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I Need Steve Jobs' Liver
Paul Sakuma / AP Photo
Steve Jobs opened Wednesday's Apple event by acknowledging the generosity of the organ donor who gave him the new liver that saved his life. But Linda Alcorace has been waiting for a new liver for seven years, so why did the billionaire CEO get one first?
Did Steve Jobs receive a liver transplant because he’s rich? He certainly had money enough to travel from his home state of California and pay all the expenses to live and be listed at a Tennessee transplant center. As of June 19, nearly a quarter of the 16,412 nationally listed end-stage liver patients reside in California, while Tennessee lists only 229 on its waitlist. If he’d waited at his home in California, where I live and wait, he may well have died.
Maybe Mr. Jobs will use some of his $5 billion and estimable genius to help remake a system that’s not working.
Every American patient in need of an organ transplant quickly learns the unpleasant truth that medicine is not philanthropy, because one thing has time and again proven certain: No matter your diagnosis, if you have the financial means, there’s usually a way, or, at very least, a greater chance at survival.
I am a ward of Medicare and Medicaid, and need the help of a Los Angeles County Section 8 voucher to pay my rent. I live on $22,000 annually. How would I pay for transportation and lodging out of state? Who would help care for me after my transplant? I am certain the 16,412 patients listed on the national waitlist would appreciate having the means to move to states where livers are more readily available, like Jobs did. Who advocates for people too sick, uniformed or impoverished to help themselves before it’s too late? Aren’t our lives important?
I am listed at UCLA, one of the largest transplant centers in the world, and I’ve been waiting nearly seven years. If I’d been transplanted in 2002, my prognosis would have been excellent. Now, the venous system routing blood around the scarred parts of my liver is more complex, more liable to rupture. A transplant, if and when I receive one, will be more dangerous. If I were a celebrity or sports figure or even the child of a prominent physician, funds likely would be available.
For those of us without wealth and prestige, “You need a liver transplant” are words you do not want to hear. But those are exactly the words doctors used after my diagnosis of Budd-Chiari Syndrome, a blood-clotting disease so rare that my hepatologist, Sammy Saab, ranks its incidence at between one in five-to-seven million. One day I was at the gym for two hours, the next I lay in bed shivering under my blanket in 80-degree heat. On the third day, my head and belly hurting with an intensity that robbed me of language, I went to a local emergency room to learn that, at age 42, I was dying.
My belly, legs, and back swelled with fluid, and I gained 65 pounds in two weeks eating nothing and needing anti-emetics to keep medications down. Chained to the oxygen delivery system in my room, I inhaled shallow breaths, my athlete’s lungs competing against the weight of a 50-inch belly, giant spleen, and engorged liver. Orderlies wheeled my bed wherever I needed to go: into elevators, down freezing corridors and into exam rooms where monolithic machinery waited for the insertion of my ailing body. Sliced open from breast to hip, the constant grind of bed sores, needles, midnight awakenings and oozing surgical staples left no time for despair. It’s hard to imagine Steve Jobs, CEO of Apple, suffering as much as I did, but images of him broadcast in 2008 clearly showed a man who was dying: emaciated, gray-rather-than-pink skinned, all cheekbones and eyes. I cannot begrudge his receiving a transplant. No one “deserves” a liver.
July will mark the anniversary of my illness. With a drug regimen, careful monitoring, and scrupulous attention to the signals my body sends, I have survived. How lucky I’d feel to be back to a life without debilitating fatigue, constant pallor, racing heart rate and dizziness. Perhaps, if I were rich, I’d move to Tennessee, Indiana, or Florida, where wait times for liver transplants are among the lowest in the country. Perhaps post-transplant, I could work full-time again, afford that dream apartment closer to the ocean. I remind myself daily how fortunate I am to receive medical care at a world-renowned center. I give thanks for doctors who do their best to ensure my stability. I’m one of the lucky ones, and, many days, I do feel lucky. I can live on my own and work three hours a week as an adjunct professor. It’s not the life I remember, but it is a life. If I’d had the transplant seven years ago, how different my life might be now: full-time work, scuba diving, solo travel, carefree and unworried about the constant threat of dying.
Americans must be encouraged, perhaps even required, to donate organs, as they are in Spain. President Obama must consider transplant inequities as he hammers out his health-care plan. And just maybe, Mr. Jobs will use some of his $5 billion and estimable genius to help remake a system that’s not working.
Linda Alcorace is a writer and adjunct professor of English at Santa Monica College. Her work has also appeared in The Los Angeles Times and The Copley Press.
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Paul Schrodt is a writer living in New York City. He has contributed to New York magazine, Radar, and Esquire.com.
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anmpir
Linda, being a Canadian I cannot say I share your situation, but I can truly say I really feel for you because as I read your words what they seem to be telling, practically screaming at, me is the correllation to my own mother. As I slowly watch her age, gracefully or not, it pains me deeply that my family, nor I, is not in a financial situation that will allow her to die comfortably in her old age (past anything the Canadian Medical system - Bless it for existing --will allow).
I strongly believe that the dichotomy we civilized nations have organically built up which deems the people who have ammassed more wealth than the average should be treated in a elite, more liquid, less rigid queue. Everone, I mean everyone, deserves world class treatment. Advanced Medicine and treatments is not a shiny crown that only the privelaged should be able to possess while the plebs are simply 'prolonged' cheaply. It should, and hopefully will be something we as a species realize and mend.
Forgive my digressions. Wonderful article, may you receive what you so desperately need.
democracyforall
Steve found a hospital that had lots of successful transplants. He put his name on their list and they take patients by a most needy status. Praying for a full and speedy recovery for you Steve...
RonKPTX701
Steve,I agree with you that transplant centers should take liver candiates based on how ill they are not based completely on the MELD score. I have had friends die while waiting for a liver transplant when their MELD score was only 14. One of the exception to the MELD score system, is if the patient has liver cancer that, in the case of UCLA I understand taht the cancer is no larger than 4 cemtermnters and has not spread to other organs.The main question should be just how large had the turmor grown when the decision was made by Methodist Hosptial to give Steve Jobs his liver. The OPO's (Organ Purcurement Organizations around the county), UNOS and Methodist Hospital addressed all facets of the transplant but just refused to discuss the liver issue other than it was the hospitals decision. This may or may not have been a waste of an excellent liver. Lets watch and see if Methodist Hosptial gets a mulit-million donation in the near futrure from Mr. Jobs. Organs should be allocated on need not on if the candidate is rich or poor. Thank you Linda for your excellent tarticle.
jomama
We need to get past our disdain for 'the rich' in general and stop acting like peasants from 1701. Steve Jobs has created $100 in value for consumers (like you) for every $1 in his bank. So forget about 'his richess' he's done a lot for progress in some areas and has moved the world along. And aside from many bankers who I think grab value and don't create it - anyone who is self-made wealthy has done so because they have contributed to the welfare of the community in vastly disproportionate ways than others. They've sacrificed their whole lives for not a whole lot - frankly, I've seen Job's house, it ain't that big a deal, and it's not like he has a brothel or private airport.
Yes, many people inherit there wealt - and yes, we need to consider health as something beyond 'supply and demand' and pure capitalism - but wealth must and will play a part.
ldcreo
Well said. I totally agree.
Tucson138
With his own hands, steve jobs has "created" nothing.
Federalist
Jobs is the best product marketeer in the history of technology. You're right, he's not an engineer and therefore doesn't build any of Apple products. What he does is something much more difficult. He anticipates a market need, envisions a product and enables those who can build it the resources they need to do so.
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n--Y--toodogsFNYGY1
Where do you get your calculation for creating $100 in value for every $1 in the bank? I have nothing against Steve Jobs, I'm just curious about your math as it seems to be pulled out of thin air.
CeesBn
http://www.wolframalpha.com/ and feed The Beast with 'IBM Apple' then look at how Steven made its shareholders and others 10x more than IBM ;)
bgeasyas123
Well said jomama! I'm glad the author doesn't go after Jobs, but I don't get her point. This is a capitalist system, you don't have money, you don't get treatment. I for one don't really like it, I think everyone deserves healthcare and no life is worth more than another, but she should be appealing to the masses to become organ donors (like myself), not pointing out that those with the resources use them and how it may not seem fair.
JoshAus
The problem is that organ donation and transplants are not like other services and goods in society. They primarily rely upon donations by people for the common good (people who are mostly not rich). If people start believing or worse it is demonstrated that rich people get preferential treatment then a lot of that belief in the common good dries up then people (especially poorer people) will not participate as donors.
In most areas of commerce, preferential service at a cost to the rich is fine. In the receipt of organ donations it is not.
steve-annie
Rubbish
Dreamer4Ever
You just made the argument that only those with "value" DESERVE TO LIVE.
You're all heart, you are.
undeadwarrior
you wouldn't be saying this if it were rush limbaugh instead of steve jobs so let's get real here. if someone cuts in front of you at the supermarket, you're not going to ask him what he's created and how much he makes. you're going to tell him to get to the back of the line.
seoulsmatt
"I cannot begrudge his receiving a transplant. No one "deserves" a liver."
Then what is the rest of the article about?
You can't move to Tennessee? Who says? Isn't it easier to live on $22,000 a year in Tennessee?
arjun4004
whats the point of excelling in your field and being very successful if you are always going to be on a level playing field as the rest of the world? i'm sure you feel its unfair, but you just have to accept the fact that although money cannot buy everything and solve every problem, it sure makes things a lot easier. more often than not - mr. jobs' liver transplant being a case in point. as long as how he managed to get the liver sooner was not illegal your entire case hinges on self pity and betrays a general disdain for the people who have earned (or inherited) "wealth and prestige".
boredwell
Larry Hagman got two livers. The second alleged to be after he ruined the first with more alcohol.
Wednes
FALSE. He had one transplant, and a second surgery later because that liver developed a cancerous cyst.
evanrm
"Aren't our lives important?"
No, no they aren't.
Tucson138
Welcome to capitalism deary, the place where the well connected and overcompensated will always be well connected and overcompensated, while the rest of us wonder why the rest of us are so happy about that.
Federalist
Read:" Those who used the resources and faculties available to them to create something or worth." In other words "earned."
You my friend have forgotten or never learned about the different between "earning" a living and the theory you are "entitled" to a wage. Please visit a communist nation for a method to contrast the two.
Tucson138
And you, my dear dreamer, have forgotten that we NEED people to work as circle K clerks, we NEED garbage men, we NEED lower income workers and we can't ALL be CEOS, but periodically we ALL NEED health care and society begins to break down if some people, regardless of their monetary income don't get the health care they NEED. Go join a pack of wild dogs, since you seem to share the same ethics and compassion for those dealt a shitty hand in life.
Matt572
So we need circle k clerks and garbage men... what's your point? If you're a clerk and like it, fine. But you'll have to deal with your income. If you're not ok with that, get some ambition, save some money, (not much needed if you work at finding financial aid) get your GED, go to community college and become a manager. then work your way through a 4 year school and keep moving up. And if you're not happy with your pay and status but don't wanna play the game, shut up and move somewhere you don't have to.
NtnyLion
My feeling is: if you need a transplant and CAN get it, you SHOULD. Is Ms. Alcorace telling us she wouldn't get a liver transplant today if she could so legally?
No need to be jealous of Steve Jobs's success.
sherrie-b
agreed.
JoshAus
I guarantee you that if the rich, the powerful and the famous had to stand in line for organ transplants or receive the same medical care as everyone else, then the entire US medical system would be fixed in less than 6 months.
anmpir
Or they become European.
connie47
Interesting idea and probably true.
bgeasyas123
Explain to me how you can "fix" a waiting list
JoshAus
Legislate to make organ donation mandatory. I'm not advocating that by the way, I'm just saying that if rich and powerful people had to wait like everyone else, they'd ensure the politicians whose campaigns they finance, made donating your organs a civic duty.
spotted
Use your private plane to fly to different transplant sites across the country to register there.
Some people are more equal than others.
Rocket88
Short of a complete renunciation of capitalism -- not likely anytime soon -- the rich will always have a better material existence. They will eat better food, live in nicer houses, get better health care. Is it "fair"? What's "fair"? It's the way things are, and there are no viable alternatives. (Remember communism? Substitute "rich" for "politically connected" and you have the same results.) I feel bad for the author and wish her nothing but the best... but compelling people to donate organs against their will is not really an acceptable way of counteracting the "imbalances" of capitalism. What comes after that, compelling people to live in smaller houses if they don't have children?
pulmanomancer
It would violate no-one's rights to change our organ donation system to opt-out rather than opt-in. Once you're dead, it matters very little to most people what happens to your organs. There is a completely separate staff that handles transplants (not the same folks who handle regular medical care) and so there is no conflict of interest created in the doctors who treat you, either.
Opt-out transplantation (possibly with mild incentives - like burial costs or something) would save an awful lot of lives, with no meaningful loss of rights for the rest of us.
NtnyLion
I agree with your point. I think the opt-out system would be a massive improvement. Dan Ariely makes this case compellingly in Predictably Irrational.
http://www.amazon.com/Predictably-Irrational-Revised-Expanded-Decisions/ dp/0061854549/ref=sr_1_1?ie=UTF8&s=books&qid=1246017712&sr=8-1
JoshAus
I don't think it even needs to be opt-out. Simply enact a law that says no one over the age of say 23 is entitled to an organ donation unless they have been a registered donor for at least the previous 5 years. Those under 23 are only entitled to one if they've been registered since they were 18. No exceptions.
mike22
JoshAus, that is a really good idea.... priority transplants for those willing to donate. Never thought of that.
As for the article above, even if Jobs waited in line, I would suspect that he may have, by dint of wealth, been able to have multiple residences and wait in multiple lines. You know he gamed the system, one way or another, and I'm shocked by the responses of people here to that possibility. I don't want to believe that these people are representative of public opinion, and I kinda doubt that they are. Access to life saving treatment should be wealth blind, and strictly need based. If there is to be preferential access it should be on the basis of demonstrated willingness to make a contribution to others, such as JoshAus suggests.
Johnnyappleseed
Being on the organ donor list, I personally don't care who gets what organ(rich or poor) if it will sustain someone else for their journey here on this planet.
More people have to be enrolled on the donor's list, look at the numbers 16,000 waiting for a liver, 40,000 dieing from auto accidents alone, but unless they have a donor card, their recoverable part(sounds goolish) won't go to further anyones life.
cbt650
other than checking tho box on your driver license are there any other steps that need to be taken to be enrolled on the donor list? i am a young American and have the box checked but don't know if there is a more definitive or necessary way to be enrolled. i have no problem with my body being harvested when i die.
Dreamer4Ever
I think the failures of PURE, undadultrated capitalism are well-documented when it comes to essentials. Unless you really believe that those who cannot pay massive sums for medical care SHOULD NOT LIVE, then our capitalism should yield to basic humanity when it comes to medical care.
Every other first world nation on the planet has SOME sort of government-supplied healthcare. Some of them even have capitalist economies too. We gotta fix this system.
mredder4
Not once has the author, or anyone in the comments here, considered the fact that it's possible that he got a transplant from a family member. That someone he is related to, who turned out the be a strong match, willingly (or with financial encouragement) gave Uncle Steve or Cousin Steve a portion of their own liver.
There's this assumption that he jumped ahead in line, accompanied by the standard outcry against rich people having better access. Well, thousands of people get transplants from family members each year. Where's the ranting about them? If their family member can donate to them, why can't that family member donate to a stranger?
While we're making knee-jerk reactions to Steve Jobs' transplant, calling for tighter rules, let's not forget that even middle-class people can still game the system by going to their family.
Shouldn't stopping these blatantly, obviously, disgustingly amoral displays of family affection be just as important (if not moreso, since more people donate to family members than rich people buy organs)? Why should your brother be allowed to give you his kidney when I've been waiting all this time?
JoshAus
Sorry mredder4 but judging from the flogging Jobs is getting in the media over "jumping the queue" I highly doubt it was donated by a family member. Because surely a statement to that effect would have been issued by now.
Also why go all the way to Tennessee if a family member was donating? California has perfectly good transplant units and it would make infinitely more sense for a healthy family member or friend to travel for the operation than for Jobs to do so when he was gravely ill.
FNYGY1
He wouldn't have needed to move to Tennessee to receive a transplant from a relative. Also, the author says quite clearly, she doesn't begrudge him getting a liver. She is simply illustrating the personal consequences of our inequitable system.
mredder4
Really, Mr Steve Jobs Biographer? You know where all his relatives live?
When my father's sister needed a kidney and he was a match (among others out of their 12-sibling family), his major impediment to offering was that either he would have to spend more than a month recovering in her home state (a 2-day drive) or she would need to spend the time recovering and staying at his house. Since neither appealed to my dad and there was another sibling who was also a match who volunteered, the issue was resolved. But it's not completely out of the question that Jobs went to the liver, rather than expecting the liver to come to him.
fsrg25
Life is an "inequitable system"
GPatton
With capitalism you get an unfair distribution of wealth; with socialism you get an equitable sharing of misery. Many of the billionaire entrepeneurs are just slick operators. I mean statistically you're always going to have a few lucky Warren Buffetts, Steve Jobs and Bill Gates types around. Even the lottery has winners. Don't be jealous, Steve Jobs may have gotten a lousey liver. In any case, society can't afford the best state of the art medical proceedures for everyone, regardless of cost. No way. A government that gives you everything you want, will take all you have! George Patton
clemmieo
It is apparent that if you have money and power, you get practically anything you desire. Everyone wants to live, but I am surprised that there has not been more outrage. Are we so dead in our souls that we let these important issues in life go by without comment? Jobs can give as much money as he wants to charity, but that is not going to get a liver for the person who needs it, except perhaps for him. What is the hospital's part in this? Why is this not being investigated and Steve Jobs cleared or that it is confirmed that he pushed in front of a long waiting line.
Fentro
The fact is, unless you have wealth in America, you don't count to the world at large, only to your friends & family. The ride here is not fair, and this isn't the place I want it to be. We all need to work harder at making the place better, which Jobs has done. He deserves a liver before someone like you, Linda. I don't mean to be mean, but that's the world we live in. Enjoy the moments you have, realize you are benefitting from the system to some extent, and use the time that's left to you to make the world a fairer place.
steve-annie
More rubbish. Steve Jobs aside, did Larry Hagman deserve a second liver transplant after he willfully destroyed the first one in the same way as he'd destroyed his own? What exactly was his great contribution to society?
Wednes
Except that what you describe is an untrue urban legend, not a fact.
chinghiz
I am not trying to be flippant but with all due respect, it seems you answer your own dilemma. If you live in Los Angeles county on $22,000 per year then you certainly can live off 22k in Tennessee. Please don't beat me up but It sounds so simple that i am probably missing something in the details of the story.
Natbee
I am surprised how many of you read the article and commented without clearly understanding what the article says. She WORKS in Los Angeles. Do you see her bio at the bottom. If she leaves the state, she will not have that income, will she? That is why she cannot afford to move to another state.
And I do not see the author condemn Jobs anywhere. She is condemning a system that is not equitable. She very clearly writes that he could afford to move and get on a shorter list while she could not.
Please read carefully before making ill-informed comments!
Thank you.
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