The tragic case of 10-year-old Sarah Murnaghan, suffering from cystic fibrosis, and waiting for a lung transplant for eighteen months because the rules for organ transplantation kept her ineligible for the adult list until her twelfth birthday, reminds me of how cruel and unkind a world of black and white rules and regulations can be.
Years ago, I practiced environmental and immigration law. Occasionally, I would represent a client who fell victim to a rule that most people would deem unjust because of the way it proved to victimize my client.
For example, I’ll never forget one client, a very nice middle aged man who ran his own small business but was likely to lose that business because environmental regulations snagged him in the middle of what I can only describe as a real nightmare. By anyone’s standards, this poor man was caught in the regulatory snare because he technically fit into a rule the regulator was determined to enforce. The regulators’ determination was driven mostly by the fact that the true responsible party was essentially a complete nutcase that everyone (even the government) appeared to fear.
Since someone needed to be held responsible, the regulatory agency turned to my client on a tortured reading of the regulations. One day my client called me practically in tears over the injustice of it all. At the time, I was a young attorney in my twenties, so I found it a little awkward trying to comfort a man probably a little younger than my own father.
Unfortunately, that’s how black and white rules work. There will always be someone who most people would agree shouldn’t be subject to a given rule or regulation because to do so would be patently unjust. Still, they are technically subject to the rule so the enforcement agency does what it’s charged to do—enforce the rules—no matter how poorly written.
Two things usually happen in such cases. Either everyone adopts a “that’s the breaks—too bad for you” attitude or people are so outraged by the result that the rule is changed. Unfortunately, it usually happens too late for the poor soul who suffered the injustice in the first place. That person is held up later as sort of a martyr. For most of those people, I’m sure they would have preferred justice rather than some honored place in regulatory history.
This appears to be what’s happening in Sarah’s case. Her parents’ argument is sound. Why do we discriminate against children when it comes to organ donation? A valid response might be that an adult to adult organ donation is more likely to succeed than an organ donation from an adult to a child. Because donated organs are precious, they shouldn’t be risked unnecessarily. As one person noted in this debate, giving an organ to a person likely to die from the procedure is like “killing the donor twice.”
But from what I’ve read, great strides have been made in adult to child lung donations. Most of the child recipients are victims of disease and are likely to live longer than their adult counterparts. Also, these children aren’t partly responsible for their own medical condition. Unfortunately, many adult recipients (but certainly not all) smoked their way into their tragic state.
When first confronted with this case, Health & Human Services Secretary Kathleen Sebelius gave one of the best bureaucratic answers I’ve ever heard. According to her, since she couldn’t really be expected to take every case on an individual basis, she trusted the myriad of bureaucratic bodies that put set rules in place to work their magic. If they failed Sarah, it wasn’t her fault. That’s just how the system works. While she didn’t come right out and say the last part, clearly that’s what she meant.
Since then, a federal judge has intervened and put Sarah and an 11-year-old boy on the adult organ donor list. Also, one of the bodies charged with making the organ donor rules met this week and temporarily changed the rule while they examined it further.
Likely, Sarah’s case is what prompted this change. Hopefully, she’ll benefit from the opportunity she has to receive transplanted lungs and not prove to be one of those martyrs who prompted a much needed change in the rules but was too late to benefit from them.