Hey there. Welcome back to Fertility Cafe. I’m your host Eloise Drane. Welcome to Episode 72 of Fertility Cafe. In this episode, we’re diving into the world of advocacy and opening up dialogue with members of the fertility industry, who are often not consulted on how things can improve over time. We are all very pro family around here, no matter what your family looks like. But we also feel it’s important to advocate for the egg donors and surrogates who are helping families become whole. On with me today, we have special guest, Liz Scheier, a three time egg donor and a member of the leadership team at We Are Egg donors, a global support network for current and past donors. Liz welcome and thank you so much for being here.
Liz Scheier
Thank you so much. It’s such a pleasure to be here.
Eloise Drane
Absolutely. So let’s get started with your story on how did you even get into the world of egg donation?
Liz Scheier
Sure. So back in the years, right after I graduated from college, we’re talking about the early 2000s. My mother was in a bad financial situation, she had, among other things, gotten an eviction notice from the landlord. And so I was working full time, and also had a few part time jobs. But I was living in New York and working in publishing. So none of those made very much money. And I was looking for a way to help out both for the back rent and for the lawyer. And so I saw one of those ads for egg donation. And I’m sure you’re very familiar with them, you know, they’re all over the place. They’re always very, you know, watercolours and hearts and like a woman in profile and hands cradling a baby, you know, it’s very, very self focused, very sweet, very compelling. And I was in a pretty bad situation. So that really made me set up and take notice
Eloise Drane
Was it through an agency or was it through a fertility clinic?
Liz Scheier
It was through a clinic, agencies were not such a big thing back in the early 2000s. And most people went directly through clinics.
Eloise Drane
Okay. And so you applied at the clinic and they said, Yes, you would be a good candidate. And how was that experience?
Liz Scheier
Yeah, so I filled out what in my memory is something like a 40 page document with every possible piece of information down to, you know, my SAT scores to what I like to do in high school to my hobbies. And the really funny part about it was that many, many years later, I found out that a friend had been a recipient parent at the same time at the same clinic. And we have this one like, yeah, the look on your face was exactly the look on mine where for one brief moment, we’re like, Oh my God this your son might be my genetic child. And it turned out that almost none of that information made it to the recipient parents. So I don’t know if it was just for the records, or if there was some coordinator in the background doing the matching that just was not transparent to other party.
Liz Scheier
But they really covered every possible piece of information, they actually turned out had more information than I did, there was extensive genetic testing, I’m of Ashkenazi Jewish descent, and there are some diseases that are more common in that population. And it turned out when I was pregnant with my second child, that I am the carrier for a fairly rare chromosomal disorder. And the clinic knew that, they didn’t tell me. So that was a pretty striking thing to find out. Thank God, both my children are healthy. My husband is not a carrier. So we were, we were okay. But they really had all the goods.
Eloise Drane
The clinic never told you?
Liz Scheier
No
Eloise Drane
Alrighty then. Okay. And hence the reason why we’re having all of these conversations now. So how many times did you donate?
Liz Scheier
Three
Eloise Drane
Three times. Through the same fertility clinic?
Liz Scheier
Mmhmm
Eloise Drane
And obviously, it was all anonymous.
Liz Scheier
Yes. That was all that was available at the time.
Eloise Drane
Okay, so let’s move forward and talk about We Are Egg donors and the advocacy group that you are a member of. First, how did you get involved with we are egg donors.
Liz Scheier
So it was just about the time that I was pregnant with my first child that I started kind of thinking back to this period of my life when I’d been donating. And I’d always kind of had questions about it. It was something that I did out of financial necessity. And it was really sold to me at the time as this great altruistic thing, right, you know, help create a family. Help, you know, give someone their wish, that kind of thing. And at the time, I was kind of desperate and scared. And so I didn’t think too deeply about it. I just went ahead. And later in life, when I had more time to consider it, I really started questioning the ethics of it, especially as I was looking forward to the birth of my first child. And, you know, when I donated there was like, there was internet, but there wasn’t social media, right? There was nowhere to find other donors. I’d never really spoken to anyone about it. And so I went looking to see if there were people that I could have these conversations with.
Liz Scheier
And so I found We Are Egg donors, which is a group of about 2000 donors current and aspiring, I guess, across the world, but largely in the US, some Canada, some Spain, some Australia and the UK, but mostly US based. And a lot of the conversations there are about logistics, right? I’ve received this medication, the numbers look wrong, what do I do? I can’t reach my clinic, what do I do? I’m having trouble breathing following my trigger shot, what do I do, but some of it was about anonymous donation and all of the issues that come from that, about, you know, donors finding that embryos created from their eggs had been donated on to other people that they did not agree to. And what do they do? Now they have their own children who are upset about having genetic half siblings, what do they do. And so it was really great to hear that other people were wrestling with the same kinds of issues that I was wrestling with.
Eloise Drane
Were you upfront with your own children about donating?
Liz Scheier
So my kids are four and five. And I do not know whether or not anyone was born of my donations. I’m assuming so given the fervor with which the clinic pursued me for the second and third, but I have a hard enough time explaining to them how children are generally born, let alone IVF, let alone they may or may not have siblings out there that may or may not, but that’s really difficult. So they should know, they deserve to know, I have not told them yet.
Eloise Drane
Well, yeah, obviously, it’s clearly has to also be age appropriate. So now, just to go back to real quick about your donations, did you have any problems or any complications during your cycles?
Liz Scheier
So I was on a protocol that is very rarely done now, a long cycle with very heavy doses of a drug called Lupron. And I developed hypothyroid as a result of those donations. Although there are no long term longitudinal studies on egg donor health. There are studies linking Lupron to endocrine disorders. That is the one long term effect that I’ve had. It’s very minor, I take one pill a day, it’s fine. It’s not my favorite, but other people have certainly had far worse.
Eloise Drane
Yeah, so I did my first donation in 2000, as well. And funny enough, I actually did sign up with an agency, although I was told at the time when I applied in 99, that black woman didn’t have infertility issues. And that it would be highly unlikely that I could get matched, but you know, I would be definitely a good candidate. So they’ll just keep my information on file, and they reached back out to me 9-10 months later, match me with a family, I did my donation, it was a horrible experience. I just assumed that I was never going to do it again. And then I went on to do it five additional times. But that’s a different story. But yes, I definitely recognize though, what you’re saying, because in 99 and 2000, the information that we have now is nowhere near the information that was, it wasn’t available. It just wasn’t. It wasn’t anything that you could, you know, easily Google and find information about egg donation, or even how to go about considering if long term, what that’s going to be like, I have been very upfront with my own children about my egg donation. But by the time I started egg donation, I mean, they weren’t children. They weren’t Young as yours are. I mean, my oldest right now is 28.
Liz Scheier
Okay, and you had them already then by the time you started donating.
Eloise Drane
Yes, yes, I already had my children then. And I was very upfront because I always had the fear that they would go out somewhere, or they would be in college, or they would travel or, you know, something, and then they would meet somebody, you know, and they resemble each other. And it’s just like, oh, wait a minute, hold on a second. Wait, why do you look so much like me? You know, you just start creating all of these things in your brain and it very well may never occur, but you still start putting these things in your own head. And so and that’s what I was doing. And I was like, Okay, maybe I’m just gonna be completely open with them. And now they know.
Eloise Drane
So tell me about the community that you’ve built of more than now 1900 egg donors. I mean, I know obviously, that clearly, I’m an agency, I look for donors and try to recruit donors. But I also am very particular about how we go about to educate these donors. Because again, my first experience wasn’t the greatest I’ve hyperstimulated, one donation I ended up getting sick literally, don’t need me to be graphic but truly I left the clinic, and I’m on the side of the road, puking my head out. So definitely I’ve had those experiences. So would you mind sharing, you know about the community and what is the purpose of the community
Liz Scheier
Yes, so the purpose of the community is to allow donor to donor conversation and communication, right? Because otherwise, what you’re left is the story that you get from the agency or from the clinic. And it sounds like you really have a desire and a mission to be honest with your donors. That is unusual, I’m going to say, and a lot of what we hear from our doctors, from the coordinators, and the clinics and agencies is either misleading or downright inaccurate. And so it’s really helpful to have other donors around to get a sort of reality check to this right. When people are saying, you know, I’ve been told that it’s no problem that I have PCOS, and I’m also donating. Not true, right? I’ve been told that there have been studies on the effects of egg donation. Not true. I’ve been told that anonymous donation is the only ethical way forward because it breaks up families. It’s not. These kinds of things. Right. So it’s a really helpful reality check on a more sort of pedestrian note. It’s also as with almost anything, especially anything health related, just helpful to have a community of people who are going through what you’re going through who can, you know, give you a thumbs up the day of your retrieval if you’re feeling nervous, that kind of thing?
Eloise Drane
And what initiatives are you guys currently working on to help really educate the masses about egg donation?
Liz Scheier
Yeah, that’s a great question. So I’d say there’s sort of two buckets of that. We’re looking to educate not the masses, but our own community about, you know, the issues around donation and around where they can be treated well. I maintain an anonymous survey on clinics and agencies, through which it’s very, very easy. You know, it’s the same doctors who are putting donors in the hospital time after time after time. It does sometimes happen just randomly, but we know who the worst offenders are. And that kind of information is helpful. And we’re also starting to work on advocacy. I am working somewhat separately with a group that is looking to help revise a current bill in front of the New York State Senate with New York State Senator Krueger for a donor and surrogates Bill of Rights. So I traveled to New York this summer, to chat with them about what could be on a donor’s Bill of Rights and learned a lot about the surrogacy process, which is sort of not my field. And so all of that was new for me. So we’re really trying to raise awareness around the issues of donation, both for donor health and the impact on the people who are born of these donations, and try to make the experience better for everyone.
Eloise Drane
Yeah, I agree. And the thing or two about egg donation is this industry does a disservice. Because they only talk about the right here and now of how you know, you’re helping a family and you’re doing something wonderful and all of the great, wonderful things, but no one is talking about, but what about 10 years from now? Yeah, what about 20 years from now? What are you going to tell your children if you both end up going to college at the same time, and you’re looking at each other and you’re like, hold on a second, there’s something off here. What then? I know, we keep talking about the social aspect. But let’s even get into the medical side of things. Because there is no long term study on egg donation.
Eloise Drane
There’s no long term study of how it’s going to affect you down the line. I luckily have not had knock on wood, any complications, and I have done donation. I’ve been a donor six times. And then I was a gestational carrier three times. And when I was a GC, I had to go through several rounds of IVF. So in total, I’ve done 13 rounds of of IVF, if you will, because I did six on the donor side, and then seven on the GC side. And again, I don’t know what, I’m 47 right now, I don’t know what the long term effects is going to be. And there’s no studies for me to know that. Hence the reason why when someone comes to our agency, I feel that it’s very important that people understand, we don’t know what the long term effects are going to be. You’re going into this kind of blindly.
Liz Scheier
And not only blindly but deliberately blindly because every donor I’ve ever spoken to has heard these words in this order from their doctor. There are no known long term side effects of egg donation. And that’s not exactly true. What they mean is there are no known long term side effects of IVF. And those are two very different things. Because the demographic that they’re looking at is older women, often women with low ovarian reserve, an entirely different cohort. And they’re applying that to young women who definitionally have high ovarian reserve. So it’s a real challenge, because somebody, you know, in my case, three times my age in a white coat with a wall full of cute babies behind him, is saying something that, of course, I believe, because Sir, why wouldn’t I? Yeah.
Eloise Drane
Because quite honestly, I mean, where are you going to go at that time to go look that information up to see if there was anything different? Right, right. Yeah. What changes have you seen happen over the years in the fertility industry with regard to egg donors and the way they are viewed or treat it?
Liz Scheier
Well, gosh, there’s a lot of answers to that. I would like to think that We Are Egg donors and other groups and other cohorts of donors have helped donors advocate for themselves, have helped them realize that they are the patients too, and that their health should be taken into account during their cycle. So I think that that has been helpful. Weirdly, I think COVID has helped push that message forward a little bit more, because so many restrictions were laid on donors around that time. And so many donors were either being required to get vaccinated or required not to get vaccinated by some recipient parents, were required to travel hours for, you know, just basic ultrasounds and the normal care instead of going to the place in their own hometown. I know one donor who was required to stay in a hotel near the recipient for the entire process so their sibling could keep an eye on her. And these kinds of things were so egregious, and so difficult, that donor started saying, I have to be able to say at some point that this is not acceptable. That’s right on for me.
Eloise Drane
Right. Absolutely. Within the fertility industry, do you think that the fertility clinics, agencies or whatever, or should I say, How should the fertility industry with fertility clinics and agencies and so on, how do you think that they should be educating these donors about being an egg donor? I mean, you know, obviously, you don’t want to scare anybody from doing it. But at the same time, they need to be well informed of the decision that they’re about to make.
Liz Scheier
I mean, I think they should be straightforward that there are no long term studies, which I don’t think is necessarily a turn off for most people. You know, we do a lot of things in our lives that are not particularly well studied. My concern is more with doctors who insinuate that there is knowledge that there is not. Just being straightforward about the fact that it isn’t there, I think would be a good start. I would make it a requirement for all donors to read some of the stories of donor conceived people either in We Are Donor conceived or other places, because, you know, they need to understand that we can’t just be thinking with the goal of a healthy pregnancy and a cute baby. This information is out there, the needs of donor conceived people are out there. And it’s not new, you know, there are sperm donor conceived people in their 80s. We have had this information for a long, long time. I don’t think you should go into this as a donor, without thinking about how the people you are creating are going to feel about it.
Eloise Drane
Yes, well, actually, let’s talk about the donor conceived, because as a egg donor, I got to actually meet one of my egg donor babies this spring. She’s 17. And the very first question I asked her, I was like, so do you have any questions for me? And her first question to me was, Do I have any regrets? And, you know, again, I definitely didn’t have any regrets. Obviously I’ve learned a whole lot more throughout the years, and clearly being in the industry and all of the things. So, you know, I definitely have a perspective from both sides, I feel. But that was her first question to me was, you know, do I have any regrets? And I’m curious, especially in the community of we are egg donors. Do you guys talk about donor conceived people, and how that would potentially impact a donor or a person considering becoming an egg donor?
Liz Scheier
Yeah, that is such a great question. What I found among the members of We Are Egg donors is that it skews very young, for obvious reasons, right. It’s mostly people who are in the throes of doing it. So you know, 19 to 28. This is how old most people are, and that people are generally very enthusiastic about their donations while they’re having them and for a few years after, and then the glow starts to wear off and that’s when you start seeing regrets coming in. And overtime, most older donors do leave the group because it is hard for them to see young women signing up for something that they feel harmed them. So there are now smaller other groups for donors who are, you know, 10, 15, 20 years down the line, dealing with those issues, I think that you are going to see some number of donors who just don’t want anything to do with the children born of their donations, they see this. And I think it’s well intentioned, I think it comes from a good place of not wanting to get in the way of a family.
Liz Scheier
And that’s the message you’re getting right, the message you’re getting is don’t interfere. Don’t insinuate yourself where you don’t belong, don’t threaten the family that’s being created. And so you see some of that. And then you see a lot of people who are kind of curious. And then you know, of course, there’s also the segment of donors who are donating to a sister or a relative or a friend, which can come with its own set of issues. You know, I’ve seen plenty of donors whose whole families have stopped speaking to them, because they had an agreement with their sister, that the donation would be known to the child and then the sister says, I’m not telling my kid and I’m cutting you off. So you can’t either. There’s all kinds of ways it can go well, and there’s just as many ways it can go badly.
Eloise Drane
Yes, definitely. How do you hope the fertility industry will change in the future.
Liz Scheier
So I hope that they follow and exceed the new law in Colorado, which requires donor ID by 18, which is a step in the right direction, but doesn’t go anywhere near far enough. I mean, in 18 years, especially women have often changed their names, don’t have the same phone number, don’t have the same address, they’re essentially gone. And nobody should be cut off from their family, not just the donor, but the donors family, their genetic grandparents, their, you know, half siblings, their cousins, for the first 18 years of their lives. So the first thing would be to make anonymous donation illegal as it is almost everywhere else in the world, I feel compelled to say that we’re one of the few countries that still does it, which makes us enormous market for recipients in other countries.
Liz Scheier
Because in Australia, for example, where donors are very much encouraged to have had their own children by the time they donate. So they’re not as young for the most part, and are required to be known. There aren’t that many of them, and they can’t be paid. So there definitely aren’t that many of them, right. And so Australian women, just important, young American women. You’re just moving the market to another place. So for me, that is the absolute number one thing is to remove anonymity from the equation entirely.
Eloise Drane
Well, at this point, I feel like the world is shifting to it, whether they want for it to be anonymous or not, because with the different programs that are out there, and those are just what we have now, who knows what’s going to be in five years or 10 years from now. So I really don’t feel that anonymity is going to even be possible.
Liz Scheier
It won’t be, it won’t be. Where you’re seeing anonymity be broken, is where someone doesn’t know they’re a donor conceived and takes a test for another reason, right? They get it as a holiday gift, or they want to know about the health portion of the test or whatever it is, and suddenly they have an NPE and half their line is a stranger. And that, I mean talking about what might break apart a family, that’s not going to be good for the family at that point. For the donor health side of things. There’s currently a carve out in HIPAA for gamete donors, many donors are not able to receive their own records, we are not entitled to them. I did receive a copy of my records that was significantly redacted. So there are pretty major points in there that were that were not made available to me.
Liz Scheier
So I would do away if I could with the HIPAA carve out. And I would require that agencies and clinics are more honest about the potential health impacts and about what donors can expect after the donation. You know, currently, I would have to look up the number, we did a survey on this, of how many of our donors were asked to share an attorney. When negotiating their contract with the IPs. There is no other area of law where an attorney will represent both sides of a contract. That is an obvious and clear breach of ethics. And yet it happens all the time. Yeah, so donors are promised all this stuff that is just complete nonsense, completely unenforceable. And it’s done because they’re young, they’re 21 years old. They don’t know. They don’t know. But if the attorney agrees, they signed the contract.
Eloise Drane
I’m literally biting my tongue right now so that I don’t scream because why? Why? Like, why? And, you know, and actually, if we’re talking about even on the legal side, that is going through an agency typically is when you have an egg donor agreement. When you go through a fertility clinic or a bank, you’re not even signing an agreement. You’re signing consent forms, and that’s it. And then you really have no say you don’t, half the time through fertility clinics and egg banks. I mean, and I can’t speak for all agencies. But I know for myself, we have it in our contract that the intended parents must inform the donor or obviously through us.
Eloise Drane
But you have to be okay with us informing the donor, how many eggs were retrieved, how many were fertilized. How many were mature, if there was a pregnancy that generated from that donate, like all of the things, because she has a right to know, she has a right to know, because one day she may have children. And you want to know, where is the genetic relation to my child at? You have that right. Yeah. And I would be amiss if I didn’t even put this out there. But that is definitely one of the frustrations that I have with the fertility industry that I definitely feel we do a disservice there. So sorry. And I know I keep going on and on and asking more questions. So I apologize. But obviously, this is something that’s near and dear to my heart. What do you think is going to take for those changes to happen, like what you had just mentioned
Liz Scheier
I think that the donor conceived community has taken a great leaf out of the book of the adoptee community, and is making some of the same arguments there to very good effect, you know, the trauma of genetic bewilderment, the need to know your genetic family, the right to know your genetic family. And I kind of want to stay in my lane here, because I’m not donor conceived. And I don’t want to speak for them. But I did not when I was growing up, know who my father was. And that was a matter of great pain to me. And so one of, I think, unlike you, I have great regrets about my donations. And one of the greatest regrets is that I feel I should have known better that I took something very painful to me and did the exact same thing to someone else.
Liz Scheier
So a slight tangent from, I think that that group of people, unfortunately, the brunt of doing this advocacy work has fallen on them as to what it’s going to do to change treatment of donors. I’m really sorry to say this, but someone’s going to have to die. Right? Either a donor is going to have to die, or babies are going to have to be born with, you know, terrible disorders, which would have been known had clinics been more transparent about the genetic reports, some tragedy is going to have to happen. That is giant news. Because otherwise, this is a huge income generating industry. And it is built on the desperation of infertile people. And when you put those two things together, something enormously dramatic is going to have to happen to make any change.
Eloise Drane
Yeah, I agree. Unfortunately. I definitely agree. And we recently had Wendy Kramer with Donor Sibling Registry on and she shared how cattle is tracked from you know who the parents are, you know the children that they have, you know everything about cattle. And yet, in our fertility industry, we know nothing. We track nothing. We know nothing. And it is mind boggling, actually, when she told me that and when she shared that I was like, oh my god, I never even thought about that, I have dogs, I can trace their lineage. And here we are as human beings. And we can’t do that. And we can’t do that, because of an industry that is now more concerned about the bottom line, than, quite frankly, about human beings. And yes, I am in this industry, I work in this industry, I make a living in this industry. And yes, I am saying this about this industry.
Eloise Drane
And it’s one of the reasons why I wanted to start doing these podcasts is to start talking about the things that we need to change. And this is one of the things that we need to change. And it really was way more enlightening. I think when I saw and met my egg donor, I mean, I had met her before when she was younger, she just doesn’t remember. But when now that she is 17. And we can converse and actually, you know, have a dialogue about how it impacted her. I was like, Wow, this. Yeah, we need to make some changes. So my final question to you is, if you were to talk with a young woman who’s considering becoming a donor herself, what would you tell her?
Liz Scheier
I will ask how much time she had? I would have a lot to say, you know, but I would say number one, I would say that there’s an ethical and unethical way to do this. And that anonymous donation Is unethical, it is easier and more comfortable for a lot of people. But that doesn’t make it right. I would say that she needs to read the stories of donor conceived people to understand the impact that this is going to have on somebody else down the line, I would ask her to remember that her health is potentially on the line and not just her reproductive health, because that’s something I see a lot from younger donors saying, Well, I never want to have kids, which I also never wanted to have kids when I was donating. So you know, life is long, and then things change, but it is not only your own fertility that is at risk, it is other parts of your health as well. And I would say you go into this being your own advocate, have your own attorney, if something is wrong, looks wrong, say something. If you have a dangerous number of follicles developing and maturing, say something. If a doctor calls you a chicken, say something. Or an agency that is treating you poorly, because they only make money as long as donors are there, right. And if we step away from those doctors that we know are just hospitalizing donor after donor, they go out of business, and that we can have some real impact on future donor health by putting ourselves in situations that are safer for our own health.
Eloise Drane
Yes, I agree. 100%. Well, Liz, thank you so much for being on the show with me today. I really appreciate your time and your candor. And I appreciate the fact that you were willing to step up and say, okay, you know what, let’s start gathering people together and creating this community to help the next generation and the generation after that and the generation after that. So I really do appreciate your time.
Liz Scheier
Thank you so much for everything you’re doing and for having this conversation with me today.
Eloise Drane
Absolutely. Thank you so much. Thank you so much for listening. If you found this episode helpful, please rate Fertility Cafe on your favorite listening platform, and share this episode with anyone you think could benefit from hearing it. Thank you so much for joining me today. Until next time, remember, love has no limits. Neither should parenthood
