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Plan Aims to Aid Patients Waiting for Liver in New England

October 01, 2014

Patients in New England who need liver transplants may have a better chance of receiving a new organ as a national transplant committee considers changes in the way livers are distributed.

The national Liver and Intestinal Organ Transplantation Committee met outside Chicago last week to discuss proposals that would reduce the number of regions and greatly reduce the difference in populations among them. New England, Region 1, would include all of the East Coast to Georgia, plus Puerto Rico, under one proposal.

The goal is to give the sickest patients waiting for liver donations a more equal chance of receiving one, said Dr. David Mulligan, head of the committee and professor in chief of transplantation and immunology at the Yale School of Medicine.

“These regions were developed to try to be zones of distribution from hospitals to liver-transplantation centers,” Mulligan said.

According to a concept paper discussed at the meeting in Rosemont, Ill., “In 2013, 1,523 candidates (an average of eight per day) died while waiting for a liver transplant. Another 1,552 were removed from the waiting list because they were considered too ill to transplant.

“Candidates in some parts of the country must wait until they are very sick before they receive a liver transplant, while those in other parts of the country may receive transplants when they are much less ill,” the concept paper stated.

The liver donation network is administered by UNOS, the United Network for Organ Sharing, a nonprofit organization.

New England is the smallest region in population, at 14 million, but because of numerous factors, including age of the population, the number of transplant centers and the number of people who die outside hospitals (making them ineligible to donate), relatively fewer patients are eligible to receive a liver donation.

Patients in need of a liver transplant, often because they have hepatitis C, are given a score called MELD (or Model for End-Stage Liver Disease), which is calculated through blood tests. The highest score, 40, indicates a 90 percent chance of dying within the next 90 days, Mulligan said.

In large population centers, such as New York, Los Angeles and Chicago, as well as New England, “People are a lot sicker when they reliably get a chance to get a liver transplant,” said Joel Newman, assistant communications director for UNOS.

Nationally, with almost 16,000 patients waiting for a liver, there are fewer than 7,000 listed donors.

“What’s happened is in the Northeast … and on the West Coast where there are high populations and there are lots of people with liver disease,” Mulligan said, “we’re starting to find that people in these areas are getting sicker and sicker and sicker.”

Livers are available to patients with lower MELD scores in the Midwest and South than in New England or California. “One out of five people waiting for liver transplants are waiting in the state of California,” Newman said.

“What tends to happen in the New England region (is) there’s a fairly high concentration of patients” but not enough donors within a reasonable travel distance. When a donor dies, the recipient is determined first locally, then regionally and finally nationally. However, there is a six-hour window to get the organ to the recipient.

“The goal of the process is to try to make it so that the fact a person lives in a certain place is not a factor,” Newman said.

There are two transplantation centers in Connecticut: Yale-New Haven Hospital and Hartford Hospital.

Some people have moved to a different region of the country to increase their chances of a transplant. “What is controversial, more than moving, (is) some people actually maintain listings at different hospitals,” Newman said.

Steve Jobs, for example, while a resident of California, received a liver transplant at the Methodist University Hospital Transplant Institute in Memphis.

While it might seem logical to eliminate regions altogether, “The logistics, however, would mean that organs would be in the air so many hours that we might be creating problems that would increase the risk of damage to the organs,” Mulligan said.

Two possibilities for redrawing the regional maps were proposed at the Rosemont meeting: eight districts, in which Region 1 would stretch along the East Coast from Maine to Georgia, plus Puerto Rico; and four districts, in which the East would stretch from Maine to Georgia and west to northern Illinois and Wisconsin.

Three subcommittees were formed to study the proposals, including financial and logistical concerns. Another symposium will be held in the spring and in 2016 “we’ll see some of the results,” Mulligan said.

If the regions are reduced in number, “For New England, what we would see is a major shift in getting the patients who are so sick and are literally dying in our ICUs” a higher chance of a transplant, he said. “Access to organs would increase significantly.”

While the American Liver Foundation has endorsed the national committee’s work, and called for a campaign to encourage people to register as an organ donor, there is opposition.

U.S. Rep. Kevin Yoder, R-Kan., wrote Mary Wakefield, administrator of the Health Resources and Services Administration, along with more than 50 colleagues, opposing any change in the organ-distribution system.

“There is a critical shortage of donor livers in the United States and a large geographic disparity in the rates of organ donation,” Yoder wrote. “Kansans, and the Midwest as a whole, are historically generous organ donors and UNOS should not adopt proposals that punish successful programs and decrease access to organs where donation rates are highest.”

Call Ed Stannard at 203-680-9382.

Submitted by Dawn Barson on October 01, 2014