Efficiency Attempt in Organ Allocation Create “Fairness” Questions

“And yet, there are ways to work the system to one’s advantage. Waiting times for a liver vary in different parts of the country, and people who can afford to travel are free to go to a city or state with the shortest wait and bide their time until they have reached the top of the list, a donor dies and an organ becomes available. Indeed, some patients rent apartments or stay in hotels near a hospital and wait for the phone to ring. It may not seem fair, but it is not illegal.”

 Steve Job’s liver transplant several months ago raises questions regarding the division of the scarce resource of human organs to individuals. The current distribution system is run by UNOS and is based on two overarching principles of allocation:  medical utility and justice, with the principle of medical utility dictating that organs should be allocated to “create the greatest good for the greatest number of patients” while distributive justice dictates that organs  “should be allocated to patients in the greatest need for a transplant or who would benefit most” (such as children).  Thus, a point system similar to the example at the top of this post of how kidneys are allocated is used to determine priority recipients:

While the existing system uses this point system to achieve a level of “equitability” in the allocation of organs, the system’s attempts to achieve efficiency have created a loop hole that wealthy patients such as Jobs can use to their own advantage. Because of the costs of transporting organs as well as the risk of damaging the organs, the United States is divided into different regions for organ allocation which attempts to create the greatest number of successes (or pie) given the current set of resources. However, because of differing proportions of patients to organs in the specific regions, wait times for organs vary tremendously from just a few months to over a year or more. No rules exist to prevent individuals from registering in more than one region for an organ; therefore, those individuals with the resources to quickly travel between regions at a moment’s notice have a distinct advantage in the system. This advantage for the rich then fosters “envy” among others on the waitlist.

While this is certainly a complicated issue, UNOS may want to look at refining the rules surrounding registering at multiple centers so as to ensure a more equitable division between economic classes.

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http://www.nytimes.com/2009/06/23/business/23liver.html

New York Times:  A Transplant That Is Raising Many Questions

By DENISE GRADY and BARRY MEIER

Published: June 22, 2009

Reports that Apple’s chief executive, Steven P. Jobs, traveled to Tennessee for a liver transplant about two months ago raise many questions — not just about his prognosis, but also about the system for allocating scarce organs to the many people who need them.

Whenever someone rich and famous receives a transplant, suspicions inevitably arise about whether that person managed to jump to the head of the waiting list and take an organ that might have saved the life of somebody just as desperate but less glamorous. The dark theories are a holdover from the case of Mickey Mantle, who waited all of one day for a liver in 1995, and then died from liver cancer anyway, just two months later.

In Mr. Jobs's case, doctors say there was no need, and little opportunity, to cheat the system. Under current procedures, any transplant center ranks potential liver recipients on its waiting list, with the highest rankings based on how sick the patients are and how long they have been that sick. Jumping ahead of a sicker patient is not allowed.

And yet, there are ways to work the system to one’s advantage. Waiting times for a liver vary in different parts of the country, and people who can afford to travel are free to go to a city or state with the shortest wait and bide their time until they have reached the top of the list, a donor dies and an organ becomes available. Indeed, some patients rent apartments or stay in hotels near a hospital and wait for the phone to ring. It may not seem fair, but it is not illegal.

It is even conceivable that someone could go to the time and expense of registering for the waiting lists of several transplant centers around the country.

“If you had access to a jet and had six hours to get anywhere in the country, you’d have a wide choice of programs,” said Dr. Michael Porayko, the medical director of liver transplants at Vanderbilt University, one of the Tennessee centers that has said it did not treat Mr. Jobs.

Mr. Jobs’s transplant, but not the location of the hospital or the details of his treatment, has been confirmed by people briefed on the matter by current and former Apple board members. Mr. Jobs has declined to comment.

Some doctors say that for Mr. Jobs, a transplant may have been a wise move medically — though others say the evidence is inconclusive.

Experts said that the most likely reason for Mr. Jobs to need a transplant would be that pancreatic cancer, for which he has disclosed having surgery in 2004, had spread, or metastasized, to his liver.

“If you were to postulate why he did it, I think the most likely reason would be that he had liver metastasis,” said Dr. Richard M. Goldberg, an expert on pancreatic cancer at the University of North Carolina, Chapel Hill, who is not involved in Mr. Jobs’s treatment.

Though other, noncancerous types of liver disease could also have led to a transplant, experts say cancer is the most likely explanation.

The liver is the most common site for the spread of pancreatic cancer, especially the rare kind that Mr. Jobs had, known as a neuroendocrine tumor, Dr. Goldberg said. That type of tumor tends to be slow-growing and far more treatable than the more common type of pancreatic cancer, which can be fatal within months.

When neuroendocrine tumors do metastasize, Dr. Goldberg said, they often spread only to the liver, rather than all over the body, and a transplant may be recommended.

Often, though, when tumors spread to the liver, surgeons can treat them by removing just part of the liver. The fact that Mr. Jobs needed a transplant suggests that he might have had diffuse disease throughout his liver, something that does not bode well, Dr. Goldberg said.

“The prognosis for somebody with metastatic liver disease is not nearly as good as for somebody who has disease confined to the pancreas,” Dr. Goldberg said.

“I think this confirms the speculation that there was more going on than had been previously acknowledged,” he said, “but it still doesn’t really tell us where things are likely to go from here.”

Dr. Goldberg said no large-scale, controlled studies had been done on the benefits of transplants for this type of cancer.

“It’s controversial whether transplant is a helpful approach,” he said.

Dr. Lewis Teperman, the director of transplant surgery and vice chairman of surgery at the Langone Medical Center of New York University, says that transplants are frequently done for people with certain types of liver cancer. About half the center’s liver transplants involve cancerous organs, he said, though not usually metastatic cancers.

According to one national study, more than half the patients receiving transplants for cancerous livers were still alive after five years.

A transplant would be reasonable for treating metastases of the kind of pancreatic cancer Mr. Jobs had, Dr. Teperman said, adding that if Mr. Jobs’s liver had had been “full of the tumor,” the transplant would prolong his life.

“But I can’t tell you how much, because I don’t know the extent of the tumor,” Dr. Teperman said. Like Dr. Goldberg, he was not involved in Mr. Jobs’s care.

Unfortunately, Dr. Teperman said, the medicines needed to prevent rejection of the transplant could allow the tumor to regrow.

“There may be some cancer cells scattered around, and they tend to come back to the new liver,” he said.

Some people can avoid the transplant waiting list entirely by receiving a transplant from a live donor, usually a friend or relative who volunteers to give up part of a liver. But Dr. Teperman said he would not recommend that kind of surgery for people with extensive liver tumors, because they might also need a vein that could not be removed from a live donor. They are better off waiting for a liver from a cadaver, he said.

The nation’s organ donor system is managed by the United Network for Organ Sharing, or UNOS, a nonprofit group in Richmond, Va., that operates under contract with the federal government.

When an organ like a liver becomes available, the UNOS database is searched for patients who need it most and have registered at the transplant center where the organ is available, said Anne Paschke, a spokeswoman for the group.

To qualify for an organ, a patient must have first been examined and approved for a transplant by a doctor at that center. Patients often register with a transplant center close to where they live or are directed to register with a specific center by their insurance company, Ms. Paschke said.

But there is nothing, apart from cost, to prevent a patient from registering with multiple centers throughout the country, Ms. Paschke said. A person with generous insurance coverage, or who themselves can afford to pay for the medical work-ups and the transplant, would have an advantage.

There is a trove of publicly available data that can help patients calculate waiting times and get other information about transplant centers nationwide.

For example, in Tennessee, the state in which Mr. Jobs reportedly had his transplant, the median waiting time varies from 3.8 months at Methodist Hospital in Memphis to 17.2 months at Vanderbilt University Medical Center in Nashville, according to a transplant registry operated by Arbor Research Collaborative for Health and the University of Michigan. The median waiting time nationally is 12.3 months, according to that registry.

Ms. Paschke said that the only way a patient could acquire a donated organ outside the system would be if a donor directed that an organ be given to a specific person.

A scoring system used by UNOS, known as a MELD score, determines where a patient ranks on a transplant waiting list. The higher the score, which runs from 6 to 40, the sicker a patient is and the higher the ranking. Any ties are broken by who has had that score the longest.

But patients with high MELD scores on the East or the West Coast will wait longer than those with the same scores in the Midwest or elsewhere, because high demand means fewer organs are available on the coasts, Dr. Porayko said.

Creativity in Creating Voting Rules: Election System in Lebanon

A 2005 article describing Lebanon’s election system demonstrates an important point discussed in our SDA class: the ability to manipulate political results by creating voting systems under the flag of fairness. The country utilizes a “confessional” system that requires that parliament be split equally between Christians and Muslims, claiming the system provides a balance of religious power. However, the country is 70% Muslim and 23% Christian with no weight given by population to allocate seats; therefore, in the 2000 election, Muslim politicians in some instances had to get three times as many votes as Christians for the same amount of power.

The confessional system also mandates a "troika" of leadership (again to achieve this balance of religious power) so that the president has to be a Maronite Christian, the prime minister a Sunni Muslim, and the speaker of parliament a Shiite Muslim. The forced religious qualifications give no regard to whether individuals have the best qualifications.

This example illustrates the tremendous influence that the kind of election system put in place has on the leadership of the country. It also demonstrates the subjectivity of “fairness.” As with the author of the below article, as a member of the Lebanon’s Muslim community, she views the system as unfair because it decreases the power of the Muslim voice. Lebanon’s Christian community, however, may view the system as extremely fair because it ensures that the voice of the “underdog” is heard, rather than being drowned out by the masses.

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 Washington Post: Lebanon's Election: Free but Not Fair

By Annia Ciezadlo

Sunday, May 22, 2005

http://www.washingtonpost.com/wp-dyn/content/article/2005/05/20/AR2005052001868_pf.html

BEIRUT

Every week, my husband and I take a rickety old taxi to Hezbollah country. The emerald city of downtown Beirut, with its glittering luxury towers, drops away behind us; ruined buildings, their shell-shocked hulks festooned with laundry, loom ahead like ghost ships.

We soon leave Beirut proper and reach the dahiya -- the dense and sprawling Shiite crescent, half suburb, half slum, that cradles the city's southern borders. In the dahiya, home to my in-laws and a large swath of Beirut's population, the recent anti-Syrian protests that became known as the Cedar Revolution seem like a fairy tale. "As an area, as dahiya, we're not concerned about what's happening in downtown," one college student told me in March while demonstrations raged in Martyrs' Square. "We regard what's happening as a joke."

Around the world, however, the candy-cane banners and multilingual college kids of the uprising caught the imagination of millions. Holding parliamentary elections on time, free of Syrian influence, became democracy's new rallying cry. President Bush cautioned against delaying the poll, scheduled to run on four consecutive Sundays beginning May 29.

But Bush and other well-meaning Americans are ignoring a fundamental problem: With Syria gone, Lebanon's elections will be free, but they won't be fair. In Lebanon, Muslim votes, especially Shiite votes, count less than those of Christians. Literally.

This inequality dates back to 1943, when the French handed Lebanon over to the country's French-speaking Maronite Christian elite and founded what is called the confessional system, with parliamentary and executive offices parceled out among the major religious sects. In theory, it provides a balance of religious power; in practice, it's an entrenched im balance -- and a writhing rat's nest of corruption, with outside influences like Syria easily playing one sect off another.

Lebanon's election law creates a byzantine web of provinces and districts, exquisitely gerrymandered to give each of 18 sects a certain number of seats in parliament. The number of seats each sect gets bears little relation to its current weight in the population. The U.S. State Department estimates Lebanon's population at about 70 percent Muslim and 23 percent Christian. (Estimates vary, because Lebanon hasn't held a census in 73 years, but few question that Muslims are a majority, with Shiites outweighing Sunnis. ) Yet to this day, the parliament must be split equally between Christians and Muslims. During the last election, in 2000, politicians running in the primarily Muslim south had to get three times as many votes to win a seat as those running in some Christian areas.

In order to maintain this political skew, Lebanese electoral law requires all voters to return to their family's ancestral home towns to cast their ballots, regardless of where they actually live, or even where they were born. Shiites have to travel to a "Shiite area" to vote for mostly Shiite candidates, and so on. Thus my husband's parents, who have lived in the dahiya for more than 40 years, will have to travel to Bint Jubayl, almost to the Israeli border, if they want to vote. They're old and frail--most likely, they won't bother to make the two-hour journey, just to elect somebody who won't even represent them. "Nobody deserves it!" scoffs my mother-in-law, setting down plates of savory stuffed zucchini and hand-rolled grape leaves.

Another of the many ironies of the system is that Lebanon's preeminent politician can't ever be president; he's barred from running for prime minister; and he isn't even eligible to be speaker of parliament. Why? Because that politician -- opposition leader Walid Jumblatt -- is a Druze Muslim. The confessional system mandates a "troika" of leadership, where the president has to be a Maronite Christian, the prime minister a Sunni Muslim, and the speaker of parliament a Shiite Muslim -- regardless of who has the best qualifications for any job.

This state-sponsored discrimination extends all the way down to the lowest levels of the public sector, where government functionaries choose civil servants, from cops to college professors, by how they pray.

Our friend, science professor Mahmoud Faraj, experienced this firsthand. With a French doctorate and 18 academic publications to his name, Mahmoud is well qualified to work in any Lebanese university. But one of the colleges he applied to already had its quota of Shiites. "We're going to try to smuggle you in," the dean told him, "but don't tell anyone." Smuggle him in? Mahmoud was disgusted. "You don't really belong to this country," he says. "You belong to your sect."

In America, where he lived for 17 years, Mahmoud worked for a Fortune 500 corporation and voted -- twice -- for George W. Bush. In Lebanon, if he goes to the trouble of voting, he'll have little alternative to Hezbollah, the armed Shiite militia, because that's who dominates the slate in his ancestral village. He's thinking about casting a blank ballot.

In America, Mahmoud felt as though his vote mattered. Here, he doesn't. "I'm 50 years old, and I've never voted in my own country," he says, with a sad laugh. "With this system now, I think my votes will be insignificant."

I see the results of this disenfranchisement every week. In the summer, when Beirut's seaside breeze turns to a steamy blast, the Electricite du Liban stops bringing electricity to the dahiya, as it does every summer. The people turn to ishtiraq, literally Arabic for "subscription": You pay a fee to some neighborhood Croesus who owns a generator. Look up, anywhere in the dahiya, and you'll see the sky through a snarl of electrical wires that siphon ishtiraq from one concrete-block building to another.

Enter Hezbollah -- a political machine for people left out of the political system. The party's special status as an armed faction is the Shiites' de facto consolation prize for being disenfranchised. For Lebanon's underrepresented Shiite plurality, guns are the great equalizers: Arms and money flow through Syria from Iran, which is believed to finance the militant group to the tune of millions of dollars per month. In the dahiya and southern Lebanon, Hezbollah has become a powerful shadow government, building a network of schools, hospitals and charities.

The consensus outside Lebanon is that Hezbollah should disarm, as required by United Nations Resolution 1559, and take its place in Lebanon's evolving democracy. But the question is, how? In the endless horse trade of Lebanese politics, Hezbollah will want something in exchange for surrendering its arms. If the party stops being Iran's gun-for-hire against Israel, it stands to lose not just political power, but millions in subsidy. Hezbollah won't consent to giving all that up while Lebanon's political deck is stacked so heavily against Shiites.

The Bush administration seems to be waiting until after the elections to address the Hezbollah issue. But the upcoming elections are a rare opportunity: If Bush wants to help Lebanon disarm Hezbollah peacefully -- and if he wants to deserve his reputation as a liberator of the Arab world's downtrodden Shiites -- he'll encourage Lebanon's Christians to give up their special privileges. And if Hezbollah leader Hasan Nasrallah is the pragmatist he's reputed to be, he'll accept ballots and a census in exchange for his rocket launchers.

The Taif Accord, the 1989 agreement that has governed Lebanon since the civil war, requires the country to abolish the confessional system. So far, very few politicians have made any sincere attempt to do so. But the Lebanese people feel differently. A recent Zogby poll showed that 63 percent wanted to abolish the troika, and 69 percent wanted the president to be elected in a one-person, one-vote poll, instead of being chosen, as he is now, by parliament. Not surprisingly, Maronites were divided on both questions, while Muslims clearly preferred a secular system. A new Lebanese civil society group, Hayyabina (meaning "Let's go"), recently called for a referendum to end religious affirmative action. The Bush administration and the United Nations should support them -- not only because it might help disarm Hezbollah, but because it's the democratic thing to do.

Meanwhile, politicians are plastering their grinning faces all over most of Beirut. But in the dahiya, few bother: Most people who live there can't vote there anyway. Many of them plan to sit out the elections -- my mother-in-law included.

Would she vote if she could do it close to home, in Beirut? She can't quite believe the question: "What do you think this is?" she asks sardonically, picking up our dishes. "America?"