More Than Sarah Murgahan
With the Sarah Murgahan situation concluding, I just wanted to pop in and give my personal opinion. Obviously I have a fair amount of bias, just as a warning/disclaimer.
Her specifically: good for her. As in, it’s good news for her that her parents were able to push for her and get a special injunction and all. But what of the adults she bumped down a spot? Time is precious on the waiting list. I’m not saying the parents shouldn’t have done it, or even that it was a bad thing necessarily, just that everyone forgets the other side of the equation, the person (the adult, or perhaps even child over 12) that got dumped down the list, that maybe didn’t get their lungs in time as a result. There’s also other factors going into the determination of who gets lungs: location, how likely they are to survive afterwards, how sick they are (as evidenced by her difficult recovery process). Here is a nice article from USA Today talking about some of those questions. It’s interesting to me, too, that I haven’t read anything from Sarah’s doctors, or anyone form her hospital. They did the transplant, sure, but I wonder if it is telling that they didn’t join the parents in pushing for Sarah to get adult lungs.
This, I’ve learned from this article, is known as the “rule of rescue,” where people focus on one single, compelling person who needs to be saved. That’s what motivates them- that’s what Sarah is. They forget the others who are in the same situation; it becomes “well just give her lungs!” But it’s not that simple. If you “just give her the lungs” you are taking them from someone else who needs them just as badly. (I’m not even sure if she was put on top of the list due just to her LAS or because of the attention.) Because organs are in very short supply. The debate seems to have coalesced around the bureaucratic aspects of the lung transplant (or, indeed organ transplant (Tx) in general). Rules for who can get what and when, and who can’t. But all of that is kind of moot if you don’t even have lungs to fight over. All types of organs are in short supply, actually, but lungs and hearts moreso, it seems to me, since they can’t really do living donor Tx (ok, lungs you can I guess. But not with CF or bacteria from your natural sickly lung will promptly ruin the new one.) The first, failed transplant which she wouldn't have gotten without the attention failed, so that is a blatant waste of a pair of lungs. No one benefits from that priceless gift now.
People are also missing an opportunity to campaign for organ donation amidst this compelling demonstration of its importance. People who are otherwise educated and unsuperstitious (like my friends) have awful misconceptions about it (that doctors won’t try to save you if you’re a donor, to name the most troubling) which prevent them signing up. But we do need donors, desperately. And this situation opens up attention to the issue so any campaigns could reach a wide audience who otherwise wouldn’t be paying any attention.
Of course, I also saw some responses that went beyond troubling to actually disturbing. Here’s an article suggesting that the whole affair for Sarah cost too much money and was it worth it? It’s from American Conservative, so of course it’s biased as all hell. It goes on about PPACA at length; people do want more healthcare, but not to pay ridiculously large amounts of money for it. They want market value care, not care priced to include overhead for execs and donors and what have you. They want more care in that they want to be able to afford more without going into bankruptcy. Also, tying this debate to poor Sarah is odious. Appeal to pity is a logical fallacy for a reason.
I read another article suggesting, as the one from Slate does, that the time has come for a market system for allocating organs. He goes on to say how “with proper design” it wouldn’t disadvantage the poor because the government or insurance companies would buy the organs. But what about the poor who risk their lives to sell their organs? Or those who don’t have coverage even under PPACA? And given government bureaucracy (which the case clearly demonstrated) and insurance company’s emphasis on profits/pleasing shareholders, you know there’d be tremendous red tape and waiting. And private (wealthy) citizens could always come in and offer more money than the government ever would- unless they make it illegal for individuals to buy organs, which is really creepy. A large multifaceted entity can own a body part, but an actual person can’t?
I guess the main point of this post here, then, is to say that the attention given to the Murgahan case is the wrong kind of attention. I even saw several articles (ok, one picked up by several outlets) arguing that the Tx would essentially cure her cystic fibrosis. Sorry, but no. That is an oversimplification on a large scale. Her new lungs will not have CF, but the rest of Sarah’s body will. And the bacteria killing her will still be all in her sinuses. (In fairness, later stories specified this). But at any rate, advocates for organ donation, CF, or perhaps similar diseases, are right to seize this opportunity to get their message across to a wider audience already primed to be generous and compassionate. And on the broader level, the whole situation invites us to look past one strong ten-year-old and her tenacious parents to the many faceless, not-publicity-seeking others waiting for Tx, or indeed directly affected by any government decision. Poster children work, but they oversimplify complicated issues.
Her specifically: good for her. As in, it’s good news for her that her parents were able to push for her and get a special injunction and all. But what of the adults she bumped down a spot? Time is precious on the waiting list. I’m not saying the parents shouldn’t have done it, or even that it was a bad thing necessarily, just that everyone forgets the other side of the equation, the person (the adult, or perhaps even child over 12) that got dumped down the list, that maybe didn’t get their lungs in time as a result. There’s also other factors going into the determination of who gets lungs: location, how likely they are to survive afterwards, how sick they are (as evidenced by her difficult recovery process). Here is a nice article from USA Today talking about some of those questions. It’s interesting to me, too, that I haven’t read anything from Sarah’s doctors, or anyone form her hospital. They did the transplant, sure, but I wonder if it is telling that they didn’t join the parents in pushing for Sarah to get adult lungs.
This, I’ve learned from this article, is known as the “rule of rescue,” where people focus on one single, compelling person who needs to be saved. That’s what motivates them- that’s what Sarah is. They forget the others who are in the same situation; it becomes “well just give her lungs!” But it’s not that simple. If you “just give her the lungs” you are taking them from someone else who needs them just as badly. (I’m not even sure if she was put on top of the list due just to her LAS or because of the attention.) Because organs are in very short supply. The debate seems to have coalesced around the bureaucratic aspects of the lung transplant (or, indeed organ transplant (Tx) in general). Rules for who can get what and when, and who can’t. But all of that is kind of moot if you don’t even have lungs to fight over. All types of organs are in short supply, actually, but lungs and hearts moreso, it seems to me, since they can’t really do living donor Tx (ok, lungs you can I guess. But not with CF or bacteria from your natural sickly lung will promptly ruin the new one.) The first, failed transplant which she wouldn't have gotten without the attention failed, so that is a blatant waste of a pair of lungs. No one benefits from that priceless gift now.
People are also missing an opportunity to campaign for organ donation amidst this compelling demonstration of its importance. People who are otherwise educated and unsuperstitious (like my friends) have awful misconceptions about it (that doctors won’t try to save you if you’re a donor, to name the most troubling) which prevent them signing up. But we do need donors, desperately. And this situation opens up attention to the issue so any campaigns could reach a wide audience who otherwise wouldn’t be paying any attention.
Of course, I also saw some responses that went beyond troubling to actually disturbing. Here’s an article suggesting that the whole affair for Sarah cost too much money and was it worth it? It’s from American Conservative, so of course it’s biased as all hell. It goes on about PPACA at length; people do want more healthcare, but not to pay ridiculously large amounts of money for it. They want market value care, not care priced to include overhead for execs and donors and what have you. They want more care in that they want to be able to afford more without going into bankruptcy. Also, tying this debate to poor Sarah is odious. Appeal to pity is a logical fallacy for a reason.
I read another article suggesting, as the one from Slate does, that the time has come for a market system for allocating organs. He goes on to say how “with proper design” it wouldn’t disadvantage the poor because the government or insurance companies would buy the organs. But what about the poor who risk their lives to sell their organs? Or those who don’t have coverage even under PPACA? And given government bureaucracy (which the case clearly demonstrated) and insurance company’s emphasis on profits/pleasing shareholders, you know there’d be tremendous red tape and waiting. And private (wealthy) citizens could always come in and offer more money than the government ever would- unless they make it illegal for individuals to buy organs, which is really creepy. A large multifaceted entity can own a body part, but an actual person can’t?
I guess the main point of this post here, then, is to say that the attention given to the Murgahan case is the wrong kind of attention. I even saw several articles (ok, one picked up by several outlets) arguing that the Tx would essentially cure her cystic fibrosis. Sorry, but no. That is an oversimplification on a large scale. Her new lungs will not have CF, but the rest of Sarah’s body will. And the bacteria killing her will still be all in her sinuses. (In fairness, later stories specified this). But at any rate, advocates for organ donation, CF, or perhaps similar diseases, are right to seize this opportunity to get their message across to a wider audience already primed to be generous and compassionate. And on the broader level, the whole situation invites us to look past one strong ten-year-old and her tenacious parents to the many faceless, not-publicity-seeking others waiting for Tx, or indeed directly affected by any government decision. Poster children work, but they oversimplify complicated issues.