pktechgirlbackup | Entries tagged with medicine

One potential treatment for cancer is to infect the patient with a virus that kills only cancer cells. But in practice, we've only ever seen temporary gains from this, in part because it's so hard to distribute the virus to every cancer cell.

Another potential treatment is to irradiate the patient nearly to death, which kills the cancer but also their immune system. You can give them a donor immune system, but that's incredibly vulnerable to graft vs. host syndrome. You can extract and save part of their own immune system, but risk a sample contaminated with cancer. Until you can guarantee that the sample is cancer free, the treatment is unusable.

What they're testing right now is extracting a bone marrow sample, treating the sample with the anti-cancer virus, irradiating the the cancer patient, and then reintroducing the sample that you can now guarantee is cancer free. It's so absolutely brilliant I could cry.

The story: The Susan G. Komen foundation decided to not give any more money to Planned Parenthood, for a reason that officially has nothing to do with abortion in reality almost certainly does. The pro-choice community goes on the warpath and gets the decision the reversed.

My biases: I'm extremely pro-choice, and without very much research on the subject, think Planned Parenthood's work as a low cost health care provider is pretty neat.

I'm also pretty anti-Komen, to the point that I go out of my way to not purchase pink ribbon products.* I think breast cancer gets a disproportionate share of the oxygen, that their attempts to control ribbon logos demonstrates that they're in it for themselves, not to save lives, I don't like conglomeration charities in general, and the "buy this product to support women" type partnerships really bother me..

That said... PP doesn't do a lot of anti-breast-cancer work. They do manual breast exams and teach people self exams, whose efficacy is controversial. It seems like PP's big value add here is just educating women, especially younger women, and possibly providing a low cost referral to a mammogram. These are excellent things to do, but the only incremental cost is the provider's time. So fungibility of money aside, giving PP money means you're at the very least paying for the building infrastructure (assuming you're not displacing higher-revenue activities).

As someone who likes most of PP's work, this strikes me as an excellent thing to do, but it's not a particularly cost effective way for SGK to advance their core mission. So while the choice to defund them was very clearly motivated by an anti-abortion stance, it strikes me as completely plausible that the original decision to fund them was equally political, that it was wrong based on SGK's priorities, and it took an equally motivated opponent to get the (wrong) decision revoked.

*Possibly the only opinion I will ever have in common with Barbara Ehrenrich

( adrenal fatigue update ) I explain this to my doctor, and she agrees to accelerate the thyroid drug schedule to "start tomorrow." Her feeling is that if it's the wrong drug for me I will know almost immediately because I'll feel icky, and smart girl that I am, I'll stop taking it. If I feel awesome on it, then we know that this was the problem. If I feel no change, we'll run more tests.

I bring up the ease with which my doctor prescribed thyroid medication because I want to contrast it with the difficulty experienced by Megan McArdle and my friend Ivan. Both had histories of thyroid disease. Both are clearly experiencing symptoms of those diseases (in McArdle's case it's progressive, in my friend's case it appears to be cyclic). Neither can convince their doctor to give them medicine to treat it. In Ivan's case the doctor clearly didn't listen at all, because his major complaints were "I lack the energy to exercise and I'm sleeping 16 hours at a stretch", and the doctor's response was "exercise more and sleep better." And this was a prestigious endocrinologist Ivan's wealthy doctor father pulled some strings to get an appointment with.

I'm not sure why thyroid medication is so hard to get. Yes, too much of has negative consequences (heart issues and loss of bone density), and yes, as Requiem for a Dream showed us, it is abusable as both a party drug and weight loss aid**. But much like pain medications, I don't care if people shorten their own lifespans to look hawt. I don't think your heart health is a public good*** Holding someone's medical care hostage to the fact that some other people might abuse the medication is a failure of care.

I still don't see why the government gets to weigh whether or not I can buy a toxic-only-to-me chemical at all. If you're worried about poisons, flavor-label dangerous enough to be concerning****. And of course, anti-infectious disease agents remain public concerns. And I think there's a very legitimate role for the government to verify purity. But it's impossible to test whether or not every drug isn't *someone's* best option, and a fool's errand to try. Insisting that each new drug be at least as good as drugs already on the market removes price competition and ignores human variety.

Nope, still no pithy summary for my anti-regulation rage.

*To be fair, everything can be a sign of hypothyroidism. For example, I had been wondering why, if I had hypothyroidism, I had such lustrous hair. Dry or thinning hair is one of the primary symptoms. Today I went in for a haircut and the first words out of the stylist's mouth were "you know that's not dandruff, that's oil.", which would explain why the anti-dandruff shampoo isn't working. I looked it up, and it turns out that oily scalp is *also* a sign of hypothyroidism. And while it keeps my hair very pretty (except for the ends, which never got enough oil and so had gotten quite dry), it is really problematic for my scalp.

**Side note: the drug they used in the movie was Synthroid, I'm on Armour Thyroid.

***, and I will maintain that believe even if we get nationalized health care, because even a protracted battle with heart disease ending with your death at 60 is cheaper than a protracted battle with Alzheimer's at 90.

****The liquid SSRI used to treat my neuralgia was blueberry mint flavored, but I think that was so I could verify I had the right medication.

Choice quote from an article on medical schools refusing donations of fat bodies:

Donated bodies are used primarily for first-year anatomy students, who need to learn how the human body is supposed to look

A brief digression: the diagrams in medical and biology textbooks are not only stylized, but idealized. In the real world, there's a lot of variation in the size, shape, color, placement, and existence of organs. I'm perfectly willing to grant that we should ease students in to this by giving them the most predictable bodies possible. And that there are practical issues with extremely large bodies, in terms of the equipment required. But at some point they need to learn to deal with variety. I'm choosing my words very carefully here because while fat people may deviate farther from the model on average, fat itself is normal and something doctors need to learn to deal with. Just like they need to learn to deal with patients who become sleepy when they take sudafed or caffiene, metabolize anesthetics or pain killers faster than average, or have all the symptoms of hypothyroidism but numbers in the "normal range"- a range that was often defined by setting percentile cutoffs of the population distribution, without regard to how healthy the people in that range were. Artists can learn what the human body is supposed to look like, but doctors need to learn what it does look like.

Also, I assume everyone donating their body died of something, and whatever that was is going to be a pretty substantial deviation from the living. It can't all be trauma victims.

But wait, it gets better. That article links to a blog on the same website, titled "A final reason to lose weight" and it is even more fat shaming than you would expect based on the title.

Meanwhile I'm reading a book called Rethinking Thin (Gina Kolata). It is all about how calories in - calories out is a myth, and that our diet has far less influence over our weight then what we've been led to believe (something I firmly believe after watching my diet and exercise have no effect on my weight, and various medical treatments lead to drastic changes). It also includes the following choice sentence:

...Weight Watchers, where you start by stepping up to the scale to weigh in and you cringe in embarassment if your weight reveals you've had a few diet transgressions

Let me remind you that the book's stated premise is that you can't diet your way thin in a permanent, sustainable, healthy way. I believe the author believes that to be true, but is unable to shake the relevant cultural programming. So when she needs some description to spice up a sentence, that's where she goes. It's really disheartening.

First, I think that we, as a governmental unit, have a problem when there is actual case law deciding whether or not the X-men count as human.

The issue arose because many years ago, US doll manufacturers wanted to stave off foreign competition, and so got the tariff on dolls raised. This created a legal distinction between things-to-be-played-with-that-are-human (dolls), and things-to-be-played-with-that-are-not-human (toys), with dolls having something like 2x the tariffs. Marvel's lawyers went to court to argue that because the x-men were not human, they should be taxed at the lower toy rate.

Regardless of how the case was decided, this was a stupid argument. I think people everywhere on the political spectrum recognize this. But they (tend to) think the solution is to remove this one stupid law and move on (with liberals and conservatives disagreeing on exactly which laws are stupid). I view this as merely merely the most ludicrous example of the problems that arise from writing very specific laws, and that as long as you have that power, it will lead to bad results. This would be true even if there was an actual reason to tax dolls higher than toys: the burden isn't just to prove that we'll experience n% more growth if we tax dolls at a higher rate, it's to prove we'll experience experience n% more growth if we tax dolls at a higher rate after we've spent a bunch of money arguing exactly what a doll is. The money spent on lawyers and judges for that court case is a completely dead weight loss to society.

To use a more serious example: I'm conceptually fine with taxing junk food at a higher rate than food with nutritional value. But I don't think the benefits outweigh the costs of legally defining junk and not-junk, and the creepy symbolism of the government deeming what we should eat.

Second, there is an DEA created shortage of anti-ADD meds. They don't see it that way, of course. They don't even think there's a shortage, because you can still by full-priced name-brand Adderall and Ritalin. Every year the "the D.E.A. accepts applications from manufacturers to make the drugs, analyzes how much was sold the previous year and then allots portions of the expected demand to various companies." The original patent holder can choose how to distribute their allotment between the (expensive) name brand or (cheaper) generic. In something that comes as a complete shock to all of us, when there's no competition from other generics (because demand exceeds supply), they choose to make the thing that makes them more money. The DEA's official response to this is that there's no shortage if the name-brand is available, and if people can't afford it, that's the manufacturer's fault for being mean.

Supply restrictions create price increases. That's what they do. That's not even econ 101, it's just true. All this is being done against the scourge of college students using ritalin as a study aid/party drug. Which may not be good for the individuals in question, but I'm not seeing how stopping them is a public good. And no one else would either, if they hadn't been trained through generations of drug wars to expect that fun + chemical = government crackdown.

And the people using it recreationally are probably less affected by the shortage than legitimate-but-poor users. The recreational users will have on average more money and more connections. The poor people with ADD will find it harder to go to 20 pharmacies to find one with generics, not only because the usual transportation-while-poor-issues, but because they have ADD and I hear that sometimes makes it hard to focus on a finicky but boring task.

I'm reading Sex Cells, which is about the business of sperm and egg donation. At the start of both industries, gametes were selected by the doctor*, with some thought towards matching the phenotype of the parent. Eventually new companies sprang up and competed on how much information they could offer about the donor, giving clients catalogs with essays, pictures, and health histories going back three generations. Doctors really resisted this, because (they say) it was an unnecessary complication and they just wanted to pick the medically best match and move on with it.

This reminds me very much of a quote from Born in the U.S.A>: "Doctors think of pregnancy and childbirth as something that happens to a woman. We think of it as something the woman does"

Doctors look at the problem as "this man can't get this woman pregnant. I will make her pregnant, and there will even be childbirth at the end of it. Done and done." While the patients are thinking of the problem as "I want a baby, which I then want to raise into a health, happy adult that loves me."** For the first problem, sperm motility (or later, egg viability) is almost the only metric you need***. For the second, it's really beside the point.

The second interesting thing here is how the medical community just assumed physical resemblance was of the utmost importance (especially, although not solely, racial), even while denying that anything else should be a factor. Is this an extension of viewing the eventual child as a medical process, a statement about how important it was to pretend the father was also the sperm donor, or something else?

And of course there were control and money issues present, but those are boring.

*and perhaps with some help from nurses, who deliberately fail samples from people they felt shouldn't donate.

**Some of them may not be thinking that far ahead. But potential parents who say "I want a baby" and don't consider that in a few short years that baby will be shouting how much she hates you over the sound of her terrible, terrible music are another pet peeve of mine.

*** I don't think they can test genetic compatibility between donor and recipient even now, although that would also be informative in the pregnancy-generation process

So in the past month, HIV and its cousins* have**:

1. Cured Leukemia
2. Made kittens glow in the dark

I only intellectually understand how terrifying AIDS was in the 80s, when it appeared to kill you in months and no one knew what it was. I grew up in a time when it was dangerous, but known- there's a test for it, and treatment that can extend your life. I'm getting the feeling that 200, or maybe even 100, years from now, people will view HIV as a tremendous gift that is the basis of immortality and six pack abs. And they'll read about the 80s and kind of get it intellectually, but not really, the way I don't understand fear of bacterial illness. Until their immortality shot mutates and kills them horribly, just like antibiotic-resistant bacteria are going to kill us.

*by which I mean, heavily modified viral particles based on HIV and its feline equivalent

**by which I mean, in the past month, I have heard about the following things that happened some time ago.

Legally, I think selective reduction (the process of aborting some but not all of the fetuses a woman is carrying) has to be legal. Morally, going to great lengths to conceive (via IVF) and then aborting one of two healthy fetuses because you only want one does not sit well with me (higher levels of multiples are significantly less disquieting, because they present clear and present danger to both mother and children. The jury is out on twins). I can't tell you why it bothers me so much more than abortion of a singleton, or twins for that matter, but it does.

This guy, however, is an asshole:

In 2004, however, Evans publicly reversed his stance, announcing in a major obstetrics journal that he now endorsed twin reductions. For one thing, as more women in their 40s and 50s became pregnant (often thanks to donor eggs), they pushed for two-to-one reductions for social reasons. Evans understood why these women didn’t want to be in their 60s worrying about two tempestuous teenagers or two college-tuition bills. He noted that many of the women were in second marriages, and while they wanted to create a child with their new spouse, they did not want two, especially if they had children from a previous marriage. Others had deferred child rearing for careers or education, or were single women tired of waiting for the right partner. Whatever the particulars, these patients concluded that they lacked the resources to deal with the chaos, stereophonic screaming and exhaustion of raising twins.

You see ladies, whether or not raising an additional baby is right for you depends on the sum total situation of every lady who is getting pregnant, or at least every lady who's getting pregnant via IVF. If they're mostly young stay at home moms married to their first husbands, who Dr. Evans has calculated would easily be able to care for two babies, then clearly your insistence that you can only handle one is whining. I especially love the remark about remarriage.

And this is why we don't make laws based on my sense of disquiet. Any rule I could make about "acceptable" abortion would be bound to leave at least one woman with a pregnancy and eventually a baby that she didn't want and couldn't handle. And even if I was somehow right, and she "should" carry the fetus to term, she doesn't think so, and carrying a parasite that your hormones are telling you you should love and protect above all else is one of the worst tortures I can imagine.

The first and most obvious answer is concern about antibiotics resistance. The amount of continuous, prophylactic antibiotics we use on farm animals is suicidal. But the more complicated answer is that it's a simple way to improve a number of hard-to-measure outcomes. Any number of animal care sins- low quality food, bad hygiene, too many animals, monoculture- lead to disease. But fixing all of these is expensive, and antibiotics are cheap*. But fixing them improves other outcomes as well- a cow that has all the trace nutrients it needs to fight infection will pass those on to me when I eat them. It also forces you to use smaller and more genetically diverse herds, which I think has a number of benefits. So even though the optimal world might have occasional farm antibiotic use, the best outcome I can enforce is no antibiotics at all.

And you know, there's no reason we couldn't have a tax on farm antibiotics. We don't have to worry that it's regressive or that it will lead to more infections, because those new infections would be in the same farmer's herd and they have every incentive to do the optimum thing.

*To the user. If we properly taxed them to internalize the negative externalities, they would be much more expensive.

The insurance/health care/health industry is unbelievably complicated, so I'm going to be discussing it in very small chunks.

Insurance is, by definition, an attempt to limit risk by betting on a risky event. Perfect insurance leaves you indifferent to whether something bad happens or not, although usually insurance companies want to have something short of that to avoid moral hazard and costs arising from asymmetrical information. This means that what we usually call "health insurance", which covers preventative care and routine testing, is not insurance (except in the sense that the meaning of a word changes through use), it's insulation. This has nothing to do with the value of annual check ups, or PAP smears, or dental care. It's just that these things are not unexpected expenses. Insurance works by promising you $n for a thing that has chance p of happening, and charging you $n*p + u, where u covers the the insurance company's profits and expenses. It's worth it to pay u for insurance covering truly catastrophic things, because money has diminishing marginal returns, i.e. each dollar is worth less than the one before, i.e. whatever I could buy with the $100 I spent each month on insurance, it probably doesn't bring me as much joy as getting all the chemo I need. But that's only true when n is large and p is small. If the opposite is true- such as with vaccines- then you're going to pay the insurance company $n+u and only receive $n back.

There's an unfortunate complication in that insurance through work is paid with pretax dollars, and individual insurance and direct pay for care are paid for with post-tax dollars. You don't even pay payroll tax on them. It's possible that u is small enough, and taxes high enough, that you are better off going through the insurance company. This law is stupid and it should feel stupid. Luckily, it's changing: FSAs and HSAs let you pay for for care with pre-tax dollars, and just about the only part of the Obamacare I liked was that it introduced the taxation of employer plans (I wish they'd taxed it as income rather than introduced an excise tax, and I think the exception for union plans is criminally corrupt, but I like the idea of taxing employer insurance so much I'm willing to overlook that). So hopefully that distortion is going away.

There's the fact that the insurance company will pay less than you do for the same care. Since medicine doesn't really benefit from bulk purchasing, this is too stupid to tolerate. One of the reason it happens is that so much "direct pay" care is never paid for, and the only way to make that better is to lessen the obligation of doctors to treat people who can't pay for free. We can do this by not requiring them to treat them, or we can pay for it ourselves. Either way, it's not going to solve the whole problem. I think ultimately this will be solved by the doctors who leave the insurance system entirely.

There's another complication though: usually you have no idea what $n is. That gets its own post.

When inflation is used in the general sense, it refers to the increase or decrease in price of a pre-set basket of goods, selected to reflect what the average American spends money on. It's not perfect- adding or removing items causes discontinuities, and it's harder to select equivalent computers in 2000 and 1990 than to select equivalent grapes- but by and large, it's intended to reflect the price in the cost of *the same set of goods* over time. That is not how the term medical inflation is used. The numbers for medical inflation are simply "how much money what we are spending on health care."

Imagine if we calculated "silicon inflation", and simply counted all the money we spent on electronics. That's gone way up from the 1950s to today. I suspect but can't find the data to demonstrate the total spending on electronics is continuously rising. But the price for any individual thing is going down- my phone is about as powerful as the computer I went to college with, and costs 1/4 the price- we're just taking advantage of that cheapness to buy more awesome stuff. Saying we have silicon inflation would be misleading at best.

Medical inflation is a little more complicated than that, but the same thing is basically true. We're spending more on medical care because we now have new care available. Some of that is awesome kickass lifesaving care. Some of it is "lifestyle" care that is nonetheless valuable.* Some of it looks more expensive but leads to higher quality of life than the cheaper option, even if it doesn't show up in the life expectancy numbers. Most of the care that was really expensive 20 years ago is cheap now, because the patent has expired.

The wrinkle in my cute little story is that most of the care that was cheap 20 years ago is now slightly more expensive now. A doctor's visit for an ear infection doesn't require less labor than it did 20 years ago**, the antibiotics were already off patent so they haven't gotten any cheaper. Meanwhile, other sectors have gotten more efficient, so the earache visit is more expensive by comparison- i.e., it's inflated. On the other hand, if the antibiotics of 20 years ago don't work for you, we have some new ones. They're more expensive, but you'll keep your hearing.***

Which is not to say that modern medicine is perfect or is priced perfectly or that there's not a lot of unnecessary expense. But we should be accurate: If you wanted an 1980s standard of care now, it would cost less than it did in the 80s. If you want a modern standard of care, it will cost more, just like having my Droid 2 costs more than a phone-only phone.

*If if weren't for a constant string of new allergy medicines, I definitely wouldn't have graduated college with my second major, which means I wouldn't have the career I love so much. There's a reasonable chance I wouldn't have gotten into the college I did, and a slight chance I wouldn't have graduated high school. Lifestyle drugs are not the frivolities people sometimes describe them as.

**There's some inroads towards this, with using people like nurse practitioners or physician's assistants for simple things. We'll see how that goes.

***Antibiotics have a certain running-to-stay-in-place aspect because bacteria evolve. I'm pretty sure there's an even better example involving eye glasses, but I don't know the technology as well.

People sometimes advocate requiring congresscritter's to have family in the military as a method to cut down on aggressive wars, the idea being that when it's your son's neck on the line, you'll think harder before invading. This sounds like a good idea until you remember that we have a volunteer army, and the people who volunteer (and their families) are not random subsets of the population. You will actually end up with more pro-military, pro-military-action congresscritters than before.

Likewise, people advocate preventing regulators of government agencies (most recently financial, but more relevant to my current interests, also medical) from going on to hold or having held positions at companies they regulate. As Overdose points out, that's tantamount to disqualifying everyone who might know something about the topic. You're left with professional regulators or the people too incompetent to get hired elsewhere. Similarly, when you ban university researchers who take government money from doing for-profit work, the chances that you cost the for profit world a researcher are smaller than the chances you cost the public domain world a researcher. But regulators who are in bed with the regulated and researchers diverting public funds to research that benefits them financially are serious problems. Much like with the antibiotics, there doesn't appear to be a solution that doesn't involve judgement calls.

Speaking of antibiotics, why the hell are farmers allowed to give cows continuous prophylactic antibiotics? I can't think of a rational reason that I should be allowed to give my cat the good antibiotics except that I will cut you if you try to stop me, but that's occasional and there's minimal chance his stomach bacteria are going to mix with something infectious to me (although he does his best, what with the throwing up for three nights in a row and all). As opposed to the animals we are going to eat which will then sit in our stomachs and mingle with our stomach bacteria which then go fool around with the more deadly strains of E. coli so they can feel cool and rebellious.

A lot of the building block research in medicine is done by universities, with government money (the NIH, NSF, sometimes the military, and smattering of smaller agencies). It's highly unlikely this research would ever get done without government money, because you can't patent a biological fact (source: Overdose). But big pharma couldn't do their work without it. All in all, I think I'm okay with how this works out. Basic bio research has all the hallmarks of things that should be government subsidized: non-rival (my use of a fact does not prevent you from using that same fact, non-excludable (meaning it's either impossible or more trouble that it's worth to keep you from using it), and undersupplied (this one has a fuzzier definition). It does lead to perverse incentives though: hormones are found naturally in the body, so you can't patent anything you discover about them.

That means there's no financial incentive to do research on the effects of bio-identical hormones, since your competitor can cite that same research when selling the product. But you *can* patent hormone-like molecules that are not identical to those found in humans, so that's what people research and sell. As someone who believes that bio-identical hormones are likely to be more effective and have fewer negative side effects, this discrepancy bugs me. But the solution is not to punish drug companies for researching their awful fake horrible hormones, since they'll just move that money to curing baldness, but to recognize that this is another undersupplied public good we should invest in. The same goes for nutritional research.

Many people complain that the government is doing all the heavy lifting and drug companies are just picking out the gems and cashing in, implying that the additional research the drug companies do is unimportant. First, if it's truly unimportant, we should tell the FDA to stop requiring it. Second, if it's so easy to do, why don't we (in the form of government and/or universities and/or private charities) do it ourselves? If we can truly do it better than the drug companies, than hurray. If not, we've wasted some money, which I don't love, but it was worth a shot. We could also patent building block research and charge companies. I have no idea if this is a good idea. The answer strikes me to be based more in fact than in principle, and I don't know enough facts. If no one else has enough facts either, and I suspect they don't, we could always try patenting a few things and see what happens. Again, it might waste money, but not a ton, relative to the potential benefits. My only concern is that we don't switch the whole system over without even investigating if the new way has the potential to work.

Another option is buying patents off of companies and releasing them into the public domain. This brings up the sticky issue of how much to pay for them. One of the nice things about prices is that they give us a signal of how valuable something is: if two drugs are equally effective but one has more side effects, how much is the better one worth? I don't trust the government to evaluate that at all. But I do more-or-less trust other companies. Not because companies are inherently smarter, but because dumb companies go out of business. So what I would like to see explored is that for any biomedical patent to immediately go up for auction at a specified point. Anyone could bid on it, including the original inventors. N% of the time, the auction would proceed as normal. 100-N% of the time, the government would step in and buy the patent for [maximum bid]*m, plus maybe compensate the would-be winners a bit. You need to pay extra because the fact that they could lose a bid will lead to slightly less rigorous research than would otherwise be done, and companies will compensate by underbidding (I also think we can help this by paying off the would-be winners, just a touch). You discourage overbidding because some percentage of the time the companies will walk away with a new patent and they don't want to overpay for it. It's not a perfect solution, in that by definition some of the patents will need to continue to be held by private companies, but it might be a pareto improvement.

I've mentioned coordination costs a whole bunch of times without explaining what I meant. The way things are now, a given drug or test might depend on intellectual property owned by several different entities. Potential profits on a given product are hard to predict. So every company has an incentive to negotiate really hard for their cut. These negotiations can be really expensive to undertake even if they lead to nothing, and thus act as a deterrent to even trying. A standardized profit-sharing structure would fix this, at the cost of fuzzing the signal as to what research was really the most valuable. According to Gridlocked, this solution is more or less coming about without any government intervention: much like open source licenses, the industry has agreed on a couple of standard patent sharing contracts, in which everyone can sign on quickly, and payment is contingent on the product actually going to market. This is a pretty textbook example of why I'm wary of government intervention even when private companies are screwing around: a government solution may be better now, but it will lass forever. A market solution, while not perfectly responsive, is more adaptable over the long run.

One thing I think is important to note is that the scientist who first cultured Henrietta Lack's cells, Guy-something-something*, never made a dime off of the cells or the techniques he invented- his was a life that took money in and gave science out. Given how prevalent the cells are and that people will give them away, it seems like the companies selling them are really selling convenience, not the cells themselves. Which doesn't make it okay to steal them and cell them, but is noticeably better than stealing them for the express purpose of profit.

I also find it telling that Dr. Guy's fondest wish was to do to himself what he'd done to Henrietta: he was devastated when his cancer was so inoperable they didn't remove any cells at all, preventing him from creating his own cell line. Told he was definitely going to die, he volunteered himself for a bunch of not-yet-tested on humans research, purely to help science.
Would science progress faster if all scientists were like Guy, and there were no profit motive? It depends. I think when a lot of people think about this, they're envisioning transforming everyone who does medical research for money into someone who does it for love. That's a great thought, but it's not what's going to happen. What happens is everyone who's in it for profit goes to a different industry and we end up with less medicine. The only thing worse than a cure you can't afford is a cure that doesn't exist. And in 30 years the expensive cure will be cheap(er), but the non-existent cure is still non-existent.

So to prove that taking the profit motive out of medical research would be net-beneficial, you have to show that the friction caused by profit motives is greater than the benefit. And there is friction: it leads people to keep research a secret, slowing new discoveries. Coordination costs for treatments that require patents from multiple owners can quickly dwarf the potential profits, leading to a loss for everyone as no one gets money or treatment. And of course, the suffering or death of people who couldn't afford the medicine.

What does profit motive get us in return? Well, we can assume pharmaceutical companies wouldn't pursue products without them. It's pretty clear that they overinvest in lifestyle drugs, relative to the social optimum, because they can charge whatever the hell they want for them, without fear of photogenic cancer patients shaming them into offering it at a lower price. Researching new drugs is an expensive and failure-prone process: pharmaceutical companies look like they have high profits, but what they really have is highly variable profits with the unprofitable companies going out of business. it seems- is- tragic to watch someone die when there is a cure they can't afford, but I prefer that to a world where everyone dies because there's no incentive to create a cure. Right now we strike a compromise, letting companies earn profit on drugs for a while (I believe it's 32 years, but the clock starts ticking when the substance is patented, not when it's approved for use, so the functional life of a drug is much shorter than that), and I think that's a good middle ground, although I wouldn't know where to begin figuring out what the correct length of time is.

Is there a way to keep the benefits of the profit motive without the cost? Maybe. But I have to discuss more of the financing first.

*I'm not being cute, his first or possibly last name really is Guy

Warning: possible overgeneralization from my own experiences.

Background: from ages 12-21, I wanted to be a scientist. I left because it turns out science is a spectacularly crappy career, but I still feel some kinship with it.

Opening anecdote: One day in my sociobiology class, our lecturer described a particular experiment demonstrating that people are more friendly towards those who share their name, more so with last than with first, more so still if it's a rare name. The experiment was elegant, required a minimum of effort, and got the undergraduate experimenter published in Nature. For those who don't follow these things: that's roughly equivalent to throwing the winning pitch at the World Series at 17. My friend and I turned to each other and, in unison, mouthed the words "that bitch."

My point is, scientists are competitive. They care about truth and knowledge and expanding human horizons... but they also care that they're the one to do it. It's almost tautological, because while I'm sure there are many excellent scientists who don't care that much, they tend to get scooped. What's worse, there tends to be a particular moment for a particular discovery, and while 99.99999% of human beings are still incapable of finding it, there are still three or four other people with the knowledge, inclination, and equipment, and if any one of them beats you, you might as well be one of the 99.99999%. That was some of the lesson of Quicksilver*: you have all these brilliant minds coming at once and then they waste their time competing with each other and hiding results so the others can't steal them.

This feels like a pretty lonely limb, but I think that's why scientists are so quick to beat down Henrietta Lacks (the woman whose cancer cells went on to be the first and most productive line of cultured human cells). These men* gave their entire lives to something that has minimal financial reward (relative to what else someone with that level of intelligence could do) and is really only prestigious within a small subculture. They did it because they wanted to discover things, wanted to contribute, and wanted the respect of that subculture. They did at the expense of years and years of their lives. Then this woman comes along and contributes about as much to medical science as a nobel prize winner, and she didn't have to sacrifice a damn thing.***

I think researchers try to anonymize and deemphasize the source of their data- the human beings- because they don't want to share the credit. Human instinct is to give the biggest rewards to the person who made the most sacrifice, and giving part of their body feels like a bigger contribution than collating some data, even if the scientist provided the spark of insight and any old human could have donated blood. Knowing this, the scientists dehumanize the donors in an attempt to bring prestige/credit/ownership to themselves.

I'm basing this in part on my own feelings. While listening to the book there's a thread in me saying "why are we paying attention to her? She didn't do anything, she didn't choose anything, she was just in the right place at the right time to have something happen to her?" She has an interesting story, and it's pretty illustrative of a lot of things that were wrong with America at the time and are not as fixed as we like to think, but why is her story more interesting than any of the thousands of other poor black women who went to that same medical clinic? Why should she get remembered and they don't?

And the answer is... because. Because even without bringing metaphysics into it, it is good to cultivate an attitude of respect for people who contribute to things. It's good for the soul to know the web of connections you're living in, and bad to disregard people who made substantive contributions to it. Overruling that voice saying "but she contributed the actual living cells" comes at a real psychic cost.

Okay, that got dramatically less articulate at the end but I've still got a good 2/3 of the book left so maybe I'll figure out some more later.

*This is one reason I don't manage to keep my reading on theme. It's more fun coming up with connections between whichever books arrive at the library together

**The women scientists are likely to be even less happy with her, since they faced many more obstacles than the men.

***I mean, she did die at 30. But it wasn't intentional so it doesn't count.

I'm 20% through The Immortal Life of Henrietta Lacks (by Rebecca Skloot) and it has every appearance of being one of those books that changes my mind about things: it's well written, well researched, not the approach I would take but not so alien as to be useless, and in an area I don't understand well. Broadly, the book is about cancerous cells that were taken from a (black, poor) woman and became the first human cells to be successfully grown in a lab. These cells have gone on to do all sorts of important things for science (which worries me, because they're CANCER CELLS being used as models for human, and cancer cells THAT COULD SURVIVE IN CONDITIONS NOTHING ELSE COULD* at that). But they were taken without permission, and while her medical care was no Tuskegee, her story shines an uncomfortable light on just how bad the best medical care in the country for poor black people was at the time. It uses her descendents' medical care to talk about the care available to poor black people now. I don't know if this was intentional, since she hasn't mentioned that cervical cancer is caused by HPV, but the fact that her cancer was caused by an STI, of which she caught numerous and varied from her husband, certainly makes me think about issues of sexual violence, consent, coercion, and 1950s gender roles. And there's a lot about race in there too. In short, despite my well earned reputation for enjoying really astonishingly depressing books, I'm finding this one a little stressful. Since I could easily see my opinion change over the course of reading this, and I have a tendency to forget I ever held another opinion when that happens, especially when the old opinion was muddled and weak, I'm recording some of my thoughts on the matter now.

Bodily integrity and control are very important and should be respected
Patients are idiots and keep refusing to let science use things they're getting removed anyway.
but it's not consent if you're not free to say no
but they're so stupid.
I once had an optometrist (optomologist? the doctor one) slip in a form saying he could use results from my exam in research studies without even notifying me. And it was opt-out. Now, it would have been nice to get a note, but I totally understand why he didn't want to bother with notification. But I really hate it when people, especially doctors, slip in things hoping you won't notice, so I opted out. Just to piss them off.
Even though the theoretical universe says that it shouldn't matter if your doctor anonymously writes up your case, I think that human intuition is that no one can serve two masters, and allowing them to write about you will subtly shift their priorities to your detriment.
This isn't such a big deal when it's your barista mining you for poetry material, because you feel confident in your ability to assess his coffee making skills. But it's a really big deal when you're trusting someone else about something very important that you don't understand at all.
The reflexive no may be a desperate attempt to maintain control in a situation where you have so very little of it.
it was common belief at the time that doctors should be allowed to do research on public ward patients, since they weren't paying for their care
I am okay with this, for very limited definitions of the word "research". Unnecessary medication? no. But I think it's ridiculous that we don't even track the outcomes for procedures medicare/aid pay for. And I think I'm okay with free patients being required to give medically unnecessary tissue samples, if it can be done without harm.
did you know that hospitals keep the foreskins of babies they circumsize and sell them for thousands of dollars? On one hand, the families didn't want them before, why should they now? On the other hand THOUSANDS OF DOLLARS. Also, it makes me suspicious of the AMA's support for a procedure that: 1. has no medical justification when done on infants. 2. has a nontrivial number of people saying it's abhorrent.
It's sort of like organ donors. You're allowed to not give up your organs, but not for stupid reasons like "I can't be bothered to think about something so icky until it's too late."
Lacks's family complains specifically about not being able to afford medical care when their mother gave so much to science, especially when parts of science are charging other parts of science $25 a vial for it. And yeah, that does feel extremely unfair.
I think this stems from the human intuition that if you give something to X, even something that costs you nothing, X owes you (or your descendants) something of the returns they got with that object.
This is logically incorrect. Either science owes them money (which can be spent on their choice of medical care, education, high priced call girls, or anything else they might desire) or it doesn't.
early chemotherapy apparently consisted of taping radium to the cervix. I can't tell you how unpleasant it is to listen to that while you're biking.
It feels unfair that some company makes $25/vial off of Lacks's cells and her family gets nothing.
The lab had gone through hundreds if not thousands of tissue cultures before happening to find one that worked. Tracking all of those would have been a nightmare.
But letting them count expenses against these profits opens the door to hollywood accounting.
normally I'd just say "let the market sort it out", and if they can't afford to do the research, so be it, but I want to be young and pretty forever, and discouraging medical research does not jibe with those goals.
This is related to a problem with medical patents: if you have an awesome idea that relies on patents from 10 different companies (easy to do in medicine), you basically can't make it, because you'll never be able to negotiate a good enough deal with all of them. Last I read there are some workarounds for this involving standard contracts, but it's no panacea.
Partially because if you're a bureaucrat who kills a deal that would have made the company millions, no one will ever know. But if you're the bureaucrat who sold a patent too cheap, you're dead.

*It's unclear at this point in the book if Lacks's cells survived because of something particular to them, or because the scientist just happened to get the mix right at that point.

When my doctor prescribed me hydrocortisone, it was in 20mg tablets. Not a big deal when I was taking 50mg, but now I'm at ~5, or I would be if pill splitters could reliably do quarters, which they can't. A skilled operator can get halves pretty reliably, but not quarters, and even the best will lose some to powdering. My doctor gave me the 20mg pills anyway because there was a shortage of the 10s. "Why is that?" I thought quietly to myself. "Surely if you can make one you can make the other. And it's a generic medication made by many manufacturers. Why aren't they boosting production?" It turns out the answer is they're not allowed to.

WTF mate? Apparently you have to tell the FDA how much drug you're going to produce, and you can't up it without permission even if it's a leukemia drug and the FDA just shut down your competitors' plants so doctors are being forced to give patients sub-optimal treatments for their cancer.

The one thing that bugs me about this article is that it doesn't go into much detail on the review process. If all you have to do to produce more lifesaving medication is e-mail the FDA, I'm still against it, but it wouldn't account for the shortages on its own. Unfortunately I don't have access to the list of limited access drugs, but everything I've seen mentioned is off patent, which gives me the sneaking suspicion that it's not financially lucrative to apply for- either because the profit margin on generics is so low to begin with, or because you're required to give a discount to certain medical providers that target the poor, and can cherry pick who you distribute to first. Which doesn't let the federal government off the hook, because they're the ones making it expensive to produce more for no valid reason, if they want a thing they should raise taxes and pay for it, not mandate that it be sold below cost.

I'm still trying to figure out why they have the limits in the first place. Some of it is the DEA wanting to limit abuse, which starts me on another rant about how we'd rather have people live in excruciating pain (or have their ADD undertreated) than have some other people enjoy something inappropriate, but I doubt a chemotherapy drug can be used recreationally, and presumably 20 mg tablets of hydrocortisone are easier to abuse that 10 mg tablets. I refuse to be one of those libertarians that thinks the government does stuff just to be mean, but it's sure looking plausible here.

Good news though: new job gives me interlibrary loan access to the university library, which has Overdose, a book on prescription regulation I've been coveting for a while but was not quite ready to purchase or pay for city-library interlibrary loan. For a bit I felt guilty about using this for non-work purposes, but then I realized I could just donate to either institution an amount that was more than it cost them to fetch the book for me (almost, but not quite nothing) but less than it would cost me to get it through public library interlibrary loan ($5, plus it takes more time to pick up the book). It's a win for every one.

I figured out why putting a heavy tax on antibiotics and then giving poor people cash doesn't work: overuse of antibiotics has negative externalities, but so does underuse. It not only encourages people to stop prescriptions early and save the pills for next time, which is just about the most horrible thing you can do in terms of fostering resistance, but discourages people who have a genuine bacterial infection from treating it, leading to more infected people.

Unfortunately, giving the pills unpleasant side effects will lead to early abandonment as well. I just am not finding a systemic solution to this.

If it were up to me, the FDA would be run completely differently. For one thing, I really don't care how much pain medicine you take. I would allow adults to purchase heroin over the counter. Chemo? Well, I don't recommend taking it without a doctor's prescription, but sure, knock yourself out. And this whole drug approval process is insane: to get approval, you have to prove your drug is strictly better than other drugs in the class on the market. This is stupid. Humans are highly variable, just because something is worse on average doesn't mean it's not The Drug for one particular person- I'm eternally grateful for the fact that 3 or 4 different allergy drugs went on the market at the same time, because I built up an immunity to each of them in a year or two. At my peak I was taking three and my allergies still weren't under control (the eventual solution turned out to be non-pharmaceutical). If the FDA had only approved the best in class drug, I literally may not have been able to finish high school; my allergies were that bad. And I'll decide if the pain relief I get from Vioxx is worth the potential heart attack, thank you very much*.

The FDA doesn't even do what it does very well. Did you know you don't submit a study to the FDA until after it's complete? So you can just not report a particular study and it doesn't count. What the fuck? If my world, the FDA would by and large be a data collection agency: the drug companies would register their studies before they even started, and report the results at the end. The FDA would collate those results to make them accessible to doctors, possibly also providing comparisons to similar drugs, and let doctors and patients make informed decisions.

But the FDA's real failure is in antibiotics. A government agency tasked with controlling access to drugs doesn't give a fuck about the overuse of the only drugs that have genuine negative externalities. And it's going to kill us if they don't stop.

That's probably alarmist. There are many decision points between now and death by superbug. We've gotten lazy about hygiene in the absence of insects and the presence of antibiotics. But the FDA's priorities are so very wrong in this case.

The solution isn't actually obvious though. As long as doctors are the gatekeepers, they have an incentive to give antibiotics to patients with viral infections to make them shut up. You could make them more expensive, but the middle class and above won't notice unless you make very specific laws about the insurance, and it has obvious repercussions for the poor. My usual answer to issues like that is "price things appropriately and give the poor more money", and maybe that works in this case too (antibiotic use has a negative externality, so it is good candidate for taxation), but it's not the same as a gas tax. You can force people to get N sick before giving them antibiotics, but that might actually make the problem worse. Ditto for making people afraid of superbugs- they'll ask for stronger antibiotics before they stop taking them needlessly.

The fact that most viable option I can think of is lacing antibiotics with something with unpleasant side effects is not a good sign. On the other hand, there is precedent: vicodin has ibuprofin in it not for the theraputic effects, but to give you liver damage if you take too much. Thanks FDA.

Kevin Drum thinks we should let the dead pay for medicare. In essence, each time you received medical care paid for by medicare, you'd receive a bill, due upon your death. If you die without sufficient money to pay it off, oh well, these things happen. If you die with money, medicare gets first dibs on it, before your kids.

This plan has some face validity to it. Considering the span between dirt poor and upper middle class, it's pretty progressive, especially compared to raising the eligibility age.*

But... like all taxes designed to soak the rich, it's going to hurt the inflexible more than the flexible, and that means that in the span between upper middle class and ultra rich, it's extremely regressive. Rich people can structure their estates, with things like trusts and insurance, to avoid the tax**. Drum handwaves this away by suggesting we pass laws against it, but that's really hard to do, unless you're going to ban old people from sending their grandchildren $10 for their birthday***. What the media calls "loopholes" were often put there for a reason, and you can't argue for closing them without understanding what that was. On the other hand, I don't know how much the ultrarich use medicare: unlike medicaid, it's possible to get good doctors with medicare, but not necessarily the best, and not necessarily on your preferred timetable. And medicare doesn't cover home-care/nursing home care very much if at all, which is a huge expense if you make it to that point in life. And of course there's no cost savings once someone accumulates more bills than they believe their estate will pay off, but there's no cost savings in that situation now either, so we've hardly hurt things.

What if we added a small interest charge? If you're poor and know you'll never pay off the bill, you still ignore it. But if you're middle class and planning on leaving an estate, better to pay it off now****? Or maybe that just incents more estate structuring. I really don't know about this one. But I do have to give Drum a cookie for coming up with a genuinely new proposal, there aren't enough of those in this area.

*I'm pro-raising-eligibility-age for other reasons, but even I have to admit it's horribly regressive, given that poor people die sooner. Actually, with the information at hand we can only prove delta is regressive. Depending on the relative payroll tax contributions, the system as a whole could still deliver the desired about of progressivity. Suppose we had a program that took $5 from the poor and $15 from the rich, and gave them each back $10. Then we change it to give the poor $9 and the rich $11. You've certainly made the system less progressive relative to its starting point, but you could argue it's still a progressive program, given that the poor make $4 off it and the rich lose $4. Or you could argue that the rich get more back so it's automatically regressive. Defining these things is harder than you'd think.

**I know this is true because that's how I define rich: middle class is when you have an estate (or say, an estate over $N, everyone leaves a few things behind), rich level 1 is when you preemptively structure your estate with a lawyer to lessen taxes (which means your estate is over the exemption level, which I think is currently $1 million), rich level 2 is when you start structuring your actual money you have while living to reduce taxes (for example, purchasing municipal bonds because they're tax free). It's not a perfect definition, but on the whole it works for me.

***And as a heartless libertarian, I'd at least consider not allowing people to give money to others when they're not paying for their own medical care. But most people won't.

****For a properly defined interest rate.

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Today I Learned...

Putting the edible back in credibility

Entries tagged with medicine

We are so smart

(no subject)

endocrinology update

Resistance leads to suffering

Libertarianism: not just about screwing poor people.

Ends and means

The fire that burns butter tempers steel

Other people's choices are for them, not me.

why I buy antibiotic free animal products

Insurance vs insulation

Medical inflation

Oh, right, Iowa votes early.

how a compound becomes a drug

You can't miss what doesn't exist

Why chance contributions matter

Henrietta lacks

Me for FDA chairperson

antibiotics, part 2

Well, we're boned

Salvaging medicare