***WARNING - THIS POST CONTAINS FRANK DISCUSSION OF WHAT I CONSIDER ADULT THEMES***
My son's hemophilia does not scare me. I am not scared by the daily questions like "Where did that bleed/bruise/bleed and bruise come from?" or "Hmmm. Shouldn't your clotting factor be actually helping you clot?". I am not scared of blood. I am scared of AIDS.
Recently I heard a brief discussion on NPR about whether or not the standards for donating blood should be revised to include men who have had sexual contact with other men in the potential donor pool. The FDA has recently upheld the current standard of declining to accept the blood of people who fall into this category.
As I listened to the guest talk, I must admit to struggling with a schizophrenic battle between the sickening panic in my stomach and the logic in my head. The idea of any kind of lowered safety threshold makes me deeply concerned. The consequences of contaminated blood is not theoretical for those of us in the bleeding disorders community. It is not a debate over ideologies or value systems or religious beliefs or civil rights. We have good reason to support strict controls on the level of risk we are willing to accept when it comes to blood born pathogens. By the end of the 1980s 10,000 hemophiliacs in the US had contracted HIV and 15,000 were infected with hepatitis as a result of FDA-approved tainted blood product. (To help understand the magnitude of that number you must know that there are currently around 17,000 people living with hemophilia nationwide.) It is well documented that both the government and the pharmaceutical companies knowingly allowed tainted blood clotting product to be marketed to and used by the hemophilia community. Exacerbated by poor blood screening/treatment mechanisms and high risk donors being allowed to contribute to the blood supply, the result was, what I consider, a generational genocide...and the reason my mother was widowed with 4 children before she turned 40.
The NPR guest did a lot of talking about the right to give blood - which, first of all, I'm not so sure is actually a right. Secondly, I do not think it is discrimination to say "Hey, you make risky choices... which may be ok with you, but not so much with us. Thanks, but no thanks." I think it's smart. I don't think it's smart, however, to have guidelines that make people think that they are more safe, while actually doing nothing to improve safety.
The question then becomes, does the ban on accepting blood donations from homosexual men in general improve the overall safety of the collective blood supply. In deciding where I come down on this issue I asked myself: "If my son needed a transfusion (like my 14 month old nephew just received) or a human-derived clotting product, would I consider using the blood of a gay man who has sex exclusively with one person more risky than using the blood of a straight man who engages in sexual activity with multiple partners? Not taking into consideration the infinitely improved screening and treating processes, I would choose the blood of the monogamous gay man over the promiscuous straight man.
When making changes to the screening mechanism, I would prefer that donors be excluded based on the number of partners with whom they've had sex over a given period of time. Quite frankly I don't want my son exposed to the diseases that accompany risky sexual practices, whether those practices are with men or women. It seems to me that this criteria would appropriately identify risky behaviors practiced across all potential blood donors, while allowing those who engage in more responsible sexual behaviors to contribute to the much relied upon blood supply.
In the end, no one can truly police blood donors. It's not as though a list of questions is going to stop someone from donating blood that is considered high risk if they want to donate blood. This is why I am grateful for improved screening, treating and monitoring protocols, as well as recombinant factor that is not derived from human blood product. Constant vigilance is vital and I want to support policies that both actually keep our families safe and demand that those who are in a position of guardianship over that blood supply take their responsibility seriously this time... not just look like they do.
NOTE: Bad Blood is a documentary that was released to limited markets about a week ago. It tells the story of the devastating consequences borne by those in the bleeding disorders community when they were knowingly exposed to diseased blood product. I have not yet seen this documentary, but when it is released on DVD in December, I intend to purchase it. (I am in no way connected to the makers of the film, but am grateful that this chapter of our history to finally be told. Loudly.)
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Amen, e. Great post.
ReplyDeleteHearing the words, "your son needs a blood transfusion" was the phrase I feared the most. It didn't matter how many doctor's told me how safe it was. I couldn't help but think maybe they told my dad that...I hope with steps to keep blood clean and safe Zander also stays healthy.
ReplyDeleteThis comment comes from my mom and was left on my personal blog where this post can also be found. I think that it is important enough to post here as well:
ReplyDelete"The infection was only half of the story. Exposure to HIV was a death sentence to a large population of people with hemophilia. When the imminent death occurred there were many who wanted their loved ones prepared for burial only to be turned away from funeral homes, because the trained personnel at the funeral homes did not want to risk their own health. A tragedy compounded by a lack of compassion for families dealing with something beyond their own control. This story needs to be told."