One of the (many) major disruptions that social media has brought to our modern world is the ability of ordinary persons to reach out to large groups of people for support. Sometimes, this support looks like a ko-fi or a patreon page. Sometimes it looks like a kickstarter for a new business idea or a gofundme for some particular need, and sometimes it looks like a Facebook post begging for a kidney donor.
Ah yes, in the world of social media, those of us at the bottom of the food chain, so to speak, are enabled to ask the benevolent masses for all sorts of items related to healthcare, from funding the costs of some medical procedure, to simply outright asking for a part of their body.
On the surface, this seems like a good thing. It enables those desperately in need to have some respite should the strangers on the interwebs be moved by their plight, and it some cases, it also moves those strangers to just be better in general and support some other cause even if they can’t help out the poster themselves, such as what happened in the wake of the Humbolt Bronco’s crash.
However, this trend has some deeply worrying implications, and is not the way to solve healthcare crises.
Questions and Concerns
One of the biggest problems with this scheme is that it is inequitable. Whether or not someone’s post gets seen by the right people, the right media organizations, whether or not it goes viral, all of these are a result of random chance, and not the random chance of a donation list organized by need and length of time on the list. Whether or not an individual should get life saving medical attention or resources should not be the result of such chances.
But isn’t it better that some individuals get help rather than not? You might ask.
Sure, but the success stories of individuals who have gotten a kidney/$100,000 for x procedure/ bone marrow/whathaveyou create apathy towards changing the system so that everyone can have access to these things. If you see someone has gotten a kidney through social media, you may be less likely to sign up as an organ donor if you figure that if someone is really in need they can find a match and get it at that point.
This system can also create a voyeurism for people’s suffering. Suffering can be an intense and private thing. While some individuals may find it cathartic to share their suffering, others may not. It is good to know what others go through, that creates empathy and compassion. On the other hand, the normalization of such things can create an appetite for the gruesome details of someone’s incredibly painful experience which is not for the suffer’s benefit, but rather for the viewer or reader’s entertainment.
Additionally, when someone posts their intimate medical details in the public sphere, it risks opening them up to public scrutiny, trolling, potential doxxing, and any other manner of unwanted harassment and commentary. This should not be the price of entry to receive life-saving medical treatment and resources.
Things we should be doing instead
So, if social media is not the answer, what is?
Several schemes for organs in particular have been posited in the past: criteria based on sickness, on a first-come-first-serve basis, on the perceived “value” of the patient in question, to those with dependents, to women and children first. Anonymous review committees have been formed in the past, and yet have faced public backlash for decisions such as denying a kidney to a known prostitute on the basis of her being a prostitute. These questions are so difficult because in many cases, they are matters of life and death and so those who make these decisions must make decisions about which lives from some group are worth saving. If this kind of decision cannot be left to a panel of professionals, do we really think it should be left to the masses of the internet?
There is no good way to make these decisions, but there are ways to help having to make them at all. One of these ways is with public healthcare and mandatory organ donation schemes, or at a bare minimum organ donation schemes which require an opt-out rather than an opt-in. There will still be shortcomings, but if there is an increase in resources to the systems that make these decisions, less decisions that deprive individuals of a valuable life will need to be made.
I’ve heard the saying that in some jurisdictions that are anti-choice a dead body has more rights than a pregnant woman. This is true. But in areas where organ donation is not mandatory a dead body’s right to… sanctity? religion? (I honestly still haven’t figured out exactly why individuals don’t want to donate their organs) still trumps someone’s right to life, and that is something that to me simply does not make sense.
So please, if you’re in a jurisdiction where organ donation is not a mandatory thing, sign up. I promise you you will not miss them once you are gone. Support policies and taxation schemes that provide adequate healthcare to the point that individuals do not need to fundraise to have their healthcare, pharmacare, or mental health needs met. These things are not things that should be decided the way we decide who is going to be Prom Queen at the high school dance.