Fertility controversies, again.

It's been an interesting time in the UK discussion of infertility and treatments recently. The HFEA, the body which regulates the fertility industry, is currently carrying out a consultation to see what it should do to try and encourage single embryo transfer. I'm sure you all know this debate. Here is how it goes:

• Multiple births are inherently bad for the mother and bad for the babies. Even with twins the risks of prematurity go way up, and with that, the risks of cerebral palsy, learning difficulties etc. Once you get above twins the picture worsens again
• Current, legislated practice in the UK is that a maximum of two embryos are allowed to be transferred to women under 40. Over 40, three are allowed
• The aim of fertility treatment is to get women pregnant. Studies have shown that pregnancy rates from two sequential single-embryo transfers are as good as from replacing two embryos in the same cycle. Thus the push to limit women, particularly those who are younger and who produce a reasonable number of embryos, to agree to having a single embryo replaced, and thus to limit the risks inherent in getting pregnant with multiples.
• Various studies have shown that infertile couples, and women in particular, are not fully aware of the risks of multiple births. In fact, twin pregnancies after IVF are coveted by many - "the infertile jackpot" is commonly referred to as boy/girl twins. That way women feel relieved that they don't "have to" think about going through treatment again. Their family is pre-made. In a recent study, however, once the risks were fully explained, the percentage of couples who felt positive about having twins dropped dramatically. So it seems that at least part of the problem is awareness of what you're getting into.

However, there are several other factors involved, which don't get quite as much publicity, although I have seen them discussed.

The first is funding. If you have to pay for a subsequent FET after your fresh cycle, you are presumably less likely to take the risk of replacing just one embryo the first time. In a world where a majority of doctors in the UK want to stop funding for all fertility treatment (although other evidence says that fertility treatment is a cost-effective way to deal with the falling pregnancy rate in developed countries, so another example of short-term cost cutting over long term health of the population), it seems unethical to mandate a lower chance of success for any single cycle.

Second, is the stress involved in cycling. I have seen no evidence that the legislators, regulators and doctors in this discussion fully appreciate just how awful a negative cycle makes one feel. At that moment, the thought of a frozen embryo waiting for you is unlikely to be much succour. So in asking us to agree to single embryo transfers, the HFEA is asking us to agree to increase the frequency with which we are likely to go through that kind of trauma.

Third, is that freezing is not yet a perfect science. If you freeze embryos, you run the risk they won't survive the thaw. So this approach would only be reasonable for women with sufficient embryos that they feel able to take a risk on one or more dying before they even get to transfer. How many of us feel we had surplus embryos at that stage of treatment?

So my position? I would be happy for the HFEA to develop a communications programme that adequately explains the risks of multiple births. This should happen much much sooner than it currently does - what happens now, at least at my clinic, is that on transfer day if you transfer more embryos you get a stern talk from the doctor along the lines of "are you aware of the risks of twin pregnancies," and if you say yes, you get dismissed. People need to know way in advance of that stressful moment that there are major risks involved, they need to know the stats for sequential single-embryo transfers, and they need time to decide how they want to play the risks.

I am however strongly opposed to the HFEA legislating a mandatory transfer of single embryos, no matter how many conditions they put on it (e.g., only for women under 35 with more than 6 embryos at day 3, with no more than one previous failure, etc.). I think it's unethical in a situation where most couples are paying a lot of money for this treatment, to mandate a situation which will immediately become more expensive - perhaps unmanageably so. It also takes away the ability of our doctors to consider our individual situations and help us make a reasonable decision based on our individual characateristics. The letter of the law cannot ever get specific enough to cover every situation. Let's put some trust back in doctors and patients to make the right decision, albeit with dramatically improved information over what is available today.

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In other news today, poor Natalie Evans has lost her final appeal to use the embryos that were created in 2000 from her eggs and her then-husband's sperm. For those of you who don't know the story, the reason for creating the embryos in the first place was that Natalie was dealing with ovarian cancer, so this move was to preserve her fertility. She and her husband subsequently divorced, and in 2003 he requested that the embryos be destroyed, in line with UK law which says that both parents need to consent to using frozen embryos. She has been fighting ever since. I feel absolutely terrible for her, even though I think that legally this decision is right.

What I find unimaginable is the sheer bloody-mindedness of her ex-husband. How bad could it possibly be for Natalie to raise their genetically joint-children without him? Why cannot he agree that her only chance to raise a family that is biologically related to her is more important than his need to see a complete termination of any biological tie between them? And of course, there is no guarantee that she would actually get pregnant, the whole thing is so damn theoretical. I can only imagine how devastated she must be today. The courts were right, but the case should never have got there. This isn't about legality, it's about basic humanity, empathy and the ability to remember that you once loved someone, and that love is worth something. Easy for me to say, I guess.

Comments

[Jenn]

I agree with you on the transfer thing. I'd prefer it be a case-by-case decision between doctor and patient.

Better education on the risk of multiples is definitely needed. I knew all the risks, both in general and the ones that applied more specifically to me. We debated transferring one embryo. I'll admit, even knowing what I did, I still thought twins would be great. But having been through a twin pregnancy (even with no complications), delievery, and newborns, I'm considering a single embryo transfer next time around (if there is a next time).

[Laura]

First time commenter- best of luck on your pregnancy!
I liked what you said about the Natalie Evans case, which I've been following. I am heartbroken for her, but I keep flipping it around. If, in a freak occurance, her fertility was restored and she could go on to have children not from those embryos, but he had testicular cancer or something similar that destroyed his ability to produce viable sperm. If he then asked Evans for the rights to the embryos so he could implant them into a new wife or a surrogate, and she said no, how would I feel? What would I do if my ex-husband asked to use my frozen embryos to have children with a woman I didn't like, or if I thought that he would raise any resultant children in a way that I was deeply opposed to...I'm not sure I'd have the human decency to say "go for it". It's a humbling thought and it keeps be from being too hard on her ex-husband.

[Suz]

Your reflections on the Natalie Evans case put it perfectly. Legally right, morally questionable. I really feel for her.

[MsPrufrock]

Heh. You covered issue number one far more coherently than I, which I suspected you would. Well done.

As for Natalie Evans, I was going to blog about her myself and I still may. Needless to say, I'm not sure about the legal decision that has been made (a few times).

[Mary Ellen]

I completely agree with you that the decision on how many embryos to transfer in a cycle should be made between a woman and her doctor. No legislator, unless they have been through this can possibly understand what it is like to endure a failed cycle. They also probably aren't taking into account that certain procedures, such as PGD, limit the chances of embryo implantation. People who are dealing with complicated genetic disorders and other difficult cases have less than desirable chances of concieving anyway. The last thing they need is to have thier chances of success further impeded by this legislation. I also agree that women need to be made aware of the risks involved with multiple pregnancies.

[luolin]

The Economist had an article about this. They did address the issue of cost, pointing out people are more likely to opt for fewer embryos transferred with more total cycles where the government covers the cycles better than in the UK. What I thought was missing was any mention of the low success rates of ivf to begin with, because I think that makes a difference, logical or not.

For myself, I was very aware of the risks of Higher Order Multiples from reading Jody/Raising WEG, and less worried about twins, though I was concerned enough not to be hoping for them. On the other hand, I was in a bit of denial about how low my chances were at 39 compared to a younger woman.

[Lindsey]

Here Here. To all of it.

Infertility is such a dynamic monster. There are so many variables involved: politics, religion, human behavior, chance, science, etc.

No one can understand it, can know enough to make decisions about it, unless they are or have been in the thick of it all.

[marie-baguette]

My understanding is that some countries already limit transfers to 1 embryo, but in those countries, treatments are free!
I really enjoyed your post, as I feel that people should be more informed about the risks of multiples pregnancies. Re: the Natalie case, it is a very sad story, but as one of the comments said, how would she feel like if the situation was different and she had to give some of her eggs to her ex? Hopefully, science will soon allow women to freeze eggs, just like men can freeze their sperm. Here in the US, we do have tons of papers to sign that lay out what happens to the eggs/sperm/embryos in case of divorce/separation/death. Isn't it the same in the UK?

[Nicole]

How about the problem of most embryos not becoming blasts?? Many women (me included) have never had one embryo be healthy enough to consider freezing. So these legislators are asking me to go through all the sh!t-storm of a cycle to destroy all remaining embryos rather than transfer them? All while I am paying for each cycle? This seems reasonable.

[heleen]

I'm 39 and hit the girl/boy jackpot 10 months ago. If I'd had a singleton I would be thinking about ivf again right now if I had the money. If all went well I would have a newborn and a one and a half year old. I'm very happy with my instant family. Just add water, stir.

By the way: Mony is pregnant!!!!!

[Aurelia]

Hmmm, on the first point, I feel a little more strongly about legislation and rules, but not because of patients. I believe they would choose fewer embryos if they were educated and the treatment was free. The only reason they implant more now, is money.

It's just that over here, we have a certain Dr. who is so incredibly aggressive that all the neonatalogists in town have referred to him publicly with swear words. He stuffs so many embryos into a woman's uterus that she can't help but get pregnant. And when the inevitable multiple results, he congratulates the parents, and pockets his cheque.
One NICU last year was filled completely with preemie multiples just from his clinic alone; babies who went on to neonatal death, months of high risk treatment, and permanent disability.
He's proud of his work, and his colleagues would love to yank his license. But they can't.
So I'm hoping someone, somewhere can regulate him out of business. I wish so much we could just toss him out of the profession instead.

Oh, and science can freeze individual eggs & ovarian tissue, we've been doing it here in Canada, in Toronto and in Montreal for 3-4 years now. Unfortunately too late for Natalie Evans, I feel for her. I wish she had used donor sperm from a friend instead of her husband. I don't know what else she could've done.

[Bea]

Poor Natalie. I understand her ex-fiance's "rights" but there's such a thing as basic human sympathy.

As for SETs, I think it's great to make people aware of the risks etc - I shudder when I hear someone talking about multiples as if there aren't any. But if you want to mandate SETs, you have to make them cost the same as if you were replacing two at a time. Otherwise a whole stack of IVF-tourism destinations (many of which are willing to replace more than two embryos) are going to get *real* popular with infertile couples, and I can't see the NHS saving any money on NICU costs that way.

Bea

[Carrie]

It's a hot potato this one/two embryo tranfer, isn't it? I just hope they argue it out long enough so that I get to make my own choices. I think the biggest misconception by the general public is that almost everyone gets pregnant from IVF so it's really just a case of ordering one baby or twins. Hmmm, if only.
As for Natallie Evans, what a time she's been through. She must be utterly devastated. I feel for her. I can't imagine why her ex husband would see her suffer like this. I hope he truly believes this is the right thing and not just being satisfied that he won.

[Carrie]

Sorry, extra comment.
As for the NHS (or some doctors) wanting to stop funding for fertility treatment. It may not be stopped completely but the obstacles, waiting lists and lack of facilities in my part of the country have made it almost non existant. Unless you have 10+ years to spare then it becomes so difficult there is really no choice but to go private. I think that's not an accident.

[isabel]

I can't imagine what Ms. Evans must be feeling.

I really struggle with vindictiveness, but part of me hopes her ex husband has a hard time finding a partner now that the world knows he is an empathy-free jerk.

[rockmama]

I'm so pleased that things are going so well for you! Dopplers are a total sanity saver during pregnancy.

I felt the same way about the Natalie Evans case. I was absolutely gutted for her, but there was no other decision the court could have made. Her ex-partner seemed to be behaving like a self-righteous dickhead, though, knowing the implications of his refusal to let her use the embryos. It's a huge shame.

[teamwinks]

Poor Natalie. What a terrible predicament. I think you hit the nail on the head.

[millie]

I'm always amazed at how many people (at least here in the US) hope for multiples. I had no such illusions about parenting multiples much less a multiples pregnancy. I think it should be on a case by case basis and lack of insurance shouldn't factor into the equation but until IF coverage is fully mandated that has to be part of the equation.

There is a woman on a board I frequent who demanded her doctor transfer more embryos than usual so she could try for twinds. Mind you, these were from donor eggs. The results were horrible. People forget about the higher tendency of blasts to split so if you transfer three blasts, there's a pretty real chance you could get pregnant with four, five or even six. How incredibly difficult to have to deal with that decision after everything else.

As for Natalie Evans, that's so very sad. Her ex is a total asshole. That's all I can say.

[katty]

I was asked DURING the embryo transfer whether i was sure i wanted to transfer three. After some panicked dithering I said yes, because i wanted to give it the best shot i could and also because i asked the doctor to give me the clinic's statistics on triplet births after three embryo transfers (I was not worried about twin births - it seemed to me something desirable...but also at that point, far off. i was more concerned with actually getting pregnant before i was too old). the chance was minimal.
as for natalie evans... i too felt enormously sorry for her. i understand her ex... but i wish he had been kinder and able to do more for her. poor woman.

[Betty M]

On elective SETs I know from my own experience that I had no real idea of the risks of twins until I was trying for a second and had been involved in IF boards etc long enough to see numerous twin pregnancies result in serious complications, still births and neonatal deaths. I had the leaflet and the lecture but as with many things IVF cycle related I just blithely said yes I understand without really doing so and I usually consider myself a super well-informed proactive patient. Perhaps one way would be for it to be encouraged with people who have blasts? I'm not sure it is fair to make people do it with Day 2 transfers as as far as I can see they cant really tell which if any are going to make it at that stage. Maybe clinics here should also start being more proactive with treatment price deals that include a follow up FET per blast cycle. I have difficulty with the "its my money so I'll have as many put back as I want so I'm going abroad" argument which is prevalent on boards - I don't see people suggesting they pass on the NHS neonatal intensive care when they get home.

Poor Natalie - in ECHR terms she was always on to a loser I just can't understand why her partner wanted to be quite so spiteful.

Hope all is still going well.

[Sara]

It's all so complicated. The previous poster made a good point about the costs of time in the NICU for the results of HOM pregnancies getting passed on to the public. However, the thought of being forced to transfer a single embryo by an inflexible law that knows nothing about the individual situations that women find themselves in horrifies me. What about couples with poor embryo quality? With known genetic issues rendering most of their embryos unviable? It's so easy for legislators to propose a "quick fix" that doesn't fix much of anything for the infertile couples that this legislation is purporting to serve. It really is all about costs and education in the end. Perhaps they could mandate patient education about the risks of multiples instead?

[Angela]

Again, another excellent, thought-provoking post. Thank you, Thalia.
I'm also very happy to hear that your pregnancy is going well. I don't comment often, but I check on you regularly.

[Overwhelmed!]

I have to say that I'm not sure I feel that Natalie Evans' husband was just being vendictive. I believe in human decency, but I think that's a lot to ask of a person, espeically if he's not going to able to be a part of that poetential child's every day life.

Still, I am sorry for Natalie.