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Amit Gupta hasn't found a marrow transplant match; today's your last chance.

amitguptaneedsyou.com

71–80 of 247 posts

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#71

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for…

- Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you. - You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information. - It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redund…

I would strongly suggest that they have the courtesy of stating their intention when asking for all that information. It's not difficult.

People are showing up to help and are then subjected to what seems like an interrogation. Even the most helpful soul would raise her eyebrows a few times.

I'm not saying that the information is irrelevant, but each question is there for a reason, why not just state what it is? You were able to do it in a couple of lines, why can't they do the same in the form.

"Disclaimer: Some of the secondary questions in this form might seem intrusive, but we need to make sure that if you're a match we have multiple ways of finding you.

Also, the analysis is lengthy and costly, we use the additional information to filter out samples that are more likely to match our current needs, which helps to speed up this process.

We are aware of the sensitivity of the information you're providing to us and we take your privacy and your confidence to heart. For the same reasons the password you're setting to access your file should be more stringent"

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#72
post #57

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for…

[deleted]

Chill out. Just because signing up is important doesn't justify the website going out of its way to make it obnoxious and hard to do so. The parent got a kit, others may not.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#74
post #67
post #52

Earlier quoted context omitted.

In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male? In the U.S., if you donate blood you are always asked this question, so this is completely acceptable. Do you really want the donation pool potentially contaminated by the HIV virus?

> Do you really want the donation pool potentially contaminated by the HIV virus? This is FUD. Gender of partner as an HIV risk factor is now much less predictive than a number of other risk factors that they do not check for; it is especially insulting to monogamous couples whose HIV risk is negligible. (The Red Cross is especially odious in this regard, as they are still asking this question not as "in the past 5 y…

I agree with you that the policy is wrong, but it comes from the FDA, not individual organizations:

http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#75
post #57

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for…

[deleted]

I can understand your reasoning, but you need to remember that the key to bone marrow donation is getting as many people as possible on the register. That means making it easy to sign up. The simpler the process, the better.

Making a web form complicated, demanding, or asking for too much information is a mistake people make right across the internet all the time, and it's shown to cost them customers. I've definitely seen articles about how slightly tweaking the wording of forms increases sign ups by some percent. Why would giving bone marrow be any different?

Criticism of the bone-marrow donor sign up process should be welcomed. The user stated that they did eventually get through the process, so your criticism of them is unfounded. Would the world really be better if people didn't criticise processes because they were somehow linked to charitable good?

It's not petty and disgusting to criticise a flawed process, whatever it's for. If this was someone's startup and it had that kind of convoluted signup process, would anyone complain about criticism? No. Surely a process that could result in saved lives is more important to get right than someone's start up.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#76
post #57

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for…

[deleted]

Don't beat down on someone helping to make things smoother.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#77
post #5

A good friend of mine, Eric Drew, survived two failed fully oblative bone marrow transplants (partial match) and was out of options, so he "qualified" for an experimental "Cord Blood Transplant" which cured his Acute Lyphoblastic Leukimia. I believe it was done through the University of Wisconsin, but I'm uncertain if the procedure has gotten out of research trials. If Amit runs out of options, he should look into it…

I think the term is an ablative and/or autologous bone marrow transplant. My father had this performed to treat type ii non hodgkins lymphoma. Essentially, if there is no donor, you can draw a patient's own bone marrow, attempt to treat it so that it has no cancerous cells, culture the hopefully cleansed bone marrow, kill all the patient's bone marrow in their body via high doses of chemo and/or radiation, then reimplant the patient's own cultured and hopefully safe bone marrow. While the patient has no bone marrow they will be completely dependent on donor blood. What these antiseptic descriptions mask is "killing a patient's bone marrow" is roughly equal to poisoning that person just a tiny bit shy of killing him or her.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#78
Since I'm still gay, I'm not allowed to help, no matter how many times you ask. I get why they do this and I shouldn't let it bother me, but emotionally it feels the same as if they just said, "Please become a donor, nohomo." edit: Of course I still wish the very best for Amit.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#79
post #57

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > In the past 5 years have you taken money or drugs in exchange for…

[deleted]

I feel it'll be hard enough convincing someone to lay with a wide gauge needle in either arm for 6 hours, so if they're cool with that, then I'd be keen to have them on board regardless of their other personality traits.

So while I wasn't fond of the delivery, he's demonstrating that technical barriers, most of which are artificial, are possibly getting in the way of altruistic intentions.

For example, if a person sits down to sign up, then needs to go away from the computer to obtain various amounts of private information, there is a good chance that they won't return right away and possibly not at all.

Re: Amit Gupta hasn't found a marrow transplant match; today's your last chance.

#80
post #51

Earlier quoted context omitted.

> (Men only) In the past 5 years have you had sex, even once with another male? If I was going through this process, I'd answer yes even if not true purely out of spite.

If you were going to do that, then why would you even bother with the form? You would just be wasting your time and theirs.

So that when they get a number of applicants they need but won't process or match due to policies straight out of 1991, someone maybe possibly finally gets a clue.

Of course, as a white male I'm about as boring ethnically as they come, so I realize my potential for making an impact is quite low.

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