Monday, May 05, 2008

Appropriate, or too exclusionary?

I received this note last week during a BIDMC bone marrow registration drive:

Hello Paul, I'm writing to let you know that I really felt like a second class citizen today, when I went to register at the Bone Marrow Registry drive and was turned away because I am a gay male. I've been in a monogamous relationship for many years and when I read that if you have sex with men you cannot be a donor, I was really upset. I asked for a clarification from one of the folks there and they did uphold the Red Cross blood donation restrictions. I was not the only person turned away today. I do feel better after writing this email to you but I just really wanted to let you know about this experience.

I inquired of one our leukemia specialists, who replied:

The national marrow donor program follows the rules used by the Red Cross to screen volunteer blood donors. This includes taking a personal history and excluding people with exposures that put them at increased risk for infectious diseases. Reasons for exclusion include sexual history but also travel exposures and other categories. I am sorry if a person who was enthusiastic to help felt frustrated by the process. It is imperfect but meant to protect all involved.

My reply:

I'm just surprised that homosexuality is still considered a risk factor.

The response:

Understood, this is a hard issue that we don't really have control over. On a positive note, the drive went really well and we had 77 new donors enrolled in the national marrow donor program that might one day be involved in offering life saving therapy to patients with blood cancers. Something for the BIDMC community to be really proud of.

Of course I understand why we have to follow the national rules on this matter, and we certainly are going to continue to seek volunteer donors. Here is a pertinent excerpt from the rules:

You should not give blood if you have AIDS or have ever had a positive HIV test, or if you have done something that puts you at risk for becoming infected with HIV. You are at risk for getting infected if you are a male who has had sexual contact with another male, even once, since 1977.

I wonder if people out there have an opinion on the clinical validity of this particular aspect of the rules. Is this still controversial or generally accepted? Here is one article I found from 2000 concerning a decision by the FDA to uphold this rule, and here is a more recent article on the general issue.


Anonymous said...

I haven't researched this issue recently but, as a retired blood banker, I have to agree with Dr. McClelland in your cited article. It comes under the heading of 'better be safe than sorry' - e.g. there IS a window, albeit increasingly small, of time where current HIV detection tests may be falsely negative, and therefore groups at statistically higher risk are excluded from blood donation. Although I would feel discriminated against too, in this case I feel like medical safety rightly trumps people's feelings. There are many groups in our society who are discriminated against for a variety of reasons; I feel this reason is more justifiable than many.

I might add that many groups of people, such as travelers to endemic areas, are excluded from blood donation for other reasons such as malaria transmission also. This is not just some made-up vendetta involving only HIV.

Others who are not retired may have more current information.

Anonymous said...

I am not a medical expert, but aren't the latest trends with HIV that straight females are now the population contracting the disease at significantly higher rates (not sure if this was media hype or actual medical fact)? Can you imagine the guidelines excluding all straight females for that reason?

Anonymous said...

The ban on donation by homosexual men is not the only outdated rule around donor eligibility. I know just how this person feels, as I am excluded as an HIV risk because of my hemophilia treatment. I could detail my life story here, but to cut a long story short, I was not treated with clotting factor until it had been made safe from infectious disease. Even then, I was only on a plasma-derived product for a few months before switching to an even safer recombinant product.

I feel extraordinarily lucky to have been one of the few hemophiliacs in my generation to escape infection by HIV and HCV. I can be sure that I am one of the lucky few because I have tested negatively annually for my entire life. Despite this, I am seen as a risk for introducing HIV into the blood pool, simply because I receive clotting factor that doesn't even have any human-derived components. It's a very frustrating experience.

Thanks for the opportunity to vent. Perhaps stories like mine will finally convince the powers that be of the shortsightedness of rules to exclude such unnecessarily broad swaths of the population.

Anonymous said...

The problem with the men who have sex with men ban is that it does not distinguish between people who engage in risky behaviors and people who don't.

A man who has had anal sex with a condom with an HIV-negative man twenty years ago and has tested negative every year since then is ineligible while a woman who had anal sex without a condom with a man she knew to be HIV-positive thirteen months ago is eligible.

There is no way that anyone can defend that as scientifically-based.

I understand it's not BIDMC's fault, but the national rule should be changed.

Anonymous said...


Since they came up right next to each other in my feed reader this morning, I linked this post in a Boing Boing discussion thread about the National Marrow Donor Program; a response in that thread noted that the Caitlin Raymond International Registry does not have the male-male sexual contact restriction. (I've not confirmed this, nor do I personally know anything else about the program.)

Anonymous said...

Amen to anonymous at 10:11am!

Anonymous said...

I'd be curious to know which scenario would be statistically more likely:

1) Someone dies due to lack of a bone-marrow match, because willing lower-risk donors who might be matches are currently being turned away.

2) Someone dies due to HIV after receiving bone marrow from a gay man in a monomgamous relationship who tests negative for HIV.

In an ideal world, only virgins would be donors, and there would be enough of them to supply all of the bone marrow needed. In our non-ideal world, the Red Cross and Bone Marrow Registry should do a better job of balancing risk vs lack of sufficient donors.

According to the National Marrow Donor Program about 10,000 patients per year have life-threatening illnesses that require transplants, but the group has done only 5,000 transplants in the last 16 months. This would imply that over half of all patients are dying for lack of a donor. I suspect the odds that a monogamous gay man who tests negative for HIV, then actually manages to pass on HIV through bone marrow donation, has to be many orders of magnitude less than 50%.

Anonymous said...

Personally, I stopped giving blood years ago due to these homophobic policies. I am not an excluded individual, but I cannot support this type of discrimination. Unfortunately, the patients are the ones who lose out, but if there is enough of a resistence, perhaps the national policies will be revisited.

Maureen Cawley said...

As a nurse on our BMT unit, I have personally seen patients pass away awaiting a match for a stem cell transplant. I can't speak for everyone, but I can say with a great deal of certainty that most patients would GLADLY accept stem cells of those persons the ARC has deemed *high risk* (and really aren't). The risk posed by actually having a transplant (or not having it for that matter) far outweighs the risk of contracting HIV from a donor who happens to be a gay male.

PJ Geraghty said...

I hate to chime in late, but I am involved in organ and tissue donation and wished to add a couple of notes:

-> it is the Food and Drug Administration (FDA), not BIDMC or ARC or any other non-governmental agency who has made this rule. The FDA regulates donated blood, tissue, bone marrow and reproductive cellular products.

-> The rule is based on admittedly-outdated findings by the Centers for Disease Control (CDC) as to what constitutes high-risk behavioral risk factors for contracting HIV and/or hepatitis

-> the rule is also based on the idea that these products (hereinafter referred to as tissue donation) are either not life-saving (as in the case of tissue and reproductive tissue) or are "renewable resources" (as in the case of blood, bone marrow, and reproductive tissue, whose donors can and do re-donate). This is the reason that people excluded from tissue donation are not excluded from organ donation: organs are a non-renewable lifesaving resource. Obviously there's a challenge here in that many BMT candidates are dying from lack of a donor. This is something that the BMT constituency (care providers and atients) should address with the FDA. However, because so many of the BMT registries are run by blood banks, getting the blood banks to set up separate systems for BMT registry might be challenging even if the rules are reversed.

-> Anonymous 5-8@0740: you're only hurting innocent people by refusing to donate blood because of the perceived injustice in excluding potential donors. You're certainly not "helping" those who are forbidden from donating blood. A "donor strike" will only hurt potential recipients.

-> Whether we like to admit it or not, blood transfusion does have a history of transmitting both HIV and hepatitis, and the blood banks did an abysmal job of policing themselves before the FDA stepped in to regulate the industry. Read "Bad Blood" by Judith Reitman for more information about this.