Second Child Needing Lung Transplant Gets Court Reprieve

A second child who needs a lung transplant won a court order making him eligible to seek an organ from an adult donor from the same federal judge who yesterday made an exception to federal policy on transplants.

U.S. District Judge Michael Baylson granted a temporary restraining order barring U.S. Health and Human Services Secretary Kathleen Sebelius from enforcing a rule giving adults and adolescents priority over children under 12 for adult lungs. The ruling, like one Baylson made yesterday for a 10-year-old girl, allows 11-year-old Javier Acosta, who has end stage cystic fibrosis, to be eligible for a transplant of adult lungs should they become available.

“Javier’s older brother, Jovan, also had cystic fibrosis,” Stephen Harvey, an attorney with Pepper Hamilton LLP who represents Acosta’s mother Milagros Martinez, said in a statement. “Jovan died on Aug. 15, 2009 while waiting for a liver and lung transplant. He was 11 years old, the same age as Javier is now.”

Baylson yesterday granted a request from the parents of Sarah Murnaghan, who suffers from the same disease. Acosta and Murnaghan are both in the intensive care unit at The Children’s Hospital of Philadelphia. Baylson said yesterday that his decision could affect 16 other people in the U.S., including someone in Pennsylvania. The ruling isn’t binding on other judges and only applies to this area, said Baylson, a senior judge for eastern Pennsylvania.

Under 12

Martinez, of the Bronx, New York, filed a complaint today arguing that the “Under 12 Rule” discriminates against children. Harvey, who represented the Murnaghans in their request, said Martinez sought similar relief for Acosta after yesterday’s ruling, according to the complaint. Acosta will likely die before his 12th birthday in August without a lung transplant, according to the complaint.

In a letter today, Sebelius asked the Organ Procurement and Transplantation Network, the group charged with overseeing organ allocations, to comply with Baylson’s order in Murnaghan’s case. OPTN created a second candidate record for Murnaghan with a birthdate that makes the system treat her as a 12-year-old, Sebelius said in the letter.

Acosta is the person Baylson referenced yesterday, Chad Holtzman, another attorney for the family, said in a phone interview.

Tait Sye, a spokesman for HHS, said the department is “complying with the judge’s order” in Acosta’s case.

Cystic fibrosis is a congenital disease affecting the lungs, pancreas, liver and other organs. The lungs of people suffering from the disease clog with mucus, causing breathing problems and promoting the growth of bacteria, according to the National Institutes of Health. While there are treatments, there is no cure, according to the NIH website.

Transplant Needs

The Organ Procurement and Transplantation Network, created by Congress, operates as an independent nonprofit group under federal contract to manage transplant needs. Almost 1,700 people nationwide await a life-saving lung transplant, including 30 children ages 10 or younger, the network said in a May 27 statement. Last year there were 11 lung donors from the ages of 6 to 10, the network said.

Sebelius told Congress on June 4 that she wouldn’t sign a waiver allowing Murnaghan to sidestep the under 12 policy because there are people just as sick waiting for a lung transplant, including three other children in Philadelphia. She didn’t identify the children.

Lawyers for HHS argued in court yesterday in the Murnaghan case that the transplant policy was established with the interests of patients in mind based on scientific judgment. The policy shouldn’t be interfered with, they said.

OPTN, which has formed a committee to review the policy, shouldn’t apply the rule to children while it reviews the matter, Harvey said in the statement. The policy is wrong and there’s a risk some children will die in the meantime, he said.

The case is Martinez v. U.S. Department of Health & Human Services, 13-03119, U.S. District Court, Eastern District of Pennsylvania (Philadelphia).

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