Wanted: Young, Healthy Organs for Transplant

The New York Times recently asked “How Can Countries Encourage Organ Donation?” The column discussed several different approaches to the issue of organ donation, including opt-out systems in which all citizens are presumed to be organ donors unless they state otherwise, and talked about differing rates of organ donation in different countries, and why the differences are so radical.

The need for organs is a definite problem, and it intersects with a lot of the issues we talk about here. Some members of the disabled community need organ and tissue donations, or will need them. Others of us may be donors at some point. People in lower socioeconomic classes who  may need transplants may lack access to the services they need to get onto the waiting list, or to the social and political power sometimes needed to get a transplant in time. Minority women tend to wait longer for matches.

In the United States alone, an estimated 18 people die each day waiting for organs.

There are a whole lot of issues to talk about when it comes to organ donation, but I wanted to briefly address something brought up in the New York Times piece. Israel has become the first nation to essentially enact a “give one, get one policy.” Citizens who register as organ donors will get “priority treatment” if they end up in need of an organ transplant. Citizens also get extra points if their family members are registered as donors.

Now, I’m not saying that any allocation for organs is flawless, and in fact I have some serious problems with the administration of the United Network for Organ Sharing (UNOS) in the United States. But it is my general belief that organs should be allocated to those who need them most, regardless of donor status, race, gender, socioeconomic class, religious beliefs, and so on. The idea of creating a ranked hierarchy is, in my opinion, an atrocious one.

Here’s what our Amanda had to say about the plan in Israel:

Which I’m sure will be just lovely for people who cannot agree to donate their organs (for what reasons, I’ll let you guess). If you encourage all healthy people to get in the front of the list, what happens to all the not-healthy people? It’s basically a way to make them even less likely to get the help they need… AND you get punished if your relatives aren’t perfectly healthy too??

No. I can’t see this as a good thing.

As someone who is ineligible to donate organs, tissue, and blood, I pretty much second this. I would very much like to register as an organ donor. I’ve been criticized in the past for not having a “donor” sticker on my driver’s license, which makes for some awkward conversations when I am trying to keep my disability status to myself, but that’s not why I wish I could be a donor. I wish I could be a donor because I like the idea of being able to help my fellow humans. And I would love to be able to donate blood on a regular basis, not least because I’m O- so my blood would be pretty much useful anywhere.

But I can’t.

Does this mean that I don’t deserve organ and tissue transplants or blood transfusions?

What about other people who cannot register as donors, for whatever reasons they may have?

This policy just shames and humiliates people. I’m sure that there are lots of Israelis in a situation similar to my own, who would like nothing more than to register as donors, but who cannot. There are lots of us all over the world. We elect not to register because there’s no point in registering when we will be rejected if a situation in which our organs could be used ever comes up; why waste anyone’s time by registering when we can’t actually give?

“There are no barriers to registering as a donor,” people are often told as an incentive to sign up. But there are actually are (medical, religious, ethical), and shaming people who cannot be donors is not really a good way to increase the rate of organ donation, if you ask me. Surely there’s a way to recognize the need for donors and to try and increase the number of donors which does not involve shaming people.

About s.e. smith

s.e. smith is a recalcitrant, grumpy person with disabilities who enjoys riling people up, talking about language, tearing apart poor science reporting, and chasing cats around the house with squeaky mice in hand. Ou personal website can be found at this ain't livin'.

13 thoughts on “Wanted: Young, Healthy Organs for Transplant

  1. Thank you. I saw that and couldn’t figure out what was wrong with it. I can’t donate blood and never could (below a certain weight, blood transfusion before 1981). I’m still listed as organ donor, but with the porphyria, is that safe? Sigh. Yet another phone call in the coat closet at work.

  2. The Israel organ donation law does state that preference is given to those who opt into the organ donation program, as well as “increased priority is given to first degree relatives of those who have signed donor cards, to first degree relatives of those who have died and given organs, and to live donors of a kidney, liver lobe or lung lobe who have donated for as yet undesignated recipients.” (http://www.medicalnewstoday.com/articles/174514.php — requoted from here, because I’m lazy and would have written much the same thing in other words anyway)

    So, while one may be ineligible on his or her own, that does not immediately or entirely relegate them to the bottom of the prioritization scale. Perhaps I am speaking from a naive standpoint, but I would guess that most people have a first-degree relative whose status is not ineligible and who therefore can bolster their own status in this prioritization queue.

    I would agree that it would be a rather unfair law if it were only the individual taken into account, but I do think that allowing first-degree relatives’ choices to act as collateral for an ineligible or unwilling participant grants greater leniency and fairness.

  3. I’m listed as an organ donor (my organs probably won’t be in any shape to donate by the time I’m done with them), but can’t be a blood donor. I always got the subtle and sometimes not so subtle pressure when my son’s school was having a blood drive. The kids would get prizes if they got 2 people (usually parents) to sign up. It’s tough to explain to a child that they won’t get the prize because mommy is not doing the thing that the school assembly says is a Good Thing (TM).

    On the organ note, I know 3 people currently needing kidney transplants, one is a minority and therefore she KNOWS she will sit on the waitlist longer. There really needs to be a better system for organ donation.

  4. I can’t agree with that form of opt-in at all. From a personal standpoint, I likely can’t donate myself and I have no first degree relative who would be eligible to be on the donor list: a. since I have no blood siblings – only step-siblings, and b. my mother is ineligible as a result of multiple illnesses. (I can’t speak to the other parent’s health – I’ve not seen him since the divorce.)

    I’m pretty sure I’m not alone in being in this kind of situation, and I don’t think my transplant chances, should I ever need one, should rest on my ability to donate or that of my immediate family.

    I’ve always believed the answer to increasing the pool of prospective donors isn’t in ‘opt-out’ schemes or coercing people into organ donation. It is in talking more freely about death and people’s wishes for their body when they die. And in actually listening to people’s wishes without prejudice. Or in the ability to sign advanced consent forms to be placed in your medical records so that your wishes are carried out as you intended and not bypassed by family members who wouldn’t listen or with differing beliefs.

  5. I don’t think first-degree relatives helps much for people with small families or people with religious objections (whose first-degree relatives may well share them), for example. And even if that makes the system less unfair, it’s still unfair. It just seems like a terrible system to me.

    (Incidentally, at least in the states I’ve lived in, “organ donation” covers tissue donation and medical research as well, so even if one’s organs aren’t suitable for transplant, it can still be worth signing up if you are inclined to support that.)

    I agree with anjak- j that death and associated issues really something that needs to be talked about more. I think advance directives should be highly encouraged from 18 onward–we never know what could happen (and they’re a kindness to our families as well, or at least my dad’s was for me–although I signed forms as medical PoA, I knew that everything I was doing was what he had wanted, so I didn’t have to make any hard decisions or worry about whether I was making the right choices).

  6. “Donor 1” has been on my health card as long as I can remember – though when I hit sixteen or eighteen (I can’t recall which) I got to decide for myself if I wanted to be a donor. My brother’s card had always said “Donor 2”, but after I researched I decided to stick with Donor 1 – all viable organs and tissues. If I’m dead, I don’t need them, and maybe they’d improve someone else’s life.

    I’m definitely uncomfortable with the donation system in Israel as described in this post and above comments. There’s way too much room for abuse in my opinion.

    I like the idea of being a donor being the default, but definitely with the option to opt-out for religious/ethical/whatever reasons.

  7. I would agree that it would be a rather unfair law if it were only the individual taken into account, but I do think that allowing first-degree relatives’ choices to act as collateral for an ineligible or unwilling participant grants greater leniency and fairness.

    What? No it doesn’t. It means you’re even further fucked if your family isn’t healthy too.

  8. How does donor registration work in Israel? Whenever I’ve gotten a new driver’s license at the DMV, they always just ask if I want to be an organ donor. I always say yes, so I get a sticker; this has been the case in several different states where I’ve lived. I always figure that maybe by the time I die they’ll have figured out a use for my organs. If the process in Israel is as lax as that, I don’t see a problem with it– that is, if you just need to express a willingness to donate your organs, not the ability.

  9. I’m certainly not able to donate blood and I suspect most of my organs, but I’m signed up anyway. Maybe my corneas will be usable. I would absolutely support an “opt-out (plus family counselling)” national organ donor program over the Israeli “your body oarts are insurance” policy! But Anjak’s comment is the ideal.

  10. I don’t donate my squeaky-clean blood so that only other squeaky-clean people can have it. Seriously, Jeez.

    I have heard people complain that if they donated blood (or organs, but the conversations I had were about blood) how would they know it wouldn’t go to [category of “undesirable” and “undeserving” persons, typically a racial minority, but possibly also someone with a disease that is “their fault”]. That almost physically hurts me to hear. It makes me so angry, and hurts my feelings so deeply. Is that REALLY their reason for not donating? What does that say about a person? I don’t understand it at all. I don’t care who my blood goes to. Just let it go to someone who needs it! And if I want to donate, nobody should say a goddamn thing about it. Yes, I’ve been criticised FOR giving blood. What the fuck?

    On the flip side, I am not an organ donor, though I would probably be eligible. I don’t much appreciate being shamed on that point, as I have what are, to me, quite compelling reasons not to do that which I do not need to share with or justify to anyone else, ever, at all. I certainly don’t want an “opt-out” system in place, though I can understand the grief and desperation that leads to suggesting such measures. I have enough of a problem trusting that my wishes will be followed without having to worry about blanket assumptions being made that include doing things to my dead/dying body without my permission.

    So, yes, here, as with so many other areas of life, a person’s wishes and situations should be respected either way. Loved this post.

  11. I don’t think they want my organs anyway, but I flat out told them that as long as they’re discriminating against people with mental and neurological illnesses, they can’t have ’em. I don’t care if my liver is going to someone who (shock horror!) has a history of psychiatric illness. If they need it, they are just as deserving as anyone else, and presuming I’m done with it, then…well, I’m certainly not using it.

    But until they can assure me that they aren’t still making those kinds of value judgements on deserving sick people, I can’t do it. (And my blood, well, I don’t ever meet criteria).

  12. Many TABs cannot give blood in the US (or just to the redcross? I’m not sure and I’m hungry and tired and sore) because they had the gall to be in Europe during the mad cow scare (early ’90s).

    And since I have chronic problems, I have no problem giving blood (they certainly take a lot, why not use it?) but nope. Military people who went abroad from the East Coast are most affected and in the military, they own your body, so by the time your kid’s school drive rolls around, you’re ready.

    Last spring, one teacher had an extra credit assignment – give blood at the on campus blood bank (lifeblood? redcross? hello brain, wakey wakey), get ten points. I almost jumped across the desk, I was so pissed! However, you could get the points if you got somebody else to give blood. (Which I did. Hated that class, needed all possible points.)

    Organ donation – I checked it on my state ID card, but I don’t know if they’ll want anything.

    Naamah – I’d like to say I don’t believe (not that you’re lying) the attitudes you described. Except… yeah. I can see it happening.

    In my family, my mom and I are comfortable with what we’ll do with our bodies after we die – let others live, go to a medical school for slicing and dicing… burials are too expensive and wasteful. My sister isn’t mature enough for such a discussion. I wonder what she has on her driver’s license.

  13. Let’s not forget that the US bans gay men from donating blood and tissue. Though, generally, one is allowed to put the ‘organ donor’ stamp on one’s liscense, gay men are almost never allowed to give organs or blood (due to asinine US law, not health problems). So, if this is implimented in the US, queer men will also be disadvantaged.

Comments are closed.