Obama’s Patient Protection and Affordable Care Act seeks to help people stay healthy, and while it’s too early to gauge the effectiveness of that particular law, at least one current federal health care law could have directly led to one girl’s death were it not for a judge’s timely intervention.
Ten year-old Sarah Murnaghan suffers from cystic fibrosis, and according to her parents, was recently facing only a few more weeks of life. Her only hope of a longer life was to receive a lung transplant. Unfortunately, the United Network for Organ Sharing (UNOS), a contractor with the Department of Health and Human Services, has an “Under 12” rule, which gives transplant priority to patients aged 12 and older over younger patients, regardless of condition. DHHS Secretary Kathleen Sibelius had refused to lift the Under 12 rule for Sarah, all but dooming her to an early death. Murnaghan’s parents brought a suit against the DHHS as a result.
That’s when federal Judge Michael Baylson ordered Sibelius to lift the Under 12 rule for Sarah, allow her to be given priority over older patients based on the severity of their condition, though only for ten days. Baylson added that he might extend the order to other children if requested to do so, as there are three other children in the same hospital in similar conditions.
The judge’s ruling is undoubtedly a godsend for Sarah and her family, but is judicial/political involvement ultimately desirable? Sibelius’ reason for not intervening was her belief that politicians and bureaucrats should not be involved in making organ allocation decisions (and indeed, she may lack the authority to intervene). This view was echoed by bioethicist Arthur Caplan, who cautioned that the politicization of the system could open the door to unnecessary political involvement. The justification for these worries is that these groups lack the relevant knowledge and face certain pressures, reducing their ability to make responsible decisions.
While medical professionals indeed ought to be in charge of organ allocation systems, it might be helpful to have an outside check on their decisions, the Murnaghan case suggesting why. That said, the fears of politicization are reasonable, and while having an independent medical board serving as a check may be ideal, judicial involvement may be inevitable given the DHHS’ involvement with organ transplants.
As for the Under 12 rule, which the Murnaghan’s attorneys portrayed as an outdated attempt to deal with a lack of information necessary to build an effective child-organ database, it is partly reasonable: generally speaking, adult organs are better suited for adults, and child’s organs, for children. Yet the rule’s flaw is more important: it fails to take medical suitability into account insofar as an organ can go to someone who has less need for it. Since adult organs can be given to children, it is hard to see how this is justifiable.
Pulmonologist Stuart Sweet claims that it is difficult to compare the severity of illness between children and adults, when such comparisons can be clearly made, it would be wrong to let someone’s age count against them, within certain constraints. A superior rule would allocate adult organs based first on intensity of need, and secondly on compatibility; under this scheme, an adult lung would go to Sarah before going to an adult with a less intense need. Of course, the differences between an adult and child organs may be enough to create exceptions to this rule.
The scarcity of organs means that there must be some method of determining how to allocate organs amongst patients. Bioethicists and health professionals have long debated what the most ethical way of allocating organs would be, but as important as this issue is, ultimately the more important issue is how to increase the supply of organs.
The two main approaches of doing this are to allow markets for organs and developing the technology to grow organs in labs. Both face a decent amount of criticism, but both would undoubtedly increase the supply of organs available for transplant, making scenarios like Sarah Murnaghan’s less and less common. Growing organs will probably prove to be the more widely acceptable approach, and the technology to do so on a cost-feasible scale is rapidly approaching, thanks to stem cell and 3D printing technology.
Until that day arrives, we owe it to the Murnaghans and the over 100,000 persons on the (American) organ waiting list to make organ allocation a more prevalent topic of discussion. By doing so, we can help improve the allocation system, speed along the increase in supply, and save more lives.