A well-researched and personally-grounded exploration into the ethics and business of medical studies, and indeed: what a big business it has become. The author himself has diabetes, and decides to undergo an experimental procedure as a test subject, a human guinea pig as it were, where donor insulin-producing cells are transplanted into his liver as part of a potential cure. He decides to learn more about clinical trials and presents the results of his extensive research, while we’re kept in suspense until the end of the book as to whether his own experimental treatment was ultimately successful.

Here are a few things that come to mind when I think about medicine.

1. It’s amazing how far we’ve come, and how much we know.
2. I’m often reminded how basic/primitive, still, our understanding is of many of the body’s systems. Actually I wouldn’t use the word “primitive” with respect to our understanding, rather with respect to our current ability to manipulate and fix, compared to what should eventually be possible. We understand a lot but can’t do much about it.
3. Contrasting the above two ideas is probably a tired cliche. But I’m still continually struck by it. How far we’ve come, and how far we’ve yet to go. Yeah, yeah. Bear with me.

The author doesn’t take sides, and tries to present various concerns in a balanced way — and some of the ethical issues are pretty fascinating. For example, there was a trial of anti-HIV drugs done in Africa where participants in the study either received the drug being tested, or a placebo. Meanwhile, back “home”, there are standard, helpful HIV treatments available, and common practice is to compare a new drug with the current best-known treatment on the market in order to determine whether the new drug is any better than the current baseline. But because poor, HIV infected Africans didn’t ordinarily have access to the baseline drug in the first place, it wasn’t administered as part of the study, either. As a result, half of the study participants (who received the placebo and effectively went untreated) died or became sick. There was, not too surprisingly, an outcry about the ethics here. On the one hand, by doing a placebo-controlled trial, the new drug could potentially have been approved and brought to market much faster. On the other hand, placebo-based trials are almost never done in the U.S. or developed countries when baseline care (my terminology) is available. The drug company which sponsored this study argued that ultimately many more lives would be saved by faster approval of its drug, and futhermore that the people receiving the placebos wouldn’t have likely received any care at all, anyway. Others argued that people participated in the trials out of desperation and under the belief that they would receive actual treatment, and to have denied baseline treatment was unfair exploitation — that although we know that the one and only purpose of medical research is to gather data, not to provide treatment, in many circumstances it’s difficult for subjects, particularly those who don’t have any routine or even accessible medical care at all, to understand or believe this no matter how it’s explained to them (and researchers have an incentive to not explain it tirelessly but rather to allow or encourage the formation of hope).

I’ve encountered a few friends or colleagues recently who have tremendous mistrust for the medical establishment. (That goes together with stories in the news about parents who somehow remain convinced that there’s a link between childhood vaccines and autism, I think.) One person believed that chemotherapy is essentially a scam perpetrated by doctors and hospitals in order to make money, an expensive and ultimately unnecessary treatment because there are other, cheaper, more natural, less harmful treatments available. (That view disgusted me, since I and most of us have friends who’ve dealt with cancer.) Or that in the field of psychiatry, drugs are “pushed” on patients by doctors who are paid by drug companies to write prescriptions. (Incentivized? An area of concern, but not something with which I’d condemn a whole field of medicine.) In reality, the world of medicine is extremely complex, and simplistic conspiracy theories like that just don’t ring true. The key is, everything in medicine depends on data. If there’s some compelling evidence that, for example, eating precisely ten navel oranges a day cures cancer better than chemo, somebody will probably fund a clinical trial to test that. In general drug companies do fund the majority of studies, but there are layers of independent review boards, politicians, research hospitals, and lawyers ready to swoop in, all of which creates an atmosphere of oversight and regulation. Private donors, too (as in the case of the diabetes-cure trial the author underwent). It’s not perfect, and there are murky ethical boundaries sometimes crossed, policies which need to be tweaked, incentives and regulations to be adjusted and so on, but as a whole, the machine works.

Overall, Chasing Medical Miracles conveys a message of hope. More clinical trials than ever before are being done, more stuff is being tested, and although “miracles” are unlikely, we’re chipping away at the rock face, gathering data a little at a time, and I think it’s okay to put some trust in the system.

A small comment about writing style. (I wrote this a long time ago. Found it in a drafty place.)

I read the original Ender’s Game by Orson Scott Card years ago, and at the time it seemed “simplistic”. The hero (Ender) and the path he took were just too perfect. He faced his challenges almost robotically and we never had to struggle; we were never really in any doubt as to his ultimate success. The story was direct and told without flair, almost as if it itself were written by a child. What set the book apart, though, was the depth of analysis of the characters’ absolutely every action and thought and intention; the lack of subtlety and, truth be told, the refreshing departure from “show, don’t tell”, that old writers’ maxim which was drilled into me in elementary and high school English classes. Okay, I confess at this point that I don’t remember the prose of Ender’s Game all that well, but with respect to Ender’s Shadow, this commentary seems very applicable.

The boy ate the banana and was no longer hungry.

That would be “tell”.

The banana peel lay on the table, and the boy’s stomach stopped rumbling.

That would be “show”.

The second seems far more literary. Want to get even more literary? In the “show” version, I still “told” you some facts (about the banana peel and the boy’s stomach) which implied the idea I really wanted to convey. But why not show the above facts, themselves, instead? This’ll sound a bit absurd, but that’s the nature of the beast, as we go one level of abstraction further up the ladder:

If someone had walked on the table, he would likely have slipped in a classically comical way, while meanwhile in the boy’s stomach elephants were no longer on parade.

That’s a pretty absurd way of describing lack of hunger due to having consumed a banana, yet we see prose which aspires to that level of obliqueness all the time, and it’s often venerated for that. What does it add, really?

My point is that Card’s novels work because he just flat out “tells” and doesn’t pretend to be doing anything more than that. Although the reader isn’t left anything to figure out, I maintain that for the most part, making readers figure things out is mostly tiring, as is the telling of irrelevant facts (e.g., the fact that the banana peel is on the table; the fact that the boy’s stomach was rumbling) in order to be “showing” the important facts which are illuminated only by implication. In truth: take the flowery language and non-linear narrative blocks out of many books, and the story itself would compress quite a bit. Perhaps the same mood wouldn’t be conveyed, true, but sometimes “he felt sad” is just as good as “he hung his head in despair”, unless he really did hang his head in despair, but that’s just a literary cliche at this point and we don’t even know what he really did with his head when you say that, if anything (other than feel sad with it) unless more specific non-cliche actions are described.

Card just says “he felt sad” and uses the extra space to explain exactly why he feels sad, what his sadness means, what he is doing differently now because of his sadness, what he feels about the fact that he feels sad, how other characters react to his analysis of his own sadness and, in turn, their analyses of their reactions to his analysis of his sadness and their reactions to their analyses of such, and so on. And all of this is somehow relevant to the story.

That makes it atypical and fun.

Why does WordPress have a selectable “Uncategorized” category? Isn’t that contradictory?

Further, although it automatically sets “Uncategorized” upon save if no other categories were selected, it doesn’t unset that category when selecting other categories, leaving open the possibility of a post being both definitively categorized and categorized as Uncategorized all at the same time. Strange.