Monday, 18 November 2013

Canadian ART law: Saving us from pig-babies since 2004

A few months ago I alluded to the fact that M and I had settled on a plan for moving forward if our upcoming FET fails.  It's probably obvious to most of you that this plan involves donor eggs.  What may not be so obvious is that for a long time, we didn't think that donor eggs were an option for us at all.  That's because Canada has what are probably the most absurd laws ever to be crafted regarding assisted reproductive technology (ART), apparently written after someone watched Gattaca or Species one too many times and decided they absolutely had to protect the Canadian people from the horrible future that awaited them if ART practitioners were allowed to run amok.  Since I'm a former lawyer with too much time on my hands, I decided to do a little dissecting and illustrate the sheer bullshittery that us poor northern infertiles are dealing with up here.

I'll start by saying that the principles behind the Assisted Human Reproduction Act are actually pretty reasonable.  They're mentioned right up front, and include wonderful goals like ensuring the health of children born through ART, preventing discrimination in the provision of ART services, and protecting the health and well-being of women whom the law acknowledges are "more directly and significantly affected" by ART than men.  Sounds good so far, right?  We can all get on board with that!  Let's set up a framework to make sure that all those great things happen!

Or...not.  Instead we could just write a list of all the things that you're not allowed to do.   Let's look at a selection of prohibitions from Section 5, which states that no one shall:
  • create a human clone by using any technique - That's cool.  People aren't sheep.  And heaven knows the last thing we need is another Kim Kardashian. 
  • create an in vitro embryo for any purpose other than creating a human being or improving or providing instruction in assisted reproduction procedures - Also fair.  No making embryos for shits and giggles.  But embryologists gotta learn somewhere, so they get a pass.
  • maintain an embryo outside the body of a female person after the fourteenth day of its development following fertilization or creation, excluding any time during which its development has been suspended - Wait, what??  Embryos can make it to Day 14 in the lab???  Well then how come none of mine can make it to bloody Day 5??? 
  • perform any procedure or provide, prescribe or administer any thing that would ensure or increase the probability that an embryo will be of a particular sex, or that would identify the sex of an in vitro embryo - So gender selection is out?  I don't personally care as I think most infertiles will take what we can get, but there are some cultures out there that have an unfortunate tendency to abort/kill female fetuses/children.  This raises an interesting debate about whether allowing gender selection caters to that discriminatory mindset, or prevents a bigger tragedy down the road.  I don't have the answer to this one.
  • alter the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants - Ah yes, the Gattaca scenario.  Humans aren't to be bred like dogs.  Pathetic that this has to be legislated, but it's a slippery slope.  It starts with someone wanting a blond kid, and doesn't end until there's a race of super-intelligent white supremacists ruling the natural-borns with an iron fist.  Because movies. 
  • transplant a sperm, ovum, embryo or foetus of a non-human life form into a human being - OK wait, this just got weird.  Who would do this?  What female is volunteering to give birth to a gorilla baby?  Good God, there are people who would actually do that for money.  I hate people.
  • for the purpose of creating a human being, make use of any human reproductive material or an in vitro embryo that is or was transplanted into a non-human life form - So gorillas aren't allowed to birth human babies either.  At least that's fair.  It's a two-way street, gorillas. 
  • create a hybrid for the purpose of reproduction, or transplant a hybrid into either a human being or a non-human life form - A hybrid?  Like a pig-baby?  So you're telling me that pig-babies are out, then?
 
Poor pig-baby.  You'll never exist.  At least not in Canada.

All joking aside, once you get past the prohibitions on pig-babies and birthing gorilla babies (or having a gorilla birth your baby, I don't care, you can't do it so stop asking), you get to the really stupid stuff.  As in, this:

(1) No person shall purchase, offer to purchase or advertise for the purchase of sperm or ova from a donor or a person acting on behalf of a donor.

Soooo....yeah.  There's that.  Basically, what the Canadian government is trying to do here is create legislation in support of another one of their main principles, which states that "trade in the reproductive capabilities of women and men and the exploitation of children, women and men for commercial ends raise health and ethical concerns that justify their prohibition".  Which, yeah, OK.  No one wants anyone to be exploited.  But I think we can all agree that there's a huge difference between having a warehouse full of illegal immigrants undergoing egg retrieval after egg retrieval for the financial gain of their underground egg-lord, and being able to pay a willing donor a couple thousand dollars for the pain and suffering of undergoing an egg donation cycle.  As it currently stands, an infertile couple can only compensate a donor for her out-of-pocket expenses.

Sure, yeah, I'll spend several weeks injecting myself with mood-altering hormones, waking up early to have my vag probed, and undergoing a surgical procedure involving a giant needle poking into my lady-bits.  That'll be $62.00 for subway fare.  Thanks!  Clearly, no one involved in drafting the legislation has ever undergone an IVF treatment.  Lucky them.

What probably bugs me the most about this is that, when writing the Assisted Human Reproduction Act in 2004, the Canadian government had the chance to do things right.  They could have instituted a set of controls on egg donation designed to ensure that no one is exploited while still making egg donation a viable option for couples struggling with infertility.  They could have placed a monetary limit on donor compensation, making it less likely that desperate donors would put themselves in harm's way out of financial need or that recipient couples would offer ridiculous sums of money to encourage donors in financial straits.  They could have put a system in place to ensure egg donor health, so that donors can't donate more than a specified number of times per year, or clinics can't put donor health at risk by attempting to retrieve more than a certain number of eggs per cycle.

But no.  Instead, we have the current system which basically outlaws donor egg completely, unless you're able to find a completely altruistic donor.  In my case that would have been my sister, up until she started having her own fertility problems about a year ago.  The other alternative is to go online to the underground marketplace of donors offering their services on fertility message boards or Craigslist.  And yes, both things exist.  I wasn't even searching for them and I found them while researching donor egg options.  Which means that the Canadian government has essentially created the very problem that the legislation was attempting to prevent in the first place.  Way to go, guys.  Stellar job.

As a result, if we want to do donor egg we won't be doing it in this country.  I don't have anyone who can give me eggs for free, and I'm not willing to wade into the black market to buy some.  We had initially ruled out donor egg entirely, based on the exorbitant prices that I was finding for clinics in the US.  But then a co-worker told me about another colleague who did donor egg in Europe, and I started researching.  And donor egg became an option again.  We haven't settled on a clinic yet and we're still in the very preliminary stages of figuring it all out, but at least we have the comfort of knowing that our journey won't necessarily end if this FET fails.  Which is enough to keep me going for now.

26 comments:

  1. Thanks for gathering all that info. Pretty interesting
    As you may know I'm originally from Europe, Switzerland to be exact. Switzerland also doesn't allow donor eggs and people have to travel. A friend of mind just had a successful cycle with a clinic in Spain. Based on all the info I got from her the clinic seems to be top and has a lot of very detailed tests they require prior to a transfer. It totally reminded me of everything I've heard about CCRM.
    I could get the name for you if you'd like. Just let me know.

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  2. Wow, what a crazy stupid law. Is it weird that I find it oddly comforting that my new, future home is just as screwed up as where I'm coming from, just in different ways? I hope you don't need it, but I'm glad you have options elsewhere.

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    1. Oh yeah, we're definitely screwed up in different ways. And Quebec is a special kind of screwed up. Can't wait to hear what you think of it!

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  3. Ha. I am sure I'll have the image of pig-baby in my dreams tonight. That IS a crazy stupid law... Glad you found an option other than coming to the States and paying an arm and a leg. But... I really hope that the Lupron Depot does its magic and the FET will be it for you.

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  4. If your search brings you anywhere near the SF Bay Area, you and M have a place to stay during your treatments.

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    1. Same goes should you ever find yourself in Toronto! I swear, we're not all overbearing crack-smoking assholes like our now-infamous mayor.

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  5. I sat here this morning and read your entire post, I could not get pig face baby out of my head the whole time. I might even have a few nightmares in the coming nights.

    Sorry to hear that Canada isn't open to DE. I am happy that you might have found a way around it thought. Hoping that your upcoming FET is a success!

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  6. There are always crazy people out there who do terrible things and shock the rest of the world that they were actually willing to do what they did. I guess what I'm trying to say is, it's a good thing we have all these specific laws preventing crazy scientists from experimenting with human life in their lab!

    With regards to donor egg, I considered donating. The laws around financial reimbursement for egg donation are similar to adoption expenses. The recipient (or adoptive family) can only reimburse the donor (or birth mother) for out of pocket expenses. Which I think makes sense, but definitely deters the majority of people who have thought of donating from doing so.

    I know if I were in your situation, I would go abroad for treatment. I loved doing my IVF in Mexico!!

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    1. Yeah, you're probably right on requiring laws to stop the crazy scientists. But I really do think that some compensation for donors besides out-of-pocket expenses is warranted. It's not a quick process like donating blood or sperm, it's a huge medically invasive procedure. I think there should be some recognition of the non-financial costs (time, comfort, stress on the body) that a donor incurs. I think the rule makes sense for adoption (since you definitely don't want people having babies to get money for them) but my own personal view is that it's too restrictive to place the same criteria on eggs.

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  7. Oh my goodness - those laws are crazy!! I do know, though, that if there's a will there's a way. If this is the route that you end up taking, you'll find the path that you have to travel :) xoxo

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  8. The law about not compensating donors certainly makes it more difficult. I wish they would have followed ASRM's guidelines, which I find reasonable. For example, donors should only donate 6 times in their life. Donors should all be paid the same, not more or less based on their features, education, etc. Donors should not be paid more than $10,000 etc. If you consider this further I highly suggest the Parents Via Egg Donation forum. I was on that thing all the time before and during our fresh cycle. So much useful info and experience!

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    1. This! 100% this. Regulate donation, make it as safe as it can be, make it so that people aren't doing it to get rich. All great things they could have legislated but didn't. Thanks for the forum referral, I'll check it out when the time comes.

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  9. Yes, our laws on not allowing compensation to gamete donors are stupid. I daresay that's why we have such a terrible shortage of sperm donors (a problem I ran into way back in the day, pre-husband).

    Fingers crossed that your FET is The One and that you don't have to look outside the country for donor eggs.

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    1. Interesting, I had no idea this issue had impacted sperm donations as well. I honestly find that kind of surprising...I didn't think most guys would need to be paid to play with themselves. But reading up on all the testing and stuff that's required first...yeah, I can see how it would affect things.

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  10. That is the creepiest picture ever. Now that I have that out of the way, I'm sorry that Canada makes it so difficult to use donors. Usually I think of Canada as our more civilized and reasonable neighbor to the north; I guess US consumerism has trumped any effort to curtail paying donors. I was watching Diane Sawyer do a story on how much we pay egg donors. It wasn't overt, but it wasn't subtle, but they were implying that it was questionable to pay donors, particularly when there was no long-term research on the effects of ER on the human body. Oh, and she threw in that models get paid quite a bit more than regulars. Luckily the model/donor said that she wasn't doing it for the money, but rather to help infertile couples. I feel like maybe they probably all say that, but at least she wasn't like, yeah, I just want to buy fancy clothes and purses. Sorry this is so long, but just one more thing. You've probably already looked into this, and who wouldn't want to go to Europe, but I know that my clinic is freezing DEs to be thawed, fertilized and then transferred, which might be a less expensive option than a traditional DE cycle. I haven't looked into it extensively--it's one of my early spring activities, but their website says it's a significant cost reduction. I'm actually leaning towards doing that if I end up needing DE--I'm super impatient and in addition to being a cost savings, this speeds things up significantly since you don't have to sync your cycles or wait for donor availability. They were advertising heavily for donors as I was leaving the area. And just in case you want to look into it, I'm at Shady Grove Fertility in Washington, DC.

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    1. Shady Grove is doing frozen egg cycles? My RE actually recommended their fresh egg-sharing cycles with shared risk guarantee (since they've worked with them in the past and they'll allow patients to do their monitoring at our clinic to save on travel), but even those are still ridiculously expensive. They don't post their costs on their site but I've read it's 30 grand easy, minus travel. I didn't see anything about frozen eggs on their site.

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    2. I don't know their cost of a fresh donor egg cycle, but I do know that traditional IVF is about $9K + meds, the 2 rounds is around $17K + meds and the guarantee is around $20K + meds (I can look up the exact prices when I'm back from vacation). Freezing your eggs starts at $7500 and then reduces a bit So, the frozen egg fee would have to cover that. Here is the link on their site about DE: http://www.shadygrovefertility.com/donor_egg. Frozen Egg Bank is the last section on that page. If you click on the financial option link, there's a .pdf chart that goes into some vague description about the cost, for frozen egg it says the costs are similar to a fresh 1:2 program. By the time I get all the details, you'll probably be too far along, but hopefully my traditional IVF costs give you some idea. It's a lot to pay, but they have all my eggs and their lab is supposed to be one of the best.

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  11. And here I thought Canada had a leg up on us Americans in regards to all things medical. But no pig-babies! WTF! Donor egg is very legal in the U.S. (though not quite as romantic of a locale as Europe). It isn't cheap - that said it's not cheap to break your leg while voting in the U.S. - but it is available close to home. And, as is our culture, our medical system will take absolutely anyone's money. I know someone who had a very positive and successful donor egg experience at Fertility Center of Illinois.

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  12. I laughed so hard reading about pig babies and gorilla babies. I'm on CD1 and slightly drunk and really digging the black humour.

    The Canadian laws about donor eggs are crap. Our clinic has an arrangement with US donor banks whereby Canadian can buy eggs from them. I'm not sure how exactly this is legal but I guess there are loopholes in the law and it is OK to use them. We will consider that if we decide on the donor egg route. I have no sisters or close female relatives and I can't see my friends being egg donors. Anyway, I think it might be rather weird for us to have a family member or friend donate, even if one was available/willing. I would prefer a compassionate, well-informed and well-compensated stranger. I haven't seriously looked into it though, because I have yet to wrap my head around the concept. I am curious to learn more about the international route you are investigating, too.

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    1. My clinic is apparently in talks with Shady Grove (discussed above) to buy frozen eggs to make available to patients in Canada. You're right, I have no idea how it works...perhaps they work the cost of the eggs into the "cycle fee" so that you're not technically "buying" eggs? Anyway it's not something that's finalized yet but if it happens then that would potentially be another option, depending on cost. I'll keep you posted. I only started seriously looking at it myself recently.

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  13. I am going to have nightmares about pig-baby. Thanks for that.
    Sounds like Canada had good intentions with the law but didn't execute it very well. It isn't unreasonable to compensate a donor for the time and effort required to donate eggs. They could put limits on it instead of just banning it. Hopefully, the FET works and donor eggs won't be an issue.

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  14. Crazy how the very thing Canada was trying to avoid, resulted in that very thing with the black market. Also crazy is how accessible the back market seems. I would be scared to try it, but then, I'm a goody too shoes. I'm glad you are not out of the game and are looking into other options. I wish you the best of luck, but mostly, I'm hoping you don't need it because this FET is going to work!

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  15. My clinic combined my husbands sperm with hamster egg.... Can you find a pic of what that might look like?

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    1. Seriously??? And no, I cannot. All I found were people in hamster costumes or running on hamster wheels. My Google-fu has failed you.

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  16. As a fellow Canadian, I hear you loud and clear on this issue.

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  17. Hi there! I just found your blog. I am also Canadian (and in Toronto also) and had heard this. However, my clinic (Create IVF) does donor egg through the agency "Little Miracles", based in Ontario. You might want to look them up and get more information, before going abroad. We are considering this, but doing another IVF with my own eggs first. Good luck!

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