June 5, 2013
Feds Won’t Intervene For 10-Year-Old Lung Transplant Patient
Brett Smith for redOrbit.com - Your Universe Online
Secretary of Health and Human Services Kathleen Sebelius“¯announced on Tuesday that she will not personally intervene in the case of 10-year-old Sarah Murnaghan, a Pennsylvania patient with cystic fibrosis who is expected to die within three to five weeks if she does not receive a lung transplant.Because only patients aged 12 and over can join the transplant waiting list for adult lungs and so few children´s lungs become available, Sarah´s prospects currently look grim. Her transplant doctors say she does qualify for an adult lung according to current standard medical protocol.
Sebelius cited three other children at the same hospital that she says are just as sick as her reason for leaving these types of “¯"incredibly agonizing" decisions to medical experts.
Sharon Ruddock, Sarah´s aunt, told the media that letting older children become eligible for adult lungs would only add 20 children to the 1,600 people already on the adult waiting list.
"One moment they say we're asking for an exception for Sarah,” Ruddock said Tuesday. “The next moment they say we're asking for sweeping changes and it has to be studied.”
The HHS Secretary has called for a “transparent, deliberative” official review to be done as soon as possible, but Sarah´s family said she doesn't have time to wait. The girl from Newtown Square, Pennsylvania has been hospitalized at Children's Hospital of Philadelphia for three months with last-stage cystic fibrosis and is currently on a ventilator.
"We don't want preferential treatment for Sarah, we want equal treatment," her mom Janet told the Associated Press on Sunday. "We want it to be a triage system like they do for everyone else where the sickest patient goes first and ones with ability to wait, wait."
On Friday, Sebelius sent a letter to the Organ Procurement and Transplantation Network (OPTN), the non-profit group contracted to the federal government. In the letter, Seblius asked OPTN to review the age policy to identify potential improvement “that would make more transplants available to children.”
"The policy development process is not fast," said Anne Paschke, a spokesperson for OPTN and manager of the United Network for Organ Sharing (UNOS).
"Organ allocation policies are created to transplant as many people as possible overall, result in the fewest waiting list deaths overall and result in the best possible survival overall,” she told the AP via email. “In developing policies, committees and the board weigh data, medical evidence and experience, and public input."
According to OPTN statistics, only 10 lung transplants were completed on children 10 and under in 2012, compared to more than 1,700 lung transplants on people 11 and older. Because fewer transplants are performed on young children, researchers have less data on these types of procedures. Lung diseases also affect young children differently compared to adolescents or adults, according to a letter to Sebelius from Dr. John P. Roberts, president of OPTN.
To address the pressing situation US Representative Patrick Meehan of Pennsylvania´s 7th District wrote a letter to Sebelius saying that Sarah's doctors could immediately perform a successful transplant on her given their level of confidence and the stage of her disease.
"If she was 12 this wouldn't be an issue," Meehan wrote. "Sarah is not asking to be placed ahead of another, but rather she is petitioning for the ability to compete for equitable treatment based on sound medical judgment and that she be accorded her appropriate place in line. Her need and survivability are the critical factors."