Life as an Extreme Sport

What I’m Reading Today

The miscellanious round-up, while I wait for the coffee to infuse my system enough to pack and wander my way towards the airport.

Pfizer Boldly Advertising Celebrex Again – but with a big ol’ warning about the risk of heart attack and/or stroke.

I took Celebrex for a year, maybe more, and have to admit it made my life a lot easier during that time. At the very bottom of the article, Michael Krensavage, a drug industry analyst at Raymond James, says “I would try an ibuprofen first.” Well, thanks Michael K – but I did, and I was taking like 10 ibuprofen a day, which is never good for the liver, and still getting no pain relief. One Celebrex later, and I could move without wanting to cry (this was back when my rotar cuff was torn).

All drugs carry risks and benefits. It’s up to you and your doctor (note: doctor, not pharmacist) to determine what the right drugs are for you.

And lest anyone think last weeks Bones episode The Graft in the Girl, was just more scary science fiction, Stolen body parts linked to patients’ illnesses; several lawsuits claim tissue transplants were infected with viruses and other germs. Four men, one of whom worked for a tissue provider, have been charged with carving up corpses and selling their parts without consent. And oh yeah, they’re diseased and old and damaged parts.

Quite literally the entire plot of the last Bones, down to almost the exact same name of the tissue company. Life, meet art. Art, meet life.

GlaxoSmithKline, Europe’s biggest drugs manufacturer, yesterday defended itself against accusations that it is turning healthy people into patients by “disease mongering” and pushing “lifestyle” treatments for little-known ailments. Charming, ‘cept I don’t believe a word of it. I’m actually having fun collecting a list of all the drug advert commercials I see – I figure it will make a nice column for The Daily.

I particularly love the line “It is easy to trivialise things when you don’t have them. If people did not want the treatments, they would not seek them.” …or, you know, people wouldn’t think about it being an issue if they weren’t told it was one. We spent a while talking about the concept of taught illness in my philosophy of medicine class last quarter. Perhaps I should interview Sara for the article, heh.

Wired has another take on the pill pushers, noting that although Novartis employs some of the most brilliant minds in the pharmaceutical research field, developing impressive leukemia fighting drugs like Gleevec, their fourth most profitable drug is Lamisil.

Lamisil treats toenail fungus. It’s not life threatening. It turns your toenails yellow. And for three months and about $850, you can cure it. And 10 million Americans have, or are trying. And yet, in those numbers, a very small percent have had what you might call a significant reaction to Lamisil – they’ve died.

And yet because of their effective marketing campaign, with Digger the Dermatophyte, a campaign costing them $236 million in three years, Americans are lining up to take a drug that only completely cures 38% of them.

That’s a pretty low cure rate for a mostly invisible (after all, most of us wear closed-toed shoes) fungal problem that does nothing other than making your toe nails yellow.

Can I market a new cure for toenail fungus? I’ll call it… Polimisil. It’s a simple treatment, involving the application of a tinted liquid substance that dries to the toenail, masking the originating colour of the nail. You get approximately 60 treatments per bottle, each treatment lasting about a week. And for this amazing cure, I’ll only charge you $40 a bottle! That’s less than $1 a treatment!

C’mon, you know you want to!

On the other side of the pharmaceutical fence, (wow, I’m just all big pharma lately), Genzyme won FDA permission to sell a new drug to treat Pompe disease, a rare inherited enzyme disfunction. One of the problems with big pharma is that since they are businesses, they have incentive to develop and produce drugs for common problems, like arthritis, so they can make lots and lots of money. Practically speaking, this means that rare diseases, like Pompe, are often overlooked, because there is simply not the client base that would justify the research and development costs.

In doing something right for a change, our government has developed an incentives program for companies developing treatment for these rare illnesses; in fact, that’s what Genzyme specializes in.

The Daily: Finding Saviour in a Sibling

Finding a savior in a sibling
Publish Date: 2006-04-17

This at last is bone of my bone and flesh of my flesh.

The paper reads, “‘Designer Baby’ clinic to charge ?6,000 a child.”

That’s a lot of money, even for an in-vitro fertilization (IVF) kid. The second sentence in the article explains, in a simple phrase, why: Savior siblings.

Savior siblings are not a new concept, and parents have been creating them for years.

Parents of sick children will, after all, go to great lengths to help their child, and savior siblings are children born in the hope that they will be genetic matches for a sick relative.

This option took on new life in 2000, when Adam Nash was born.

The Nash’s had a little girl with a disease that causes leukemia, and often death at a young age. Doctors theorized that cord blood from a donor would extend Molly’s life and prevent leukemia.

(Cord blood contains adult stem cells. The recipient is irradiated, killing his or her original bone marrow, and then infused with the blood. The stem cells migrate to the bone and begin creating new marrow.)

Molly’s parents underwent 4 rounds of IVF therapy combined with pre-implantation genetic diagnosis (PGD), ultimately creating 24 healthy embryos. Of those embryos, five were a match for Molly, and one implanted and was brought to term.

At Adam’s birth, the cord blood was collected; a short time later it was infused into Molly.

Today, Molly is an active sixth grader, thinks her younger brother is a pest, and adores her baby sister, Delaine.

Until now, Adam and the handful of other savior siblings have been a relative rarity. Most insurance companies will not cover IVF, let alone an IVF/PGD combination, and the out-of-pocket cost is staggering.

If the prospective parents can get around the cost hurdle, they still have to find a doctor, or a willing team of specialist doctors, to assist them. While many doctors have the expertise, the controversy around the practice has limited its availability.

This controversy is what brings designer-baby clinics to the news this week.

What, exactly, is that controversy?

First, people criticize the idea of savior siblings by saying that instead of each individual being an end unto themselves, savior siblings are used as a means to an end and that children should be wanted solely for being that child, not for being spare parts for another.

But the argument almost never stops at this admittedly valid concern.

Instead, it deviates.

It ceases to be about savior siblings, or even about a baser debate around IVF/PGD and whether it is an active form of eugenics.

The argument goes from what is possible to potential, from medicine and eliminating disease to a blonde-haired, blue-eyed, post-Nazi era, speculative fiction-fueled, designer-baby slippery slope.

This, inevitably, is where the debate circles and stops, going no further. That’s the shame in this whole mess.

Saying that creating babies that are free of a genetic disease, or are tissue matches for siblings, will lead to a genetically designed race of tall, blonde, buxom and blue-eyed babes who can all play the piano like Beethoven while writing like Austen is a non causa pro causa fallacy.

This sort of causal fallacy says that if A happens, then by a small series of indeterminable steps, Z will eventually happen and since they are tiny steps, we won’t be able to draw a line that should not be crossed.

And if Z shouldn’t happen, then neither should A.

The problem with this argument should be very clear: Anything has the potential to be used for ill.

What we should focus on is not the technology, but the people using it.

What we should focus on is not trying to stop medicine from preventing illness and curing disease, but making sure people are educated about the possibilities inherent in technology.

We should be discussing the idea of savior children and whether it’s okay for a human being to be created as a means to an end, or if those who’re so intentionally created have more thought gone into them than most.

Shay Saves the Day

I took Shay’s advice, after pounding my head against my thesis so long I swear I’ve a large purple bruise on my forhead. I collected together all my writing in one document, in roughly the order I thought it should all go in. I then expanded around each section, explaining what else I thought needed to go in around these fuller paragraphs.

Suddenly, I have 20 pages of thesis. Which is between 1/3-1/5th of the way done with the project, and 20 pages more than I had yesterday.

More importantly, by far more importantly, I actually feel, now, like this is something I can do.

Autopoiesis in Action

I had one of the most amazing experiences in class today. It was the first truly “Thurtle” lecture, and towards the end of the class we started talking about what happens to our body when we go on the internet, where do “we” exist, and so forth. If you’re not taking the class or part of the Thurtle ducklings, it’s understandable if you just scratch your head and say “bwuh?”

Anyhow, I offered to the class that the internet itself is a body that we inscribe meaning upon, just as meaning it inscribed upon us – by other people, and by the internet. That it is an organized body as much as we are. And as I started saying this (admittedly more elegantly than this), Phillip’s lips twitched up and he got this most amazingly satisfied smile – you see, this was one of the first arguments he and I had, only I was very firmly arguing against the idea of the internet as a body. Lo, what difference two years makes.

About 10 minutes later, the discussion about the body has continued…and Phillip mentions a beautiful passage from Shantideva, asking where “I” resides – does “I” reside in the fingers, the hand, the arm?

It was my turn to light up, smiling and containing my glee just barely. You see, I gave Phillip that article on Shantideva over a year ago.

The Daily: She Wore a Slinky Red Thing

She Wore a Slinky Red Thing
Publish Date: 2006-04-10

This op-ed was pitched as being a weekly take on medicine in pop culture. I figured it would give me a chance to rant, rave, and giggle about some of my favorite subjects: House, Grey’s Anatomy, the Law and Order franchises, whatever came to mind and seemed interesting.

It was an opportunity for me to gain experience producing a weekly column before leaving the University for other pastures.

It still is.

But this week I’m going to deviate just a bit from my course, and I’m going to talk about the news rather than popular culture, and I’m going to talk about something other than medicine.

I’m going to talk about sexual assault.

Violence.

Rape.

If you haven’t been hiding under a rock (or buried in your textbooks), you’ve heard about the Duke University lacrosse team and the accusations of rape.

For those of you under that proverbial rock, Google is your friend. In a nutshell, the lacrosse team hired two black strippers to entertain them and their guests at a party.

The accounts of what happened next vary. One stripper claims she was dragged into a bathroom, held down by three white men and brutally raped, sodomized and strangled for 30 minutes. The team denies it.

Durham police are investigating this as a case of rape, kidnapping and a hate crime, searching the house and demanding DNA from the white players.

Protestors and the media have latched on to the hate-crime aspect of the case, focusing on the deep racial and class divide that exists between Duke and its surrounding community.

And in all the noise, the fact that someone was raped is being lost, and I don’t think this is unintentional.

We don’t like to have rape be personal. We want the victims to be hidden behind blue dots. If anyone talks about it to a paper, this one included, they opt for pseudonyms.

Is this any surprise, when we live in a society where politicians talk about “simple rape”?

I don’t control the media, and I certainly don’t control what others do. But I do control the timing of what I write, and that this is published at the start of the University of Washington’s Sexual Assault and Relationship Violence Awareness (SARVA) week is not a coincidence.

Go talk to the folks running this event, and while you’re there don’t think about numbers. Don’t think about 1 in 3, 1 in 4, 1 in 5.

Numbers are anonymous and impersonal. They don’t have faces or feelings.

Think instead about your favorite singers, professors, your sister or brother or mother, your best friend.

Think about someone you care about, and whether you want them being accused of deserving it because they dared to wear that slinky red thing.

Because they’ve had sex before; because if they’re not a Madonna, they must be a whore.

Stigma, the classic book by Erving Goffman, talks about how the stigmatized convey themselves with those who are not, have not, been stigmatized. How the stigmatized are shunned, shut out, made anonymous and encouraged to adopt what he calls an “air of good adjustment.”

“The unfairness and pain of having to carry a stigma will never be presented to” those who are not stigmatized themselves; and they “will not have to admit to themselves how limited their tactfulness and tolerance is.”

Those who view themselves as “normal,” Goffman argues, “can remain relatively uncontaminated by intimate contact with the stigmatized.”

And in writing this article, I have perpetuated the very thing that I rant against. I have kept anonymous, because I know that by admitting I was raped as a teenager means that every single person I know will look at me a little differently from now on.

But over the years, as I’ve seen cases come up again and again, I’ve begun to realize that the veil of anonymity society offers rape victims is not a shelter; it’s not a protection. It’s a way of removing the violence we don’t want to see, we don’t want to admit to.

The anonymity reinforces the stigma, and the only way that’s going to stop is if we remove the faceless numbers. If we stand up and say, “It was me.”

It was me.