Unlocking blocked transactions in kidneys, plasma, and more
This is a situation where people pretend to think an issue (such as paying kidney donors) has important ethical problems that philosophers have debated for centuries, but really they find the issue gross and 'unnatural'. The visceral feeling that something is wrong comes first, the ethical problems are invented to provide rational justification for the feeling. Paying Ukrainian farmers for seed oil: normal. Paying Ukrainian women for surrogacy: something something exploitation. The ethical objections frequently make no sense.
There is a good quote by the economist Joan Robinson: "The misery of being exploited by capitalists is nothing compared to the misery of not being exploited at all."
In keeping with Slow Boring's "Secret Congress" model, there is actually a bill working through the 117th Congress that would address some of the barriers to living organ donation, but comes well short of creating a paid donation market: The Living Donor Protection Act of 2021 (H.R. 1255/S. 377).
Currently, there are no federal laws to protect donors from losing their jobs while on leave for
organ donation and 25% of living donors have gone on to be denied or charged more for life insurance.
This bill would prohibit insurance companies from denying or limiting life, disability or long-term care insurance to living donors, prohibit insurance companies from charging higher premiums to living donors, and allow living organ donors to use time granted through the Family and Medical Leave Act (FMLA) to recover from donation.
It's not perfect, but currently has overwhelming bipartisan support in both chambers of Congress. If this sounds like something you think Congress should be working on, reach out to your Members and ask them to join on if they haven't already! And Matt - Feel free to use any of you connections on Capitol Hill to help move this through the Secret Congress.
I had to think a lot about the bioethical issues around new medical technologies for my book, Radiation Evangelists, so I know a bit about this topic. I really enjoyed this post; I think it gets all the big ideas right. That said, I do want to offer a little bit of nuance in the other direction on some of the particular problems with marketization in pharma, biotech, and medicine. I'm still a fan of increased marketization, for all the increased human welfare reasons described in the article, but I also know that some stuff is going to go wrong in predictable ways.
Human challenge trials, in particular, are an issue where I think the benefits have been heavily overstated. I'm not saying they don't exist. But they have been the subject of a lot of theoretical hype at this point, and the problem with theoretical hype is that it always ignores a lot of stuff. The problems fall into a few buckets.
The first bucket is risk-reward. The question you should basically ask yourself is, "How many people am I willing to kill to prove that ivermectin and hydroxychloroquine don't work?" Recall that both of those treatments were touted by boosters as not just treatments for Covid, but prophylactics, i.e. they would prevent infection or serious illness. The good news on these treatments is that they were generally available, so we got to run an actual, real-world human challenge trial with these medications; people voluntarily took them in the midst of a live-ammunition pandemic, and we watched the result play out, which was that some people died, other people suffered the serious negative side effects of the drugs, and there were no gains relative to Covid baseline mortality.
So ask yourself, "Did I think the people taking horse pills were courageous pioneers?"
And of course, you have to remember that hydroxychloroquine and ivermectin had backers with an interest in the outcomes, which complicates the whole story. We're actually seeing a version of this play out with the Chinese vaccines, where the interests had a lot to do with state diplomacy. Again: it's a complicated story. You could just as easily note that Russia also rushed out its Sputnik vaccine, and that one has held up as being pretty good. So I'm not saying this story goes cleanly in either direction. I'm just saying that for every Moderna, you need to prepare for an Ivermectin and a Sinovac, and that complicates things considerably, in part because...
The second bucket has to do with the real world considerations around trial size and efficacy over time. Remember, to produce worthwhile results, drug trials have to be really, really big, not just to determine whether they work, but to determine what types of rarer side effects and health risks you are dealing with, particular in specific populations (i.e. J&J had a higher risk of clots in particular groups) and to give you a time horizon. Just to take one quick example, imagine a vaccine with an initial efficacy of 80% and an incredibly rapid fall-off rate, like it loses 50% efficacy in one month. Such a vaccine would be pretty useless. It would also pass a human challenge trial.
Challenge trials are either not going to get you the information you need, because they are too small or too time-limited, or they are going to employ such large groups of people over long enough periods that they end up de facto looking very similar to the existing structures, in terms of timelines. Could you have shaved a couple of weeks or a month off the Covid vaccine rollout process? Maybe, but...
The third bucket might be termed "real world considerations around pharmaceutical rollouts." Human challenge trials do not solve any of your other bottlenecks on a pharma rollout process. We saw this with Covid vaccines: they tried to spool up production in parallel to the human trials, and the trials outran the production stand-up by several months. It is not at all clear that releasing the vaccines a month earlier would have made a big difference in the rollout, since we know that the vaccine being produced in those initial batches was being used to vaccinate people BECAUSE PEOPLE IN THE TRIALS WERE BEING VACCINATED. It's not like the vaccine was sitting around on a shelf, going stale or something.
I would strongly argue that you could have made a much bigger difference and saved many more lives in 2020 by pouring resources and expertise into ramping up production and pre-building a robust distribution network. Everyone who was running around screaming about human challenge trials should instead have been running around screaming about logistics. Those people who signed up for human challenge trials? Their efforts would have been far better used as labor to staff gigantic vaccination clinics on Day 1.
I could raise similar kinds of questions or add similar types of nuance to all the other issues raised in the column. Again, none of this is to say that I don't think the column was good. I'm pretty much on-board with the claims and proposals.
But human challenge trials and marketization of med stuff in general tends to be presented as "one weird trick to solve X problem in medicine." A place that has been super guilty of this throughout the pandemic was Marginal Revolution, which I used to read religiously and now almost never look at, because so much of their pandemic stuff was total garbage and it made me start wondering (uncharitably) about their other content. Alex and Tyler are very smart guys, but human challenge trials was just one of about ten "one weird trick" pandemic responses that they were five-alarm on that just don't hold up to actual scrutiny.
Matt closes by writing, "More broadly, this whole set of blocked transactions strikes me as an area where humanity is massively underperforming for no real reason." And, honestly, I think to some degree he is correct on this issue. However, when you encounter issues where you feel this way, I think it is useful to deploy a Chesterton's fence skepticism about your own assessment. There are almost always reasons why people do things. They might be really bad reasons--I think with kidneys, a lot of the reasons are bad--but there is almost never no real reason, even if the reason is something totally infuriating. And if you don't understand the reason, you are probably going to fail at solving the problem.
That shouldn't be surprising. The world is complicated. But a lot of legit smart people lose sight of that, because the downside of the world being complicated is that it is no fun. There aren't clever solutions that get you around the slow, difficult, and sometimes tedious work of boring hard boards.
This is one more case of politics as a vocation vs politics of ultimate ends. People advocate positive visions totally divorced from the practical consequences of their actions. It applies to just about everything: the last three (serious) Slow Boring posts have been about regulation, the evolution of Democratic messaging, and US abortion policy, and it's been relevant to all three.
It's especially disappointing to see self-declared champions of disadvantaged communities acting in this way.
If we want to consider popularism when making arguments for opening these kinds of markets, then I think it is important to push specifically for small and extremely-regulated markets that are focused on ensuring that it isn’t possible for abuses to occur. You briefly mention India’s former surrogacy market, but it was rife with genuinely awful abuses. Coercion, lack of care for the surrogates’ health, and even cases of straight-up baby selling that was disguised as surrogacy. (The Vice documentary on this was really excellent, from that super-brief period in the 2010s when Vice was making good output.)
A lot of the people who are most inclined to argue for opening a market also tend to be more skeptical of market regulations (or at least tend to not feel that market regulations aren’t a selling point for opening a particular market). But I think the arguments for opening these kinds of markets would be much more persuasive to the average person if they started off by saying that we know that abuses X, Y, and Z can occur in these scenarios, and these new markets would have rules A, B, and C to ensure those abuses don’t happen.
“ The main downside according to Dylan Matthews is that by going from two to one, you slightly increase your chance of ending up with zero. It’s a real, but not very large, risk.”
Just a reminder that if you donate a kidney and later need a kidney you’ll be put at the top of the transplant list.
My husband and I have children from a gestational surrogate (a "traditional" surrogate would be our sperm and her eggs, a "gestational" surrogate is implanted embryos) done here in the states.
The agency we used, like the Ukrainians, required that surrogates already have children of her own, and emphasized many of the things Matt mentioned for the Ukrainian program. I'd also mention one thing _we_ felt was that if there were some sort of awful complication of some sort that rendered her unable to bear children in the future, at least she had kids already.
We certainly liked this arrangement - and it wasn't her first surrogacy so she did too.
I would say the biggest difference between this and international surrogacy, especially with someone from a different language background is it's easier to stay in touch with her.
But in our case, we benefited _greatly_ from being able to pay a surrogate, and she obviously felt she benefited as well.
Hey I just donated my kidney last week! I can attest to the negative reaction towards the idea of creating a market for kidneys.
I’m not a libertarian by any means but a few days after surgery, I was having dinner with family and I suggested it would be a good idea for there to be a market to sell kidneys so that the supply of donors would grow.
My brother in law thought it was a terrible idea and brought up folks then being “forced” to do it out of economic reasons. They also asked what would happen to those that couldn’t afford to pay for a donor (which I thought was a fair point). I assume there would still be other altruistic donors or perhaps the government or an organization such as the national kidney foundation could subsidize those with less means.
My plan is that since kidney donation is such a positive good for the government, that we should allow kidney donors to enroll into Medicare and waive all premiums going forward. We could call it "Medicare for All Donors."
Pretty sure that Bernie and Ted Cruz would hate this plan equally
I generally agree with quite a bit of this, but two minor points:
1) I think you're avoiding the 'of course, if you make it a market, then you also make selling plasma or selling a kidney, or selling your uterus something that states will require before they provide you, say, disability, or other forms of welfare. Because, after all you can support yourself, so why shouldn't you have to do this?' problem.
2) On the kidney note specifically, I actually got fairly far down the road of voluntary kidney donation, before it was discovered that some relatives have polycystic kidney disease, which is genetic. I was perfectly happy to do some sort of test to see if I carry the markers, but the test isn't covered (at least for a voluntary donor) by either the program, or insurance and the estimated cost from the hospital was 5-10k (why I couldn't tell you). I was unwilling to pay that out of pocket for a chance to do a nice thing for a stranger, but, if you're over 40, then the procedure is just to do the ultrasound they have to do anyway and see if you've actually got cysts. So, I'm waiting until I'm 40, then I'll circle back...
Whole blood donors used to be compensated here but aren't anymore because of safety concerns. I'm a platelet donor, which takes four hours door-to-door, two plugged into a machine. A goddam miserable experience but better now than 40 years ago, when I first did it. In order to give, I have to answer a lot of nosy questions about my health & habits, and then the donation is tested for AIDS. There are never enough donors; I don't see why it wouldn't make sense to compensate folks to get supply up. At a minimum, I'd not feel so bad about not answering the phone when the Red Cross calls.
Another example of this is that the US is not allowed to pay Finland to store our nuclear waste in Onkalo. It may be a moot point because I think this is hideously unpopular in Finland, but it seems very silly to me. I asked one of my professors (the course was about the geological aspects of nuclear waste storage) about this and he very uncritically accepted the "oh but it might be coercive" line. This policy is especially silly for countries that really don't have enough nuclear waste to go through the whole process of constructing their own repositories (I think Slovakia is an example here). I don't know who has made this rule, or if it actually just a norm/practice but I think it should change.
Here’s why people hate this — I used to live near a plasma donation place in the US. They put up explicit ads marketing to the local university students about how if tuition and textbooks are too expensive, you should consider selling your plasma.
The place is called “B-Positive Plasma”. Dystopian name, dystopian ads. Imagine extending this to kidneys and that’s unbelievably dark.
I think rationally compensation for kidney donors is a sound idea. But people’s screaming intuition that it’s terrible isn’t pure irrational gross out — it comes from real problems in the US right now — you’d have to be real careful to deal with those.
"The other is that this is such a big deal that the issue would benefit from a more pragmatic, more moderate, less dogmatic approach on the part of those who favor markets and financial compensation. In other words, we should treat this the way we should treat any serious policy problem: try to actually fix it by developing politically appealing framings, messages, and policy ideas rather than just pounding the table and complaining about the stupidity of superstitious aversions to markets."
To go a bit off-topic, I would point out that a lot of YIMBYs ought to take this advice as well. I don't think Matt is a particularly bad offender, but he has a huge megaphone with YIMBY audiences and could persuade a lot of people to be more politically effective in a way that would pay real dividends. Local government has a lot of play in the joints and there's a ton more that YIMBYs could accomplish there if more of them would view the goal not as "enshrine a rational approach to property rights into municipal law" but a more pragmatic "increase housing sqft in your city wherever you can through whatever levers are available."
It is somewhat ironic that you produce this essay while Roe v Wade is on the precipice of dissolution. It can certainly be a comfort to childless couples who have sufficient resources to employ a surrogate. However, what struck me was the danger of baby trafficking. By which I mean, young women forced into surrogacy. This has the advantage of not exposing the traffickers to the trials of moving young females across international borders.
While, in principle, I'm in favor of establishing markets where possible, I'm distinctly cool towards marketing of some irreplaceable human tissues. I have a friend who nearly died providing a liver to a relative. The surgeries are definitely non-trivial. Although not currently available, I believe custom grown replacement organs would be a superior alternative.
I’m still annoyed we didn’t do human challenge experiments because I do think it might have moved vaccines and therapeutics along faster.
One thing that is under appreciated is that we would have to do some preliminary experiments to determine what dose is necessary and how to most effectively infect people (most people who get infected with this coronavirus don’t infect anyone else even a household member so just sticking people in a room with an infected person won’t work reliably), but the information from those experiments would also be very valuable.
I did notice that there was some concern that some of the volunteers might not fully understand what they were getting into. One way of dealing with that would be to do the initial challenge experiments on people working in biomedical research who would absolutely understand the risks.
As an aside, I would volunteer to be infected with sars-cov-2 way before I’d volunteer to be infected with norovirus.