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Alice's Bucket List
June 9, 2011 8:31 AM   Subscribe

Alice Pyne, a UK teenager with cancer, recently started her blog, Alice's Bucket List, with a personal wish-list. Top of the list is 'To make everyone sign up to be a bone marrow donor'. Her request has been brought up in parliament and helped by likes of Charlie Brooker (NSFW) has since become a top trend on twitter.
posted by fearfulsymmetry (31 comments total) 7 users marked this as a favorite

 
Serious question: Do donors receive some form of indemnification against complications? In other words, if I donate, and am one of the unfortunate 1.34% with a serious complication, do I have to pay for any of the followup care? It seems like the donation programs cover the cost of the donation process itself, but what about complications?

The odds seem (to me) to be the same as for any surgical procedure, but if donation is classed as an elective procedure then it seems like my insurance may not cover the consequences and my insurer does not appear to be highly motivated to explain this to me for some reason.
posted by aramaic at 8:41 AM on June 9, 2011 [4 favorites]


Anthony Nolan FAQ.

They also accept donated umbilical cords.
posted by honest knave at 8:47 AM on June 9, 2011


According to Wikipedia,

The first method appears to involve something like giving blood, where they put a needle in your vein in two points, and filter stem cells from your blood.

The second method involves putting you under anaesthesia, and drawing bone barrow out of your hip via a long needle.
posted by honest knave at 8:56 AM on June 9, 2011


The US donor site has this FAQ http://www.marrow.org/DONOR/When_You_re_Asked_to_Donate_fo/Donation_FAQs/index.html#pays

It says "Q: What if I have medical complications related to the donation?

A: The National Marrow Donor Program contracts with health care organizations and doctors who are experts in bone marrow and blood cell transplants. You will receive the coverage you need.

If you do have a complication related to the donation, every donor is covered by a donor life, disability and medical insurance policy. "
posted by interplanetjanet at 8:57 AM on June 9, 2011 [4 favorites]


I'm signed up as a marrow donor. Which reminds me; I need to update my contact information. Just a reminder to everyone out there: if you're signed up as a donor, make sure your info is up-to-date.
posted by Deathalicious at 9:10 AM on June 9, 2011 [3 favorites]


Do donors receive some form of indemnification against complications?

Good question. My sister - who has for a long time been registered as a bone marrow doner - recently was called to make a donation. Apparently, it is not simply a matter of manual extraction, but at least in her case involved a more complicated process where she was required to receive injections.

She became very ill from these injections, but being the stand-up girl that she is, she refused to stop taking them until the process was completed and she made a successful donation. She became so ill that the doctor administering the injections refused to continue despite her protests - and then admitted her into the hospital.

Fortunately for her, her costs were covered by her own policy so she never had to make a claim against anyone else.

This is not to turn anyone off from making a donation of bone marrow, but understand the risks. It is not like giving blood.

P.S. (My sister rocks.)
posted by three blind mice at 9:11 AM on June 9, 2011 [4 favorites]


I have strong and potentially obnoxious feelings about the bone marrow database: minorities are wildly underrepresented in the database, so if you are a minority and are NOT a part of this, you are screwing over people just like yourself. All you have to do is jam a q-tip in your mouth for like 2 minutes, ffs. If you can't afford the processing fee, find a sponsored bone marrow drive in your area here at marrow.org.
posted by elizardbits at 9:12 AM on June 9, 2011 [2 favorites]


This comment on an AskMe post lead me to donate the cord blood from my birth this year. I'd looked into signing up as a marrow donor and found that I was eligible to make a much less painful donation. I would have had no idea that it was possible to give away cord blood without clicking on that link. This is a case where awareness actually does make a difference.
posted by Alison at 9:14 AM on June 9, 2011


Seriously. Go get registered. Marrow donors are incredibly difficult to match (nothing like blood), and a marrow transplant is always a life-saving procedure.

If you meet the eligibility requirements (much more lenient than those for blood donation), you have no reason not to register.
posted by schmod at 9:20 AM on June 9, 2011 [1 favorite]


Sadly an awful lot of the tweeds didn't mention bone marrow and were apparently under the delusion(?) that Alice simply wanted to be a trending topic. I hope they all discover their error and (where they can) sign up.
Personally I can't and I'm frankly jealous of people that can.
posted by edd at 9:44 AM on June 9, 2011


You don't even need to wait for a donor drive! If you have an Internet connection (and I assume you do, since you are reading this) and $54, you can sign up here to get a cheek swab kit sent to your house. You swab your cheek, you mail the kit back, congrats, you're in the donor registry!

Especially if you are part of a minority ethnic group or uncommon ethnic mix, please please please join?
posted by Asparagirl at 9:58 AM on June 9, 2011


A note: they will reject your application to be a donor if tell them that you are a man who has sex with men.
posted by novalis_dt at 10:14 AM on June 9, 2011


A note: they will reject your application to be a donor if tell them that you are a man who has sex with men.

Don't know about anywhere else but Charlie Brooker tweeted today 'Spoke to someone from Anthony Nolan trust his morning who confirmed their register does *not* bar gay ppl'.
posted by fearfulsymmetry at 10:41 AM on June 9, 2011 [1 favorite]


And just so you realize how broad the idea of "minority" or "mix" is, someone who is half Ashkenazic Jewish and half Sephardic Jewish only has a 6% chance of finding a bone marrow match. It's not (just) about race or skin color, it's about HLA types.
posted by Asparagirl at 10:47 AM on June 9, 2011


I have organized bone marrow drives before and they do not bar gay men from being donors, unlike US blood banks.
posted by Asparagirl at 10:49 AM on June 9, 2011 [1 favorite]


I've been in the registry since the Alana Dung drive in Honolulu many years ago. I've come up as a potential match twice, but never have been called. None-the-less, I can't advocate enough for the registry. Its so much harder to find bone marrow matches than blood matches and, while there is some risk involved, you save a specific person's life if you are a match.

(But give blood too)
posted by Joey Michaels at 10:53 AM on June 9, 2011


Asparagirl, are your bone marrow drives different from the Be a Match links above? According to their site men who have sex with men are not eligible to join the registry. If you know of a different registry or donor group, I would be interested in hearing about it.
posted by BigVACub at 11:01 AM on June 9, 2011


My mother received a bone marrow stem cell transplant yesterday from a matched, unrelated, anonymous donor. Her donor is a 25 year-old young man who is quite possibly the most awesome person I have never met. Here are the things I learned about donation, the US National Match program, and the transplant process:
(Note: my experience is with City of Hope. Other facilities and other countries may be different.)

- roughly 95% of BMT's today are done with hematopoietic stem cells. Only 3-5% of cases require surgical harvesting of the marrow.
- The stem cell collection process is a lot like platelet donation. At City of Hope, they do one-needle apheresis, which means that you're hooked up to a machine on one arm that pulls your blood out, pauses while it spins & filters the stem cells, and then pushes the hemoglobin and other component back in through the same needle. Other facilities do with as a needle in each arm, one for in and one for out.
- In order to have enough stem cells to collect, the donor will be given 'white cell colony stimulation' drugs, most commonly Neupogen/Filgrastim, as an injection into the fatty abdominal tissue. (I imagine this is what three blind mice's awesome sister had an adverse reaction to.)
- This is what arrived in her room yesterday: Looks kind of like bloody mary mix. They ran it in like a regular transfusion.

Some things I learned about signing up for the registry:
- No blood needed, just four cheek swabs.
- Some hospitals have programs that offset the cost of testing (like City of Hope)
- There is an extensive questionnaire and application to ascertain risks. They will not process your application if you are over 60, or are obese (BMI>40) or a man who has had sex with men in the last 5 years, you will be rejected. Note: This conflicts with what other members here and what City of Hope told me. YMMV. Other guidelines here.

Fortunately for us, we're white and my mother is half-polish, half-irish, which made matching her (apparently) very easy. Other ethnic groups are not so lucky.

Please, please, please consider joining today.
posted by ApathyGirl at 11:04 AM on June 9, 2011 [2 favorites]


On a related note: sign up for organ donation. There's zero risk involved, being that you'll be dead before they take them. Kind of a non-decision, unless you harbour fantasies of being resurrected after your death (like 14 year old me).
posted by Acey at 12:08 PM on June 9, 2011


On a related note: sign up for organ donation

I really can't fathom why organ donations aren't done on an opt-out basis. You're dead! Why should your corpse rot when it could save lives? And why should people die needlessly because others haven't thought to sign up, or because their relatives are squeamish or superstitious?
posted by Dasein at 12:32 PM on June 9, 2011 [2 favorites]


Please, please, please consider joining today.
posted by ApathyGirl at 7:04 PM on June 9 [1 favorite +] [!]


a) Congratulations! *hugs*
b) It has to be said that after that comment the username may need changing. ;)
posted by jaduncan at 12:52 PM on June 9, 2011 [1 favorite]


I've just found out that for medical reasons (heart surgery) I'm unable to join the register. (I'm also not able to become a blood donor, for the same reason)

I wish I could join it. If you can join the register then please, please do.
posted by DanCall at 2:23 PM on June 9, 2011


The second method involves putting you under anaesthesia, and drawing bone barrow out of your hip via a long needle.

I've had bone marrow extracted by this method. Local anesthesia is used, and even with that it's the single most painful thing i've felt in my life. Also, bone is hard, so the needle is inserted sort of like how you insert a corkscrew into a cork. You can still see the mark where the hole was to this day, it left a 2-3mm crater on my lower back :P

/cool story bro
posted by palbo at 2:48 PM on June 9, 2011


Dasein: "On a related note: sign up for organ donation

I really can't fathom why organ donations aren't done on an opt-out basis. You're dead! Why should your corpse rot when it could save lives? And why should people die needlessly because others haven't thought to sign up, or because their relatives are squeamish or superstitious?
"

Because bodily integrity is a pretty well respected judicial concept. Your body is your body, even after death. I think that's a pretty decent principle to have in society, even though it may result in a shortage of organs.

Rather than challenging this principle, some countries have the right idea of heavily advertising and promoting signing up for voluntary donations. As above, it's not ideal, but living in a liberal society has pros and cons.
posted by oxford blue at 6:46 PM on June 9, 2011 [1 favorite]


Just wanted to chime in and echo what elizardbits said: Minorities and people of colour, please do register! Donor match rates are much lower for us due to the paucity of our populations on the donor rolls.
posted by ooga_booga at 6:52 PM on June 9, 2011


I just signed up on marrow.org. I'd been thinking of it off and on but for whatever reason this girl's blog was the kick in the pants I needed. Took about 5 minutes. Hopefully more people will do the same.
posted by anotherkate at 7:30 PM on June 9, 2011 [2 favorites]


I'm the author of this previously referenced post. Here's the update, and the best reason I can personally think of to become a bone marrow donor: My sister is alive and healthy.

When the only donor we found in 4 years was suddenly and inexplicably unable to donate, we thought our last best hope had been extinguished. A few weeks later, miraculously, another donor that was an 80% match was found...in BRAZIL. An unrelated, anonymous, middle aged woman from a small town in Brazil was on the registry and donated her bone marrow, which was transplanted into my sister in January. It was the 6th Brazilian-donated transplant performed in the US. (BTW, we're white, Anglican and Eastern European with not a drop of non-Caucasian genetic history that we know of. The fact that they found a match in Brazil is fascinating to all of us.)

They say that if you make it past 100 days you're pretty well in the clear. It's been 5 months and we just celebrated my nephew's birthday. We went to Prince's last show at the Forum. We'll be at her son's first swim meet of the season this Saturday and then she's coming over to help me re-design the kitchen in my first home.

Donate. Donate. Donate. If you're willing to register, please try. I can't explain to you all the feeling of hearing that a match has been found and I can't wait to give that feeling to someone else.
posted by buzzkillington at 10:48 PM on June 9, 2011 [6 favorites]


I can't sign up for blood or marrow but I am on the organ donor register. If you have a Boots Advantage Card, they can put the symbol on there for you to make things easy.
posted by mippy at 3:06 AM on June 10, 2011


Googling "marrow.org" +code or +"promo code", with date parameters of the past month/year, can turn up viable sponsor codes--I used one to waive the $50ish application fee when I signed up last year. Internet bargain-hunting for justice mercy!
posted by nicebookrack at 12:34 PM on June 10, 2011


Because bodily integrity is a pretty well respected judicial concept. Your body is your body, even after death

I know this is a bit late, but I don't understand this point at all, and it strikes me as the sort of lazy thinking that costs lives. I'm suggesting that you be allowed to opt out of organ donation if you wish. How does that conflict with the principle of bodily integrity? You would still control your body after death by opting out before death, there'd just be a reversal of the presumption that people want their bodies to rot uselessly rather than save lives.
posted by Dasein at 5:35 PM on June 13, 2011


Asparagirl, are your bone marrow drives different from the Be a Match links above? According to their site men who have sex with men are not eligible to join the registry. If you know of a different registry or donor group, I would be interested in hearing about it.

BigVACub, the bone marrow donor drive I organized last summer was done through the group Gift Of Life, which specifically tries to recruit donors from the various Jewish ethnic communities -- although of course they can and do accept test kits from anyone of any ethnicity. They provided us with a "potential donor" checklist that had a long list of age and medical exclusions, and it said nothing about men-who-have-sex-with-men exclusions, nor was I informed about any such exclusion during my over-the-phone volunteer training. Looking at their website right now, I also do not see any mention of sexual activity as an exclusionary factor. It's the same website that I linked earlier in this thread where you can order a test kit online for just $54.
posted by Asparagirl at 5:50 PM on June 15, 2011


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