Saving a Life is Easy, But I Didn't

http://www.danshapiro.com/blog/2011/11/saving-a-life-is-easy-but-i-didnt/

by randfish • 15 years ago

390 98 15 years ago

dholowiski• 15 years ago

Shit. Can anyone post the links for other countries (like Canada) to donate? I'm signing up tomorrow. If you want to really affect someone else's life, this is a way better way than building some web-app.

azov• 15 years ago

That's what the developer of marrow.org might have thought. And then:

> I fussed around with the website to update my contact data

If someone did a better job designing or testing the UI on that web app, who knows how many extra lives may have been saved.

When I think about it, I've worked on at least three projects where bugs or usability issues could potentially have a direct impact on someone's life. Yet we didn't reflect on it much in the course of our day-to-day routine.

Being a donor is a bold action, but don't underestimate the impact of your development work as well.

IgorPartola• 15 years ago

At one point I worked on reviewing the code for an emergency alert system for a university. Our group made it really simple not notify 60k people of all sorts of emergencies, through a really simple UI. We had it calling, texting, emailing, updating Facebook and Twitter and displaying messages on TV screens.

We also had an equally important test system so the campus police could test their familiarity with the procedures daily. This is the kind of app that saves lives; hence the line-by-line code reviews of every single change to the application, and backup procedures for backup procedures in case something breaks.

It is true, not every day you get to work on something like that. However, when you do, it always makes the hair on the back of your head stand up each time you find a bug.

nknight4• 15 years ago

Ouch.

To the extent it's still relevant in the modern world, our postal system really needs to work a little more like the phone system.

I can be pretty much anywhere in the US (or really, the world, if I want to pay international roaming fees), someone can dial my well-known phone number, and my phone will ring.

For ordinary first class mail, I should be able to generate unique ID numbers on the USPS's website, and associate them with any physical US address I wish at any time. Then I can keep one or more postal IDs pointed at the location(s) I actually receive mail at, and the scanners (virtually all mail is routed by optical scanners now, even hand-addressed envelopes) can just read the ID number and stamp on the current physical address.

there3• 15 years ago

according to the story, the post office did better than any phone provider would. he moved to a new location, maybe years later, and a piece of mail still followed him to his new address. i'm sure the registry gets notified of forwarding address changes for people on their lists, so they could in theory keep up with you even if you moved a bunch of times (as long as you forwarded from at least your last address).

if you get a new phone number, your old one probably won't forward to you, and once someone else has that new number, you will never get forwarded calls. at least with a mailing address, new people can occupy that same old address but any mail to it will still forward based on your name.

nknight4• 15 years ago

I seriously doubt the post office had much to do with tracking him down. My repeated experience with the USPS is that they pay absolutely no attention to mail forwarding requests, ever. It's far more likely that someone at the matching network did some googling.

And I don't need a new phone number, that's kind of the point. I can switch providers and still keep my number. I can move to the other side of the country and keep my number. That's what I want out of the post office.

biot• 15 years ago

It appears to not have been the post office that "did better than any phone provider would":

  > Did you know that, when the marrow donation center finds a
  > match, they try desperately to reach the potential donor?  Even
  > if that person has moved from their dorm room long ago, even if
  > their contact information has changed, even if they’re in a
  > different state, even if 16 years have passed?  They try.  They
  > look all over for ways to reach that person.

itsnotvalid3• 15 years ago

You have to pay for mail forwarding and in case for a address that old it probably didn't really something worthwhile. But we have email addresses now.

incomethax• 15 years ago

Isn't that essentially what a PO Box is? The only caveat with a PO Box is that it's specific to a zip-code, but the principle is the same.

I can't help but think that there might be a business idea wrapped up in there somewhere, or at the very least, another product for USPS to offer.

nknight4• 15 years ago

There are mail forwarding services out there already, but they cost money and exist at the whim of private enterprises that could disappear at any time.

there3• 15 years ago

ups offers mail forwarding for mailboxes at their stores - http://www.theupsstore.com/products-services/mailbox/Pages/i...

some other smaller companies do receiving and forwarding, some will even scan the mail you receive so you can view it online and see whether it's junk mail or not - http://www.virtualpostmail.com/

JoshTriplett• 15 years ago

http://www.earthclassmail.com/ would help with this kind of problem.

botker• 15 years ago

What you're proposing is basically the analog of DNS. We would have seen this years ago if only there was any real competition in the postal space.

AndyKelley• 15 years ago

Cool idea. Simpler one: the marrow donor place could collect email address instead of home address.

itsnotvalid3• 15 years ago

They do collect email address now, but the author registered in 1995 and there were handful of people having an email address back then.

PotatoEngineer• 15 years ago

That wouldn't have helped me when I was in college; my college stopped supporting my email address after I left. (They also had this weird email client called Simian that you had to use, and it wouldn't let you read your email until it had authenticated.)

pgroves• 15 years ago

I had a high-school teacher that told us you could write a SSN on an envelope and the postal service was required by law to get it to the person. He claimed to have tried it out by sending himself a letter, but it took many months to arrive.

You'll notice from my hedging that I only half believe the story. Also, it may be a true story, but may have happened in the '50's or something.

mindslight2• 15 years ago

AFAICT, mail forwarding is done by the local post office that would have delivered the mail. So mail headed to CA gets to your local CA post office, gets a yellow sticker on it, and gets stuck back in the mail. Mail originating in MA, destined for a CA, and forwarded to MA, does indeed cross the country twice. And routing loops loop, true story.

How do they submit forwarding updates to remote post offices? Well, they've already got an in-house network with QoS guarantees, so of course they use that. Yes, I'm referring to letter delivery itself - a good lesson in technology sticking around because it "works".

They do have a new service called "premium forwarding" or something where they want to gouge you something like $20/mo for making their life easier too (and to encourage you to use it, they take away the ability to update your normal forwarding online!). It's bureaucracy, perverse incentives abound! I've also heard (from a letter carrier) that the USPS is looking to stop Saturday delivery, so they've been holding back mail on Saturdays to justify it being a light day.

chronomex• 15 years ago

I thought mail forwarding was done at the initial address scan, not the final address scan. I did a bunch of research on this a few months ago, but unfortunately I can't find a source right now.

danshapiro5• 15 years ago

Canada

http://www.onematch.ca/ http://www.blood.ca/CentreApps/Internet/UW_V502_MainEngine.n...

The first site is supposed to be more current, but isn't rendering properly for me on Firefox. On the second site, Scroll to the bottom for the button to start the process.

http://www.nhsbt.nhs.uk/bonemarrow/qa/index.asp#howcan

It appears that you opt-in when you donate blood. I don't see mention of an at-home swab program.

Germany

http://www.stammzellspenderdatei.de/

https://www.dkms.de/

Others

http://marrowdrives.org/bone_marrow_donor_programs.html

(Scroll down to see the partner organizations in many countries)

coffeejunk• 15 years ago

Also for Germany: https://www.dkms.de/

danshapiro5• 15 years ago

Thanks, updated.

sequence72• 15 years ago

UK at home swab program:

http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...

hellweaver666• 15 years ago

I signed up with Anthony Nolan earlier this year and the registration procedure is really easy, fill in a form, spit in a tube, post it back (free of charge). Done.

Takes like five minutes of your life. Could save someone else's.

a_m0d2• 15 years ago

Australia - http://www.abmdr.org.au/dynamic_menus.php?id=1&subid=1&#...

Or sign up at the Red Cross centre when you're in there to donate blood - they'll take an extra blood sample for testing purposes.

timr3• 15 years ago

"At the time, the only way to donate marrow was to basically have someone drill holes in your bones and drain your skeleton, which kind of terrified me. Nowadays, of course, most donations require nothing more than sitting still for a few hours with an IV watching television."

That actually isn't really true. Marrow donations still require anesthesia and a surgical procedure. In the interest of providing full information:

http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...

(Edit: c'mon folks...why in the world would you vote this down? It's important information to know if you're going to be a donor.)

danshapiro5• 15 years ago

From your second link:

PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.

Speaking to the marrow.org representative, she said that these days it's about 75% PBSC (sitting in a chair watching TV), 25% outpatient surgery (which is easier now than it was 16 years ago, but still daunting).

timr3• 15 years ago

Yes...you're quoting from the section to which I linked, and that's why I linked to it. I'm not trying to hide anything.

I'm also not trying to disagree that people should donate...it's just that you really do have to have a surgical procedure if you're donating marrow. Moreover, PBSC involves a five-day injection drug regimen (filgrastim) that you need to undergo before you get to sit in the chair (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...). Either way, it's a far more involved procedure than (say) donating plasma -- which is how your post made it sound.

The FAQ also says that PBSC donation is considered "investigational" (http://marrow.org/Registry_Members/Donation/Donation_FAQs.as...), though who knows what that means. I just think people should be able to read the answers so that they know what they're doing.

Egregore• 15 years ago

Is it safe from hygienic point of view? What are the chances of catching a disease from previous donor during this procedure?

cop359• 15 years ago

From what I've heard, the long term consequences of the "filgrastim" stuff is unknown. It's a pretty intense drugs (it's basically causing your marrow to be release into your blood stream)

gregable• 15 years ago

I actually am currently in the process of donation. I had been scheduled but the patient became too sick and I'm basically in a holding pattern at this point. I can confirm that the process for me involved no surgery or anesthesia and would not in the future either. It's a possibility but it's unlikely and you get to know which situation it is up front and can always opt-out at absolutely any step of the process.

blhack3• 15 years ago

>why in the world would you vote this down?

Because it's spreading misinformation that could prevent people from becoming marrow donors.

As a way of balancing this, here: http://marrow.org/Home.aspx

They'll send you a free kit. You swab your cheek, mail it back, and then you're in the registry.

Take five of your minutes and give them to somebody that needs them.

dionidium• 15 years ago

Because it's spreading misinformation that could prevent people from becoming marrow donors.

It might prevent people from becoming donors, sure, but it's not misinformation. You may think that the risks are small relative to the benefit provided, but you shouldn't pretend (or try to convince others) that there are none.

Take five of your minutes and give them to somebody that needs them.

It takes five minutes to register. It clearly takes more than that to actually donate. You're not doing anyone a service attempting to conceal this fact.

andreipop• 15 years ago

Thanks for sharing a touching story - a bit of quick digging came up with the new Canadian equivalent:

http://www.onematch.ca/

danshapiro5• 15 years ago

Thanks. Updated the links post.

heimidal2• 15 years ago

This inspired me to register, but once again I was thwarted by the US' arcane rule banning gay men from donating. The rule applies despite the fact that I've been monogamous for ages and am tested for everything under the sun twice a year.

A college frat boy who has had unprotected sex with a different girl every week for the past semester can give blood/marrow, but monogamous, healthy gay men can't. I don't get it.

tomjen3• 15 years ago

It is the same shit for blood donations in Denmark. They got pretty unpopular when they asked for more donors because they feared a shortage but then turned away the gay men.

And no, it is not for health issues because they don't turn away gay women.

Of course you could register if you want to and then if called upon show up eagerly with your partner for moral support. Then flat out ask if they are going to kill their own patients just to pretend that it is still the fifties.

Of course don't do it if they can't get a donor in time.

JVirissimo• 15 years ago

The assumption that gay women have the same risk profile as gay men seems very weak. Almost any group of women will, on average, engage in less risky behavior than an analogous group of men.

heimidal2• 15 years ago

tomjen3: Gay women are the lowest risk demographic when it comes to HIV contraction, so I don't take issue with their inclusion.

The problem, as I see it, is that most countries place an unreasonable bias against _all_ gay men rather than _some_ gay men. The appropriate way to handle donor screenings is to ask about sexual behavior in general, such as whether or not you are monogamous, how many partners in the past year/two years/five years, how often condoms are used, etc.

Instead, we blatantly exclude all gay men but do not exclude other high risk demographics. For example, black women are eligible despite being an extremely high risk group compared to white women (1 in 58 vs 1 in 588, respectively).

Unfortunately, the FDA is so afraid of alienating existing donors by asking them for a sexual history profile that they would rather stick to the status quo and continue excluding gays altogether.

jacoblyles2• 15 years ago

In the United States, gay men[1] account for 49% of HIV positive people according to the CDC. Gay women do not account for at least 2% of the HIV positive population and so are excluded from the most recent CDC fact sheet[2].

So, gay men and women may be treated very differently by health officials with some valid reason.

[1]The CDC actually tracks the objective category "men who have sex with men", and not the fuzzy labels "gay" and "straight".

[2]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...

radu_floricica2• 15 years ago

I've seen the math in another discussion in another forum, and it's actually sensible to turn away gay people. From their point of view the goal is to get as many blood donations as possible, while minimizing the risk of disease. They couldn't give a f*ck about anything else.

Couldn't find all the numbers I was looking for, but it turns out 61% of infections in US are through male-to-male sexual contact. This probably translates into over 60% of HIV carriers being male and gay.

Now, if I was a guy in a position to decide things, and I could reduce by more then half the risk of HIV in transfused blood by reducing the donation pool by 7-10%... I'd do it in a heartbeat.

If you have some time you could try to calculate how many more people would get HIV if gay people would donate blood. You could subtract the people who wouldn't die because of the increase blood supply. But the result would still be positive.

The point of the whole blood donation thing is not to be politically correct, but to solve a problem. Making it politically correct, in this particular case, would mean solving the problem worse, possibly significantly worse then if we just let them do their jobs.

losvedir• 15 years ago

> And no, it is not for health issues because they don't turn away gay women.

Wait, doesn't that exactly refute your point? Presumably, gay men and gay women have different health profiles, whereas they have similar "moral" profiles to an up-tight conservative. I think the statement makes more sense like:

> And no, it is not for moral issues because they don't turn away gay women.

marvin• 15 years ago

At least in Europe, you're not allowed to donate blood/bone marrow if you've recently had unprotected sex. I think moonogamous gay men are allowed to donate, but not single gay men.

zacharyvoase• 15 years ago

Nope, it's not related to monogamy at all; if you're a man who's had sex with a man (protected or otherwise) in the last year, you're ineligible. Note that this is also regardless of stated sexual identity; the category is actually 'men who have sex with men', not 'gay men'. http://en.wikipedia.org/wiki/Men_who_have_sex_with_men

Dove4• 15 years ago

It's the same reason they tested me for STDs when I got pregnant, even though I married a virgin as a virgin and we have been faithful forever. It's not about what you believe about yourself and your partner. It's about the statistics.

Someone else's life is on the line. They need to be sure.

Though I must admit, I'm surprised the policy is in place with marrow donations. With blood donations, sure, transfusions are a routine thing and your blood is highly replaceable. With marrow donations, though, someone may need your marrow or they'll die. I'd think a match, even if it carried a slight statistical chance of HIV, would be something they'd want to know about.

timr3• 15 years ago

If someone needs a bone marrow transplant, their immune system is severely compromised (effectively eliminated). If they're given marrow from an infected donor, they'd have no way to fight off the resulting infection. It would be a death sentence.

On the other hand, many people who need a marrow transplant have some flexibility as to when they can get the donation. This is why the guidelines are so strict: the risk/reward ratio is balanced in favor of caution.

aplusbi2• 15 years ago

It's not just about statistics. For blood donations, if I had unprotected sex with a different HIV infected partner every day for a year, then stopped doing this for a year and one day, I would be eligible to donate blood.

If, however, I had sex with a man once in the last 30 years I am not eligible.

Why is it more sensible to turn away gay people then it is to turn away people who have regularly exposed themselves to HIV?

ceejayoz• 15 years ago

> Someone else's life is on the line. They need to be sure.

I'm pretty sure if my life was on the line I'd rather get both bone marrow and HIV than neither. HIV is essentially a chronic disease nowadays in the developed world, and if there was any suspicion of HIV in the donor they could add antiretrovirals into the cocktail I'd already be taking.

It's not as if gay men are the only ones to get HIV, anyways.

rokhayakebe• 15 years ago

The problem with monogamy is that you can guarantee you are, but you cannot guarantee your partner is.

quizbiz• 15 years ago

Why don't they collect email addresses?

danshapiro5• 15 years ago

They do now. They didn't in 1995.

Alex3917• 15 years ago

Why not just put your email address on your blog, rather than messing around with their website?

qzio• 15 years ago

great that this(signing up as a donor) get some attention! We need more bone marrow donors!

sequence72• 15 years ago

If you're in the UK you can register with the Anthony Nolan trust as a donor. The whole process is incredibly simple, so please do.

http://www.anthonynolan.org/What-you-can-do/save-a-life/Onli...

corroded• 15 years ago

http://marrow.org/Join/Join_in_Person/International_Donor_Ce...

I'm quite surprised that there are no donor centers in other countries. Are there? Most of these(or all) are first world countries - it scares me to think the chances of people in third world countries if even the ones listed here have a hard time looking for donors.

ibelimb• 15 years ago

I signed up to be a donor, and I'm gonna try and convince my girlfriend to do the same. Thank you for bringing this to my attention!

bglusman• 15 years ago

I signed up for the program when I read that story, and just sent my cheek swabs in (4 of them!) this past weekend... seems like a no brainer if you actually want to make a difference in the world :-)

I wonder if there's a decent solution on the forwarding thing with some kind of unique id as metadata on an address, so if something's important someone in possession of the old address can find you through the ID? Or maybe that's just not practical, as no one would use it/retain the info unneeded in the short term.

pgambling• 15 years ago

I've been telling myself I would register for awhile now. After reading this, I signed up right away. It only took a few minutes, just waiting on the collection kit.

davidu• 15 years ago

I knew it was coming, but that last line was brutal to read.

Signed up!

cowpewter• 15 years ago

I was about to sign up, but I am disqualified due to my fibromyalgia, which they consider an auto-immune disorder. I didn't think the current research still considered it one - it's more a neurotransmitter imbalance than anything else.

daryn• 15 years ago

If any of you are in Seattle, and want to become registered marrow donors and potentially help save a life, there is a swabbing party tonight at the Rob Roy in Belltown.

http://www.facebook.com/event.php?eid=174595119298897

rmk• 15 years ago

Question: Can I go to a hospital near my house and donate to the registry?

dylanpyle• 15 years ago

A sincerely moving story. I'm already a registered donor, but this reminded me to update my address, which, like yours, was still a college dorm. If I were ever called up for a donation, I wouldn't hesitate for a moment.

alecbee• 15 years ago

Fantastic Story! I always love to see people helping each other.

After a visit to India earlier in the year, to oversee development of software for my new biz, I was awestruck at the conditions people were living in. Seeing this made me want to do something to help, and therefore decided to contribute a portion of every dollar earned to build water wells in developing countries for clean water.

I will definitely look into this as well to help...

bhickey• 15 years ago

Is it possible to donate under sedation?

Saving a Life is Easy, But I Didn't

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