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Philadelphia rulings on dying children spur debate on transplants

June 07, 2013|By Michael Muskal
  • Javier Acosta, 11, of New York has cystic fibrosis and is in intensive care at Children's Hospital of Philadelphia. He won the right to be added to the adult waiting list to receive a lung transplant.
Javier Acosta, 11, of New York has cystic fibrosis and is in intensive care… (Blair Kahora Cardinal /…)

A second dying child has been given a chance to get a transplant of adult lungs, the latest step in a debate over a policy that has raised medical and legal questions.

Javier Acosta, 11, has been placed on the official list to receive an adult lung transplant, if the appropriate organ becomes available. The move was ordered by a federal judge in Philadelphia who earlier this week issued a similar temporary order to allow Sarah Murnaghan, 10, to be placed on the list for adult lungs even though the current policy calls for children younger than 12 to be listed separately for donations of organs from other children.

“The orders granted this week have given Sarah and Javier hope, but Sarah and Javier are not alone,” according to a prepared statement emailed to reporters from the families’ lawyers, Stephen Harvey, Chad Holtzman, Melissa Hatch, all of the firm Pepper Hamilton LLP. The firm is representing the separate families for free.

“Doctors need donated organs in order to give new life to patients, and organ scarcity is a major problem in our country. We hope that Sarah and Javier’s stories will remind us all to become organ donors and, if we face the tragedy of the loss of a loved one, consider a directed donation of their organs.”

But the cases of the children raise other issues as well. They pit the fate of desperately ill children against rules designed to create a framework for distributing scarce organs in an effective and fair manner. There is also the question about using the legal system to gain something from the medical system.

Because of the shortage of organ donations, transplant issues are a zero sum game, meaning somebody will almost always be left out.

About 1,700 people are on the waiting list for a lung transplant, including 31 children younger than 11, according to the Organ Procurement and Transplantation Network, which oversees the distribution of the organs. The decision is based partly on need, but also on such medical issues as viability.

There are reasons to separate children from adults on transplant lists because of their different medical needs. Transplanting lungs are difficult and children do less well than adults. One of the issues is the size of the organ and the different size of the patient’s chest.  Doctors and hospital ethics committee work on the issues before deciding transplant surgery issues.

But the most basic rationale still revolves around questions of availability. U.S. District Judge Michael Baylson, who ruled in the two cases, noted that adult lungs were “more than 50 times greater than the pool of lungs donated from children under 12.”

Baylson’s actions are limited to just his district in Philadelphia, but they are being watched by others who may be in similar cases in different jurisdictions. In addition, federal officials have  announced they will examine the policies on age in determining transplant lists to see if the age issue should be changed.

For the time being, both children are waiting to hear if any lungs become available. The cases are similar in many ways.

Javier has end-stage cystic fibrosis and needs a lung transplant to survive. Javier’s older brother, Jovan, also had the condition and died Aug. 15, 2009, while waiting for a liver and lung transplant. Jovan was 11 when he died, according to Javier's lawyers.

“Unfortunately, many people, including children like Jovan, have died while waiting for vital organs because of the overwhelming shortage of organ donors in the United States,” they said.

The original case involves Sarah, who also has end-stage cystic fibrosis and has been waiting three months for a lung transplant at Children's Hospital of Philadelphia, where Javier is also a patient. The Murnaghan family, of suburban Philadelphia, was the first to sue the government to allow their daughter to be placed on the adult lung transplant list.

The family had appealed to Health and Human Services Secretary Kathleen Sebelius to order that the youngster be allowed to receive adult lungs. Sebelius initially insisted she did not have the authority to bypass the existing protocols — despite pleas from the family.

Baylson solved the issue temporarily Wednesday by issuing a temporary restraining order in the case. Baylson suspended the age limit in the nation's transplant rules for 10 days for Sarah, and then did the same for Javier, whose family pursued the case after the ruling on Sarah.

The ruling requires Sebelius to order that Sarah be temporarily placed on the adult list as well as remaining on the priority list for a lung from a child donor. A June 14 hearing has been scheduled on the family’s request for a broader, permanent injunction.

“For us, this means that for the next 10 days, Sarah's placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age,” the family said in a prepared statement after the court ruling.

“We are experiencing many emotions: relief, happiness, gratitude and, for the first time in months: hope,” they said.

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