Ep 42: The Pursuit of Parenthood: Reproductive Technology from Test-tube Babies to Uterus Transplants with Margaret Marsh and Wanda Ronner
Fertility Forward Episode 42:
Margaret Marsh and Wanda Ronner are sisters who have been collaborating for the past three decades and writing about the history of infertility, reproductive medicine, and reproductive technology. Margaret Marsh, who is currently serving as the Interim Chancellor of Rutgers University–Camden, is a university professor of history at Rutgers, and Wanda Ronner is a professor of obstetrics and gynecology at the Perelman School of Medicine at the University of Pennsylvania. Their 2019 book, The Pursuit of Parenthood: Reproductive Technology from Test-Tube Babies to Uterus Transplants, was published by Johns Hopkins University Press. Margaret and Wanda are also the authors of two previous books on the history of infertility and reproductive medicine, including The Empty Cradle, and The Fertility Doctor. It was working on these books that inspired their interest in contemporary issues and assisted reproduction and, in this episode, they share some of their findings. Tune in to hear about the origins of assisted reproduction techniques like IVF in the US, the ethical controversy around embryos, and the stigma associated with infertility, as well as why Marsha and Wanda believe the US is behind the times and the various barriers to entry in the country, including missing data and the national healthcare scheme.
Rena: Hi everyone! We are Rena and Dara and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice from medical professionals, mental health specialists, wellness experts, and patients because knowledge is power and you are your own best advocate.
Rena: We are so excited to welcome to Fertility Forward today, Margaret Marsh and Wanda Ronner. They are sisters who have been collaborating for the past three decades and writing about the history of infertility reproductive medicine and reproductive technology. Margaret Marsh, who is currently serving as interim chancellor at Rutgers University – Camden, is a university professor of history at Rutgers and Wander Ronner is professor of clinical obstetrics and gynecology at the Perelman School of Medicine of the University of Pennsylvania. Their 2019 book, The Pursuit of Parenthood: Reproductive Technology from Test Tube Babies to Uterus Transplants, was published by Johns Hopkins University Press. The research for this book was funded by a multi-year investigator award in health policy research from the Robert Wood Johnson Foundation, Marsh and Ronner are also the authors of two previous books on the history of infertility and reproductive medicine both of them funded by multi-year collaborative research grants from the national endowment for the humanities, and also published by Johns Hopkins University Press. The first is The Empty Cradle: Infertility in America from Colonial Times to the Present and the second is the Fertility Doctor John Rock and the Reproductive Revolution. It was working on those books that sparked their interest in contemporary issues in assisted reproduction. So, wow. What a thrill to have both of you on today and get all three of us in the same zoom meeting. I won't say rooms since we all know that’s super unlikely these days, but thank you so much for being here. I'm so excited to have you on and have you talk about your book and your research. I think this is going to be such an interesting episode. So I ‘d like to delve right in and have one of you jump on in and tell us about your book and your research and your collaboration. And we'll go from there.
Marsh: So we can tell you about how our collaboration started, because this is, this is inherent in our work is, is how we got to this place. And it was actually Wanda’s idea, even though she's not the historian. Uh, Wanda came back from the university of Rochester where she was doing her residency, uh, to, to take up her career in Philadelphia. And she and I was living in the area and she said to me, you know, it’d be really fun. Let's combine our two disciplines. Let's do a little talk in the history of obstetrics and gynecology. I found this grant, she said, and we can go to Washington for two months. I mean, two weeks, we go to Washington for two weeks and, and spend some time we should figure out something to do. So I said, you know, I was finishing my book. I studied gender in the family. I was finishing my book. I said, yeah, this will be fun. I said, what should we do? And it turns out I ran into one of my colleagues who was a real historian of medicine. And I said, you know, my sister and I want to do something . She said to me, she said, and she's very bossy. She said, do the history of infertility. Nobody's done this. So I called up Wanda, and I said, Wanda, my friend Janet says, do the history of infertility. Nobody's done anything about this. And so we thought we were going to write some little talk about infertility treatment in the 19th century. That's kind of what we thought we were going to do. And here we are, 30 years later.
Ronner: Can I add something interesting about this story? So we did this paper called the Sterile Couple, and we got to go to Atlanta to present this paper at one of the American College of OB GYN meetings. And then I actually delivered Janet's baby. So not only did she help us with our book project, but I got to be her obstetrician.
Marsh: So one thing just led to another. So our first book was a general history of infertility, which to our surprise had never been written in the United States from colonial times to the present.
Rena: I know I can’t believe that’s never been written before?
Marsh: Never been written before. Nope, Never been written. I mean, people had done little, well, actually people weren't interested in this because historians of women that were studying the history of medicine tended to be more interested in contraception and abortion than they were in infertility. And it did turn out that as we were working on this, one of my colleagues at the, at the university of Minnesota, she was writing, she was writing a book about childlessness which included infertility, but also included other kinds of other kinds of things. And our books came out at about the same time. So I guess we were both thinking about a particular moment. So we, we wrote that and, and in that book, one of one physician kind of took over one of the chapters, somebody, he was the co-developer of the oral contraceptive and that's what he was famous for. But it turned out that he was also probably the most prominent infertility specialists in the middle of the 20th century before he became the co-developer of the oral contraceptive. And he was with his research assistant who actually did the first fertilization. His name was John Rock. Her name was Marianne Mankin. And they were the first people ever to fertilize a human egg in vitro. And this was in 1944. And so he kind of took over that chapter. And I had to ask his daughter for permission for us to quote from his papers which were at Harvard. And when I asked her, if we could quote from these papers, she said to me, you know, I have about a hundred boxes of my father's papers in my attic. And I said, you do? And she said, yeah, you know, you should come and look at them. So I called up Wanda and I, and I said, you know, we could write about John Rock? And she said, never doing another book. Never. She said, this was so much work and I have too many other things to do. I'm not doing it. So of course, um, we then did the second book. And then everybody started asking us, well, what do we think about the new reproductive technologies? Because the first book came out in 1996. So it really only went up to the, to the early 1990s. We, we didn't do much about IVF except talk about its beginnings. So we decided we were going to take the story up to the present and…
Ronner: Yes the new book, the new book we picked up from the old book, but John Rock is still pivotal to everything we've done and pivotal for our new book because John Rock is really what his fellows at the Free Hospital for Women in Boston really were what led to the beginnings of our department at Penn. So, you know, it's almost like Rock was the grandfather for the folks at Penn that started the reproductive biology division at Penn. That's a whole long story and that's a very big part of our new book because use Philadelphia and what happened in Philadelphia to kind of explain what happened in the rest of the country. And it all really started with Rock.
Marsh: Right. And so, so, so Rock, he, you know, he did, I, he did this first IVF and then he and his assistant, they kind of realized they didn't know enough to take it from fertilizing an egg. They didn't know enough about what to do next. And they, they kind of kept doing the research for a little while, but Rock was really interested in getting women pregnant. And so, you know, this wasn't moving chop, chop, chop for him. So he, he, you know, he put it aside and went back to doing surgery for blocked fallopian tubes and things like that. And then, and then he was dragged into the oral contraceptive project and, and then he became co-developer of the oral contraceptive. So he was kind of pulled away from it. But the people that he trained became many of the founders of IVF later on in the 1980s, especially in Philadelphia. So we have this kind of weaving story about how IVF came to, to America. There's one strand of IVF that, that develops through John Rock and the fellows that he trained and the fellows that they trained because Wanda and I interviewed, he's not, he's not the director of that unit anymore, is he? Wanda?
Ronner: No but he’s very involved.
Marsh: Very involved. He was president of the American Society of Reproductive Medicine a couple of years ago. So we interviewed him and it turns out it's like, he's the intellectual grandson of John, John Rock. He's, you know, very, very prominent, very well known. And then, and then there's the other way. And then there's the other way that IVF developed in this country, which was through the UK and Robert Edwards and Patrick Steptoe who had the first IVF baby in the world. Robert Edwards, when he was a younger, a younger man learning how to kind of fertilize eggs, he came to this country and worked with Howard and Georgeanna Jones who eventually became the first people who had an IVF baby in this country. So, so their strand, I mean, they, they created another way in which IVF developed in America, coming from the UK. And then there were these younger people who learned from the Australians who had a very robust IVF program and had the second IVF baby in the world. And we had the third. So there were these, there were these different strands by which IVF developed in the United States. And we found it really so interesting that one of the major strands emanated from somebody that we had written a biography of. So we, we, I mean, we knew how important he was, but I don't think we really fully appreciated how long lasting he was.
Ronner: Or how wonderful he was. I mean, we, we have to say that he is by far away our favorite physician of all times. For me.
Rena: Because of what he did or his personality or, or how come?
Ronner: well, I think it was because this was a guy who just saw a problem and really related to his patients. And really, I think he understood the suffering of women. He understood the suffering of women who couldn't conceive and those who had too many children. And of course, you know, Luigi Mastriani, who was the chair at Penn for so many years, when we, when we interviewed him, this was shortly before his death, he said, I will never forget the way John Rock could communicate with people. It's something I will never forget. And of course this was the in the, during the time where doctors didn't communicate with people at all. You know, you were given your instructions, they didn't sit in and emphasize with you and hear about your personal life. And he was such an unusual man. And also he never charged, you know, he went broke because if they couldn't pay, they couldn't pay, come on in and I'll see you anyway. He had so many amazing qualities and even in a time when women were kind of told not to come into the medical field, he somehow managed a way to sneak a few in.
Marsh: Even though he didn't believe they should come into the field. He would say, Oh, I'm opposed to women being doctors. And then if there was a woman physician who wanted to be a fellow with him, he would say, well, I may not approve of women being doctors, but of course they should be trained if they want to be trained. And he would, he would refer, we have all these, this correspondence where, you know, people would write and say, I want to come to him. And he would say, Oh, no, you live in New York. You should see Dr. So-and-so, doctor so-and-so, or Dr. So-and-so and they were all women. You know, it was, you know, he was, he was a big contradiction. He was a huge contradiction, but he was, you know, he had patients, you know, all the way from like Hollywood movie stars to the wives of elevator operators. And, and that's what they had in the old days, elevator operators and by all, all stories and all the correspondence that we see of people writing to him, he treated them all the same, which is, you know, which was rare in that time, because this is a very paternalistic era when in medicine, you know, doctors would say, you know, you do this. And also, there were lots, there were many physicians who thought that poor women have too many children, you know, I'm not, you know, why, you know, why should you have a free infertility clinic? Because you know, they've already, you know, poor women have too many kids. Why would you, you know, why would you care about this? So I was, you know, at a time when you were at a research hospital and, you know, I, I I've seen some of the papers of John Rock's colleagues, you know, where they would refer to the women they were treating as research material because they were poor women. You never see any of that in his, in his work. And of course, Miriam Mankin, who was his research assistant, he didn't approve of women in science either, who was his research assistant after they fertilize the first four eggs, the family story is that he lobbied Harvard to give her a PhD. She had never gotten her PhD, give her PhD because this work was so important. And she took the lead on it. Harvard wouldn't do it, but, because that was Harvard at the time. But, you know, he was, he was really, he was really great about this, but you probably want to talk about your, you’re contemporary. We probably should try to get up to the contemporary era or else you'll, you'll hear us talking about the 1950s forever. So ask us, ask us a question about the contemporary time.
Rena: I think it's fascinating though, to know the backstory of this, you know, it's something I never, I didn't know that much about. And I think, you know, our listeners would probably love to hear if you can even walk us through sort of from start to finish really, what is the history of assisted reproductive technology and sort of, how did it start, you know, through kind of what you discovered, what we know now? You know, I think that would be really fascinating,
Marsh: Right. So, so first you have John Rock and he, and he did this, but then, then kind of nothing, nothing happens. So, so, the first IVF baby was born in 1978 in England. That's that's Louise Brown. They called for the first test tube, baby. Robert Edwards was the embryologist. Patrick Steptoe was, was, was the gynecologist. And in a way, like, you know, like John Rock, Patrick Steptoe was, he was the gynecologist. He was kind of an iconoclast. I mean, he, um, he didn't get a job in London, even though he was brilliantly trained and he had to go to Manchester, which is like, you don't get a job in New York. So I don't want to say you have to go to Philadelphia if you don't get a job in New York. Uh, so you have to go to Akron where he, you know, where he got it, where he got a good, where he got a good job. Not that there's anything wrong with Akron, but, but Manchester was considered to be like, not a New York kind of city, but more, more Midwestern kind of city. So it could be Akron. It could be Cleveland, it could be any, any, any really nice city in the Midwest, but it's still not New York if you want to be in New York. And and then Robert Edwards, who was really interested in this and was kind of the brains behind it, was looking for a physician to collaborate with and he found Patrick Steptoe and their collaboration was born. And the, the equivalent of the National Institutes of Health in, in Great Britain refused to give them any research money for this because they didn't approve of IVF. I mean, one of the, I read their rejection, their research rejection and they said, now, if they were trying to do something like this in order to create better birth control, we might approve it. But we don't see the point of creating this technology as another way to make it possible for women to have children. So, we think there are too many ethical issues involved. So they had to self-fund their research. And then of course they had success with, with Mrs. Brown, Leslie Brown and baby Louise. Who's now, 1978…
Ronner: She’s over 40.
Marsh: Yep. She's 42. And Australia was doing it at the same time. And then, and they had the second and they had the second IVF baby. And then in the United States, we had, we had the third IVF baby. And after that, I’ll have Wanda pick up the story.
Ronner: No I can tell you about the story of the Joneses, because again, this is another fascinating story of Howard and Georgiana Jones were a married couple working at Hopkins and they got to the age of retirement. I mean, she was an endocrinologist and he was an OBGYN doctor and a surgeon. And so they had to retire at 65 and their good friend was in Norfolk, Virginia and said, if you come here and I'm starting a brand new medical school, you can do whatever you want. And it was shortly after Louise Brown was born and they said, okay, well, we're going to do IVF. And so they got money. I, I believe it was actually from a patient of the physician who recruited them and they got money to start their first IVF program. And I mean, this was not a young couple. You have to understand that they were already past 65 when they set up the first IVF program in Norfolk and they were successful. And, you know, it was amazing how this little brand new medical school was then on the map because of the work and IVF. And they also trained a lot of people that went all over the country to do IVF. It's just a fascinating story. It's totally fascinating. I mean, everything was self-funded you have to understand because there was no NIH money to do any of this research. So the Joneses were immediately celebrities in the US and her name was Elizabeth Jordan Carr. And she was born in 1981.
Marsh: Exactly, exactly. And then, and then the following and then the following summer, third baby was born. And I'm going to tell you this story, and then we'll tell you why it was everything was self-funded because this is an interesting, it tells us why in the United States, IVF is governed by the marketplace instead of governed by national policies. So, meanwhile, over in California, there's this young guy just getting out of fellowship. And he decides he, a guy from West, from, from West Texas grew up on a ranch, had a very interesting story. Eventually comes to California and does his fellowship in, in California and says to, and says to gets, it gets a job and says to his department here, I want to do IVF. Department Chair says, Oh my God, you want to do IVF? It's going nowhere. IVF is going nowhere. It's, uh, you know, it's, it's only useful for, for, for, for blocked tubes and it's not going to replace a tubal surgery. It's going nowhere. You can't do it. And he said, well, what about if I do it on my own time and still do all my other work? And the chair says, Hmm, how are you going to do that? He says, well, he says, I have a couple of grants and instead of hiring people, I'll just do everything myself. He repurposed some closet in the hospital for, that's about 8 by 10 for his first lab. He gets, so he's not getting paid for doing this. He gets a technician to volunteer to help him. She's not getting paid for it. They recruit a nurse to help. She's not getting paid for it. They go to the County Hospital to do this, um, because the County hospital is, is free. And so Wand and I said to him, he's still practicing actually out there in, California, he's about 70 now. And he was in his twenties. And so we said, so I've talked Dr. Morris, how much did you charge? Because we were kind of interested in how much it costs in those days. How much did you charge people? And he said, charge them? He said, how was I going to charge him? I didn’t know if I could do this. If it was going to even work. He said, I didn't charge him anything. So at the second baby who was born to a Korean American owner of a little corner store in Koreatown in Los Angeles was the, she was that she had the, the second baby in the US. Here, you have an unpaid doctor, an unpaid nurse, an unpaid technician at a County Hospital and he had the most diverse group of patients because he wasn't charging them. So he had rich people. He had poor people. He just, you know, he just said, I says, I told them all, I didn't know if it was gonna work, but I was gonna do my best. And it’s interesting.
Ronner: We found him completely fascinating and fun. And his technician is still working with him. actually, right.
Rena: I was going to say is she paid now? I hope they paid. That's wild. That's really, that's, that's really
Marsh: And one of the reasons why, you know, all of this was kind of so free flowing is that in the 1970s, because of the anti-abortion movement, there was a lot of opposition to IVF because there was the belief that, that some of these embryos would not survive. And that if an embryo didn't survive to the anti-abortion advocates, this was the equivalent of killing a child. So there was a moratorium on the federal funding of IVF research. Eventually the government put together a panel, an ethics advisory board, they included a distinguished Catholic priest on it. They included, uh, an ethicist from Harvard on it. It was a, it was a panel of many views. And the panel unanimously concluded that IVF should be federally funded, priest and all. I mean, the priest said, yes, it is an evil that some of these embryos will die, but it is an evil in the service of a greater good and the greater good is that people should be allowed to have children. So, but this kind of, this really the anti-abortion movement was very heating up, was very heated up. And there was a huge outpouring against allowing the NIH to fund embryo research. It was a temporary moratorium, but to this day, the federal cannot fund any embryo research. There was no federal funding of any embryo research whatsoever.
Rena: What’s the reason behind that today?
Marsh: Because an embryo might die.
Rena: And so it’s the same reason today?
Marsh: It's the same reason today, same reason today. It became codified in an amendment to the act that fund the appropriations act that funds the federal government every year. There is an amendment. These two guys who opposed it, two Republicans named their names were Dickey and Wicker. And now every year that Dicky-Wicker amendment appears in the federal funding bill every single year. So it's not like you can't do the research. The research itself can be done, but this is why the research occurs in places like the place you work for Reproductive Medicine Associates. They do research. Universities do research. But the research, if research involves any, anything that might destroy a human embryo, it's still not allowed.
Rena: That's so interesting.
Marsh: And that's, and that's why, and that's why over time, physicians became much more adverse to having national policies and regulation. Physicians were not adverse to national policies or regulations in the 1970s and 1980s, because they felt they were the policies and regulations were the price you had to pay for the federal funding for peer reviewed research. But increasingly as they managed to do this without doing that kind of without having to go that route, they became more adverse to having regulations.
Ronner: So I would just like to add talking about these embryos that, you know, in the early days, when, of course the reproductive endocrinologist had no idea how many embryos you needed to achieve a pregnancy and they would, would avoid all of these controversies by just putting back every embryo that fertilized, I mean, we're talking about the early days so there was no religious or ethical controversies early on because whatever they got, they put back in. And then of course what's happened over time is that we have millions of frozen embryos that patients, families don't know what to do with. So what do you do with it? In other countries there's a limitation on how long your embryos can remain frozen. And here, you know, I have patients that I ask every year, I say, well, how are you? Do you still have your frozen embryos? You know, how are your twins? Oh, they're 12 now. Do you still have your frozen embryos? Yes. We don't know what to do with them. We're afraid to just let them go. We tried to give them away for research purposes. We can't. And I'm sure if you were in the contemporary scene here of working with infertile patients, you know, that people are paying for frozen embryos in storage that they're never going to use. Because again, this whole issue is one that hasn't been decided on in this country. What do we do with them?
Rena: I think, you know, it's, it's hard for people. And I see people grapple all the time with, you know, feeling as though, you know, again, that sort of ethical on the, what is an embryo? And it feels really difficult to make the choice to get rid of it because of ethical beliefs, religious beliefs, or, you know, fear that maybe they would want to use it down the road and then not be able to. So I think it's, it's a tough part of this, for sure.
Marsh: Very tough, very tough. But you know, other countries have a very different way of dealing with, you know, how long they're willing to store them. Because again, it's not a business, it's not, nobody's paying for that storage. It's, it's part of their health care part of the infertility care they're receiving.
Rena: What's the, is there, do you know what the max limit is in another country? Just for an example. And then do they give people the option to either donate the embryos, to research, give them up for embryo adoption or destroy them as we do here?
Marsh: But what do you know? I think, I think in, in Britain it's five years that they will keep them.
Ronner: And, and then if you want them kept longer, you have to petition.
Marsh: I think that's correct.
Ronner: And you can get them for another five years if you want, but you have to say that you want them kept for another five years. You can’t just disappear and do nothing. Because if you don't say you want them, they will be unfrozen after, after five years.
Rena: I think, I mean, I'm thinking to sort of go and do this with patients. And I think in some ways that probably actually makes it easier. When someone makes a choice for you. I think here a lot of times people feel there's a lot of guilt wrapped up in it. So sometimes I think, you know, and I see all the time with this technology on the one hand, it's amazing. We have this technology at our fingertips to help people family-build. But sometimes I think it becomes like a buffet with too many options and people get overwhelmed. And so when you have someone else making a choice for you, it almost takes that added kind of layer off for you.
Ronner: Yeah. Yeah. And it's very hard if, if you have, you know, emnbryos to then decide to let another couple use those embryos when that's your biological child. I, one story I remember so well is, is going into see my colleague. And she was on the phone and I was outside the door waiting for her. And she was talking to, she's a reproductive endocrinologist talking to her patient about, well, this is what we have. I have these many embryos that couples are willing to donate to you. Will you consider it? And it's a while ago when we first started this idea of, you know, donating embryos. And I was like, wow, you know, how do they decide, you know, how do the couples decide to do this? And then how does another couple decide this is a good option for them? And, I had a patient about a year ago who said it was the best thing she ever did was to accept one of these donated frozen embryos as a single woman. And she and her child have a very happy life, but, you know, again, this is what we're getting off topic of the history, but there's so many issues like this in the field now that in other countries are, are handled in a very different way.
Rena: Yeah. I mean, I think it's, you know, in our field we’re really lucky. I think, you know, family building can be done in so many different ways and, you know, families come in all shapes and sizes, and I love that we are able to do that here and help people create families in ways that most people didn't, you know, may or may not have initially thought of. But that's pretty incredible.
Marsh: Well sure, because you can, I mean there are, there are multiple ways, but it is, it's always interesting to me, there was in the late 20th century, 20 years or so ago, there was a big scandal in, in California, at the University of California Irvine where it turned out that one of the most prominent infertility experts was apparently just without telling people, taking the embryos of one couple and then telling another couple whose embryos failed to materialize that they had embryos and just using them.
Rena: Well, okay. We don't want to scare people, but obviously that's extremely unethical and not the norm.
Marsh: It is extremely unethical. It's not, it is not, it is not the norm, but it does give you a sense, um, how people, when you look at all the lawsuits, so the University of California Irvine had to pay, estimates vary cause we don't know for sure between 27 million and 47 million dollars in the early 20th century to settle, to settle lawsuits. And so some of the people whose embryos were taken from them whether they had children from their other embryos or did not, thought of the embryos taken from them and gestated by another couple as their children. I mean, it is. I mean, because it is really, you know, it is really interesting. You have to start to think what people do, they think, okay, what is parenthood? So one of our friends who’s somebody you might want to actually have a podcast, Renee Amelie? Have you ever heard of her?
Rena: No. What does she do?
Marsh: She's a sociologist and she’s at Yale. And she wrote a book about egg and sperm donors. Really fascinating book. And I think she just finished a book about men and reproduction. She calls it, I wonder if it's still called this, the working title was guy – GUY – necology. The book, so Renee Amelie. I'll send you, I'll send you her email address because she might be really interested. She's a sociologist so she does contemporary stuff. But the book that was that she did on egg and sperm donors is called sex cells, S E X, C E L L S. You know, and, and so, and so so her, her argument was so, was so interesting in that women who donate their eggs. I think of what they're doing, the ones that she interviewed, as giving a gift to somebody who cannot have children. And so they do not think of the egg that they are donating -compensated donation, but they think of it as donation. - they don't think of that as their potential child. Another woman's going to gestate the child. Another woman will give birth to the child and they think of this. They internalize their thoughts about this to her, this is, these are the people she interviewed, um, as I'm donating this so that another woman can be a mother. Men who donate their sperm, think of themselves as fathers. I’m the father of that baby.
Ronner: Yes. The baby daddy, as we always used to call them.
Rena: You mean, and she's saying men who donate sperm to a bank?
Marsh: Now, they don't, they don't necessarily want to take responsibility for this. I mean, they don't want to take responsibility, but to, to them their, their father's sperm equals baby, she says.
Rena: I mean, I guess it makes, you know, I talk a lot with my patients about, you know, when, we’re, you know, so when someone has to seek reproductive technology or assisted reproductive technology, meaning they can't conceive on their own, you know, there's a, there's a lot of loss that goes with that. A lot of intangible loss and we talk a lot about how it's almost biblical in a sense and not in a religious way, but it goes back to Adam and Eve and why, we’re we feel as humans we were put on this earth that it's our biological and innate right to conceive. And if we choose to not, if we choose to live child-free as the term is, you know, that's an act of choice, but when we want to conceive and that ability is taken from us and we need assistance, have that's a huge loss. And, you know, I see it in men and women since infertility affects both men and women really manifest in different ways. And I see men and women grapple with it differently. I think men especially really, I mean, they struggle a lot with the shame. I think men feel like right, it's their, their right to conceive. And I see them kind of stuffer in a different way than women. If they, you know, maybe are, is azospermatic or, you know, aren't able to with their own sperm. So that's a really interesting, it's a really interesting find.
Marsh: So thank goodness though now we have, for, for many of these men, we have ICSI. So, which was the first and that's 1992, that was the first real treatment for severe male infertility. I mean, until they, I mean, unless you had something, you know, unless it was caused by some condition that you could cure, you know, male infertility was pretty much untreatable. I mean, unless they had, unless it was caused by something and you knew what it was caused by and you could fix it. So, so, you know, in those, so now that we're hearing, you know, hearing all these stories of people who, because now they can go to ancestry.com and find out that they're related to 33 other people and they're 70 years old, they find out that they were conceived through sperm, sperm donation, but they were never told. And in fact, sometimes the doctors would say in the 1970s, not all of them, but some of them would say, well, I'm going to mix the sperm of your husband with the sperm of the donor. And the donor sperm might give your husband's sperm a little boost. I mean, it was all not true. I mean, the whole idea was to salve the male ego and make well, and also make the, the, the social father, not social father, the father, the person who was going to be the father feel like the baby was really his. You know, you couldn't tell if it was somebody else's from, or, or, or my sperm can see, well, of course, now you can tell. And, and so, but it was very, it was extremely, you know, it was extremely, extremely difficult. You know, at least with ICSI, you can help a lot of these men because if you can find sperm anywhere, you can try to fertilize an egg with it. So before IVF, it was really, I mean, we think about what IVF did in terms of blocked fallopian tubes which it was first started to overcome, but also for male infertility
Ronner: I remember practicing, you know, before we had ICSI and it was, it was tough for some of the couples to have the donor sperm and for others, it was, it was just, this is fabulous and they never looked back, you know? So like you say, people respond differently. And you know, I remember many couples being just so thrilled and overwhelmed to have a baby that they really didn't care where the sperm came from. So again, but again, you know, we using donor sperm in those days, it was all like an in-house, you know, operation. It wasn't early on the use of the sperm banks and you know, in John Rock’s time, he used to get the sperm from the medical students. And when I was a resident, I remember our sperm bank had a lot of medical students donating sperm. But times have changed of course. And you know, it's, it's, it's a different world. Now we have the sperm banks and the egg banks and it's just every, everything is, is on a whole different scale than when you think of it, you know, 30, 40 years ago, what was going on. I echo what you said. I mean, I remember very distinctly a patient of mine who recovered from lymphoma and she said going, she did get pregnant and going through infertility, she said was worse than having her cancer treatment. She said, this is not supposed to happen.
Rena: Well, I say on here all the time and I say to my patients all the time, you know, research shows the stress levels of infertility are the same as AIDS, cancer, and heart disease. So I mean there, and that's so, so it's so interesting you brought that up and I hope that that really resonates with people listening because I think people, you know, my patients often think they should go through this and still be at, you know, the 110% that they operate at a normal life. And I always say, no, you know, you wouldn't expect someone going through chemotherapy or radiation to operate at the same level they did before. You'd say, Oh my gosh, that sounds so stressful. How are you feeling? What can I do to help? And so I think when people understand that, that this is stressful, you know, you need to take care of yourself. It doesn't mean that forever, but in this time you have to take care of yourself. You need to cut yourself a break. This is hard.
Ronner: Very hard. Very hard.
Marsh: And the rates though, of either you want to call it impaired fecundity, or you want to call it infertility, are comparable to heart disease. I mean, it's not as if it's a minuscule amount of people that suffer from this.
Rena: Oh, no. I mean, one in eight couples, you know, it's extremely common. It's recognized as a disease by the World Health Organization.
Ronner: So, so we should segue a little bit in our last, in our last minutes that we have to tell you a little bit about how we feel the country is behind.
Rena: Oh yeah, yeah.
Ronner: We should talk about how we feel. And I mean, yes, we make a point in our book about talking about how, you know, we feel there's not enough study on infertility. I mean, when you talk about assisted reproductive technologies and patients who need that, it's a very small percentage of people who need fertility services. What do we say? We say 3% or 5%?
Marsh: Yeah, it's about 3% who need to have, so it's infertility is a bigger problem than just the people who need assisted reproduction.
Ronner: And our feeling is that the, you know, there was some hope with the Affordable Care Act that women would be getting better reproductive health care, whether it's pregnancy prevention or infertility services. So, you know..
Marsh: Including assisted reproduction.
Ronner: Including it, but we have no data on what non ART treatments work. And we don't really have data on how many patients are treated medically or surgically anymore for infertility without getting to the point of needing assisted reproductive technologies. We have data, the SART data, on assisted reproductive technologies, but we don't, we don't know in how many centers across the country and how many offices across the country women are given fertility drugs. And what is the outcome of this? So, you know, we, we feel if we could get a hold of better healthcare in this country, better universal healthcare, better reproductive healthcare for everybody and collect data on these non-assisted reproductive technologies, we would get a better idea of who's using what and how are people, how are couples getting pregnant? You know, we know, we know the expensive stuff, those numbers, but we don't know what's going. Like if I slip a patient, a prescription for Clomid and she's pregnant in three months well, nobody's capturing that data.
Marsh: And another thing we don't know is we have no idea, no idea how many babies are born by sperm donation.
Ronner: Yeah, we don't know.
Marsh: None. We know how many babies are born by egg donation because that's an assisted reproductive technology and every responsible practice of assisted reproductive technology provides that information to the database.
Rena: The sperm banks don't keep track though of…
Marsh: Well, they might keep track, but they don't have to tell anybody.
Ronner: There's no national data, bank of, you know, how many people are sperm donors. These are voluntary organizations that keep track of, you know, children.
Marsh: They still use the same data from like the 1980s. They say 30 to 60,000 a year. There's this great cartoon from, from, that we saw. We didn't use it when we did the book, but all this information about how we know how many cows are born from, from, from, from artificial insemination but we have no idea how many babies are, are born from artificial, from donor insemination. There's so much we don't know. We know a lot more about the kind of thing you work on. We know a lot more about assisted reproductive technology because it was the Widen Act and because the data's collected and it, and it's produced, but on medical treatments for, for, infertility that there's not national data.
Rena: That's fascinating. And you know, one of my macro goals is to help change the stigma of infertility and help change the dialogue and make this a more common discussion. You know, 20 years ago, 30 years ago, cancer was still the C-word, right? It was whispered no one talks about it. Now we all know what cancer is. We talk about it openly. And I think infertility is, is where, you know, cancer was 20 years ago. There's so much shame surrounding it. It's, you know, whispered about, people suffer in silence. And so, you know, the more we understand, the more we know how many people go through this, you know, which is millions upon millions of people, you know, the more we can work to erase the stigma and take away the shame. So it really is that's so I, I had no idea that all that data wasn't, you know, released, and I think it would just prove our point even more, that so many people need assistance and, you know, build families in, in different ways.
Marsh: During the Obama administration. There was, the CDC published a national action plan for the study and treatment of, of infertility. And there was a kind of a hope that his national action plan, which involved studies of various things and pretty, it was pretty comprehensive. But then Donald Trump got elected and of course now there's, there's, you know, the national action plan, as we said, there was no action on, on the, on the action plan, but maybe in that in a Biden administration, we can see national action plan restored because it would provide a lot of data on treatments, on successful treatments, on just exactly how much infertility there really is. We do know that women without a college education have higher infertility rates than women with a college education. We do know that because in most states, assisted reproductive technology and in many cases infertility treatments are not covered by insurance. People can’t don't get insurance. And one, and I believe, and we say in our book that healthcare is a human right and fertility care is part of healthcare.
Rena: I could not agree with that more.
Ronner: I mean, you shouldn't, you shouldn't have to mortgage your house to have a baby. And you know, to, to go back to your other point, I mean, I can't tell you how many of my very successful patients with infertility over the years, I mean, they'll sit and say, I am such a failure that I never had a baby.
Rena: I see it all the time. Class should never be a barrier to family building.
Ronner: And so, you know, I mean this whole idea of this CDC action plan which sounded to us like this is what we need to do. Have this information collected on a national level so we see who's consulting physicians for infertility, how are they getting pregnant? You know, are they using drugs? You know, does that work? You know, three cycles of Clomid, is it working? I mean, are they, is this being done in the general gynecologist's office? Are they seeking fertility specialist? And then the whole idea in this country of what do you do if there's no IVF center in your state? And as I learned, some of the general doctors will do the early workups,and then when you need ART you have to go to a major medical center like out West. Maybe you go, you go to Seattle because your, your state two States over that doesn't even have a center. So what about these patients? You know, it's, it's just, it, it should be a national discussion and we should have national statistics, state by state statistics who has infertility, who is getting care, what care is working and how much is it costing? Like how can we make it more affordable?
Marsh: Even now with New York joining the states that provide insurance coverage for assisted reproductive technology, there are only about eight states that provide, I mean more States that might provide a little bit here, a little bit. There's eight states that provide anywhere near adequate coverage. And even in those eight states, you know, some are, some are better than some are better than others. I mean, if you have, I mean, everybody should have health coverage and that health coverage should include fertility care of all kinds, whether it's whether it's birth control or, or whether it is infertility treatment up to and including IVF.
Ronner: I mean, it's, I mean, I don't want this to come off wrong in a negative manner, but here we are in this country, we have multiple centers that are doing are, are doing trials for uterine transplantation to help women who don't have a uterus. We have it at Penn. We have a trial going. So we're doing uterus transplants for patients who don't have a uterus, which, okay, we've been successful. There have been some births across the country at several of these centers, but we're not even looking at simple ways to get women pregnant who do have a uterus and who could probably get pregnant with some basic treatment. So, you know, there's a disconnect here. It's like, you know, the patients that come in that, that don't even have their vaccinations done and why is that? You know, it's the whole, everything that's wrong with healthcare system and having it so piecemeal and state by state and who gets covered and who can access it. And it it's been accentuated over the last four years with Trump. I mean, you know, nothing's improving, nothing's getting done. And you know, my patients who access their care through the Affordable Care Act are sitting there shaking, waiting to find out, you know, they're happy about Biden, but am I going to lose my coverage?
Rena: Yeah, my patients, I mean, you're preaching to the choir here. You know, I worked, I worked with Resolve on FAFTA the Fair Access to Fertility Treatment Act, which we got passed in New York to expand coverage, which was amazing, but there are still loopholes in it. So while we are now covering millions of New Yorkers that weren't covered before, there's still loopholes. And, you know, I got involved because when I went through fertility treatment, I had no insurance coverage and, you know, I still have patients who cost is a barrier and, you know, they're not covered under the new, the new care plan. And they're now struggling, you know, especially as it's coming into 2021 and people are evaluating, you know, what am I doing? And it's just so disheartening and, and nothing really, you know, breaks my heart more than people who have to stop or pause care when we all know that this is usually very time sensitive because they can't afford it. It's just not, it's not, it's not right, you know, or people, and then maybe making a choice to go to a clinic that maybe isn't ethical or selling them something that's not great care because they think the cost is better and it's just, you know, it needs to be streamlined. I think this, this needs to be covered for everybody. Everyone should have the chance to create a family. So, you know, I'm so thrilled that the two of you, you know, have written these books and are, you know, like-minded and getting your voice out there to help, you know, again, make changes. You know, I think it really, there's really a lot of wonderful men and women in this industry who are working towards the same goals and if we can all, you know, stick together and raise our voices, hopefully we can, you know, make changes and we have made changes in the past year but I think they need to be more.
Marsh: Yes, we agree.
Rena: I like to, I feel like we could, we could talk for, for hours about that, but we didn't even get to, you know, even the, the meat of your book. I have so many more questions. But I guess before we wrap up, tell any listeners, where can they find your book? We'll put everything in the show notes as well, but just so people know where they can find your book.
Marsh: Our book is published by Johns Hopkins University Press, so they can buy it directly from the press. They can buy it at the Strand, they can buy it at Barnes and noble. They can buy it at Amazon. It's pretty widely available. The Johns Hopkins university press has been having a 50% off sale on all books.
Ronner: So if you want to get it immediately and it's still 50% off for the holiday season, they could get it at a bargain
Rena: And we'll put all the details in our show notes, but yes that would make a great holiday gift. So, I like to end each episode on a note of positivity and by having everyone go around and share a gratitude, so something you are grateful for.
Marsh: I am grateful for my family.
Ronner: I am grateful for having the opportunity to work with my sister, because even though she, she is the older sister and I'm the younger sister, even though I look like the older sister, we have this way of working together. I mean, not only is she my favorite person in the world, but as we always say when we work together, she's always the boss, but I always get my way. Very grateful for my sister. And I'm also very grateful for my own reproductive endocrinologist because if it weren't for her, I wouldn't have my wonderful son.
Marsh: Yes, I am. I, as I say, I am grateful for my, for my family. But somebody who interviewed us once said, Oh, I've got this figured out now, the reason you started writing books together was because you wanted to spend time together. And, and in a way they were right. We were in different professions and how in the world otherwise would we get to spend all this time together, working together. So I'm grateful. I'm grateful for the partnership that, that we've had for 30 years in, in, in writing books together. And also, and when I say I'm grateful for my family, it's, it's a great family. Wanda's Wanda's son is, is, is like a, it's like, not a son to me, but kind of like, you know, it's such a close nephew and a, and our families are really close and we are very fortunate to have a fabulous working relationship and a fabulous, fabulous family relationship. So not a lot of people get to say that.
Ronner: And my son is nothing like me or my husband. He's exactly like my sister and go figure that.
Marsh: It was your egg Wanda.
Rena: That is so lovely. That's amazing. And I think, you know, I always say, I guess, I didn't know, Wanda, before this, that you had a personal experience with and so I think I'll, I'll add you to, you know, the more people I meet, I'm always, I find so many people who got into this field in whatever capacity because of either a personal experience or a family member experience. So what a amazing little surprise to know that the two of you are in the field as, Margaret, as a family member and Wanda as personal experience. I think that's great. I think that's amazing. And what a powerful connection. You know, everyone knows I got into because of my own experience and so my, my gratitude is I always try to think of, of new ones, but really these, these podcasts always leave me sort of with the same ones as I’m so grateful to meet other people like the two of you who, you know, are, are changing the field for the better and in it and, improving patient care. I think it's really amazing and energizing. Thank you both so much for being on it was really such a pleasure. This was fascinating. Everyone should read your books. I'll say books cause you have multiple. And I can't wait to see what you guys come up with next. Really amazing. So thank you both so much for coming on. This was really wonderful.
Marsh: We had a great time and it was wonderful to me.
Ronner: Wonderful to meet you.
Rena: Thank you both so much. And this is really amazing. So thanks. Thanks so much. Take care. Bye.
Dara: Thank you so much for listening today. And always remember, practice gratitude. Give a little love to someone else and yourself. And remember, you are not alone. Find us on Instagram @fertility_forward. And if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.