NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. As of Monday, the procedure of freezing women's eggs is no longer experimental. The announcement from the American Society for Reproductive Medicine should make the controversial practice more widely available and increase pressure on insurance companies to pay for it.
The first human birth from a frozen egg was reported in 1986. There have been many hundred since. Doctors and scientists found no increased risk of birth defects, but the procedure remains controversial. It's expensive, it doesn't always work, and some have ethical questions about women who use the procedure to effectively stop their biological clock, they have eggs removed and frozen when they're younger for use when they choose.
We want to hear from those of you who have made this decision or are considering it. Call and tell us your story, 800-989-8255. Email, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later in the program, we'll talk with a man whose dream job turned into a national joke: life as one of football's replacement referees. But first the changing science of fertility. Last spring, Suleika Jaouad got a diagnosis of leukemia. At the age of 22, she had to deal with cancer and the fact that the treatment would leave her infertile. She's chronicling her experiences for the New York Times in a column called "Life, Interrupted" and joins us now from our bureau in New York. And it's great to have you back on the program.
SULEIKA JAOUAD: Thanks, Neal, I'm happy to be here.
CONAN: And how are you doing?
JAOUAD: I'm doing well.
CONAN: I understand when you got the diagnosis, you didn't learn about the option of freezing your eggs from your doctor.
JAOUAD: I didn't. I actually found out about it online as I was Googling side effects of the chemotherapy I was scheduled to undergo in less than a week.
CONAN: And why didn't the doctor tell you?
JAOUAD: I think that for a lot of people who've received a high-risk cancer diagnosis, time is of the essence, and there's not always time to do fertility treatments, especially for women, because it can take several weeks to harvest eggs or embryos. My doctors weren't sure if fertility preservation treatments were going to be an option for me.
CONAN: Well, do you feel that they should have presented it to you anyway and let you make the decision?
JAOUAD: I was initially, you know, shocked and a little bit upset, especially to be finding out about all of this online. But once I brought it up with my doctors, they were incredibly supportive and went ahead and made arrangements for me to go to a fertility clinic and even applied on my behalf for a grant from the Livestrong Foundation to cover the costs of my fertility treatments.
CONAN: Which are not insignificant.
JAOUAD: No, they're around $25,000, and in my case, the egg freezing was not covered by my insurance.
CONAN: So tell us about that procedure. Was it difficult?
JAOUAD: It was very intense for me at the time. I was facing both this new cancer diagnosis while also having to suddenly talk about eggs and embryos and sperms at the dinner table with my boyfriend and my parents, which felt very awkward and very premature at 22 years of age.
CONAN: And eventually of course you have to talk with them, but you have to make the decision.
JAOUAD: Correct.
CONAN: And how did you balance that between the prospect of children in the future and the prospect that if you delayed that treatment, you might not have a future?
JAOUAD: It was extremely important to me to preserve the option of one day being able to have my own family. Planning for the future was a hopeful act, and in some ways, the idea of having children one day was my lifeline to a future that at the time felt very uncertain.
CONAN: What was the egg retrieval like?
JAOUAD: So for the - it took about three weeks. Every single day I would inject myself twice a day with hormones, and about every two days, I would go into the fertility clinic to get an ultrasound. The actual egg retrieval process took about an hour, tops. I was under anesthesia, so I don't remember much of it.
But it was actually, you know, more awkward for me than anything. My boyfriend and I were in our early 20s, we were unemployed, and we would go to this fertility clinic, and we were by far the youngest people in the room. I'd be sitting there with my Class of 2010 college sweatshirt, kind of looking at my shoes and feeling really out of place.
CONAN: The other women were, what, 10, 15, 20 years old than you.
JAOUAD: Yes, and they all seemed to be, you know, on their way to an important meeting and wearing suits and high heels.
CONAN: As you've now undergone the procedure, the eggs, do you think about the eggs?
JAOUAD: I do. I know they're somewhere in a freezer in midtown Manhattan. I think about, you know, if I'll use them and what that would mean. And I also can't help but wonder if, you know, one day I'll actually arrive to a place where I'll be healthy enough to use those eggs and to try and have my own family. For me, they very much represent hope.
CONAN: What's the prognosis now?
JAOUAD: I had a successful bone marrow transplant this spring, and I'm doing well. I'm actually cancer-free for the first time. I'm still in chemotherapy because I have a very high chance of relapse. So I'm still fighting. But I've never felt better in a lot of ways.
CONAN: You talked about the strains of going through this decision with your boyfriend. How are things with that?
JAOUAD: He was incredibly supportive of my getting my eggs frozen and much more mature about it than I would have expected for a 20-something-year-old man, boy. But my doctors and my family, you know, stood by my side throughout this whole process, and it was a bit of a whirlwind for me.
I had to get my fertility treatments done as soon as possible so that I could enter the hospital to begin my first chemotherapy treatment.
CONAN: And those, we know, are no fun. So let's bring another voice into the conversation, Dr. Samantha Pfeifer, associate professor of obstetrics and gynecology at the Perelman School of Medicine at the University of Pennsylvania. She chaired the committee that made the recommendation that freezing eggs no longer be deemed experimental and spent this past week at the group's annual meeting in San Diego. She joins us from there at member station KPBS. And very good of you to be with us today.
SAMANTHA PFEIFER: Thank you very much for having me.
CONAN: And as you listen to Suleika's story, obviously this decision is very different for every woman who's involved, and obviously the situation is different for women in her situation, where there's cancer treatments involved, and women who make this decision electively.
PFEIFER: Yes, certainly. I think this really is the greatest advantage for patients who are facing chemotherapy and the thought of losing their fertility. I think we've really come a long way in being able to provide this service and give these women hope, and it's really very exciting that this is no longer experimental, and more women will have access to this technology.
CONAN: Well, how so? Just because it's not experimental anymore?
PFEIFER: Well, if it's experimental, then really the service should be provided under an IRB so there's full disclosure to the patient that this is not a proven technology. So now that we have a lot of evidence that the procedure is safe and has been successful in young women, then we can say really it's no longer experimental and can be used.
So it really opens up the number of places that can offer this and the number of patients who have access to this procedure.
CONAN: And the more clinics that can offer it, as well.
PFEIFER: Correct, yes.
CONAN: And is this, do you think, going to be a big business?
PFEIFER: I think it is. I think there's a lot of applications for this procedure not only for women who are facing chemotherapy or radiation with the thought of losing their fertility but also for women who are in the process of going through in-vitro fertilization, and for some reason there's no sperm, their partner's unable to produce a sperm, or there's no sperm at a surgical procedure to extract the sperm.
I think that this will also be important in the future for women who have other medical conditions that may - they may lost their fertility, such as Turner's Syndrome or other conditions such as that. And other applications would be for donor eggs.
I think, you know, currently when we have a woman who donates her eggs to another individual, there is no quarantine process, and so the eggs are taken from the donor, fertilized with a partner's sperm and then transferred into the recipient, but there's no quarantine process, and the concerns are that there could be transmission of some disease.
There are certainly safeguards taken to prevent that, but if we can freeze the eggs, that would then sort of eliminate that process. The more controversial application of this technology is for women who would like to preserve their fertility, and there are sort of two groups of women in this category.
One is women who are older, late 30s, early 40s, who may not have someone with whom they would like to have a child or do not want to embark upon this on their own, and preserving eggs at that age. The problems are that women who are older, this process is not as successful.
Younger women, a very controversial area and one that we do not support, is the freezing eggs at a woman who is, say, 25 for potential use later. And I think this raises a whole set of issues whether women electively deferring their childbearing is reasonable, whether extracting eggs from a young woman at 25, what is the likelihood she will use those eggs in the future.
Certainly, you know, between the age of 25 and 40, many women will find a partner and attempt pregnancy on their own and be successful. And then the issues of the safety of this procedure, we don't know how long eggs can be frozen safely, and if you're donating eggs at 25 to potentially use at age 40, that's a long time to be frozen. We're not sure if they could live that long or survive that long.
And then the ethical issues of, you know, forcing people to do this or putting expectations oh, you should do this to preserve fertility. And then the other bottom line, really, is that this is no guarantee. If you have eggs frozen, there's no guarantee that will allow you to have a family later.
So I think in this population, we really do not recommend proceeding. There are very little data to evaluate the success of this application. And we're very reluctant to proceed or recommend pursuing this for that indication.
CONAN: Dr. Pfeifer, we're going to ask you to stay with us. Suleika Jaouad, thank you so much for your time today. We'll let you get back to, well, rest. I think you need some rest.
JAOUAD: Thank you.
CONAN: Appreciate it. Suleika Jaouad joined us from our bureau in New York. She's chronicling her journey with leukemia for the New York Times in a column called "Life, Interrupted" that runs Thursdays on the New York Times "Well" blog. She joined us from our bureau in New York. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Roughly 1,000 babies have been born from frozen eggs since 1986, worldwide. The new guidelines backing the egg-freezing procedure deal primarily with women who face fertility - infertility, like our previous guest, Suleika Jaouad, because of side effects from treatment from cancer.
But the recommendation opens the door to just about anybody who can afford it. Sarah Elizabeth Richards wrote about her experience in an op-ed in the New York Times earlier this week. She wrote: I first learned about egg freezing from a friend who had talked with her OB/GYN about whether she should freeze. When I asked my doctor about the procedure, she said she had heard that the success rates had recently improved and gave me the name of a respected fertility doctor.
As a result, I stashed several batches of eggs between the ages of 36 and 38, just before the cutoff at which many doctors consider eggs worthwhile to save. I was fortunate because I knew to ask. We must go one step further and expect OB/GYNs to bring up family planning at every annual visit so women have the information they need to choose to take charge of their fertility.
We've posted a link to Sara Elizabeth Richards' piece at our website, that's at npr.org. Dr. Samantha Pfeifer led the committee that recommended removal of the experimental designation from egg freezing. She's director of reproductive surgery at the Perelman School of Medicine at the University of Pennsylvania, and our guest today.
We want to hear from those of you made this decision or are considering it. Call and tell us your story, 800-989-8255. Email talk@npr.org. You can also join the conversation on our website. That's at npr.org, and click on TALK OF THE NATION. And let's start with Lisa(ph), and Lisa's with us from Circe in Arkansas.
LISA: Hi, thank you for having me. We went through in-vitro and the ICSI procedure in 1999, and I so wish that this had been available then on a regular basis because we were faced with 32 eggs that were retrieved and 23 viable embryo, and it would have taken away so much of the ethical dilemma that we faced with having viable - 23, what do we do with this because it wasn't a female factor in fertility, it was a male factor, and my body responded really well to the medications.
And I wish that we had had the option to freeze those eggs then.
CONAN: Well, let's hear from Dr. Pfeifer. What's changed in the technology that's - in the intervening years?
PFEIFER: Well, I think you bring up a very good point that I failed to mention earlier that another wonderful indication for this technology is avoidance of creation of too many embryos. So, if there's a lot of eggs, we only need to fertilize a certain number and then can freeze the eggs for later use and avoid storage of all these embryos. So this technology really is excellent for this indication.
What's happened is in the last really five or so years, the advances in the ability to freeze eggs has really improved significantly. Eggs are very hard to freeze. They're filled - they're mostly water, and when you freeze water, ice crystals form. So it took a long time for the technology to develop that could freeze eggs without causing ice crystal formation, which damages the chromosome spindle.
So really that's what has happened in the last several years, and the biggest advance has been with the procedure called vitrification, which is very fast freezing of the egg. And this has really allowed for less damage to the egg during the process and much better survival of the egg.
So I think this really has allowed egg freezing to be really very widely applicable. Interestingly in Italy, they have pioneered this technique because in Italy, the government restricted the number of embryos that were frozen, so in Italy this technique developed to avoid the situation that your caller had, where you don't - where you cannot freeze or you don't want to freeze all these eggs for embryos, and then you have the burden of what to do with these embryos later, which is a big strain, I think.
If you face fertility and have no children, and all of a sudden, you have these frozen embryos, it's daunting.
CONAN: Lisa, what did you end up deciding?
LISA: We eventually ended up having them all transferred. Not all of them survived thawing. We have two beautiful daughters that are 10 and 12, and I hope that - I'm really excited for them that if this technology is available now that if they face similar problems, they won't have to face those dilemmas.
CONAN: Thanks very much for the phone call.
LISA: Sure, thank you.
CONAN: And congratulations on the kids.
LISA: OK, thanks.
CONAN: And as we look ahead, there are other questions, Dr. Pfeifer. We mentioned there are - one of the reasons this is no longer experimental, there's no greater rate of birth defects from children who are born through this procedure. But do we know for sure? How old are those kids now?
PFEIFER: Well, you bring up a very good point. I mean, there's about 1,000 reported pregnancies or deliveries from this procedure. There are probably many others that have never been reported in the literature, but those are hard to evaluate. So of the 1,000 babies that have been reported born from this procedure, there is no increased risk in birth defects. And as you said, they're looking at defects that happen at birth.
There are no - the children are really not old enough to evaluate any long-term developmental issues that may arise from this procedure. So I think that those are things that clearly need to continue to be evaluated over time, and I think really these thousand children that have been born is preliminary data. It is very reassuring that it appears to be no different than what we see with IVF itself or in the general population.
So it is preliminary data, and we really need to continue to follow these children that are conceived from frozen eggs and watch and see what happens over time, just as we are with IVF.
CONAN: There's also questions about, well, not just frozen embryo but frozen eggs, if they're out there. What if somebody decides, and is able to have, children the regular, old-fashioned way, and what happens to the eggs then?
PFEIFER: Well, then that is another issue that we have with this whole process of freezing eggs. What do you do with all the eggs that are left? And I think that there's got to be a lot of storage facilities created to store all these eggs. I think that as far as sort of an ethical or - ethical dilemma, if you have eggs frozen, then they could either be donated to someone in the future, or they could be destroyed.
And I think that it's a very separate issue, considering what to do with a frozen embryo, which is a fusion of egg and sperm, versus an egg, which really by itself is not viable. So I think there's a little bit less of an issue, but certainly what to do with these, they can be stored for however long, and then a disposition has to be decided upon.
CONAN: Let's see if we can go next to Amanda, Amanda on the line with us from Salt Lake City.
AMANDA: Yes, hi. I just had a question concerning the quote-unquote "age of eggs." At 36, we had gone in for the intrauterine insemination, and they had taken a look at my eggs for that procedure and had told me that I had old eggs at age 36. And the doctor had said that sometimes with women, you could be 40 years old and have, quote-unquote, "20-year-old eggs" and vice versa. And I was just curious: What has your experience been on the age look of eggs?
CONAN: Dr. Pfeifer?
PFEIFER: Well, I think you've raised a very important issue. Certainly we know that fertility in women declines starting at about age 35 and decreases dramatically after age 40. And this really, probably, all relates to the ability of the egg to have a normal chromosome content. What happens is as the egg is prepared to ovulate or be released from the egg - the ovary, excuse me - there's a division of the chromosomes. So that if the chromosomes do not divide equally, then you can have one extra chromosome or one less chromosome.
And this is referred to as aneuploidy. So the rate of aneuploidy increases as the maternal age increases. So, you know, a 35-year-old may have, you know, a certain percentage of having aneuploid eggs, but certainly in a 40-year-old, there may be 40 percent of the eggs are aneuploid, even 50 percent. And at age 45, almost all of them may be aneuploid. So this is really one of the factors that contributes to the age of the egg.
Unfortunately, it's very difficult to determine what a person's age of their eggs based on their chronologic age. So that makes it very difficult to predict who will get pregnant and who will not get pregnant at age 36 or 38.
CONAN: Amanda, what did you decide to do?
AMANDA: Incidentally, we had already had two pregnancy losses, and at that procedure, we went ahead with it. I had done the fertility injections and (unintelligible) treatments and what have you. And we went ahead with the insemination, and I was actually pregnant at the time with an ectopic pregnancy, which no one knew. I had not even known because I had gone through a regular menstrual cycle.
And after that third loss, we have put in paperwork for adoption and, you know, hopeful there, and then at the same time with the ectopic pregnancy, I ended up in the emergency room with emergency surgery and had one of my tubes removed.
So we're now kind of, you know, hoping for a miracle, but, you know, every now and again I keep thinking, oh, I wish I had frozen my eggs at 20 or 25, what have you. But, you know, I was just curious. Would that have mattered? Would I have still had, you know, quote, unquote, "old eggs?" So thanks for answering that question.
CONAN: No way to know about that. Good luck with the adoption.
AMANDA: Thank you.
CONAN: Let's see if we go next to - this is Anna(ph), Anna with us from Richmond.
ANNA: Yeah. Hi. How's it going? I am somebody who underwent the procedure for retrieval and freezing of eggs, and I did it three years ago as a single woman sort of to try to preserve some - you know, keep my biological clock ticking a little bit longer. And I guess I had a couple of comments for other women who are contemplating doing the same.
One is, obviously, to keep in mind cost because no insurance is going to pay for elective egg freezing. So I shelled out about $16,000 for a single cycle. The other thing to keep in mind is one cycle may not be enough. So you may be looking at multiple cycles spread out over months or years, and that cost, obviously, is going to accumulate.
And, finally, I guess I would say that one of the problems, at least when I did this several years ago, is that there wasn't that much information out there for women. There weren't a lot of women sharing information about undergoing the procedure, and I didn't think of myself as undergoing IVF, so I didn't read a lot of that stuff.
And so maybe now there's more than there was a few years ago now that it's not as experimental anymore. But people definitely need to be informed about what they're getting into and, you know, even things like how your body is going to react to it, the fact that it may be really rough emotionally and that if you don't have a support network set up, that can be hard too.
CONAN: And you mentioned cost. There's also a storage cost.
ANNA: Yes, storage cost as well. I'm paying about $1,000 a year for storage.
CONAN: And any regrets?
ANNA: No, I don't regret it. I wish I had gotten started, you know, let's say, at 37. But when I was 37, it wasn't really as readily available. So I would say that if you're thinking about doing it, don't put it off 'til you're 39 or 40.
CONAN: Thanks very much for the call. Good luck.
ANNA: Mm-hmm.
CONAN: And as you - as we mentioned, this is - this use of this purpose, well, at her age, would you recommend it? Is it available to her under these new guidelines?
PFEIFER: Well, I think under the new guidelines, egg freezing is no longer experimental, so it is an option. And I think that, you know, when egg freezing is considered, you have to weigh all of the positives and all of the risks and benefits for the procedure for each individual person.
And I think, certainly, we do not have a lot of data about the survival and the live birthrate or the chance of having a live birth in women who are in their late 30s who are freezing eggs. Certainly, we have a lot of data looking at women who are in - you know, under 30.
But one of the things we have to be aware of and cautionary about is women in their late 30s, what is the likelihood they will actually have viable eggs that can be fertilized and then lead to a live birth because, you know, we think that the survival of the eggs will be good, but they probably may not be as good as for younger women. We need more information about that.
And the fertilization rate of an egg is only about 75 percent, and not all those embryos created from the fertilization will actually be healthy and normal. So one of the concerns is, you know, how many eggs do you need in order to hope to have an embryo to put back that may possibly, you know, be - result in a live birth?
The other thing that we worry about, too, is the risk of having a miscarriage increases with the woman's age. So in considering going forward with this procedure at, say, 38, there's a lot of things that have to be considered and weighed very carefully for each individual before deciding to proceed. I think your caller brought up some very good points about the cost and about the storage fees and those things, and certainly, you know, be - learning more about IVF is very important.
So I think there's a lot of things to be considered. One of the other things is not many IVF centers are able, at this point, to provide this technology. So not every IVF center freezes eggs. And so there is a learning curve. And I think it's important, when considering going forward with this, to find out what the success rate is at that individual clinic you're attending.
Have they done this before? What are their success rates with freezing and thawing of eggs? So you have some way of judging what your success would be and not assuming, oh, because it's been so great in the published studies, this is what my success rate is. It may not be that good for your specific circumstances at your specific clinic.
CONAN: We're - you're listening to TALK OF THE NATION from NPR News. Dr. Samantha Pfeifer, chair of the guideline committee for the American Society for Reproductive Medicine and is director of reproductive surgery at the Perelman School of Medicine at the University of Pennsylvania.
Let's see if we can get another caller in. This is Mary(ph), Mary with us from San Francisco.
MARY: Hi. I had a question. You started touching on this, but I had a question about rates of pregnancy per frozen egg. I had a very negative experience when I was 34, you know, facing sort of what I thought was the deadline of 35 to have a kid or face great risk of not being able to.
And I have to say that when I, you know, signed an informed consent for that procedure, the doctor really didn't advise me as to the statistics, and I had asked lots of questions about side effects. You know, on a vaginal ultrasound, I was told, oh, that's a beautiful ovary. You'll have no trouble at all. I had terrible side effects, muscular, from the hormone medications.
And when I sought a second opinion from a second doctor, I suddenly found out the, you know, shockingly low rates of pregnancy per egg frozen that I was totally unaware of. That was a few years ago. Now - I'm 38 now, and I'm interested in understanding what the current, you know, rates of success, what the range is around that in terms of rates of pregnancy per frozen egg.
CONAN: Dr. Pfeifer?
PFEIFER: Well, I think, certainly, we do not have a lot of data looking at the survival in women who are in their late 30s or early 40s. The information we have that's published really looks at women who are under 30 or in the range of - average age of 35. And in the women who are under 30, in very experienced clinics, we hope to have a 90 percent survival of a frozen egg. So, you know, if you freeze 10 eggs, we hope to get eight or nine of them surviving. Of those eggs that survived, you have a 75 percent chance of fertilization, and then not all of those embryos will be normal.
So I think that you bring up a good point. We don't know necessarily what the success is for a woman who is over 38 to 40, what the survival of those eggs are. And it's going to depend on your clinic and the experience in your clinic, which is why it's important to know: Has your clinic frozen eggs before? What is their success rate? And do they have any information about older women? Because if you look at success rates that are in the published literature, they are not stratified for age of the patient. They're lumped into under 30 and average age of 35. The majority of those patients are under the age of 35, and that's in a population where you'd expect a really good egg survival rate. So in older women or women in their late 30s, we do not know exactly what the survival will be, and it's hard to determine what the chance for a frozen egg is.
CONAN: Mary, thanks very much for the call.
MARY: Thanks.
CONAN: And, Dr. Pfeifer, thanks very much for your time.
PFEIFER: Thank you very much for having me.
CONAN: Samantha Pfeifer, associate professor of obstetrics and gynecology at the Perelman School of Medicine at the University of Pennsylvania. Coming up, a conversation with one of the NFL's replacement referees. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.