Waiting lists for liver transplants under scrutiny
June 22, 2015 12:00 AM
Rick and Jessica Goeller with their son Lucas, 2, who has been waiting for a liver transplant.
By Joe Smydo / Pittsburgh Post-Gazette
Representatives of the nation’s transplant system today will resume public wrangling over the divisive question of whether a liver should stay near the area where it’s donated or go to a sicker person farther away.
A call last year to eliminate local and regional preference in liver distribution brought howls of protest from doctors in the Midwest, South and Pacific Northwest who feared losing organs to areas with lower procurement rates or sicker patients.
David Mulligan, chief of transplantation and immunology at Yale School of Medicine, said compromise concepts will be discussed during today’s public forum on the issue in suburban Chicago. One new idea would aim for broader sharing while giving an edge to patients within so many miles of the hospital that recovers a liver for transplantation.
But one of today’s speakers, David Goldberg, assistant professor at the University of Pennsylvania’s Perelman School of Medicine, said proposals to redistribute livers still fail to address key problems, including the overall shortage of livers and flawed criteria by which the transplant system determines which parts of the country most need organs.
Broader sharing would reorder wait times for about 15,000 would-be recipients and, supporters say, get more organs to the sickest patients. Among those waiting, for 1½ years, is 2-year-old Lucas Goeller of Indiana Township, a patient of Children’s Hospital of Pittsburgh of UPMC.
His mother, Jessica Goeller, said she doesn’t have a position on liver distribution policy but is surprised that Lucas, who doctors have told her is very sick, “really hasn’t had any offers.”
“He needs a liver soon.”
Ngoc Thai, chief of abdominal transplantation for Allegheny Health Network, said he favors broader sharing of livers but doesn’t believe the shift would have much impact on the number of livers entering or leaving this area.
Currently, first dibs on a liver go to patients in the “donation service area” or region where it’s recovered and then, if still available, the organ is made available nationally. At each level — donation service area, regionally and nationally — a patient’s priority is based on a model of end-stage liver disease, or MELD score, that reflects level of sickness. Children are assigned a pediatric end-state liver disease, or PELD, score.
A federal Organ Procurement and Transplantation Network committee headed by Dr. Mulligan called for ending preference by donation service area and region. Instead, livers would be offered to patients within four to eight new districts before being offered nationally.
Proponents said the change is needed to eliminate geographic disparities. Because of variation in organ availability, patients in certain parts of the country, such as New York and California, generally grow much sicker than those in other areas, such as Pittsburgh, Florida or Kansas, before receiving transplants.
Nationwide, the largest group of would-be recipients — 19.3 percent — has been waiting one to two years for a liver. In the region including Pittsburgh, a fifth of would-be recipients, or 20 percent, have waited that long. Across the country, about 1,500 die waiting each year.
To improve his odds of a transplant, Mrs. Goeller and her husband, Rick, have discussed the possibility of also putting Lucas on waiting lists based in other cities.
Dr. Mulligan said criticism of the committee’s work prompted alternate plans that would reintroduce a measure of local preference — perhaps an increase in MELD score to patients living within so many miles of the hospital that recovers a liver.
However, Dr. Goldberg said the committee’s approach remains flawed. He said the waiting list MELD score is an inflated measure of sickness because it gives patients too many extra points for special problems, such as liver cancer. He also said access inequities are best measured not by waiting-list data but by liver disease death rates. By that standard, he said, Florida and parts of the Southwest have more need of livers than New York.
The system must think beyond waiting-list data, which provide insight only on those who make it that far into care, he said.
“We know that access to care is an issue for minorities,” while people in rural areas may have a difficult time getting to a transplant center or onto a waiting list, he said. In addition, he said competition among transplant centers in urban areas may drive up the number of people on waiting lists and inflate the purported need for organs.
Dr. Goldberg said increases in organ donation would be the best way to ease distribution problems.
The Goeller family last week started a Facebook page and website, detailing Lucas’ struggles, to raise awareness about the organ shortage. Mrs. Goeller said the response has been overwhelming. Lamar Advertising provided 25 electronic billboards promoting Lucas’ plight, and a GoFundMe campaign quickly raised $10,000 that Mrs. Goeller said would be used to cover medical expenses, such as possible flights to transplant centers in other cities.
Joe Smydo: firstname.lastname@example.org or 412-263-1548. Computer-assisted reporting coordinator Jacob Betzner contributed.
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