Sen. Toomey visits dying girl waiting for lung transplant in Philly [updated]

U.S. Sen. Pat Toomey (R-Pennsylvania) today visited a 10-year-old girl waiting for a lung transplant at the Children’s Hospital of Philadelphia. Sarah Murnaghan has cystic fibrosis, a genetic lung disease, and has been waiting for a pediatric lung for more than 18 months. Her health has deteriorated during the wait and she has lived at the hospital for several months now.

Sarah Murnaghan’s family launched a successful campaign to get the girl placed on the wait-list for adult organs. Since she is younger than 12, she previously only had a chance to receive an adult lung after adults on that list had turned the organ down.

Toomey previously appealed to U.S. Health Secretary Kathleen Sebelius to change the rules that govern organ allocation, calling them “flawed.” After Sarah’s family took this issue to court, Judge Michael Baylson intervened on Sarah’s behalf, placing her and another child on the adult list until the current rules have been reviewed.

Toomey visited the girl Monday to show his support for the family, and get a better sense of the state of her health.

“She is battling in a race against time,” said Toomey of Sarah after leaving the hospital. He said the girl was intubated and sedated.

Toomey said he will continue to work in favor of changing the rules on how donor organs are allocated.

“This has been described by experts in this field, as well as medical doctors who study this, as an arbitrary cutoff,” he said of the current rules.

Toomey said that organs should go to the sickest people on the waitlist, regardless of their age. “The criteria should be that the person who’s highest on the list is the person who has the most urgent need. It should go down the list from there.”

Experts have cautioned against changing the rules, saying that the rules were made for a specific purpose — to give scarce organs to those who have the best chance for a positive outcome. Doctors disagree over whether children do well with transplants in general, and with adult organs that may be too big for their bodies.

Toomey said despite the lack of data, the rules should be changed.

“That’s not a reason to systematically exclude children who are in the final days and weeks of life in the absence of a transplant.”

The organization responsible for allocating donor organs, the Organ Procurement and Transplantation Network, will review its pediatric policies today. A court hearing on the transplant rules is scheduled for June 14.

Update

The Organ Procurement and Transplantation Network (OPTN) announced an interim policy Monday evening that will allow children younger than 12 to be considered for higher priority slots on lung transplant lists.

The decision comes following the court ruling that two children suffering from cystic fibrosis at the Children’s Hospital of Philadelphia be placed on the adult organ waiting list.

Effective immediately, lung transplant programs will be able to request that pediatric patients be placed on adult donor lists in addition to pediatric lists based on their need – which is assessed in a so-called “Lung Allocation Score.”

Stephen Harvey of Pepper Hamilton LLP, the firm representing the two children at CHOP, released a statement Monday before the OPTN decision:

“Interim change may be life saving for a very few children. The potential good it will do outweighs any effect it will have on others or the system, and the federal statute and regulation that govern the OPTN require it. The system’s reputation for fairness will be enhanced by adopting an interim policy change pending a full and thoughtful review of the needs of pediatric lung transplantation patients.”

Of the almost 1,700 people currently waiting for donor lungs, only 30 are 11 or younger.

The new policy will only be in effect until July 1, 2014 during which time the OPTN will review the implications of these measures.