Last fall’s story of A.J. Burgess, a 2-year-old boy unable to receive a life-saving kidney transplant from his previously incarcerated father has turned out well. Even though AJ’s father was rejected as a donor despite being a perfect match, AJ received a deceased donor kidney, and he has recently celebrated his third birthday. On the surface, it looks like the brouhaha was all for nothing. But this story allowed the public to get a brief glimpse behind the curtain of decision-making in organ transplantation. What that glimpse reveals reminds me why I’m not an organ donor. That’s right, I’m not an organ donor. I await the judgment of Mark Zuckerberg, Selena Gomez, and people I actually know.
I anticipate some of you saying, “But I thought you were a good person. I thought you cared about people.” And of course you will say this with a perplexed look that suggests you don’t know how I could be so callous, or even worse: anti-science. I know this look well because I’ve been the recipient of it before, usually across a dinner table with my progressive, liberal, overeducated, friends (PLOFs) who suddenly wonder whether they’ve misjudged my character for years. Here’s how the conversation typically goes:
PLOF: It’s really easy to be an organ donor; you just register at the DMV and they put this little decal on your driver’s license. [Takes out license to show me decal.]
Me: I know, but it’s kind of a big decision. They are my organs. I’m using them.
PLOF: But you can’t take them with you. Kidneys are like money that way. I mean, you don’t need them after you’re dead.
Me: True. I won’t need them. But is it impossible for someone with all of her organs to go through the eye of a needle? Oops, I mean get to heaven?
PLOF: Are you that religious?
Me: No, of course not. I don’t think we need our organs for some kind of bodily resurrection, if that’s what you mean. [I’m performing my own PLOF-iness.]
PLOF: Aren’t religions pro organ donation?
Me: If you ask a rabbi, minister, priest, or imam if saving someone’s life is ok, then they usually say yes.
PLOF: So they’re on board.
Me: As long as organ donation is framed as “saving someone’s life,” then sure. But it’s not really so simple. Organ transplantation in the U.S. is a $2 billion industry built on the free donation of organs…
Suddenly, all my PLOFs are wide-eyed and concerned. They know where the conversation is headed.
Being an organ donor doesn’t just potentially save someone’s life. You can focus on that aspect of it—and maybe you should—but there are significant social justice issues involved that aren’t apparent on the surface. Among them is distribution—or what the transplant community refers to as allocation. Most of us are aware that there’s an organ shortage, but then who gets a transplant and who doesn’t? And who decides?
Donate American, Gift of Hope, Facebook, and ORGANIZE attempt to increase organ donation with frequent campaigns, most of which feature personal stories of recipients and the family members of donors. Organ donation is depicted as selfless and heroic, which is a moving story. But if we use a telescope instead of a microscope, we get a different story—one that I’m uncomfortable being a part of at the moment.
To get an organ in the United States, you need financial and social resources. The organs are free—they’ve been donated—but the surgery, follow up visits, and medications are not free. They’re quite expensive. The estimated cost for a transplant and 180 days of follow up and medications ranges from $414,000 (kidney) to $1.3 million (heart), a cost that has to be found either in your bank account or in the bank account of your insurance company in order to get an organ transplant and live with it for six months.
As with retirement, the longer you live, the more money you will need to cover expenses. The majority of patients who receive transplants are well-insured or financially well-off, though Medicare and Medicaid have a history of covering transplants. With Medicaid in particular, the cost of the transplant is covered and three years of anti-rejection medications. After that, well, you’re on your own to pay the co-pays for anti-rejection drugs, which is about $600 per month. Since Medicaid is for people with low incomes, you can see the conflict. How do you find $600 a month for anti-rejection drugs when you’re hovering around the poverty line? On average, a transplanted kidney could last about 15 years, so getting insurance coverage for only the first three years could limit the longevity of the kidney and the recipient’s life by 80% of average expectancy.
But these financial issues obscure a larger problem: to get an organ transplant in the US, you are subjected to medical and social review by a transplant team. This multidisciplinary team consists of surgeons, organ specialists, social workers, nurses, psychiatrists, hospital administrators, and sometimes a chaplain. The medical criteria for getting an organ can be thought of as objective, though also relative to the skills of the local transplant surgeons and the level of risk they’re willing to take. The social review by the team is highly subjective, even in the best scenarios. Since donated organs are a scarce resource, the goal is often to find the best host (recipient) for the organ so that it does not go to waste.
In that environment, organs tend to go to people who can have a full-time caregiver, has family who will help with care, doesn’t take personal risks, and has a medical history of doing what doctors tell them to do. All of these fuzzy criteria require that there is someone on the transplant team who recognizes a potential patient’s behavior as understandable and relatable. Ultimately, these criteria become ciphers for minority status and financial means. Can your spouse take months off of work to take care of you? Mine can’t. Can you afford to pay an in-home caregiver? I can’t.
So the telescopic story is one of free resources and the skills of highly-trained professionals (skills gained with tax-payer subsidies) helping the well-insured and financially well-off overcome diseases and extend their lives, while medically qualified candidates without financial and social means run out of options. From a social justice perspective, this story mirrors the story of the United States in general: most of the resources flow up to the haves rather than trickle down to have-nots.
According to an AP report, “Wealthy people are more likely to get on multiple waiting lists and score a transplant, and less likely to die while waiting for one, a new study finds.” Getting put on multiple transplant lists is not the only way that the haves can get ahead in the current system; they can also move to regions where the organ shortage is not as severe. Doing so can shave years off the waiting time.
Should you be an organ donor? It’s not mine to say. Organ donation saves lives; it really does. And the professionals involved in organ transplantation are well aware of the social justice issues. Many are working on reforms. In the interim, you get to decide which story you want to be a character in: the microscopic version where you are an organ donor to a particular person in need, or the telescopic version where your organ becomes a resource in an economy that privileges those with financial means.
To return to AJ’s case, it seems that he and his father had been put on the back burner by the transplant team for social reasons. Though the organ wasn’t a scarce resource—it was donated to AJ specifically—their social situation wasn’t recognizable to the team as “normal.” AJ only received the transplant after a significant public outcry. Given that these are the fuzzy social criteria in play, until there’s a significantly revised system of review of transplant candidates I’m keeping my PLOF-y organs.
