The blood bank was also annoyed but there's nothing they can do. I'd write my representative, but as a non-citizen I don't have one.
But seriously what's the motivation behind this?
Not sure I understand the logic... Quarantine for a set period I can understand, but banning for life makes little sense. After all there are many blood donors in all European countries and we don't all end up with mad cow disease when we receive blood transplants.
For comparison: After having lived in the US you are banned from giving blood in Denmark for 1 _month_
BSE is caused by misfolded proteins called prions[1] which also causes Creutzfeldt–Jakob disease[2] (CJD) in humans. One form of CJD is Kuru[3] which inflicts the Fore tribe of Papua New Guinea and is likely transmitted through cannibalism interestingly enough.
There isn't a great depth of understanding of these diseases yet but in the case of Kuru the asymptomatic period has been demonstrated to be somewhere in between several years and several decades[4].
There are no screening tests for prion diseases[5] so the only way to be sure is to not take blood from risk groups.
[1] http://en.wikipedia.org/wiki/Prion
[2] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
[3] http://en.wikipedia.org/wiki/Kuru_(disease)
[4] http://en.wikipedia.org/wiki/Kuru_(disease)#Presentation
[5] http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...
Because Europeans have an increased risk* of having the prion disease BSE they aren't ever allowed to donate. The reasons for this are a similar prion disease in New Guinea has been shown to have a very long asymptomatic period measured in decades. And since there is no screening for prions and no one is sure how long prion diseases remain asymptomatic all Europeans are not allowed to give blood/marrow/organs.
* How much so is of course debatable.
I've lived in Australia for 14 years and I'm still not allowed to give blood here. I doubt I ever will.
But it never occurred to me that organ donation is affected in the same way.
EDIT: Be sure to read http://en.wikipedia.org/wiki/Creutzfeldt-Jakob_Disease#Epide...
Then when he dies we have somebody to point to and say "this person could have been saved, but for your bigotry".
But often people don't react until you can point to somebody and say "because of direct consequences of this policy, this person is no longer alive". It is even better if you can show his family crying.
Personally I would prefer getting them to fix it without getting anybody killed.
But that may be too much to ask.
FWIW surely the measure is whether you're in a risk group for transmission of disease, like being European (wrt CJD).
Also it would be "since I have homosexual sex". It's not your proclivity that's being challenged it's actions which are known to put one at greater risk of carrying certain pathogens that are detrimental to a donee.
Of course it could go down differently to how you say: He lies, the person gets a temporary reprieve and then dies from some other pathogen that the donor wasn't aware that they have but that the medics were trying to account for by ruling out those having homosexual sex.
Remember it wasn't that long ago that hundreds (thousands?) of people got AIDS from donated blood and plasma.
It's all a trade off. You trade access to the bone marrow of a certain population for an overall lower risk of disease transmission.
It's no different than the fact that if you've traveled to a malaria zone in the past year that you can't donate blood.
The marrow guys could even cover the cost of the STD screen for people who register for the program.
Seems to me this would be an even safer way of ensuring potential donors don't have HIV than just asking them about their sex lives...
What's that? It now sound horribly offensive, erroneous, and bad policy? Well sorry about that! Gotta be consistent you know.
(I'm not black or a woman, but am gay - for my own selfish sake I'd love what you said to be true.)
I have no issue with gay people at all, and on an absolute numbers basis, infection rates are not terribly high within that overall community. I just find it immensely interesting how people's normal thought processes (even those who are normally extremely logical and data oriented) are fundamentally altered when the subject of discussion is race, gender, sexuality, or culture.
Thanks for pointing it out.
I'd agree with people who are okay with profiling if there wasn't a reliable test for HIV, or if there weren't enough resources to test for it, but I haven't found any evidence for either of those potential claims.
They are the ones that are most likely to have it and not know it or treat it and are also the ones to face the largest stigma in dealing with the issue.
That's the context; it was the time window after infection but before high confidence of the results in the mouth swab test, which is the standard method used in such circumstances (and also the cheapest).
Anyway, that is what I meant by it, and that's the report I was referring to when I said CDC. I didn't mean to say that gay people don't get it.
[1]http://healthland.time.com/2010/09/26/study-20-of-homosexual... [2]http://www.cdc.gov/hiv/topics/surveillance/resources/factshe...
This seems a lot more sane than "There's this group that we used to consider high risk for HIV. We're not willing to scientifically test for it. Are you a part of this group?"
Regarding the 3 months: the UK only just changed it from a lifetime ban for MSM to 12 months - they feel that 12 is safer, many people have argued that this is still over the top. I'm not a doctor, and I'm not well enough informed to tell you who is right on this. Countries that do have a lifetime ban certainly need their policies updated.
Regarding unprotected: the argument is that even protected sex isn't 100% safe. I don't have any stats to argue for either side here, and I don't have an opinion for that reason.
So, it's not entirely a case of "we can't be bothered to test", but at the same time many countries have out of date policies. And even those, like the UK, with better ones, there are still some people who argue they are too strict against MSM, and others who argue that any less strict would be too dangerous.
I could very well have had sex with 100 women in the past 3 months (as a man) and been unsafe with all of them. Yet, they don't seem to be the least bit worried about that scenario.
Having 100 random sexual encounters with randomly sampled women leaves you approximately a 50% chance of having unprotected sex with someone who has HIV. Not to mention, HIV may not even be transmitted even if you have an encounter.
On the other hand, after 100 random homosexual MSM encounters, your chances of having had unprotected sex with someone carrying HIV is 99.99997344%.
MSM puts you at a much higher risk for HIV. That's fact.
I suppose the idea is not to waste time and resources on ineligible donors, and it seems as though they've made the decision that profiling based on sexual orientation is the best balance between wasting time and resources tracking patients who are ineligible or will likely become ineligible and missing out on potential matches.
I just can't believe that an inclusive and scientific approach - don't profile, test at sign-up, test again at match - wouldn't yield more matches (and more positive goodwill, obviously). Then again I haven't seen the data...
So if the transfer can work with a 3 month delay (I'm not sure if it can, just assuming), and the HIV test comes back clean, you're going to have a 97% chance of a true-negative, 3% chance of false-negative.
At that point, comparing it to the odds that the "eliglble" donor is lying about their sexual activities or is simply HIV positive and heterosexual, the ban on letting gays register seems draconian, and a scientific test-based approach seems better all around.
Especially when you consider that if no donor is found, the patient could die anyway. So if the only donor is gay, test them, and then notify the patient of the 3% chance of contracting HIV from a false-negative patient versus the 100% odds of dying from Leukemia, and see what decision they make.
I probably screwed something up, but in any case you are definitely right that the false-negative odds are very low among all potential applicants. Really makes the argument against seem foolish.
1) http://www.cbsnews.com/8301-504763_162-57333212-10391704/cdc...
2) http://www.organtransplants.org/understanding/marrow/
3) http://www.wolframalpha.com/input/?i=%28%281%2F20000%29++*+%...
Donated blood is tested with PCR, which detects the HIV RNA. PCR test detects HIV in as quick as a couple of weeks.
However, because of the added cost (and time cost) of running PCR tests, donated blood samples are pooled before being tested. If the test runs positive, samples are tested individually.
It sounds like nothing but Alan Turing-style discrimination based on fairy tales to me (but I might miss a point. like that research that proved that being gay is genetic and the same gene also causes sloppy bone marrow)
The policy is ignorant and based upon the idea that all men who have sex with other men are unsafe, promiscuous, and an hiv test won't be effective as they may have had a recent exposure that is essentially untestable. Its a holdover from the 80's when people were afraid of catching the 'gay disease'.
In my view, unless there is some test for being gay (there isn't) then just go ahead and register. If you're a match, then make sure you're hiv negative and haven't had any risky behavior in the past few months and you should be good to go.
I googled around for some stats, and I found this quote from a website called the Bay Area Reporter:
"According to a 2008 CDC study, one in five MSM in 21 major U.S. cities were infected with HIV, and nearly half (44 percent) were unaware of their infection. The study also found that 28 percent of black MSM were HIV-infected, compared to 18 percent of Hispanic/Latino MSM and 16 percent of white MSM. Of the HIV-infected black MSM, 59 percent were unaware of their infection."
I won't copy-paste it, but if anyone's interested, it's here: http://bit.ly/q6624N
edit:
"The CDC had already revealed last year that approximately 53% of the estimated 56,300 new HIV cases in 2006 were in homosexual men, with the African American population being particularly affected."
http://www.lifesitenews.com/news/archive/ldn/2009/aug/090826...
This is (in part) explained in the box to the right. Then there is also the 'population statistics' differences.
Epidemiology is a strange field. Because of the difficulty of balancing specificity and sensitivity, "99.9% accurate" tests often end up meaning that even if you test positive, you have a small chance of actually being infected.
Statistics are scary, especially to policy makers. If you tell someone "homosexuals have up to a 5000% higher chance of getting AIDS from sex", that can have a pretty big effect on policy.
The irony with this is that the men who are honest about having sex with men are also more likely to be aware of their HIV status than men who lie at the blood bank.
I feel the same as nostromo every time I am asked to give blood. I know I'm HIV-negative. I'm not South Asian, so I couldn't help Amit anyway.
Certainly in the UK, where there is no benefit for giving blood, I can only assume that those who lie about it are doing so because they too know (or 100% believe, possibly incorrectly) that they are clean, and they don't want what they see as pointless policy to prevent them from helping others.
Here's the problem with just saying "are you clean?" You could be in a long-term committed monogamous man-man relationship, and therefore believe you are completely safe. However, the fact that you trust your partner not to cheat on you does not mean that health authorities can trust him not to have cheated on you. So even if the person being asked is completely telling the truth, they might be wrong.
Isn't the only real reason to lie because you're doing it for yourself and not really to try and help other people?
I believed at the time this was due to the UK CJD scare. Can anyone confirm?
My gf at the time, also reported being denied the opportunity to give blood, after declaring on the form that she was in a relationship with a UK national.
I'm a Level II Volunteer for the National Marrow Donor Program, meaning I've had the training to coordinate and run drives locally. Let me preface my comment by saying I'm in no shape or form someone who is qualified to speak for the organization as a whole, as I've only become a volunteer in the last year. These thoughts are my own.
In my limited experience being a part of marrow drives I've come across many people, both volunteers and potential registrants alike, who feel similar sentiments to those that you have expressed -- myself included. There's a lot about becoming a donor that I really wish was better. The policy to not accept homosexuals as donors is created by some FDA(?) policy, so while I also "get it" at face value I wish the reasoning was better substantiated than a blanket ban on a specific group of people. Unfortunately as volunteers we operate on the hope that those that set these medical guidelines have more expertise/experience/knowledge than we do, so we have little choice but to follow them as dictated.
There are other shortcomings. As others in this thread have expressed, the registration form is crazy long. There are reasons for that too -- an inability to contact matches on the registry results in over a 50% false-matching rate in some ethnic groups -- but still, it's not ideal. The form is also very personal, and while the NMDP takes confidentiality very seriously perhaps they don't emphasize that enough. Trying to glean bone marrow information off of existing websites can be a very kludgey process, as several of the websites can be difficult to read/navigate. And there's a bias in the registration process for ethnic minorities, simply because they are so underrepresented that there's funding in place to cover their $100 marrow processing fees. White Americans don't have as much funding. 75% of the registry is made up of White Americans, and when we register White Americans we must ask for financial donations to help displace some of those registration costs. As a Korean-American, minority volunteer, it bothers me that whenever a white person comes to the table I must ask for a donation but I don't necessarily need to do so for minorities. It's not because I want to be racially discriminatory. It's solely because of a lack of funds.
At the end of the day, despite the parts that I wish were different, I still do my best to recruit donors. I know that the time taken to register every new individual to the registry is really a chance at life for someone who is dying. Being a cancer survivor myself I don't think I'll ever be able to forget the feelings of sheer despair and uncertainty surrounding my health, so I know that to come to the aid of someone in that situation, with no other options, is really an incredible, life-changing opportunity.
I really commend you for your honesty, and I don't sense bitterness at bone marrow donation in your comment but sadness at the circumstances. I hope you know that you are not alone in that. Here's to hoping one day bone marrow registration gets easier/more accurate/more efficient, and more accepting.
The language on marrow.org is unclear on this point, so I emailed them. The person who replied clarified that while their guidelines are "based" on the FDA's blood donation guidelines, their own Donor and Patient Safety Committee [1] ultimately determines policy.
[1]: http://marrow.org/About/Who_We_Are/NMDP_Leaders/NMDP_Committ...
Beyond being somewhat homophobic, this policy is actually counterproductive. The explanation is long, but I've written it all up here: http://bit.ly/q6624N . (The second and last points, in bold, are the most relevant).
Being Indian myself, it's incredibly painful to see posts like this and know that I can't do anything to help Amit out. Because I was never allowed to take the test, we'll never know if I would have matched Amit. But just think - what if I had?
I don't mean to insinuate that it's a light decision to make (I recently joined the marrow registry, even though I won't be a match to Amit due to my ethnicity), but if the data already exists, why not reduce the friction to being a donor?
If my assumption is correct, then would you rather take a possibly HIV-infected donation now, that, if it turns out to be clean, gives you x% chance of living, or wait and see if a little more time brings you a donation that is definitely clean, even if the waiting gives you y% chance of living (where y is lower than x). Without knowing what x and y are, and without knowing the probability that the possibly-infected donation is infected, and without knowing how long you might have to wait to get a definitely clean donation... how do you make the call.
How do you feel about lying?
If I absolutely know that I am safe, but the policy does not allow me to donate, then I would have no problem lying to save a life.
If I (and this is taking extra-wide margins) have not had any sexual contact in the past 12 months (or anything else that leads to something like HIV, such as needle use), and have always tested positive, then any doctor would confirm that, as long as I am telling the truth about this situation, I am definitely clean. And yet I would still be banned from donation. Do you really think that, in that scenario, it would be wrong to lie if I could specifically save somebody's life?
A lifetime ban is quite clearly over the top and not neccesary - hell, even with the UK's new 12 month waiting period after MSM activities for donating blood, there is scope for someone to have gone far past the window of "I might have HIV from that person and it isnt showing up yet", without having reached the 12 months required by policy.
I absolutely would not endorse lying in this situation, apart from anything it is possible to be 100% confident that you are safe and clean, and be mistaken. But in a certain scenario, I would be willing to lie personally.
I think you meant negative there.
Also, it would seem that hiv is honestly less bad than dying of having no match for acute leukemia, but I'm not doctor can't say for sure.