael S. Kaplan, published on 2005/03/01 02:11 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2005/03/01/382200.aspx

More non-technical content....

You know the step you miss at the bottom of the stairs, or the one you try to take that is not there at the top? It takes your breath away. Kind of like today's news did. I'll explain...

I am taking Copaxone every day, for my MS. It's like taking Insulin or something.

I used to take Avonex and to be frank I liked the schedule better (just once a week). But I'd kind of feel like I had the flu for the next 36 hours, which kind of stunk, if you know what I mean.

So I was biding my time with the Copaxone.

Though some time this month I was going to be switching to the new drug that used to be called Antegren but was then renamed to Tysabri.

I was kind of annoyed at the wait (the hospital wanted to set up stuff and the infusions have to be in the doctor's office). But a drug that you only have to take once a month seemed like a dream some true, you know?

But then everything changed.

Yesterday morning, my brother-in-law forwarded me an article through email and asked if I had heard about it -- a headline today on cnn.com. It read MS drug pulled after patient dies. The drug companies (Biogen Idec and Elan Pharmaceuticals) voluntarily pulled Tysabri for an investigation after one patient died and another contracted Progressive Multifocal Leukoencephalopathy (PML), a rare but often fatal disease of the central nervous system. Both patients were taking Avonex and Tysabri together for over two years.

My first thought was how terrible that was. And I will admit my second thought was that maybe that would have been me some day, if they had actually rushed through that process stuff at the UWMC neurology clinic a bit faster.

The stock both companies reportedly dropped on the news (small wonder, huh?).

Now tonight, I am looking at this Copaxone syringe and wondering if I am taking my life into my hands by falling into this trap that the drug companies have set up. It's a pretty profitable scam they have going there, you know?

Drugs that have a statistically significant chance of helping me will by definition have a statistically significant chance of doing the fractional value diddly/squat.

And I don't even want to think about the miniscule chance that the rush to get what seemed like a promising drug "fast tracked" through the FDA could do to someone about to be on the bleeding edge of MS treatment. The Copaxone may be doing nothing at all for me (one has to love a $1000 per month placebo), but no one has died yet from taking it after over ten years. I'll take those odds over 1 in 5000 after just two years any day.

Now I know none of this probably even applies to me -- they have a ton of Avonex data and nothing like this has ever been seen. Same thing for Copaxone. and even if I were on the Tysabri, I would never have gone on a combination therapy with Avonex. Even bothering to think that I had a close call is like thinking I had a close call when I was stranded in Los Angeles on 9/11, waiting for a next day flight to San Jose. In other words, I was never in any kind of danger.

I am simply not feeling quite so experimental, if you know what I mean. I think waiting for the longer studies sounds like a safer plan....

# Michael Kaplan on 1 Mar 2005 12:25 AM:

For those who are wondering (parroting Martin Sheen from Apocalypse Now)....

How many syringes had I used? There were those six months I knew about for sure. Close enough to feel the needle when it went in. But this time someone had bought it when they tried it. That wasn't supposed to make any difference to me... but it did.

Shit. Charging a drug company with too much greed here was like handing out speeding tickets at the Indy 500.

I took the Copaxone. What the hell else was I going to do? But I really didn't know what I'd do when the next day came...

(ok, enough of that!)

# Dean Harding on 1 Mar 2005 3:03 PM:

Drug companies are like oil companies. They don't like innovations in areas that'll reduce their profits. That's why electric cars have taken so long to come out. And that's why hybrid cars actually have really terrible fuel economy (a diesel engine is about 35% more effienct and produces around 25% more power than a similarly-size hybrid engine. Source: http://www.hybridcars.com/hybrid-versus-diesel.html)

Drug companies are no different. Say they have two drugs: one you take once and the problem disappears and one you have to take every day for the rest of your life, which will they choose to send to market?

Anyway, that's probably all rather tin-foil-hat conspiracy theories, but to me, drug companies are inherently un-trustworthy. So I think you're right in that waiting for the longer studies is the best choice. It'll give independent studies a chance as well...

# Dean Harding on 1 Mar 2005 3:17 PM:

Whoops, I misread the numbers on that site. It's 35% more efficient than a regular gas engine. But then if you look at the table for hybrids, only a full hybrid is more efficient than that with 40% - all the rest are 7.5%-20% more efficient.

And full-electric cars, while technically quite feasible are still no where in sight...

# 余啊雷 on 9 Aug 2005 4:13 PM:

Some of you may recall my post about how the new MS drug Tysabri took my breath away with two reports...

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referenced by

2007/01/16 Please excuse the interruption

2006/02/17 What's the latest on the MS front?

2005/08/09 Tysabri still down for the count

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