Wednesday, August 6, 2008

Insider Trading

Tysabri, the medicine I get by IV once a month for MS, has been linked to a number of cases of a devastating, and usually fatal, brain infection again. This is why it was pulled off the market originally in 2004 before being reintroduced last year,

Right before the new reports came out, high level Biogen executives (the manufacturer of Tysabri), began dumping their stock:

…just like the last time:

“The Securities and Exchange Commission filed a settled enforcement action today in U.S. District Court for the District of Massachusetts, charging Thomas J. Bucknum with insider trading in the stock of Biogen Idec Inc., a biotechnology company located in Cambridge, Massachusetts. Bucknum was Biogen’s general counsel until he resigned in March 2005…
…To settle the Commission’s charges, Bucknum has consented, without admitting or denying the allegations in the Commission’s complaint, to the entry of a final judgment permanently enjoining him from committing future violations of Section 17(a) of the Securities Act and Section 10(b) of the Exchange Act and Rule 10b-5 there under. Bucknum also has agreed to pay disgorgement in the amount of $1,938,465, pre-judgment interest thereon in the amount of $102,005, and a civil penalty of $969,232, for a total payment of $3,009,720. Finally, Bucknum will be prohibited from acting as an officer or director of any publicly-traded company for a period of five (5) years from the date of the entry of the judgment.”

(The whole press release, dated 1/12/06, is here,

Here are two things that I would have done instead to make the punishment fit the crime:

First, I would create a foundation and have that $3,000,000 put into a trust fund to financially support people with MS in need. Not look for a cure or bullshit like that, but putting the money where it really will make a difference in the here and now.

Second, I would require Mr. Bucknum to receive a monthly infusion of Tysabri for the rest of his natural life. Whatever would be left of it after being on this dangerous medication. And hopefully he would worry about it constantly.

Judge Judy has nothing on me.

The Slogan

The Tysabri web site has a banner slogan that says “CELEBRATING 2 YEARS OF HOPE.” I think the subtext, in such small print you can only read it if you are an officer of the company, says “…hope that none of these losers dies before we can maximize our profits. Ha ha ha!”

Tysabri is a medicine of last resort for people like me, who just kept getting sicker on other MS medicines.

It enrages me that these people are making a [probably illegal] profit while every month I have to weigh the possibility of a quick horrible death from PML against a slow horrible death from MS.

The MS Society has a political action committee, but it won’t touch something like this because they are in bed with all the drug manufacturers.

What I want to do is inform as many people as possible. Maybe I can put some heat on Biogen, the greedy little dicks. Maybe by the world knowing what scum they are it will hit them where their only interest is: in their bank accounts.

The Future

There are twelve suspected cases of PML now. There were three the last time. It is a known risk because Tysabri makes the blood/brain barrier more permeable, increasing the chances of opportunistic infections like PML. Not to be melodramatic (oh, hell, ok, I’ll be melodramatic; let’s be real, there’s nothing I like better!) but that is what most people with MS die from, opportunistic infections. Pneumonias because we can’t clear our lungs, septicemia from pressure ulcers because we can’t move around or feel our skin breaking down, kidney damage from all the IV Solumedrol, stuff like that. Tysabri is an immunosuppressant, so I am at risk for all kinds of ick that normally would be no issue at all.

You may have read that MS is not fatal. But I think a fatal condition that I develop because I have MS definitely qualifies MS as the cause of death.

Not that I’ve done a lot of thinking about it or anything. lol

I will stay on Tysabri as long as I can. Or, as my neurologist put it, “Until something better comes along.” But every month I get that sliver of fear, is this the time when I am going to get struck by this lightning?

The makers of Tysabri obviously have the same concern, but for a far different reason.


DK said...

Hmm. Rock...hard place...tough decision...

My friend in college had (well, she still has) MS, and she was taking this awful medication called Copaxone (which the neurologists tell me they still use). And every so often, two or three times a month, she would have these horrible reactions right after she took her shot. We got to the point that she would usully have me around when she had to give herself a shot just in case she needed rescusitating. Wow, it was just horrible.

Maybe more horrible than the MS itself (then again, PML not so fun either, yikes), but the idea, I think, was mostly to slow the progression. And maybe it worked - she's done really, really well since the birth of her first child, who's older now than I care to admit.

My cousin has MS, too. She's gone absolutely crazy in the past few years (and I'm an expert in crazy). And when I was on Neurology, I had this tiny little 19 year old with Devick's, which, wow, that was one of the most devastating things I think I've ever seen. What a fickle and cruel disease...

...which I'm sure makes you feel MUCH better...::sigh:: I'm nothing if not supportive and uplifting...

Marie said...

Ah, Copaxone. The stuff of nightmares.

You have to give yourself a shot every day and rotate the site, never using a site more than once a week, because the medicine is so caustic.

I gave myself my shot at night so I could sleep (hopefully) through the worst of the after pain.

The shot was nothing. But then the fire would start, searing pain that lasted an hour or more. Then a hot, itchy egg sized lump would form at the site and last a full week. So at any one time you are covered with these things.

And "rare" reactions, where you think you are having a heart atack or suffocating or both. But the Copaxone folks tell you, this just makes me roll on the floor laughing, DON'T PANIC!!

ha ha ha ha ha

No, they say, don't panic, WAIT 15 MINUTES, and then if it hasn't gone away call 911.


And in the meantime, the MS just got worse and worse.

So that is why I am on Tysabri now.

I am so glad your friend is doing well. If she would like to talk to someone with a terrible attitude but a good sense of humor, e-mail me. lol

I am so sorry about your cousin. I have no relatives with MS, not even back home in Ireland. No history of it either. And I think my aunt in Ireland knows our medical history back to the Vikings. lol

Devic's. Oh my God. How devastating.

You ARE supportive and uplifting just by being here Kate. Thank you for your input!!

Patti said...

Marie, you DO have a way with words.

Tysabri scares the crap out of me. I'm not being flip either. I am lucky as hell that I'm not being forced to make that decision, because I don't know what I would do. We all have our own risk tolerances, and I do quite understand I may feel very differently if I wasn't stable (knocking furiously on wood as I type).

I remember what you went through, both before this difficult decision, and then the fiasco you had to endure with the infusion centers.

And about the insider trading were being too kind. Just IMHO, anyway.

Marie said...

Oh, Patti, of all the expressions to use!! lol

It is scary. But I spend most of my time in my favorite defense mechanism, denial. It can't happen to me!!

On the plus side, it has kept me functional for over a year, with just that one exacerbation last month, as opposed to flaring constantly.

I hope you stay stable, my dear friend, and never need to make the choice. xoxo