What's wrong with Steve Jobs, revisited

It's no secret that, when it comes to computers, my preferred axe has been the Apple Macintosh. Indeed, back in the 1983-1984 school year I was in college living in a house with five other guys, and one of my roommates was a a total Apple geek. He had, as one might expect, an Apple IIe, and I immediately decided that, when it came to computers, I definitely liked the Apple product better than the IBM PC that my other roommate had. Of course, at the time I was nowhere well off enough to be able to afford either, but these two roommates were both computer science majors. They had to have a computer; and both somehow came up with the cash. (Back in those days PCs cost several thousand dollars.) In any case, my first experience with the Macintosh dated back to the original Macintosh, delivered to my Apple-loving roommate through a student discount plan in the early part of 1984. I immediately fell in love with the machine.

I realize that my younger readers will have a hard time believing this, but it's true and it wasn't at all uncommon in the 1980s. I didn't own a computer for about eight years after that, including through medical school and the first two years of graduate school. Instead, I had to rely on computer lab machines and, later, the machine's in my Ph.D. thesis advisor's laboratory, which, fortunately, was a Macintosh. The first computer I ever bought for myself was a Mac LC; I could barely scrape together the cash. Now that I'm incredibly fortunate enough (especially in this economy) to have a good income, I have a MacBook Pro and a Mac Pro at home; my wife has a MacBook; and I have multiple Macs in my lab, all relatively new, even though our IT department is about as Mac hostile as it can be without simply banning Macs and requiring Windows XP boxes. Fortunately, that is changing, thanks to my insistence and that of two other faculty who prefer Macs. Finally, Mac geek that I am, I even bought an iPhone 3 GS on the day it was released. (Yes, I like it. A lot.)

All of which is a revisitation (or, depending on your point of view, a regurgitation) of why I care about Apple and why what happens to Steve Jobs interests me. Last year, when Steve Jobs was looking gaunt and various reports were coming out about his health, full of dire speculation about what was wrong with him, I wrote a post about what I suspected to be going on. Basically, Jobs had had a neuroendocrine tumor of the pancreas, for which he had undergone a pancreaticoduodenectomy (colloquially known as the Whipple procedure) in 2004. As I pointed out at the time, Jobs had been incredibly lucky in that the mass discovered growing in the head of his pancreas turned out not to be a run-of-the-mill pancreatic cancer (adenocarcinoma of the pancreas), which has an absolutely dismal five year survival. (Patrick Swayze has metastatic adenocarcinoma of the pancreas and has thus far beaten the odds by surviving more than a year since his diagnosis.) Rather, it turned out to be a rare type of tumor known as a neuroendocrine tumor, which, in contrast to pancreatic cancer, is eminently curable with surgery. A year ago, I speculated that the reason for Steve Jobs' gaunt appearance was a complication from his Whipple operation, specifically the dumping syndrome. When earlier this year Steve Jobs took a leave of absence from Apple for a few monthsi due to an "endocrine disorder," I was, quite frankly, flummoxed. I couldn't reconcile the reports with my previous speculation.

If a story in the Wall Street Journal is correct, it would appear that I was pretty darned wrong. Indeed, if this story is correct, it would appear that Steve Jobs underwent a liver transplant:

Steve Jobs, who has been on medical leave from Apple Inc. since January to treat an undisclosed medical condition, received a liver transplant in Tennessee about two months ago. The chief executive has been recovering well and is expected to return to work on schedule later this month, though he may work part-time initially.

Mr. Jobs didn't respond to an email requesting comment. "Steve continues to look forward to returning at the end of June, and there's nothing further to say," said Apple spokeswoman Katie Cotton.

When he does return, Mr. Jobs may be encouraged by his physicians to initially "work part-time for a month or two," a person familiar with the thinking at Apple said. That may lead Tim Cook, Apple's chief operating officer, to take "a more encompassing role," this person said. The person added that Mr. Cook may be appointed to Apple's board in the not-too-distant future.

Apple has previously drawn criticism from some shareholders over what they have called limited disclosure of Mr. Jobs's health problems, which began in 2004. In this case, it is unclear whether the surgery is material because Mr. Jobs was already on leave. Material information like that must be disclosed only "if you are asking shareholders to make a decision based on [that] information," said John Olson, a senior partner at Gibson, Dunn & Crutcher in Washington. "You can't expect the company to give a blow-by-blow account of Steve Jobs's health."

Oh, well. I guess I'll have to take my lumps with the rest of them. I totally missed the boat last year, although at the time it certainly seemed like a reasonable guess that Jobs had malabsorption or dumping syndrome, both of which are not-so-infrequent complications of the Whipple procedure. Now, given that I have never actually seen or taken care of Jobs, some trepidation remains about just how much I should speculate based on this WSJ story, but I'll see what I can do. Interestingly, this information about Steve Jobs supposedly needing a liver transplant is not new. Back in January, in an article I totally missed, Bloomberg actually reported that Steve Jobs was looking for a liver transplant. Even back then, it was speculated that Jobs' neuroendocrine tumor, specifically an insulinoma (a tumor that secretes insulin) had metastasized to the liver, and, during an interview with Dr. Steven Brower, professor and chairman of surgery at Mercer University School of Medicine in Savannah, Georgia, it was speculated that Jobs was undergoing a liver transplant in order to treat these liver metastases. Then, in April, Barron's Online and peHUB discussed rumors that a swank house in Memphis had been purchased for Jobs, that he was planning to move to Memphis to treat his cancer, and that he would live in that house while being treated.

With that as a background, this is what the WSJ article reports:

In early January, Mr. Jobs said he had a hormone imbalance that was "relatively simple and straightforward" to treat. But about a week later, he announced that the issue was more complex than he had thought, and in a letter to employees he said he would be taking a leave and Mr. Cook would take over temporarily.

William Hawkins, a doctor specializing in pancreatic and gastrointestinal surgery at Washington University in St. Louis, Mo., said that the type of slow-growing pancreatic tumor Mr. Jobs had will commonly metastasize in another organ during a patient's lifetime, and that the organ is usually the liver. "All total, 75% of patients are going to have the disease spread over the course of their life," said Dr. Hawkins, who has not treated Mr. Jobs.

Getting a liver transplant to treat a metastasized neuroendocrine tumor is controversial because livers are scarce and the surgery's efficacy as a cure hasn't been proved, Dr. Hawkins added. He said that patients whose tumors have metastasized can live for as many as 10 years without any treatment so it is hard to determine how successful a transplant has been in curing the disease.

Before I start discussing the medicine and science behind whether neuroendocrine tumors of the pancreas that have metastasized to the liver can be successfully treated with liver transplant, let me first point out an aspect of this that disturbs me if this story is indeed true. Livers (and indeed, all other organs for transplant) are precious and scarce commodities. Steve Jobs lives in California, specifically the San Francisco bay area. So what was he doing getting a transplant at a Tennessee hospital? According to the WSJ, here's why:

The specifics of Mr. Jobs's surgery couldn't be established, but according to the United Network for Organ Sharing, which manages the transplant network in the U.S., there are no residency requirements for transplants. Having the procedure done in Tennessee makes sense because its list of patients waiting for transplants is shorter than in many other states. According to data provided by UNOS, in 2006, the median number of days from joining the liver waiting list to transplant was 306 nationally. In Tennessee, it was 48 days.

How many people are capable of getting themselves listed for transplant in a state nearly 2,000 miles away from their home? When a liver becomes available, there isn't much time to get to the hospital. That means a person seeking a transplant in another state either has to stay in that state for as long as it takes to get an organ or be within a distance to be able to fly there within a very short period of time. Moreover, organs eligibility and availability are determined by the United Network for Organ Sharing, which maintains the donor lists. When an donor is identified, regional and state organizations (in my home state, for example, Gift of Life, where one of my relatives works), obtain consent, arrange for organ harvest, and decide, based on fairly strict criteria published by UNOS regarding medical need and practical matters like how long it will take to get the organs out and to the hospitals where they are needed, which people on the waiting list for the state will receive each of the organs harvested. If this story is true, what Jobs did is not illegal, but it sure does leave an unpleasant stench of the rich and powerful taking advantage of regional differences in organ availability, perhaps at the expense of a lifelong Tennessee resident who needs a liver.

Worse, the indication is somewhat shaky. For one thing, as was pointed out in the article, neuroendocrine tumors are generally very slow growing and take a long time to metastasize. One of the more "common" subtypes of the rare neuroendocrine tumor in particular, a carcinoid of the appendix or the rectum, is particularly prone to metastasize to the liver and is notorious for causing carcinoid syndrome, which is due to serotonin secretion by these tumors and causes flushing, diarrhea and other unpleasant symptoms.

In any case, the indications for liver transplant for neuroendocrine tumors are a bit controversial, but a good summary can be found at the Mayo Clinic website, the NCI website, and the American Cancer Society website.

In general, for neuroendocrine tumors metastastic to the liver, the first options to be considered are ablative options. These can include surgery, if the tumors are resectable, or ablation by various methods, such as radiofrequency ablation (RFA, or, as we like to say, "cooking the tumors") or cryoablation (cryo, a.k.a. freezing the tumors). Surgery can be curative if the lesions are confined to a volume of liver that can be completely resected, and RFA is generally reserved when there are lesions in multiple lobes not amenable to surgical resection. For the consideration of a liver transplant, a patient must have multiple lesions in multiple lobes of the liver that are too numerous even to be cooked by RFA or frozen by cryo. Moreover, there can be no evidence of tumor anywhere other than in the liver. If there is evidence of tumor spread anywhere other than in the liver, then even liver transplant would not help. Given these indications, if Steve Jobs did undergo a liver transplant, it's safe to assume that he had multiple liver metastases that were not amenable either to resection or ablation.

In addition, another indication is that symptoms must be such that they can't be controlled by medical therapy. For an insulinoma, controlling the symptoms due to hypoglycemia can actually be quite difficult; so the type of tumor Jobs produced symptoms that are more difficult to palliate than the average neuroendocrine tumor. The NCI website lists these recommended methods:

  • Combination chemotherapy: doxorubicin plus streptozocin or fluorouracil plus streptozocin in patients when doxorubicin is contraindicated.[1,2]
  • Pharmacologic palliation: diazoxide 300 to 500 mg/day
  • Somatostatin analogue therapy (SMS 201-995).
  • atients with hepatic-dominant disease and substantial symptoms caused by tumor bulk or hormone-release syndromes may benefit from procedures that reduce hepatic arterial blood flow to metastases (hepatic arterial occlusion with embolization or with chemoembolization). Such treatment may also be combined with systemic chemotherapy in selected patients.

So what are the results of liver transplant for neuroendocrine tumors? Because these tumors are so uncommon, there's never going to be a randomized clinical trial. All that can be found in the literature is around less than 200 patients who have ever undergone liver transplant for neuroendocrine tumors. A recent series published out of Mount Sinai reviewed the literature and found five year survival rates for liver transplants for neuroendocrine tumors are all over the map, ranging from 33% to 80%. The series itself reported reported 36% five year survival. However, all of these were very small series, some only a handful of patients; so it's hard to generalize any conclusions from them. However, it's the best data available right now. The kindest and most generous characterization that can be made is that that the evidence for treating neuroendocrine tumors metastatic to the liver with liver transplantation is mixed at best. On the other hand, the symptoms from an insulinoma can be quite troubling, including the symptoms of hypoglycemia, plus weakness, confusion, personality changes, headache, and ataxia, and palliation is difficult, even if it does tend to grow very slowly. Moreover, in a patient with lots of liver metastases, liver transplantation is the only modality that holds out even a hope for cure. Still, it's arguable whether it should be done in these cases, given the scarcity of organs and the questionable results.

Some guidance came from a recent review of the management of neuroendocrine tumors concluded:

After considering published studies and data, some recommendations may be given, although these are based on a low level of evidence. After excluding extrahepatic tumour manifestations by imaging procedures and diagnostic laparoscopy, the indication should be chosen restrictively. Few prognostic markers, for example age below 50 years and absence of concurrent extensive surgery, were identified by multivariate analysis in a large retrospective analysis. The prognostic impact of primary tumour localisation is still controversial. However, further indicators of favourable long-term prognosis are needed. Tumour biology characterised by Ki67 and E-cadherin expression may help to identify patients with a favourable outcome so that patient selection can be improved, but this needs further evaluation in larger patient cohorts. Orthotopic liver transplantation for patients with remission of disease or stable disease under medical treatment, and orthotopic liver transplantation for palliative reasons, should be restricted to selected individual cases.

It's very, very hard to tell whether Jobs would fall into one of the groups likely to have a good outcome from just the news reports, given Jobs' secrecy with regard to his health. Certainly, Jobs is over 50 and had prior extensive surgery (a Whipple is about as extensive as it gets!), both of which, according to this review, are poor prognostic markers. If there's one thing that can be said, though, it's that, based on publicly available information, Jobs' medical condition was far worse than he had let on, and his prognosis is far more tenuous than is being advertised. Again, this is all assuming that the WSJ article is accurate. I don't know if Jobs will fall into the group with an 80% chance of five year survival or a 35% chance, but, as a longtime Apple aficionado, I'm worried. I wish nothing but the best for Jobs. After all, he has, more than anyone else, been responsible for the resurgence of Apple's fortunes over the last decade or so. However, I also hope that he has a succession plan in place. I really hope he doesn't need it, but the numbers suggest in the best case a modest chance and in the worst case a major chance that he will in the next five years.

That is, if the WSJ story is accurate. The story is, after all, remarkably free of named sources or anonymous sources, as John Gruber at Daring Fireball points out, although it might also be, as Gruber speculates, a timed leak on a Friday afternoon of the biggest Apple product launch of the year, one that sent its stock soaring.

Maybe Jobs did have a liver transplant, after all.

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Great post. A lot of info on pancreatic cancer I didn't know before. Hope Jobs does recover.
BB, another Mac-nut

the bioethics of moving temporarily to another state in order to get an organ sooner sounds like an interesting problem; i wonder if we could convince Dr. Stemwedel to weigh in?

on the one hand, Jobs lengthened the line in Tennessee, possibly forcing native Tennesseeans without his economic power wait longer for their liver transplants. on the other hand, he shortened the line in California by one person, and so helped equalize the regional disparities in wait times a little. i can see arguments on both sides, i guess.

By Nomen Nescio (not verified) on 22 Jun 2009 #permalink

I agree, to be fair to all would be to bring even more people from long-wait states to short-wait states. It's not right to tell people they should wait six times longer simply because of accident of birth.

I was the first person in my organic chemistry department to get a modern desk-top in the 1980s, and it was an IBM. When I moved to another university, they all had Macs, and I switched to that- it was annoying since I could type DOS commands faster than I could track-down icons and click on them. Then, a few years ago, I switched back to a Microsoft machine and found Windows to be a lousy substitute for Mac OS. In the long run, we become accustomed to the operating system and I cannot see any reason for preferring one or the other in terms of function.

There were reasons to prefer a Microsoft-based machine. First, Macs cost* more (I have not priced them recently), maybe people paid for it because the OS was easier for people who were not computer savvy (I learned Fortran in 1969). Second, when I got rid of my Mac (2003) there was not much software available for it (at least, locally).

*When I bought the Mac (1995) part of the cost was that it always came with an internal modem (which I never used). Then, to add injury to insult, my friend wanted to use hers OnLine and a "cable" to connect the modem cost $75 because it was more than just a conductor- it had electronics in it! That may that may be a reason to morally oppose Apple.

I agree, to be fair to all would be to bring even more people from long-wait states to short-wait states. It's not right to tell people they should wait six times longer simply because of accident of birth.

I'm not disagreeing with that. What leaves a bad taste in my mouth is that it is generally the rich or well-off who can afford to move temporarily to other states with shorter waiting lists for however many months or years it takes to get an organ.

Or the rich go to other countries: In Germany, an astoninglishly high number of rich arabs get "emergency transplants" in german university hospitals. A non-EC resident usually cannot get a transplant in Europe, according to Eurotransplant rules, but those with an emergency indication can.
There is also evidence that privately insured patients get more transplants than those 90% of Germans in the public health insurance.
And we did not mention illegal 3rd wold organ trafficing.
Alltogether a big shame for the physicians paricipating in these activities!

Is there any evidence that organ trafficking actually happens though? I have read in several different sources that it's highly unfeasible.

And, please, be organ donors. Wear your seatbelts and bicycle helmets and don't be stupid on ladders, but, just in case you die with nice, usable parts, make them available. Tell your family and friends of your wishes to be an organ donor. Sign the card/license, and carry it, but, even more important, make sure that the folks in charge of your remains know your wishes. Thanks.

(Parent of someone on the wait list for a kidney)

I just don't know what to think about this story. I believe the WSJ report couldn't confirm that a hospital in Tennessee actually did the surgery. Only three hospitals can perform liver transplants, Le Bonheur Children's, Vanderbilt and Methodist University Hospital. We can assume he didn't have it done at a pediatric center, Vanderbilt said they didn't treat Jobs, and Methodist said he wasn't a patient. I'm not sure how HIPAA regulations work here, so maybe Vanderbilt and Methodist were keeping information private, but the way they denied his being a patient was more declaratory than simply saying, "we can't say anything."

But let's assume he did have it done. Jobs' incredible wealth is obviously a factor here, one that allowed him to get it done. But, that's always going to be a "benefit" of being wealthy. You're going to be able to buy nicer cars, bigger houses (and apparently a house near the hospital of your choice), and better health care. Unless we completely socialize medicine (beyond the fake socialist strawman that the Republicans are whining about, I mean true "everyone gets the same healthcare"), some people will get better health care. There are physicians who have concierge practices who charge a set fee per year, and don't accept any third-party payments. I purchase supplemental insurance beyond my company's managed care policies just so I can go to Mayo if I so choose. Many others of moderate income do the same. And I'm moving from California ASAP, after reading these articles.

My ethical concern is that Jobs not only bought his way into a transplant (which doesn't bother me in the least), but he may have done it without good medical and scientific reasons. I'm hoping that the physicians and surgeons know more than we do (OK, let's just assume that they do), and they didn't give him a liver that was better suited for someone with a higher need. Then I'd be troubled ethically with this issue.

Finally, I don't want to cast about a conspiracy, but I wonder how much Al Gore (former Tennessee senator, VP of the US, winner of the 2000 election, and current Apple board member) had to do with this. Probably nothing, but I'm not a big believer in coincidence. This is pure speculation.

Little things that I appreciate:

"a neuroendocrine tumor, which, in contrast to pancreatic cancer, is eminently curable"

I think this is the first time in several years I have seen someone use this formulation of "eminently" correctly. More commonly, it's transposed with "immimently." Thanks you for not aggravating one of my pet peeves.

Also, I've learned my lesson about diagnosing through the media.

Cheers,

SF

Just to be a devil's advocate and throw some gasoline on an interesting discussion topic, let me outline a scenario and I'd like to hear some thoughts on it.

Let's say it's discovered that Obama has metastatic lung cancer and needs a lung transplant immediately. However, the only lung available in time is already set to be transplanted into a 34-year-old father of two construction worker. Without the lung one of them will die, but the construction worker is already prepped. What to do?

This is not meant to be a sarcastic question, either, because it cuts right to the heart of the disquiet over Jobs' actions. It's a very simplified version, obviously, but I'd like to hear from you guys.

@Damien. You do realize in English Common Law, lives are valued differently, depending on a lot of factors. Lawsuits are frequently valued at the potential future earnings and other data points of the plaintiffs.

However, I seriously doubt that someone that close to receiving the liver would be outranked by anyone, including POTUS. I don't think there is any ethical dilemma.

I think the main reason to have regional wait lists is because you need to be available in X hours to get the transplant done. One of the advantages of being truly rich is being able to afford having a medical transport stand-by at your nearest airport, and get to where ever your organ is,on time, and probably already prepped as far as possible, so it's not detrimental to put him on top of the list as far as getting an available transplant into a needy and suitable patient.

Joe:

I suspect you're talking about the Geoport modem -- I had one. Supposedly it wasn't especially good at its job, but it was actually a transceiver (sort of like an (A)AUI Ethernet transceiver) that was supposed to hook up to a specialized serial port called a Geoport. It was Apple's attempt to create a software modem; you could also buy an ISDN modem for it, but that wasn't that common as ISDN really never took off as a consumer technology. Apple actually stopped supporting it around MacOS 8.5, so anyone running old Apple gear is probably SOL if they're using the later Classic OS releases.

Oddly enough, the MacBook Air uses something rather similar that plugs into a USB port. I don't know any of the details, but I assume it's also a software modem.

Orac wrote: "I'm not disagreeing with that. What leaves a bad taste in my mouth is that it is generally the rich or well-off who can afford to move temporarily to other states with shorter waiting lists for however many months or years it takes to get an organ."

True. Then again, the ones you hear about are often celebrity alcoholics who've killed their liver and will almost certainly kill the new one. At least Jobs' condition is not self-inflicted and he's a bit of a health freak.

It's not such a stretch to consider that a non-wealthy person might have a relative who could take them in in a state such as Tennessee which has a shorter wait time. Is there still an ethical question if the person is not rich?

I have no way of knowing how required this surgery was. I understand the scarcity of organs. I understand that there is an interest in not making them be commodities to be bought. Nobody owns cadaver organs, they just exist. Probably the donor/donor family just hopes they can be used to give someone back his/her life. I think the altruism of this act should make the organ more available to somebody has the most medical need for it. Jobs' need for it is a greater issue than his ability to pay for whatever it took to make it happen in Tennessee. I find it hard to believe a transplant center would just say yes to the surgery based on want rather than need. This isn't elective plastic surgery or fertility treatment.

Off topic in the sense that it's not about Jobs' health issues.

I had some movie on in the background last night, and the main character was using a Powerbook Duo 210. Look at those specs! A grand total of 4MB of ram. I had one of those.

Anyways, aside from Jobs' medical treatments, he is truly one of the great business visionaries. Rarely have I observed one business leader moving a company so radically in just a short period of time. He's like the Patton of business (with a similar personality disorder). We used to listen to music on CD's with a rather large CD player. When I travelled in the early 90's, I had to carry 20 CD's, a slew of batteries, a disc player, huge headphones, and who knows what else to listen to music while traveling to Europe. Now, my freakin' iPhone holds 4000 songs, a couple of movies, and actually is a phone.

I hate to sound like an Apple Fanboy, and I am. Without a driving force like Apple and Steve Jobs, our laptops today may not have progressed much in design from that PowerBook Duo.

For no good reason other than what I've always worked on, I'm a PC.

Jobs is a visionary. While I'm no fan of Macs I own an iPod and I love it.

What good is money if you can't do everything you could possibly do to hold onto the most precious thing - your life? Thank goodness he didn't go to some ranch in New Mexico and embark upon a homopathic cure!

I wish him well. I think recovering from and living with a transplanted live is probably not a fun thing.

Natalie:

Is there any evidence that organ trafficking actually happens though? I have read in several different sources that it's highly unfeasible.

It does actually happen, albeit not quite the same way as the urban legends would have you believe. For whole organs, there are transplants from convicted criminals in China as well as organs taken from poor people who were paid for the process, and who did not always understand just what it was that they had agreed to. Dubious tissue donations are even more common, and have even happened in the US. (A ring of corrupt funeral home directors was recently busted; they'd been selling off bits of random cadavers, furnished with false papers to make them appear legit and suitable for transplant.) In India, there was a recent bust of a "blood farm" -- illegal immigrants had their papers taken away from them and were being forced to give blood. They were all severely anemic when discovered, since of course their "employers" were not being particularly careful about how much they took. Some were too weak to stand.

So while it's not the same as the urban legends (nobody's waking up in a bathtub full of ice to find a message on the bathroom mirror telling them to call 911), it does indeed happen. Mostly, it's people talking the poor into selling organs in countries where it is either legal to do so, or where there is little scrutiny of prospective donors.

By Calli Arcale (not verified) on 22 Jun 2009 #permalink

Hm. Why *is* the waiting list in TN so short?

Is it because they have fewer people needing organs, or do they have a relative surfeit of donors? (ie, lots of people riding motorcycles without helmets, etc).

I agree, to be fair to all would be to bring even more people from long-wait states to short-wait states. It's not right to tell people they should wait six times longer simply because of accident of birth.

We already tell people that they get hardly any medical care simply because of accident of birth - the accident of birth being not being born into an OECD country.

If you want to start minimising inequalities in healthcare, you should be supporting redistributing resources out of the USA altogether and to poor countries.

I had some movie on in the background last night, and the main character was using a Powerbook Duo 210. Look at those specs! A grand total of 4MB of ram. I had one of those.

PSHAW! I had a TRS-80 with 4 fucking K of ram. So there!

He's not a California resident getting a Tenessee liver. He moved to Tenessee. People have been moving places to try to improve their health for thousands of years. If livers could be shared equally between Tennessee and California, they would. They can't survive the flight. Yes, he moved back when he was done. So? Organ distribution is extremely fair.

If the patient already has metastatic disease in the liver )even in a slow growing tumor) wouldn't a transplant 1. not necessarily cure the disease (other possible metastatic foci too small to evaluate at this time) 2. Leave the patient open to recurrence due to the immuno-suppression needed to accept the liver transplant and 3. Leave the patient open to a whole new series of tumors that come along with chronic immuno-suppression?

Let's say it's discovered that Obama has metastatic

Ultimately, death is the only thing that ever makes the powerful and wealthy return to being socially equal with the rest of mankind. As long as there's a chance to put off the reaper a little longer, you can bet that - no matter the cost - they'll take it. I'm 'minded of Ghandi, who let his wife die of a treatable problem because he distrusted "English medicine" but got himself life-flighted to The Mayo... The egalitarian in me wants to say "no way" but the realist knows how it'll always go down, anyway.

If the patient already has metastatic disease in the liver )even in a slow growing tumor) wouldn't a transplant 1. not necessarily cure the disease (other possible metastatic foci too small to evaluate at this time) 2. Leave the patient open to recurrence due to the immuno-suppression needed to accept the liver transplant and 3. Leave the patient open to a whole new series of tumors that come along with chronic immuno-suppression?

That is the problem. However, in the case of hepatocellular cancer, for example, there is an indication for liver transplant.

"What leaves a bad taste in my mouth is that it is generally the rich or well-off who can afford to move temporarily to other states with shorter waiting lists for however many months or years it takes to get an organ."

I am certainly not well off, but if I needed an organ and someone told me that the wait would be shorter in Tennessee, well then, I would be doing the Tennessee Waltz all the way to the airport. The issue here is about what information people get when they are facing this situation. Is it common knowledge that the wait is shorter in Tennessee? I don't think so, but after the story in the WSJ, I think a lot of folks will be looking into these things when faced with such a situation.

Orac, don't worry about not catching the diagnosis--there are plenty of doctors that miss a diagnosis when the patient is sitting right in front of them...; - )

Do you think there is a possibility that the liver transplant was NOT due to metastases? Looking at some photos of him after the pancreatic surgery and then later with the weight loss, I was just wondering if there was a condition that could cause malabsorption or weight loss AND possibly liver failure? It has been speculated as well that Jobs was the consumer of herbal remedies--maybe he messed up his liver? Maybe he contracted hepatitis while in the hospital or another time? Just wondering if there might be other possibilities for why he had a liver transplant.

It's certainly possible that it wasn't liver metastases from his insulinoma and instead was liver failure for another reason. It's just not the most likely reason, given what we know and what was reported in the WSJ.

My father received a heart transplant in a neighboring state, of which he was decidedly not a resident. He wasn't rich and didn't do it to line-jump, but our own state's academic medical center couldn't admit him to CCCU when he first became seriously ill. After that, he couldn't be moved, and because of some specific aspects of his condition, our state's hospital didn't really have the expertise to keep him alive long enough to receive a transplant. I don't know to this day whether there was a difference in the two states' wait times, but it was a moot point. Had cross-state transplantation been forbidden, he would almost certainly have died; as it was, he lived another seven years, and saw his children graduate from high school.

How can you forbid the Steve Jobs of the world to use out-of-state hospitals, without also affecting people like my dad? What about people who live in the Memphis suburbs of Southaven (MS) or West Memphis (AR)? Should they be shipped two or three hours off to Jackson or Little Rock, purely because of their mailing addresses?

I might also add that organs cross state lines too. If you're killed in north Mississippi, your organs will go to Memphis, because time is critical and Jackson is far away. If you're from California and are killed while visiting in Tennessee, your organs will likewise go to Memphis. In fact, I suspect the number of cross-state donations is much higher than the number of billionaire line-jumping cross-state recipients.

One thing I have not seen addressed is the possibility that the liver donor is living and wanted to give Steve 1/2 of his / her liver. The timing of such an operation would be a bit more under control. Perhaps Memphis offers good doctors or a good program, and at least some distance from Silicon Valley.

By Cascadians (not verified) on 22 Jun 2009 #permalink

One thing I have not seen addressed is the possibility that the liver donor is living and wanted to give Steve 1/2 of his / her liver. The timing of such an operation would be a bit more under control. Perhaps Memphis offers good doctors or a good program, and at least some distance from Silicon Valley.

By Cascadians (not verified) on 22 Jun 2009 #permalink

I'm 'minded of Ghandi,

Firstly, it's Gandhi. Ghandi translates as closer to "dirty", which is hardly nice.

who let his wife die of a treatable problem because he distrusted "English medicine" but got himself life-flighted to The Mayo... The egalitarian in me wants to say "no way" but the realist knows how it'll always go down, anyway.

Kasturba Gandhi had 2 heart attacks in january 1944, never recovered and, by all accounts had something that sounds like CHF (she couldn't leave bed without shortness of breath after her heart attacks) and possibly overlayed with some sort of bad pneumonia. I say pneumonia only because she was offered q4hour penicillin injections (good treatment for that time) and by all accounts refused saying " No, my time is up". *
According to accounts taken at the time, Mohandas Gandhi just convinced his sons to agree with his wifes wishes. Nowhere does a "distrust of English medicine" become the dominant factor. Admittedly, he had some stupid (for today's standards) concerning ayurvedic medicine, but science and evidence based medicine was hardly in the state that it is today.
It's worth nothing that someone in her position today still wouldn't have had a great prognosis. In 1944, that was hardly a "curable" illness, and "treatable" in 1944 is stretching things at best.

But go ahead, accuracy be damned, spread a rumor and piss on the legacy of one of India's forefathers in the name of making a point on a blog. I'm sure the egaltarian in you feels better for it.

*"Daughter of Midnight:The Child Bridge of Gandhi" by Arun Gandhi

In 1989, my younger brother who was 30 at the time, and with a young family, required a liver transplant. It is still a mystery why his liver packed it in (they suspect some unknown hepatitis, and haul out stored blood whenever they identify a new type).

Although he lives in Victoria, Australia, he and his wife went to Brisbane to await a donor, because the hospital there was the premier liver transplant site. There was an aeroplane strike at the time, so he was flown up in an airforce plane. They stayed in a small apartment right near the hospital, and awaited surgery. An unfortunate young girl lost her life in a car accident in Adelaide, and my brother had his life-saving surgery. He is still alive, and has seen his kids grow up.

This family was not rich by any stretch of the imagination, and didn't pull any strings to jump queues, etc. We are all forever grateful that there was total co-operation between the three involved states.

Although living donor partial liver transplants are pretty rare, it is always possible that Jobs didn't cut the line, but made an arrangement with a consenting individual (big Apple investor?). It may be possible that a dying person's liver had been legally and voluntarily earmarked for him, but I'm not sure how generally feasible this is. But people are entitled to name specify the recipients of their own organs.

Neuroendocrine tumours are "eminently curable with surgery"? Only if they're diagnosed early (extremely unusual), have no metastatic spread (you're very lucky) and haven't impacted the SMA or other major blood vessels (typical issues for NETs in the pancreas).
Metastases to the liver aren't unusual.

True, but that's how Jobs' tumor was portrayed in the press the first time around: localized and small. Also, insulinomas do tend to be diagnosed earlier because they secrete insulin, which can cause symptoms due to hypoglycemia early.. Of course, one has to wonder whether his 9 month flirtation with woo before finally agreeing to surgery delayed his treatment enough to hurt his prognosis. That's a question whose answer we'll probably never know.

"How many people are capable of getting themselves listed for transplant in a state nearly 2,000 miles away from their home?"

How many people are Steve Jobs? You wouldn't even be writing this if it weren't for the fact that he's unique. You write a post that begins with breathless praise of the products this man has created, and then you QUESTION the fact that a unique individual is treated better than other people?

Of course he's getting special treatment. HE'S SPECIAL.

I'm not being sarcastic. I'm being perfectly serious. What is wrong with you?

By jsilverheels (not verified) on 27 Jun 2009 #permalink

Nothnig laying down a little not-so-Respectful Insolent hurt on a sarcastic commenter wouldn't cure, I'm sure.

If the FDA would let the Glycorex AB0 to be sold in US there will be no problems with maching donors, that would help a greate number off people. Incompatible organs transplattations have been done i Europe for years with this method, even Canada.