How to help Fuck Cancer

[calvinhobbes]

In Alex’s cancer thread, many people told cancer to fuck off. I’d like to think that every little thing we try to do against it can help, so I thought we could share a few ideas. Mine is:

Get registered as a bone marrow donor.

A bone marrow (or these days, usually a PBSC*) transplant is a treatment, often of last resort, against leukaemia a.k.a. blood cancer a.k.a. what killed Alex.

Those patients whose therapies have not been effective depend on matching volunteer donors to receive potentially life-saving transplants. The search for that donor is a typical needle-in-a-haystack problem because their genes (in oversimplified terms) have to match those of the patient so precisely. And they must of course be registered as a donor.

That’s where we, the FinalGear community, come in. I urge and implore you to get registered! It’s an extremely simple process for you and in case your “genetic twin” does need a transplant, your data is in the system and you can be found. If and when more detailed tests show that you are indeed the best available donor, you will be asked to donate either PBSC (no surgery involved) or bone marrow. It’s one of the very few organ donations that living people can make.

For more information such as registration and the donor databases in your countries, please visit https://swabtheworld.com/

The bigger those databases are, the more patients get a second chance. YOU can make a difference!

* https://en.m.wikipedia.org/wiki/Peripheral_stem_cell_transplantation

 

[Beni]

And just to clarify, after you register you're sent a kit to take a swab from your mouth which you then post back to them...it's very simple and you don't even have to go anywhere these days.

dkms does the same and I'm sure their databases are shared.

 

[Misrabelle]

This is the best way to make a tribute to Alex, and honestly, I think the thing he'd most appreciate.

 

[Kiki]

Thanks for posting the info! I finally joined our national bone marrow registry (title updated). If you're in the US and are interested, you can sign up at https://bethematch.org/.

 

[calvinhobbes]

dkms does the same and I'm sure their databases are shared.

They certainly are. It's hard enough to find a matching donor, so the national databases share the available information around the world through the World Marrow Donor Association.

This is the best way to make a tribute to Alex, and honestly, I think the thing he'd most appreciate.

Apparently, you were exactly right:

In Memory of Alex

Alex expressed a wish to have people sign up for Be The Match Registry. Signing up means volunteering to be listed as a potential blood stem cell donor, ready to save the life of any patient in need of a transplant. It’s really easy. It would mean a lot to him and us if you joined.

People have been asking where to donate money in his name. We’re working on getting that information to all of you; we’ll have specifics in a few days.

We can’t thank everyone enough for all of the support.

 

[Adunaphel]

Sadly, I am too old and too fat to be considered a donor in my country, so my contributions have to be limited to monetary ones.

 

[RdKetchup]

Yeah, tried to register yesterday only to find out I'm too old

 

[MWF]

In that case I'm definitely out. I will throw money at the screen instead once a suitable link appears.

 

[mgkdk]

In Denmark they accept up to 60 years, but you have to be a blooddonor too and my blodpressuremedication is on the banned list for that ?

 

[RdKetchup]

For a global thing, they sure make things complicated.

In the USA the age limit is 44, in Quebec it is 35, and I can't find the info for Canada.

 

[Misrabelle]

In Australia you have to have a blood sample taken, so I'll get that out of the way when I do my bus driver medical shortly upon return from USA

 

[kunedog]

Not to be "that guy," but is this information protected under HIPAA? I know "swab the cheek" gene-testing sites usually aren't, and since this is a global database, an American law like HIPAA may well fall by the wayside. Their US database's privacy page doesn't mention HIPAA, just that they don't sell the data for profit, and googling "bethematch HIPAA" turns up next to nothing.

https://yro.slashdot.org/story/19/0...dna-testing-companies-is-working-with-the-fbi

Again, not trying to start a fight, just make folks aware of a possible issue.

 

[Blind_Io]

I signed up to be a donor, my kit is on the way.

 

[ninjacoco]

I think I might be medically out per the guidelines online but I'll ask about it anyway. Maybe there's a specific thing they're looking to avoid in the brain injury section.

 

[NecroJoe]

Not to be "that guy," but is this information protected under HIPAA? I know "swab the cheek" gene-testing sites usually aren't, and since this is a global database, an American law like HIPAA may well fall by the wayside. Their US database's privacy page doesn't mention HIPAA, just that they don't sell the data for profit, and googling "bethematch HIPAA" turns up next to nothing.

https://yro.slashdot.org/story/19/0...dna-testing-companies-is-working-with-the-fbi

Again, not trying to start a fight, just make folks aware of a possible issue.

From the bethematch.org website, they have this:

U.S. law and federal contracts require Be The Match to keep donor and patient information confidential.

They don't specifically mention HIPAA, though.


I've been registered with bethematch for about 20 years. My next door neighbor, who bought our old house, couldn't have kids, so they were like my brother's and my coolest uncle and aunt. She got the big C real bad. They started registration drives. At the time, her registration drive was the biggest they had ever had. She lived only about another 4 months after I registered, but kept on their list.

Since then, I've been contacted 3 times for potential matches. For all three, you first get a letter saying that they think you could be a match for someone, and then they tell you what the next steps will look like. Just sort of a, "Hey...we think we might need your help now. Are you still in? Here's the game plan."

On the first one, they had me go to a clinic to have blood drawn. I later received a letter that this following test showed that I wasn't close enough.

The next two, I received letters that simply said that my services were no longer needed. That was it. I suspect that if it was because they had already found a match, they they would have shouted it from the rooftops...so I assumed the worst.

However, each time I got one of those letters, I do get quite emotional and have an almost-overwhelming cocktail of emotions: that someone's so sick that I might be their only saving grace. It's sadness, a feeling if responsibility and honor...and then sadness again when the letter comes simply saying they no longer need you for this patient. Definitely an emotional thing for me.

 

[MWF]

I'm outside the permitted age range in the UK by quite some margin. Instead I've made this post on the FaceTubes and shared it as widely as I can. Feel free to copy and edit the text for your own social media to spread the message.

Given his helpful and altruistic nature I may however suggest that Junior that he consider signing up when he hits 17 and can register. And since I work with a load of people who are considerably younger than me I will suggest they think about registering.

If you want to help and make a real impact why not go to your employer and suggest they promote signing up to all employees who qualify? Not only could it add a significant number of donors to the registry in your country there is an incentive to the company as it offers a really good PR opportunity. I will be doing just that on Monday, and also suggesting to our Press Officer that we approach suitable charities as fundraising partners for later in the year.

 

[calvinhobbes]

Not to be "that guy," but is this information protected under HIPAA?

While I'm not familiar with US regulations, I can assure you that at least in the part where I come in (transport from donor to recipient), privacy is the second most important consideration after the safe and timely delivery of the cells. As a courier, I have to sign a general confidentiality agreement at regular intervals, I have to sign my name to the abridged rules on privacy for every single transport and I have to make sure that the privacy of the donor is fully protected.

Each donor and recipient is assigned an ID number by their respective registry and those numbers are the basis for all the paperwork. While a certain amount of patient data does show up in the forms that I work with, often including their name, the data of the donor is extremely limited and almost never includes a name. And even if it does, I am required to ensure that the donor's name does not show up anywhere but on the confidential forms for the exclusive use of hospital and registry staff.

Some countries allow for the exchange of personal messages between donors and recipients after the transplantation, but only if both parties agree. Until at least two years after the transplantation date, those messages are anonymised. If and when the recipient is in remission (i.e. cured or as close to cured as they can be), personal exchanges and meetings can be arranged.

 

[calvinhobbes]

Here's a video on the actual donation process:

It's worth noting that PBSC donations have been the norm for years and bone marrow donations are very much the exception.

 

[kunedog]

While I'm not familiar with US regulations, I can assure you that at least in the part where I come in (transport from donor to recipient), privacy is the second most important consideration after the safe and timely delivery of the cells. As a courier, I have to sign a general confidentiality agreement at regular intervals, I have to sign my name to the abridged rules on privacy for every single transport and I have to make sure that the privacy of the donor is fully protected.

What you describe is very similar to how I would expect it to work in the US for donors and probably anyone like NecroJoe who reaches the "second level" of screening. Basically, I would expect anything done in a physical healthcare facility (i.e. blood test and up) to be under HIPAA.

But that is not what the first-level screening seems to be. For-profit cheek-swabbing sites say they are not involved in providing health care, so HIPAA does not apply to them and the FBI can poke around at will if the company agrees.

Just to speculate about what is happening, suppose these orgs deliberately decouple the first-level (cheek-swab testing) database from the rest of it as much as possible, to avoid HIPAA (and similar) scrutiny. They then say they "don't provide health care"; they merely administer a global information and communication service for hospitals/clinics. HIPAA is only triggered after the local facilities receive the contact info and act on it.

Again, this is just speculation, but it seems to best fit the available info. HIPAA simply doesn't seem compatible with a massive, globally-accessible database of identifiable genetic information.

And I'm not saying that anything underhanded is going on, even if my guess is correct; it sounds like a valid way to organize a donor database if your goal is to minimize red tape and maximize partipation. But people should be informed that while Bethematch's privacy policy is better than something like Family Tree DNA (from the Slashdot link), their genetic info is not protected by HIPAA nor anything near as forceful as HIPAA.

 

[rickhamilton620]

Went ahead and registered.