Hello everyone, I am here to ruin your week by telling you the most tragic thing you’ve ever heard (there’s like, a very small bright spot at the end, but still). On Tuesday, U.S. Secretary of Health and Human Services Kathleen Sebelius determined that she would not intervene in a case involving a young Pennsylvania girl who will die without a lung transplant. The girl, 10-year-old Sarah Murnaghan, suffers from end-stage cystic fibrosis, a genetic disease that attacks the lungs and causes life-threatening infections. For the last three months, Sarah has been hospitalized at Children’s Hospital in Philadelphia. She is unable to breathe without the help of a ventilator.
Already this fucking sucks and I haven’t even told you the worst part! Typically, kids Sarah’s age are not able to join the transplant list for adult lungs. Only kids over 12-years-old can join the adult waiting list, but Sarah’s doctors think this is bunk. They say there’s no medical reason why she should be denied an adult lung, but they are constrained by the age policy of the non-profit organizations that oversee the transplant list. THERE AREN’T ENOUGH SWEAR WORDS FOR HOW SHITTY THIS IS.
Sarah’s family posted a petition on Change.org last month asking those organizations, the Organ Procurement and Transplantation Network (OPTN) and the United Network for Organ Sharing (UNOS), to change their policies to allow pediatric patients to receive adult lungs where medically necessary. In other words, “please change your policy so that sweet children don’t die for no reason.” The petition received more than 300,000 signatures, but OPTN and UNOS were apparently unmoved. A spokesperson for UNOS says that policy changes need to be undertaken slowly to ensure the safety of the pediatric patients on the waiting list. The president of OPTN, Dr. John P. Roberts, maintains that it’s too difficult to weigh the risks when it comes to transplanting an adult lung to a pediatric patient—that there’s no way to measure a pediatric patient’s chance of survival. Dr. Roberts worries that Sarah may die if she gets an adult lung transplant, but she’ll definitely die if she doesn’t. I’m no doctor (I’m more like a clown fart with a law degree) but why not just give Sarah a goddamn lung?
Republican lawmakers took up the Murnaghans’ cause at a House hearing on Tuesday morning. Rep. Lou Barletta, Republican congressman from Pennsylvania, begged Sebelius (he literally said, “I’m begging you”) to remove the age requirement as a barrier for Sarah’s transplant. Sebelius, although she acknowledged that this situation is “agonizing,” declined to get involved and said that decisions like these should be left up to medical experts. She did request that OPTN and UNOS review their transplant policies “with the intent of identifying any potential improvements to this policy that would make more transplants available to children.” In other words, “Ummmm…no thanks, guys.”
I can’t really fault Sebelius for trying to bow out of this mess. The Department of Health and Human Services is probably terrified of setting the precedent that if your child is suffering from the most heartbreaking health circumstances ever, all you have to do is ask and Kathleen Sebelius will fix it. As Sebelius herself pointed out, her involvement in this case would be unfair, especially considering that there are other children in the same hospital as Sarah who are suffering just as severely. This individual case is horrible, but Sebelius is in charge of all Americans’ human and health services, not just “that one guy’s health and human services.”
Without a lung transplant, Sarah has just three to five weeks to live. So this morning, the Murnaghans filed a complaint in federal court asking U.S. District Judge Michael Baylson to prevent the Department of Health and Human Services from enforcing the age requirement. Judge Baylson has apparently sided with the Murnaghans and ordered that Sarah be added to the adult transplant list. This is huge for the Murnaghan family—but this small victory in federal court is unlikely to make a difference for the other sick children who would benefit from a permanent change in the transplant age policy.
A change to the age requirement would significantly benefit children who need transplants, because there are simply not enough juvenile organs to go around. Last year, only 10 lung transplants were performed on kids under 10-years-old. This probably has less to do with need and more to do with the availability of juvenile organs—by way of comparison, 1,744 lung transplants were performed on people 11-years-old and older during that same time period. Access to adult organs would, obviously, have a major impact on children at risk of dying on the waiting list. And if their doctors are fine with transplanting adult lungs, what’s the hold up?
I’m glad the Murnaghans are facing a little less uncertainty and despair this afternoon, but I’m still bumming hard for the kids who don’t have the benefit of national media attention and are suffering as a result. No kid should have to die just because of an inflexible policy that prevents their doctors from performing a lifesaving operation.
By the way, you can find out how to become an organ donor here. Now, please pardon me. I have to go cry into a pillow.
Meagan Hatcher-Mays is a recent graduate of Washington University Law School in Saint Louis. She does a significant amount of yelling on Twitter.