Second U.S. family urges change to children's organ transplant policy

Sat Jun 8, 2013 10:24pm EDT
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By Dan Kelley

PHILADELPHIA (Reuters) - A second family has stepped forward in the public fight to change a donor-organ policy that places sick children younger than 12 years of age at the bottom of the adult transplant list, regardless of the severity of their illness.

The mother of Javier Acosta, 11, who suffers from cystic fibrosis and needs a lung transplant, urged policymakers on Saturday to adopt new rules to make a life-saving adult lung more readily available to her gravely ill son.

"If Javier does not receive a transplant, he will die," Milagros Martinez said during a news conference in Philadelphia. "I say that's unfair because of a policy. It shouldn't be that way."

The family of Sarah Murnaghan, 10, who like Javier is suffering from cystic fibrosis, is also publicly calling for a change in transplant list policies administered by the Organ Transplant and Procurement Network.

The Murnaghan family efforts have garnered national media attention and scrutiny of lawmakers on Capitol Hill, some of whom have called on U.S. Health and Human Services Secretary Kathleen Sebelius to intervene.

Last week, U.S. District Judge Michael Baylson granted the two families a temporary court order barring enforcement of a policy that places children under age 12 at the bottom of the adult lung transplant list, regardless of their illness.

The Murnaghan and Acosta children are both awaiting lung transplants at the Children's Hospital of Philadelphia. While each is eligible for donor lungs from children, those are rare.

The lawsuits have led some to voice concerns that adding children to adult transplant rosters could end up pushing deserving older patients farther down the list.   Continued...