Marcia Frellick

August 10, 2017

Myles Kane, liver transplant patient, with girlfriend Elizabeth McDonough

Myles Kane was 34 and living in Brooklyn, New York, when he got the news that his liver failure, caused by an autoimmune condition, had progressed to the transplant stage.

Soon after he was listed at the Recanati/Miller Transplantation Institute at Mount Sinai in New York City, his physician gave him a piece of advice that might have saved his life: look at the numbers and get on the list in another region as well.

The wait at Mount Sinai, and in New York in general, is much longer than it is in most other places in the country, the physician explained.

That's when Kane learned a reality of transplantation in the United States: where you live can play a big part in whether you get the deceased-donor organ you need in time to save your life.

You have to be much sicker in New York and California to get a liver than you do in Alabama and Indiana, for instance. Similarly, at some hospitals, the average wait for an adult kidney is less than 2 years, but at others, the wait is 8 to 12 years.

Every day, 20 people die waiting for an organ in the United States.

Kane researched wait times and housing options and ended up moving temporarily to Durham, North Carolina. The parents of his girlfriend, Elizabeth McDonough, lived 5 minutes from Duke University Hospital, which had a much lower bar for liver disease progression than centers in New York.

By the time of the move, "I was quite sick," he said. "I had lost about 30 pounds and was starting to look the part."

Geography as Destiny

Organs are allocated on a local-first basis in the United States. When a donor dies, the first step is to look for a recipient match in the area of the donor hospital; the second is to look for a match in the donor hospital's region.

For liver transplantation, the first consideration within a region is a patient's Model for End-Stage Liver Disease (MELD) score. The MELD score, which indicates the likelihood that a patient with liver disease will die without a transplant in the next 3 months, ranges from 6 to 40 in people 12 years and older, and is calculated on the basis of a series of laboratory tests.

A MELD score of 40 means the likelihood is 100%; a score of 20 means the likelihood is 11%, said Julie Heimbach, MD, chair of the liver and intestinal transplantation committee at Organ Procurement and Transplantation (OPTN), which is run by the United Network for Organ Sharing (UNOS).

The country is divided into 11 geographic regions, and the median MELD score varies widely among them. Currently, a very sick patient living just outside the border of one region might lose out to a less-sick patient living inside the border, even though they only live a mile apart from each other, simply because of the way the map is drawn.

The regions and the donor-service areas were not originally designed "with any kind of population in mind," Dr Heimbach told Medscape Medical News.

Geography is not the only determinant of who gets an organ. Each transplant center has different regulations and thresholds for acceptable organs.

But it is the geographic inequity that disturbs physicians who have to watch patients die because of the randomness of where they live. It was a topic of discussion at the recent International Society of Heart and Lung Transplantation (ISHLT) 2017 Scientific Sessions in San Diego.

"The system has to change," said Daniela Ladner, MD, director of the Northwestern University Transplant Outcomes Research Collaborative in Chicago. "Today, you're much better off living in Tennessee than Chicago if you need a liver transplant, and that is inherently unfair."

This discrepancy is illustrated on the OPTN website, which tracks organ transplantations.

A harsh light was shone on the inequity in 2009 when Steve Jobs, cofounder of Apple, moved temporarily from his home in California to Memphis, Tennessee, where he had listed at a center that had a low MELD threshold, because he could afford to. His new liver lasted until his death in 2011 from complications related to a pancreatic tumor.

Inequities in the system also stand out in the wait times for kidneys. Almost 97,000 people are waiting for a kidney as of this month, and waits range from 0 to more than 6 years, according to the Scientific Registry of Transplant Recipients. Although the registry list tops out at more than 6 years, experts say the wait in large urban areas can be 8 to 12 years, or longer.

But geographic inequity flies in the face of the UNOS Final Rule for the operation of OPTN, which was implemented in 2000. "There should not be different access depending on where you live," Dr Ladner said.

New Proposal Could Help Level the Field

UNOS has been trying to resolve geographic inequities since 2000. Last fall, leaders put out an idea for public comment that involved condensing the 11 districts into eight, but that was met with substantial criticism. Transporting organs farther would hurt outcomes, critics said. And some districts, very protective of their programs, did not want to have to share donor organs more broadly.

But a change proposed by UNOS on July 31 is designed to help ease some of the geographic barriers that affect liver allocation for patients most likely to die without a transplant, without greatly increasing the distance an organ must travel. The aim is to increase the likelihood that available livers will go to the sickest patients.

The proposal suggests that patients considered to be a high medical priority (a MELD score of at least 29) who are listed at a hospital within 173 miles (150 nautical miles) of the donor hospital can receive a liver even if the donor and transplant hospitals are in different regions.

An interactive map has been developed to identify the donor hospitals that meet the proposed distance criteria for specific liver transplant centers.

The new geographic allocation system will apply only to livers at this point, but other organs will be addressed in the future, according to UNOS.

Public comment is open until October 2. The committee will consider all remarks before sending the proposal to the board for a vote.

In the meantime, patients can be evaluated and listed at more than one center, and many are, hoping the shorter wait times will work in their favor. But to do that, patients need to know that some centers have shorter lists, have the support to move for months, and have insurance.

Myles Kane had all three.

Plane Turns Around After Text

In late 2013, Kane had already begun to have checkups at Duke, a requirement to stay active on that list.

After a visit over Thanksgiving, he gave a blood sample before heading back to New York. He was feeling particularly sick and "out of it" when he and his girlfriend boarded the plane. As it was pulling away from the gate, McDonough, who had fortuitously forgotten to switch to airplane mode, got a text.

A physician at Duke had just received Kane's latest MELD score — a 27— which meant Kane had just shot to number one on the list and needed to be hospitalized immediately. An understanding pilot brought the plane back to the gate. "I hated being that guy," he said, laughing.

He is aware of the significance of that fateful text: "I might have been too sick to fly back if I had gotten the text in New York." And New York needed a higher MELD score to transplant. "I could have been at 27 in a hospital bed and the clock could have run out."

Instead, a week after the text, he got a new liver at Duke.

While Kane considers the magical circumstances that led to his now-healthy life, he has an uneasy realization that getting a liver can mean having to game the system.

"It's not cheating, but multilisting is a workaround. Even my doctor in New York said it would be 'smart not to depend on us'," he said.

Kane won the game, largely because McDonough had the energy and drive to do the research, he explained, but he wonders how many others don't have the energy or ability to research other centers or the means or support to live elsewhere for months.

The numbers game also means that patients walk a thin line between needing to be sick enough to move to the top of the list, but not so sick that the body is too weak for transplant.

Although the wait list for a liver is ranked according to severity of sickness, the kidney wait list is ranked according to time on dialysis.

Man Listed at Five Centers for Kidney

Thomas Foster on dialysis

For Thomas Foster, a 49-year-old who lives with his parents in Tinley Park, Illinois, that period has been 2 years. He had to leave his job as a special education teacher with Chicago Public Schools in 2014, and is now on disability. Three times a week he endures 4-hour sessions on a dialysis machine.

He is on the list at five centers; the farthest is in Pittsburgh, he told Medscape Medical News. At his transplant center in Chicago, the wait for a deceased donor kidney is 8 to 12 years, and at the four other centers, the wait ranges from 5 to 7 years for someone with his blood type.

If a kidney becomes available in Pittsburgh, his father plans to accompany him and stay there during the recovery period.

Foster regularly sends blood samples to most of the centers and had to undergo assessment at the out-of-state ones, which meant travel and lodging expenses.

"My family is taking a whatever-it-takes approach," he said.

But listing at distant centers can come with insurmountable challenges. Transportation and lodging costs are incurred not only by the recipient, but also by the person or people who will help the patient through recovery, which can rule out this option for many people.

Getting on a list somewhere else "is a combination of geography and financial resources and personal resolve and just plain luck," said Daniela Lamas, MD, a pulmonary and critical care physician at Brigham and Women's Hospital in Boston.

"Listing elsewhere might be out of reach for people. And people waiting for a lung transplant might be on too much oxygen to be able to get on a plane somewhere," she told Medscape Medical News.

Transporting Oxygen "Would Have Made My Car a Bomb"

Double-lung transplant patient Nicole Seefeldt

Nicole Seefeldt, from Easton, Pennsylvania, had to consider the limitations of traveling with oxygen when she was looking to get on the list at another center after her wait for a double-lung transplant went longer than anticipated.

In March 2016, she was added to the list at the Penn Transplant Institute in Philadelphia, but the predicted 6-month wait came and went. So she decided to increase her chances by looking at transplant centers in Maryland.

At that time, "a tank of oxygen would last me about an hour," she explained, adding that she had a stockpile of about 28 tanks in her house.

However, it turned out that the center she looked into did not provide oxygen for evaluation visits; patients have to bring their own.

The supply required to get to the evaluation center and back "would have made my car a bomb," she told Medscape Medical News.

She finally got her transplant at Penn in December 2016, 9 months after she was listed. Her lung function at that time of transplant had fallen to 12%.

Seefeldt turned 40 this year, an age she wasn't sure she would see.

No system is perfect, she acknowledged, but given the short window available to transplant donor lungs — 4 to 6 hours — the system for lungs seems to be equitable.

Liver Specialist Becomes Patient in Need

Dr Moises Garcia with his team at Aurora St. Luke's Medical Center in Milwaukee

Moises Garcia, MD, a liver specialist at Aurora St. Luke's Medical Center in Milwaukee, is also a 45-year-old patient seeking a kidney.

A year ago, he revealed shocking news — that he had been dealing with kidney disease for decades and was in need of a transplant — to his colleague and friend Ajay Sahajpal, MD, medical director of the transplant program at Aurora Health Care.

His kidney function is currently 15% to 20%, far below the normal function of 90% to 120%.

He has been on the list at St. Luke's for a year, where the wait for a kidney is more than 6 years. A 2-hour drive away, in Madison, Wisconsin, the wait is less than 2 years, Dr Garcia told Medscape Medical News.

That is because of a quirk in the system of organ procurement organizations, Dr Sahajpal explained.

Most of the 58 organ procurement organizations in the United States have several transplant centers within their boundaries. But Madison is one of the few that has only one, so when an organ becomes available in the donor-service area surrounding the organ procurement organization, it is offered to people on the list at University of Wisconsin Health.

The Madison organization covers a large area of mostly rural communities, which have higher donor rates than urban areas. Essentially, it competes for organs with the Milwaukee area, which is more urban, has fewer donors, and has three transplant centers, one of which is a children's hospital.

"We know, geographically, that there's a higher donor rate in the Southeast and the South, and we know the donor rate is higher in rural than in urban areas," Dr Sahajpal told Medscape Medical News.

Dr Ajay Sahajpal, medical director of the transplant program at Aurora Health Care

"We can have patients dying in our ICU waiting for a liver in Chicago or Milwaukee, and in Madison, someone can drive in from home and get a transplant," he said.

Dr Garcia, who is married with three young children, is better connected than most because of his profession. As a liver specialist, he knows the intricacies of the transplant system. As a physician, he is surrounded by experts who are helping him look for a living donor and who have helped him connect with a network of living donors in his native Nicaragua.

He said he doesn't see a need to list at another center because he has faith that his team will be able to find a match. But he acknowledged that the difference in wait times is unfair.

"I would like to have the same opportunities as somebody in Madison. I could go to Madison, but I have family here," Dr Garcia explained.

His chances are best with a living donor because kidneys last longer when they come from a living donor, Dr Sahajpal pointed out. However, none of his family members is a match.

Dr Garcia will likely have to start dialysis in 6 months to a year, but he hopes a match comes before that; he is well aware that outcomes are better if the transplant happens before dialysis starts.

Possible Solutions

In addition to the new geographic system proposed for liver allocation, the transplant community is working on several fronts to decrease the demand for and increase the supply of organs.

The successful transplantation of kidneys from donors infected with hepatitis C virus to uninfected recipients, after direct-acting antiviral agents wiped out the virus in the recipient, has been reported recently (N Engl J Med. 2017;376:2394-2395). This strategy would open up new avenues for donation, and could make use of the 500 or so kidneys discarded each year because of donor infection.

Direct-acting antivirals are also allowing some people with hepatitis C to be removed from the liver transplant list.

And the quest for a way to manufacture replacement organs continues. But artificial organs are 10 to 15 years away, Dr Ladner said.

"Until we can make organs, the only way of getting everyone transplanted is through living donation," she explained. That is a harder sell with livers than with kidneys, though. Consequently, only 4% of liver donations come from living donors, she reported.

"That's the only way out, because I don't think the deceased donor pool is suddenly going to double," she added.

Every 10 minutes, someone in the United States is added to the national transplant waiting list. According to UNOS, today there are 116,829 people waiting.

Dr Heimbach, Dr Ladner, Dr Lamas, Dr Garcia, and Dr Sahajpal report no relevant financial relationships. Nicole Seefeldt is a former editor at Medscape and her colleagues are delighted to witness her improving health and wish her well.

Follow Medscape on Twitter @Medscape and Marcia Frellick @mfrellick

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