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.
All Europeans are also banned from giving blood for forever. I'm a very recent transplant to the US from Denmark. I was a regular blood donor in Denmark and checked up on the US regulations before moving here. Even wrote the local blood bank because I didn't believe that the "if you've lived more than 5 years in Europe, you can't give blood ever" was for real. Sadly, the rule is very much real.
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.
BSE/Mad Cow fears. Because of the BSE outbreak in the UK in the 80s (and the various smaller outbreaks later) the US authorities were scared shitless at some point. So if you've lived 5 or more years in Europe you're banned from donating blood forever.
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.
Not sure how I can make it clearer but I will try.
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.
Funny thing here. The probability of Prion Disease is very small. VERY small. Statistically speaking, the barring of blood donation costs us significantly more lives than the contamination possibility. Yes its unfortunate some people will develop prion disease, but... you get it.
It's not like prions are contagious. If I wasn't in the UK for those years, and was protected from any additional risk by fairly sensible quarantine policies… I am just as safe as the next donor. It sounds like the US is depriving itself from a large pool of donors due to a blanket dismissal of public policy in other countries.
You think the FDA / NMDP are making medical policy based on bigotry and not on statistical analysis of pathogen distribution?
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.
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.
Yes you save more people in the short term but the risk for disease transmission jumps up quite a lot. I'm sure that not even the doctors really like the fact of the matter but they have to accept it because they must save lives and not take them away for short term benefit.
I'm not sure why they wouldn't allow some form of in-person registration accompanied by an STD screen at a clinic for people who they are eliminating now for being too "high-risk"?
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...
At least in the case of blood, all donations are already screened anyway. In US, the American Red Cross has actively fought the blood ban claiming it is "medically and scientifically unwarranted." John Kerry has also led opposition to it in the Senate (unsuccessfully).
HIV doesn't show up immediately (possibly other STDs are the same, not sure off the top of my head), if I remember correctly most people will test positive within 3 months of being infected.
This is correct. Why isn't the question "Have you had unprotected sex in the last 3 months? Can we give you a blood test today?"
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?"
They would do the test on your blood regardless (they do it on all blood).
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.
The policy still doesn't add up. They really should just ask anyone if they've had unsafe sex outside of a monogamous and std tested relationship in 3/12 months.
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.
While I support allowing homosexuals to donate, I don't think your comparison is fair.
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.
The standard HIV test people do (ELISA) tests for the antibodies produced against HIV, not the HIV strain itself.
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.
Ah very good then. Well since the CDC now says that blacks and women are the most at-risk for HIV, we should probably change the rules with the times then, right?
What's that? It now sound horribly offensive, erroneous, and bad policy? Well sorry about that! Gotta be consistent you know.
You're wrong on the facts part, as of this month the CDC still states "men who have sex with men (MSM) of all races and ethnicities remain the population most severely affected by HIV", with their estimated stats being that 2% of the US population are MSM, and they accounted for 61% of new HIV infections in 2009. MSM accounted for 49% of HIV infections in 2008. (Those years are most recent available data.) For more details check out their PDF at http://www.cdc.gov/hiv/resources/factsheets/PDF/us.pdf
(I'm not black or a woman, but am gay - for my own selfish sake I'd love what you said to be true.)
Good point. Very few people seem to be aware of the actual statistics on this subject, and not terribly interested in debating it further once once someone links to actual data which is quite frankly unequivocal. A bit ironic considering how self proclaimed enlightened people tend to look down their nose at the "uninformed" masses who think HIV is a "gay disease".
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.
I'm also aware of the statistics - roughly split between gays and heterosexuals. I think the problem lies more with the epistemological side of things. As the marrow registry, how do you know whether or not someone is gay? How do you know whether someone is HIV positive? Only one of these questions actually matters for donors, and only one of them is scientifically testable.
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.
To hell with screening, if I was on death's door courtesy of leukemia I'd rather accept a transplant from someone I know is HIV positive. My logic: given the state of anti-retrovirals, being HIV positive sounds downright cushy compared to dying of leukemia.
yes, that's the report that went out yesterday. The context of the discussion was "at-risk" in the spirit of "have it but don't know it" or "don't know what to do about it"; not in the spirit of "have it". You can go over to the early release of the data here: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm60e1129a1.htm?s_c... ... the people that get the least counseling, don't think they are at risk, etc, are those two groups.
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.
The prevalence rate for MSM (about 20,000 / 100,000)[1] is much higher than for black women (1,122 per 100,000)[2] or black men (2,388 per 100,000), though you are correct that all three groups have very high concentrations of HIV positive persons.
Well the STD test was only going to be able to rule-out donors who are positive at the time of sign-up anyhow. After submitting to the test and giving their sample, everyone becomes potentially infected until you test them again.
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...
Because testing can show the blood to be clean even for someone who does have HIV, and blood/marrow aren't (I believe / assume) things you can just stick in a fridge for a couple of years and then test again.
From wikipedia: "The vast majority of people (97%) have detectable antibodies by three months after HIV infection; a six-month window is extremely rare with modern antibody testing."
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.
It isn't a 3% chance of a false negative, the 97% figure is conditioned on actually having HIV. The actual chance of a false negative is far lower, since most people don't have HIV at all.
Good point. You could also realistically eliminate those who know they are infected from the potential false-negative category, which would give you an initial pool of 240,000[1] potential infected who don't know they're infected. Among them there is a 3% chance of non-response within 3 months to antibody testing, for a total of 7,200 false-negative potential candidates out there among 309,000,000 total Americans. Then consider the 1 in 20,000 odds [2] of being a match, and you end up with a false-negative match rate of 0.00117 per million people (according to wolfram alpha [3]).
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.
I suspect legal reasons and the US's sue-happy culture are important factors. A scientific screening test puts the onus on the collection agency, so even 99.9% accuracy still risks a recipient getting infected and suing. Asking someone to sign a legal document about their sex life puts the onus on the donor, if they happen to be lying.
I don't understand anything about this. In the US, straight persons can't get AIDS and gay persons can? Or, what's the point? Anyone care to explain?
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)
I don't get it either. African-American women are one of the fastest rising HIV+ groups in the US, yet they aren't banned. Yes, anyone can transmit HIV.
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.
Anyone can transmit HIV, but MSM are much more likely to have it than any other demographic subgroup. Don't let your ideology get in the way of the facts. The CDC says that 600,000 MSM are living with HIV, that's about 1 in 10 MSM. That's tragic.
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."
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.
About half of people with AIDS got it from homosexual behavior, although I don't remember the exact statistic.
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."
Interesting, as a former, non-gay, UK resident, I'm not allowed to give blood in the US, even though I was allowed to obtain a green-card, and screened for HIV by a US doctor in London.
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 think you're right. I remember giving blood not too long after the CJD/mad cow scare, and the "have you been to the UK in the past 6 months" question surrounded by questions about eating beef from various countries.
I can confirm that. I lived in the UK for a short six months during that scare. Whenever I went to give blood around that time, I was asked that question, then denied. I haven't gone to give blood in a while though, so I don't know if that restriction is still in place or not.
At least in the blood ban in the US, the only enforcement is the honesty 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.
I don't entirely agree with your irony (unless - and I've only seen this on TV... in fact I think only in the simpsons - do blood doners get paid in the US?)
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.
If I were in the closet then, on discovering the MSM issue with donating blood, I would (assuming I had peaked far another out of the closet to have a MSM encounter) not donate blood, I wouldn't think "well I was going to, and I don't want people to think I'm gay so I'd better go through with it".
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 policy to not accept homosexuals as donors is created by some FDA(?) policy
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.
I already posted this below, but I see that you're affiliated with the Marrow Donor program. I'm reposting this here on the hope that you can bring this the attention of someone who can make a difference.
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?
Quick unrelated question: Could any typing done by 23andme.com be used by the marrow registry? I would think itd be awesome if a voluntary, opt-in data sharing agreement was established between the two organizations. When you login after your genotyping is done, one of the options could be "Do you wish to share your typing information to become a marrow donor?"
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?
They did a donor drive at work some months back. My genetic disorder disqualifies me, even though I'm fairly healthy and off all medication at this point. At the moment, I don't think it would be a good idea for me to donate marrow to anyone as I am still recovering my own health, but this means that even in the future when I may well be healthy enough to be willing and (physically) able, I will still be disqualified. Not sure how to feel about it.
I think that even at a certain point the risk of AIDS (I assume this is the reason) is better than death; so they should let in everyone letting both parties know the risks and say, we can wait longer or you can take this chance.
I'm no doctor/expert so the following is questioning not answering: is there any way to know an exact cutoff, i.e. "if we don't do it this second all is lost". I would assume not.
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.
I (not Kevin) feel no moral objection to lying for a good cause.
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.
When I asked friends to donate for Amit, I had a hard time asking them to lie when donating. This is the limit of "lying for a good cause", especially when the person doesn't know Amit.
A lot of people have this in-built sense that lying must be illegal and it mostly just isn't except in very specific circumstances. This is a clear cut example of lying for a good cause. I do empathize with the refusal of a lot of gay people to subjugate themselves for the sake of a broken system.
I'm morally flexible here. Its a silly policy based on ignorance and fear. If someone gay knows they are safe, why should they feel bad about lying, when a straight person who hasn't been tested and has had unprotected sex recently could walk in and have no issue donating?
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.
