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Patient dies weeks after kidney transplant from genetically modified pig (nytimes.com)
67 points by lxm on May 12, 2024 | hide | past | favorite | 59 comments


First of all.. RIP Pioneer. Thank you for your service to humanity.

> The hospital said it had “no indication that it was the result of his recent transplant.”

A major issue, at least in Canada, is that the system will let you get too sick to recover before helping you. There are times when a healthy person enters the queue, and doesn't get fast-tracked / called upon until their health begins to fail severely.


The cases in Canada are mind bogglingly frustrating, such as a woman ending up with an amputation after getting extreme bed sores while in care. If you think rugular movement and care from nurses to prevent that was too expensive, how does that compare to a whole operation and following recovery? Talk about penny wise and pound foolish.


Its not just Canada. Healthcare in small town USA is godawful. Just had a friend die after months and mobths if doctirs visits where ghey just kicked the can down the road. Then ended up in the hospital. Then multi organ failure. Then, finally, a correct diagnoses. A treatable fungal infection. Died shortly after the diagnosis.

Happens every day.


It is the same thing in Australia. If you live in a major city, or not too far away from one (say an hour or two), you'll probably be fine. If you live 8 hours from the nearest major city, greatly increased odds you will die from easily preventable things because nobody gets around to running basic diagnostic tests until way too late – because there aren't enough medical and nursing staff to manage the patient workload, because specialists aren't available and so less obvious things get missed, etc. There is also a huge culture of cover-up (middle and senior managers try to hide mistakes to avoid lawsuits and to try not to embarrass the politicians in charge of the public health system)


Yes also every single layer of healthcare is gatekept in order to extract an additional copay before the next stage of treatment.


Not in Australia or Canada


>coverup

Yeah, I'm in the burbs and My neighbor's wife died like this. They gave her something obviously wrong, (some thick orange drink iirc?) and when they questioned it the tech insisted it was necessary for a diagnostic of some sort. According to my neighbor, she went very south about 2-3 minutes after consuming it and was dead in a couple hours. He is unable to get any documentation from the hospital about what the substance was, who ordered it, etc.

This was 2ish years ago.


The hospital is absolutely required to provide that information and if they cannot in a timely manner (like 2 months iirc? Been a while since I worked for an EHR) they are subject to very hefty fines and basically paint a big red malpractice lawsuit target on their head. Hope your neighbor went after them.


I think he started to but it wasn't going well. I haven't caught up with him about it.



This is an extremely general problem which I think comes down to temporal biases in the human mind and a kind of survivorship bias.


Huh? What do you mean by that.

The problem is poor healthcare...


> The problem is poor healthcare

Yes.

But most healthcare is terrific and supplied by dedicated professionals working in systems and institutions of variable quality.

But the bad outcomes are what we notice.

If it bleeds it leads


So he also had congestive heart failure from the previous kidney failure. Also other articles state "type 2 diabetes and hypertension". Dialysis was becoming a burden.

He was very brave. A decision like this is immense.


Yeah, early trials of something like this will be offered to someone who likely wouldn't benefit all that much from a real human kidney either, so as not to waste it.


> The hospital said it had “no indication” his death was related to the transplant.

Additionally, the transplant happened in March, which is “weeks ago” but not 2 weeks ago, which is the timeframe I initially assumed from the headline.


Also, I'm guessing it's not actually the hospital's job to post the more detailed info which may be important related to learning from the transplant. I'm way out of my element here, but wouldn't the hospital just be the location and any important info sharing would be handled by someone else?


Technically anything (>14 days) could be considered "weeks ago"

I was born more than 2000 weeks ago.

That bit of the headline is just pointless.


Commonly, you would say weeks when months wouldn't apply, otherwise it would be misleading if not plain wrong. Usually. (such rules aren't set in stone, allowing humor to exist for instance ("I had a child" "Aw! A boy or a girl?" "Yes"); context matters)

Mathematically true isn't sufficient (and possibly sometimes not even relevant), "weeks ago" bears more meaning in common language than "there exists N such that N > 2 and N weeks passed".

So you were born that many weeks ago, but not really weeks ago.

What matters is how things are understood and it's not usually the interpretation of a formal version of the text (or it is, but a complex one that depends on the mood, the culture and the knowledge of the recipient, their understanding of the author, possibly on other factors as well, that most likely doesn't quite match a naive formal translation)


“Patient given modified pig kidney dies two months later” would be more apt.

Very editorialized title.


“Patient dies of congestive heart failure, not due to pig kidney transplant” Also would be more apt.


That would be misleading too in the other direction, we don’t know if it played a role.

“Patient given modified pig kidney dies two months later, cause not confirmed to be kidney” or something along those lines would be the best headline.


Both your headline and OPs would not have met the first requirement for a headline, which is to draw the reader in so they have to read the article to get the whole picture.

Sadly, the article's headline does just that.


Their headline(s) made it seem like there may be some form of investigation going on in the article which makes me want to read the article. The SEO/click bait headline pushed me away. I get that I'm just me but there must be several if not tens of people like me.


"Patient sick enough to need a kidney transplant, dies"


I am reminded of Barney Clark, the recipient of the Jarvik-7 – he lived for 112 days, but brushed up against the limits of his transplanted mechanical heart as time went on and on.


I worked for Dr. Robert Jarvik for my first job out of engineering school. It was an amazing kickoff point for a long career of designing and building medical devices and implants. It's taken me all over the world and I've designed devices for every part of the body.

Dr. Jarvik is quite the character.



Rest well, Rick. Thank you for your contribution to a historic first in medical treatments


> The hospital said it had “no indication” his death was related to the transplant.

I think the transplant team likely did have tons of evidence showing the kidney was fine - monitoring things heavily is just normal procedure after any transplant, even more so after this kind of transplant. He would have had daily or weekly labs showing Creatinine/eGFR, ultrasounds, blood tests, urine tests, regular appointments talking about symptoms and lots more.

Its possible that the pig kidney caused the death in some way that isn't clearly understood yet though. Maybe some proteins in the kidney went into the bloodstream and affected another organ, maybe they exacerbate congested blood vessels somehow etc. Maybe an autopsy will reveal more.

But yeah if you read the history of transplants or any risky new medical procedure, they are very fragile and can be set back decades or stopped when they go bad or mistakes are made. There are incentives for people to cover up the reason's things failed and history of hospitals lying out of their teeth to cover their asses (see Charles Cullen in The Good Nurse).

I guess I'm saying there is plenty of evidence on both sides of the answer to the question of "why did he die".. either way he did something heroic.


> The pig kidney was provided by eGenesis of Cambridge, Mass., from a pig donor that was genetically-edited using CRISPR-Cas9 technology to remove harmful pig genes and add certain human genes to improve its compatibility with humans. Additionally, scientists inactivated porcine endogenous retroviruses in the pig donor to eliminate any risk of infection in humans.

"donor" seems a little rich.

I dislike what precedent this sets in human's "use" of animals.


Well, the alternative is a dead human, so you might want to think about that. You will probably never need one, so you can think about it without fear.

As a potentially dead human, I’m ok with them using animals bred to be donors for this.

I’m a Stage IV Kidney Disease patient.


But the term "donor" means that it was donated, right?

I don't think it should be used in this context either, it should be called something like "organ provider" which gets "harvested".


In this context, it means "the one who gives". While the general impression is that such giving is voluntary, it's not an absolute requirement of the definition.

This is a normal usage of language and not some attempt to wiggle around meaning. If this somehow makes you uncomfortable, you should remember that, if you eat meat, or otherwise consume any sort of animal product, or if you have ever done so, then aforementioned animal was straight up killed, humanely or sometimes inhumanely, to make that product.

We domesticate animals to make our lives easier through the usage of their byproducts and this is just one of those usages. Yes, an animal died, but it wasn't killed without reason or justification.

We don't live in a Star Trek world where one can wave some sort of device and the person is magically healed. People are working to get there and maybe someday they will succeed, but until then, imperfect means are all we have.

It's either that or dead humans. Which do you prefer?


I'm very confused here, I'm neither having an issue with taking organs from animals nor with killing them for food.

I do, technically, have an issue with our modern meat production, which ia a straight up horror show - for the animals and for the people growing them, but that's entirely unrelated to this case here.

As far as my knowledge of the word "donation" goes, it means that someone voluntarily gave something to another, and the person giving is the donor.

I'm not an authority for the English language, so maybe donation can also apply to a scenario in which something is taken with no active consent. In that case the term would also apply to theft though, that makes me kinda doubt that...?

But I guess we can go with that.


The TLDR explanation is that words have a denotative meaning, what the word actually means, and a connotative meaning, whis are the ideas and concepts that surround the word. Even though the word usage may seem like a lie, most people understand what is meant.

https://www.dictionary.com/e/denotation-vs-connotation/#


I read through it from top to bottom but still feel that this usage of donor is severely stretching it. All the examples there make sense to me, and none of them go against the core definition of the world their using to explain the concept.

As far as I know, the term donor is defined to mean that the entity voluntarily gave something. Using it in a context without the entity being willing still seems to be invalid to me, but as I said: I'm by no means an authority on the English language


> or if you have ever done so

Do you not think that most people who have stopped using animal products have not already come to the conclusion that what they did was (direct or indirect) killing and they deemed it as immoral? Using this argument in an animal ethics debate is ineffective at best.


The term wasn't new, pulled out of thin air.

The term was previously used when describing human donors. They just kept using it because it's as good a euphemism as any.


At least where I live no organs can be taken unless the patient has a donor card/explicitly allows this. This makes it into a donation, not a forceful taking, which is why they're called donors.

I don't think animals can opt-in to such a system, as such I'd consider it an incorrect usage of the term.


Yes but animals don't speak or care about English, so the term couldn't bother them, it's just you.


That's the same as slurring at someone in a language they don't know. They don't understand what you meant so it doesn't matter right?

The point is not the animal's comprehension of the term but the implication that the animal gave consent to have their organs harvested by saying "donor". If you argue that the pig cannot understand English so can't be offended the same applies that they can't understand English so cannot give affirmative consent.


These animals also probably live pretty decent lives, since they need to keep the organs in good shape…


This is the same argument used for meat production and is questionable. Would you really care that your murderer treated you well before killing you? Or would you feel even more betrayed?

This pig would have lived a very short and probably isolated life (to isolate from pathogens). No matter how well it was treated in life it was still forcibly operated on and/or killed at the end.


We have genetically engineered plants and animals to our liking for thousands of years. Take my poodle for example.


I think we can agree genetically modifying plants is pretty different to genetically modifying animals to harvest their organs.

I'd also contend pet breeding is a wildly misguided practice too. Attempting to maintain breed "purity" is at the very least detrimental to their health, but even a pug mutt is clearly not an animal that should exist.


I agree with your science, but tell a pug owner that.


Yeah, fair point.


> The hospital said it had “no indication that it was the result of his recent transplant.”

Sorry, the burden of proof goes backwards. When you are doing something this novel and the patient dies so soon afterwards, the null hypothesis is that it had something to do with the transplant and you have to show evidence that it was not due to the transplant.


If alternative treatment with decent prognosis exists (in this case Hemodialysis is such an option), to get past the ethics committee, first operations like these typically have to be done on patients on their death bed. That doesn’t make it likely the patients survive a long time.

For example, here’s what Wikipedia says this of the first receiver of a heart transplant (https://en.wikipedia.org/wiki/Louis_Washkansky):

“As a result of heart attacks in 1965, approximately only one third of his heart was still functioning. In late October, he went into a diabetic coma, but regained consciousness. Once, when he was swollen with fluid and in considerable pain, his wife Ann asked him in a whisper how he was doing. He managed a smile and whispered, "I'm on top of the world." He was also suffering from kidney and liver failure.”

And that’s a case where no good alternative treatment existed, at a time when ethics committees weren’t as stringent as they are today, if they existed at all.


While article doesn't say the cause of death, the patient did suffer from congestive heart failure, as a prior condition. Further congestive heart failure can cause all sorts of complications, meaning that the patient was pretty sick at baseline. According to the article, patient had an earlier human kidney transplant in 2018 that failed in 2023 leading to the congestive heart failure, and thus made patient a candidate for the xeno-kidney transplant. Patient was a pioneer- rest in peace.


On the other hand, you have to be pretty sick to qualify for such extremely experimental procedures. And transplants are pretty intensive operations even when someone is otherwise healthy (and getting human organs). It doesn't seem farfetched for unrelated complications to indeed be the cause of death.


It is entirely possible that the hospital knows what happened and why the person died, and are just not sharing it (maybe to respect the family's privacy, for example).

Having said that, I do think you're right, the cause of death should absolutely be shared, otherwise it looks quite dodgy. If he was indeed discharged with "one of the cleanest bills of health I’ve had in a long time", then how could he die so shortly after, and why would there not be more discussion around the specifics?


It’s grim, but he had renal failure requiring an operation in 2018 and then back into renal failure causing congestive heart failure in 2023.

It’s very possible for him to have the cleanest bill of health he’s had in 6 months or a couple of years, while still dying.

I suspect that unwinding whether his death is related to the transplant or not is non-trivial. He had a few issues that would likely kill him soon. Figuring out which one did, and whether it was caused by the transplant, may be difficult.


No. When a very ill patient with several terminal comorbidities dies, the null hypothesis is that he died from one of those conditions. Your prior is to be skeptical of new medical interventions, and that's fine, but it is your responsibility to distinguish between your biases and the most likely a priori cause.


Someone who has end stage kidney disease practically by definition has a shitload of other problems--any of which can kill the patient.

This is similar to AIDS. AIDS almost never kills directly. Some other disease like cancer or pneumonia does the actual killing.


The patient had a host of other conditions that put their mortality risk already extraordinarily high, which is likely why this experiment treatment got approved in the first place. Kidney function might now be fine but it could have just have easily been one of the other comorbidities that did them in. I am sure they are doing more research on this.


This is why there are concepts like relative survival. Maybe new procedures are evaluated using similar methods?

https://en.m.wikipedia.org/wiki/Relative_survival


Not when the intervention is done on someone already about to die.




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