Navigating Transplant Lists Leaves Children Consistently Marginalized
Travel back in time to the day you made your first friend in kindergarten, finally spoke a complete sentence without stressing the wrong syllables, and earned your first dollar from the tooth fairy. Now imagine that as you were experiencing each of these momentous occasions, you were suffering from a chronic illness affecting your brain, heart, or liver. All you know is that everything seems to hurt constantly and that not taking the medicines your parents force down your throat before bed would mean difficulty concentrating at school the next day. Little did you know that you were blindly fighting an uphill battle to swap out one of your dysfunctional organs for a stranger’s functional one.
From 2002 to 2016, 400 children died waiting for liver transplants . Imagine collectively, then, how many children died waiting for transplants of each of the transplantable organs. It requires little to no brain power to add a name to a seemingly never-ending list of children desperately waiting for a chance at a lifeline. Yet, that simple addition of a name to such a list is a symbol of hope for children who have their lives ahead of them and, of course, for their loved ones. But what if that symbol of hope has consistently been falsely projected? Researchers at the University of Pittsburgh have shown that it has been indeed just that.
Children have time and again been marginalized in the way their symptoms are assessed and are thus scored in relation to other patients, specifically adults, waiting for a liver. Children under the age of 12 are scored based on a rubric known as the Pediatric End-Stage Liver Disease (PELD) model, while individuals over the age of 12 are assessed using a rubric referred to as the Model for End-Stage Liver Disease (MELD). A thorough comparison of the two models shows that MELD accounts for complex factors such as whether the patient received dialysis in the week preceding assessment. On the other hand, PELD typically only considers the child’s age and illness severity, and was shown to repeatedly underestimate 90-day pretransplant mortality rate calculation . As a result, pediatricians have increasingly felt the need to raise “exception points” to emphasize the extent to which a child is reliant on receiving a liver transplant in a timely manner . In a society that has found sophisticated ways to deal with many arguably more medically pressing issues, it is insensible to have such discrepancies in qualification of organ transplant need. Therefore, it is absolutely crucial to standardize the way in which children are considered for organ transplantation and keep pediatricians from stretching their medical authority to do their duty to a patient.
United Network for Organ Sharing (UNOS) follows a policy whereby 80% of children requiring organs receive them from other children. The remaining portion of child organs are set aside for adults living locally rather than for children living abroad who may be in greater need of them. Moreover, adults have the benefit of receiving organs from both adults and children, while children are limited solely to the population of children donors. The researchers partaking in this study showed that 500 deceased liver transplants have been done in the past decade, with adults receiving ten times the number of transplants as children do, noting that this proportion is incrementally rising by 10% each year . Given that the population of senior citizens has been growing at an unprecedented rate, this trend makes sense. However, that should not by any means undermine the need to address this blaring discrepancy in health care access between different age brackets.
Worldwide, other countries have been successful in implementing and manipulating a uniform set of criteria to assess liver transplant need between adults and children, specifically based on 90-day pretransplant mortality rate calculations. So what exactly is holding back the United States? The Organ Procurement and Transplantation Network (OPTN) predicts that proposals for possible reform will be available for discussion by August 2019, about a year after this finding has been published . Is such an extended wait warranted? Evidently, thorough research is needed to revamp this system to prevent overlooking crucial criteria, but a sense of urgency must be equally prioritized to add integrity to the organ donation system and to equalize the process by which children in the U.S. can receive organ transplants.
Chung-Chou Chang et al., “Accuracy of the Pediatric End-stage Liver Disease Score in Estimating Pretransplant Mortality Among Pediatric Liver Transplant Candidates”, JAMA Pediatrics, September 17, 2018.
Maggie Fox, “Children lose out on liver transplants, study finds”, NBC Health News, September 17, 2018.