Sarah is dying.
Hospitalized for over three months at Children’s Hospital of Philadelphia, Sarah’s mother has been forced to watch her sweet baby girl slowly, but surely, die before her eyes. Sarah has end-stage Cystic Fibrosis and she will die within 3-5 weeks unless she receives a lung transplant. CF affects more than 30,000 kids and young adults in the United States. It disrupts the normal function of epithelial cells — cells that make up the sweat glands in the skin and that also line passageways inside the lungs, liver, pancreas, and digestive and reproductive systems. Although lung transplant is not a cure for CF lung disease, life expectancy and quality of life can be improved.
Sarah has been waiting for a donor for a year and a half, although she is the top candidate on a priority list for children in her region. Janet Murnaghan recently learned that if Sarah were 12 instead of 10 there would be a greater likelihood for her to receive adult lungs. Current rules state that in order to determine who will be the top candidate for an adult organ transplant, people aged 12 and older are ranked in order of need. Since Sarah is below the minimum age, everyone 12 and older in the region with her blood type will be offered the lungs first, her parents say, even those more stable and with less severe conditions. But, Sarah has been found to be a candidate for an adult lung–an adult lung that can save her life.
“That’s insane,” Murnaghan said. “It shouldn’t be about their age. If she’s the sickest person, she should qualify.
In response to the public outcry, OPTN explained the rationale for having age categories for transplants in a recent post on their website:
“The biological needs and circumstances of candidates younger than age 12 are different from either adolescent or adult candidates. One key difference is the size and lung capacity of donors and patients among these age ranges. For this reason, lung allocation policy differs for these groups of candidates and is designed to suit their unique needs. Children younger than age 12 have priority for all donors of similar age and size within a 1,000-mile radius before any older candidates would be considered. In some circumstances, a transplant center may determine that a child’s condition warrants a reduced size transplant from an adult donor. If the center wishes to consider this additional treatment option, these children will have access to adult organs once they are offered to adolescents and adults in the same allocation zone.
In 2012, there were 460 pediatric organ donors in the United States, including 114 between the ages of 6 and 10 years. Although there were only 11 lung donors in that age group, that number likely reflects low demand (two lung transplants in recipients aged 6-10) as much as organ availability.
OPTN policies allow status adjustments for specifically defined groups of candidates with unique medical circumstances not addressed by the overall policy. A request to adjust the status of a patient under age 12 so that they may be included in the allocation sequence for adolescents and adults is not within the scope of the existing lung allocation policy.
OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others. However, the network routinely reviews organ allocation policy to be sure that it reflects the needs of all groups of candidates. In this review process, the OPTN considers public input as well as medical data and experience….”
Kathleen Sebelius had previously sent a request to the Organ Procurement and Transplantation Network that called on officials to look at the age categories used in lung transplant cases after Sarah’s parents went on Change.org to petition for the rules to be changed. As of Saturday, the petition had received more than 260,000 signatures. Sebelius asked that a “transparent, deliberative” review be done as soon as possible “with the intent of identifying any potential improvements to this policy that would make more transplants available to children” consistent with the goals of fairness and best use of organs. She said the disparity between donors and children awaiting transplants is “especially stark” with only 20 lung transplants last year involving organs from donors up to age 11. She also said she is asking federal officials to “consider new approaches for promoting pediatric and adolescent organ donation.”
“With 1,819 pediatric patients on organ transplant wait lists and only 852 pediatric organ transplant donors each year, it is especially clear that we can and should, if possible, do more to encourage the public to become registered organ donors,” Sebelius wrote.
Sarah’s father, Fran Murnaghan, told ABC News Sunday that Sebelius’ mandate for review of transplant policies would not deal with current cases in a timely manner, nor deal with what he characterized as an unequal system that discriminates against children younger than 12.
On Tuesday, the U.S. health secretary turned down appeals to overrule the federal regulation that could save the life of Sarah while House Republicans accused Sebelius of refusing to save Sarah at a House Education and the Workforce Committee hearing on her department’s budget.
“I’m begging you… She has three to five weeks to live. Please suspend the rules,” Pennsylvania Rep. Lou Barletta urged Sebelius.
“It simply takes your signature,” Georgia Rep. Tom Price, a former doctor and one of the Republican Party’s most active House members on health policy, told Sebelius.
Sebelius described her decision as ‘incredibly agonizing’ when she told the congressional panel that she wouldn’t intervene to save the dying Pennsylvania girl.
“Sarah is being left to die,” Murnaghan said. “Not only Sarah, but there are many other children in the same situation.” “[Sebelius] clearly has the authority to do something now, and she has decided to do, to be honest, not much of anything,” he said. “In my opinion, she has kicked the can down the political road.”
But, Sarah’s family is still fighting for their little girl. They filed suit Wednesday to challenge organ transplant rules that say children under age 12 must wait for pediatric lungs to become available, or wait at the end of the adult list, which included adults who aren’t as critically ill. U.S. District Judge Michael Baylson suspended an age factor in the nation’s transplant rules for 10 days for Sarah Murnaghan because of the severity of her condition.
The girl’s family believes that is enough time to find a match.
There are many, however, questioning Baylson’s decision for medical and ethical reasons. One of those speaking out is Dr. Arthur Caplan, a renowned medical ethicist at New York University Langone Medical Center. According to Dr. Caplan, the age regulation exists is because lung transplants are the most difficult of organ transplants and children fare worse than adults. He called it troubling, and perhaps precedent-setting, for a judge to overrule that medical judgment, and predicted a run to the courthouse by patients who don’t like their place on the waiting list.
“I’m not sure I want judges or congressmen or bureaucrats trying to decide what to do with organs at the bedside,” Caplan said.
The case of Sarah has caused mounting questions from an ethical and medical standpoint to rise to the forefront of public opinion due to the very nature of the existing policy for pediatric lung transplants.
One issue resolved? The lack of transplant donors, both adult and pediatric.
“Today, the success of the U.S. organ transplantation system requires the cooperation of many people and highly sophisticated technology. And it is all dependent on gifts of selfless generosity from donors and families who have chosen to enhance the lives of others through organ donation.
Advances in transplantation science are helping to save more lives than ever. But there is a critical shortage of organ donations and a continually-growing list of patients waiting for a lifesaving transplant, because there simply aren’t enough organs for everyone who needs them…” Organ Procurement and Transplantation Network
Please visit the link provided for more information on becoming an organ donor–for Sarah’s sake.