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  • iounothjing1 iounothjing1 Jun 5, 2013 8:57 AM Flag

    another reason arikace is needed so bad

    PHILADELPHIA (AP) — The U.S. health secretary said she won't intervene in an "incredibly agonizing" transplant decision about a dying Pennsylvania girl, noting that three other children in the same hospital are just as sick.

    Health and Human Services Secretary Kathleen Sebelius told a congressional panel Tuesday that medical experts should make those decisions.

    However, relatives of 10-year-old Sarah Murnaghan said Sebelius' remarks confused them because they want a policy change for all pre-adolescent children awaiting lung transplants, not just Sarah.

    The Newtown Square girl has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis and is on a ventilator. Her family wants children younger than 12 to be eligible for adult lungs because so few pediatric lungs are available.

    Under current policy, only patients 12 and over can join the list. But Sarah's transplant doctors say she is medically eligible for an adult lung.

    The change would add perhaps 20 children from ages 8 to 11 to the adult waiting list, which has more than 1,600 people on it, according to Sharon Ruddock, Sarah's aunt.

    "One moment they say we're asking for an exception for Sarah. The next moment they say we're asking for sweeping changes and it has to be studied," Ruddock said Tuesday.

    Sebelius has called for a review of pediatric transplant policies, but the Murnaghans say Sarah doesn't have time for that.

    "I'm begging you. ... She has three to five weeks to live. Please suspend the rules," Rep. Lou Barletta, R-Pa., urged Sebelius at a House Education and the Workforce Committee hearing on her department's budget.

    Sebelius conceded the case was an "incredibly agonizing situation" but said many complex factors go into the transplant-list formula.

    Researchers have less data on lung transplants in pre-adolescents because only about 20 a year are done. And young children suffer from different lung diseases, making it harder to weigh their ris

 
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