Published June 06, 2013
The family of 10-year-old Sarah Murnaghan is celebrating a big victory today in the fight to save their daughter’s life.
After appealing to the court system to change the established guidelines for organ donation, a federal court judge has ordered Sarah to be temporarily placed on the adult organ transplant list, potentially increasing her chances for a life-saving operation.
Sarah suffers from cystic fibrosis and is in desperate need of new lungs. However, she did not meet the 12-year age requirement that would allow her to be listed on the adult transplant list. This means that while she is a priority candidate for pediatric lungs, she could not receive a pair of donated adult lungs until they were first offered to all other recipients 12 years and older in the surrounding area.
Because pediatric lungs are extremely scarce, Sarah has been waiting for the right lungs for 18 months. She has been hospitalized at the Children's Hospital of Philadelphia for three months and is currently on a ventilator. Doctors have said that without a transplant, she only has weeks to live.
Now that Sarah is listed as an adult on the organ transplant registry, the process of being chosen for a new pair of lungs is different. Whether or not she receives the life-saving organ will ultimately depend on how Sarah’s deteriorating health compares to other adults in the surrounding area.
It all has to do with the complex system established by the United Network for Organ Sharing (UNOS), which oversees the nation’s organ transplant system under a contract with the federal government.
A small window of opportunity
When it comes to organ donation, there are two main types of organs: abdominal organs and thoracic organs. Abdominal organs – which include the kidney, pancreas, liver and intestines – have a somewhat longer lifespan outside the body and can be donated to practically anyone across the country. For example, if a donor kidney originates in Seattle, it can be easily sent to a recipient in New York City, as kidneys have an out-of-body lifespan of 24 hours.
For thoracic organs – which include the lungs and heart – the timespan is much shorter, with lungs having the shortest lifespan of any transplantable organ. Once they are removed by a doctor, there is only a two to four-hour window in which they can be successfully transplanted into a recipient. This makes the allocation process much more complicated for lung transplants.
“Before 2004, everybody that needed a lung just waited in line for it, because we didn’t have a way to determine how urgently patients needed it compared to each other,” Paschke Anne Paschke, a representative for UNOS, told FoxNews.com. “Different diseases that affect the lungs progress differently, and that’s not the case for other organs. With the liver, it’s much easier to come up with a system because there’s similar disease progression. We also didn’t have all the data needed to study this.”
Then in 2004, a UNOS committee came up with the Lung Allocation Score (LAS) for patients over the age of 12, which determines a patient’s medical urgency combined with how well he or she will do with a transplant. According to Paschke, there wasn’t enough data for those younger than 12 to include them in the score.
For children 12 and under, they came up with a different approach, categorizing children recipients as either Priority 1 or Priority 2.
Before the judge’s injunction, Sarah was a Priority 1 pediatric candidate, meaning she was first in line to get new pediatric lungs.
What the change means for Sarah
Because lungs have such a short lifespan, the UNOS uses a zoning system, which helps locate the best lung transplant recipients based on proximity to the donor organ. Zone A includes areas within a 500-mile radius of the organ, and Zone B includes areas within a 1000-mile radius of the organ.
If a lung becomes available from a donor under the age of 11, the UNOS database runs a search of Priority 1 pediatric candidates not only in the recipient’s immediate area, but in Zone A and Zone B. If a good match isn’t found, the database performs the same search for Priority 2 patients, before opening up the search to adolescent recipients between the ages of 12 and 17.
Once a patient reaches the age of 12, the process changes. If a donor organ from someone aged 12 to 17 (considered an adolescent organ) becomes available, the database first looks for the best local adolescent recipients based on their LAS, before doing a local search for adults (17 and older). If no matches are found, they extend the search to Zone A and Zone B for adolescents and then do the same for adults.
The process is similar for adult organs. If the donor is an adult, the database looks for the best local recipients aged 12 and older based on their LAS, before extending the search to Zone A and Zone B.
For both adolescent and adult organs, these processes must be completed first before the UNOS extends the search to children under the age of 11. This created a huge problem for Sarah, because so many adult candidates were considered before her, and so few pediatric lungs ever became available.
“The optimal thing is to get a child a pediatric lung,” Paschke said. “But there are not a lot of pediatric donors and very few pediatric patients as well. Last time I looked there were approximately 20 (patients).”
Now that Sarah is considered an adult, she is no longer given a Priority score, but will instead be given a LAS, ranking her among other recipients 12 years and older. Depending on her LAS, she could either be first in line for new adult lungs, or she may still have to wait behind other adults.
On Thursday, the UNOS released a statement: "Last night (the UNOS) took the steps necessary to allow the Organ Procurement and Transplantation Network (OPTN) computer system to consider this candidate alongside adolescent and adult candidates for allocation of adolescent and adult donor lungs. She also retains her existing priority status for lungs from pediatric donors."
Meanwhile, the judge’s injunction will not only affect Sarah, but the remaining 20 children recipients could also be added to the annual adult waiting list, which currently includes more than 1,600 patients.
In the same statement, the UNOS said they will also review their organ donor policy in response to a request from Health Secretary Kathleen Sebelius.
"On Monday, the Executive Committee will review OPTN data regarding pediatric lung transplantation, including waiting time, organ offers, organ transplants, and wait list mortality," said Dr. John Roberts, president of the OPTN Board of Directors, in a statement. "If the available data suggest that a change to the lung allocation policy is warranted, the Executive Committee would be able to approve an interim policy change and expedited plan for implementation at that time."
Regardless of the politics surrounding Sarah’s case, Paschke said she hopes her story will inspire others to consider becoming organ donors, as that will help resolve the critical shortage of donor organs.
“We could save many more lives if there were more donors,” Paschke said. “(On average) 18 people die waiting every day. There are 78 transplants a day, but many more lives could be saved. All you have to do is fill out a form.”