I am still pretty swamped (big release goes out Tuesday! Guess who's working this weekend?) but this week I have a "real" weekend links post for you, with a bunch of good articles and posts to make you think.
First up, Catherine Liu wrote a thorough takedown review of Amy Chua and Jed Rubenfeld's "Triple Package." I suspect it is well-deserved. I wasn't planning to read the book, and this review certainly didn't change my mind on that! I particularly like her point about how Chua and Rubenfeld's worldview completely devalues work that does not meet their limited definition of success:
"Their lists of successful people from the “Triple Package” groups reads
like dross written in capitalist propaganda cubicles — or SAT prep
companies trying to market their services: look at all the people we
have helped gain admittance to Ivy League schools! There are no firemen,
no public school teachers, no social workers, no psychologists, no
steelworkers, no plumbers, no horticulturalists, no veterinarians, no
nurses, no carpenters, no astronauts, no computer engineers, no farmers,
no soldiers, no tinkers, no tailors, no chefs, no ceramicists, no
artists, no non-classical musicians, and no poets in Chua’s and
Rubenfeld’s accounting of successful Americans."
I really liked this piece from Brittney Cooper about who gets overlooked when the pundits talk about public scholarship. Tressie McMillan Cottom also has a nice post about the making of pundits and the new crop of journalism start ups. I am happy to see the latest crop of media startups, but sad that they are missing the chance to really diversify the voices we read. I suspect they are doing the all too common hiring thing of preferring to hire people they know and trust... which almost always shrinks diversity. (I see this in my own industry, too, and it is a very, very hard thing to combat- but writing about that is for another time, when I've thought more carefully about what I can and cannot say.) I know there are other sites working to build their audience that perhaps have more diverse voices, and I need to seek them out. But seeking them out takes time- which is why we turn to pundits and "big" media sites, which is why it matters so much that those "big" sites try to find the diverse voices to share....
Salon has been doing a pretty good job of that, I think, and I am increasingly fond of that site despite its tendency for click-baity headlines and unabashed left-leaning bias. I don't go there for an unbiased take on the news- I go there to read thought-provoking things written by smart people. And I have another article from them to share this week: a really good look at how people who have never experienced true poverty can fail to see it and its effects. I remember the day in grad school when I was listening to a report on the news about a new recalculation of the poverty level and realized that the stipend I considered a bit stingy was actually at the poverty level- for a family of four. And I had job security, a great deal of autonomy, a fair amount of respect from society, and great health insurance (better than what I have now, actually). I realized that as much as I and my fellow students (all of whom were single) liked to complain about how broke we were, we had no idea what real poverty was like. That was a very sobering realization, and one that I think a fair number of people have never had.
Moving to an even more distressing topic.... You might have heard about the dying child who needed access to an experimental drug that had no active trials. The drug company, a small biotech startup, was refusing to supply the drug on the grounds that they did not have the resources to do so. Not surprisingly, there was a big internet stink about that. The company and FDA have since found a way to supply the drug with the possibility of including data from this patient in a phase III (I have no idea how that is going to work, but clinical trial design is not my area of expertise, so I'll just trust that they have figured something out). John Carroll has a good editorial on this situation, which I will actually urge you to go read if you have any interest at all in the topic. As someone who has worked at (and been laid off from) biotechs, I can say that the argument that supplying compassionate use doses of experimental drugs could in fact lead to a company going bankrupt before getting the drug on the market is entirely plausible.
I am extremely happy that the company and the FDA found a way to fix this one case, but I also hope that people will not forget the general problem. Manufacturing a drug for human use requires a lot of overhead, not to mention the people to actually do the work of creating the batch. Most venture-backed biotechs are under tight timelines and there is a real risk of running out of money before the definitive trials can be completed. I think we need a system to pay for compassionate use cases so that companies do not face this impossible decision of whether to try to save a patient now at the risk of stranding their potential future patients and so that patients can get access to the drugs without a social media campaign. I am deeply uncomfortable with the way we seem to be turning access to medical care into a social media popularity contest.
I will refer back to my Tungsten Hippo post of a few weeks ago and argue that it is not "they" who should do something about cases like this, but US. This is the sort of problem that government seems well-suited to solve, perhaps with a fund to compensate the companies asked to provide compassionate use doses. It could be "need-tested" so that profitable pharma companies would continue to pay their own way, but little biotechs without any revenues could draw on the fund. I might write to my congressfolk to suggest something like this, but that seems unlikely to have much impact. I'm not sure what else to do, though. I'll have to think about that.
For anyone who is not in the drug discovery industry and would like to know a little more about why drugs are so damn expensive, Derek Lowe had a post this week about the reasons new drug applications fail.
So, that was a lot of heavy stuff.
On a slight less life-or-death note, I really liked this post from Frank Chimero, which I'll say is about life in the internet age, but which might more accurately be described as just being about life and how to live it.
And Stochastic Planet had a couple of great pictures. That site is one of my favorite things in my RSS feed, not because the pictures are always great (sometimes they are, sometimes they aren't) but because I love the look at a random spot on the globe from a random photographer. It is somehow comforting that so many of the random photographers are clearly quite bad at photography (like I am). Also, I really want to know the backstory on that Finnish picture.
Finally, let's end with a testament to the human spirit. This is a video shot in Tacloban, where people are still cleaning up after Typhoon Haiyan, which hit last November.