Ep 126: The Findings of Legislating for Inclusion with Dr. Samantha Estevez
Fertility Forward Episode 126:
When it comes to accessibility, we’ve made important strides by enacting legislation that enables more inclusive access to fertility care, but there is still a long way to go. Here today to help unpack this important topic is return guest, Dr. Samantha Estevez, a clinical fellow at Mount Sinai and Reproductive Medicine Associates of New York in reproductive endocrinology and infertility. In our conversation with Samantha, we examine the details of key legislative changes in New York State, their impact on LGBTQIA+ couples, and the contents of her new article ‘Breaking down barriers for same-sex female couples building families in vitro fertilization utilization since the enactment of 2021 New York state legislation’. Tuning in, you’ll hear Samantha’s breakdown of the 2017 New York state legislation, how it excluded LGBTQIA+ couples when it comes to family building, and the important ways in which the 2021 legislation changes addresses these shortcomings. We delve into the findings of Samantha’s study, including how the data showed greater inclusivity post-legislation, before reflecting on what this could mean for future advocacy and legislative changes across the US. This type of research plays a pivotal role in ensuring greater fertility access for all. To learn more about these types of legislative changes and why they are so important, be sure to tune in!
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: So we are so excited to welcome to Fertility Forward today a recurring guest, Dr. Samantha Estevez, who is a third year fellow in reproductive endocrinology and infertility at the Icahn School of Medicine at Mount Sinai in New York City and Reproductive Medicine Associates of New York. And before reading that little sentence, we were looking at her bio and saying, gosh, your bio is so accomplished and long. I think that it's too long to read in the intro for the podcast. So rest assured Dr. Estevez has a very, very accomplished bio and we will include it in the notes and you can see on the RMA website. We're super psyched to have her on today to talk about her study that she is presenting at ASRM this year that is getting a ton of buzz. The title is Breaking Down Barriers for Same-Sex, Female Couples Building Families: in Vitro Fertilization Utilization since the enactment of 2021 New York State Legislation. So a mouthful and a lot to break down and I'm super excited! I was, I was reading it before recording and thinking about, you know, I didn't even know this wasn't even included in the initial round of reform that was just passed I guess a few years ago now.
Dr. Estevez: Yeah, exactly. First off, thanks so much for having me and for those kind words. Totally not, not true, but I definitely appreciate the kindness. And going back to the title, I know it is definitely a mouthful, but there's a lot of things we wanted to try to encapsulate in there. Really the, the social idea of the limitations that a lot of couples faced with barriers when it came to family-building and how that's, like you've said, changed because of legal changes. And as you mentioned, when there were initial changes to the legislation in the state of New York regarding IVF and fertility care coverage, it wasn't something that was really targeted to be as inclusive as one might hope. So in 2017, the initial legislation that had come out required insurance companies to cover infertility care if they met the quote unquote definition of infertility which was 12 months or more of unprotected appropriately timed intercourse. So by limiting it to that strict definition, it inherently excluded people who would need fertility and infertility care because they lack either, you know, sperm, or eggs, or certain kinds of gametes in order to build their families. But they would need a provider within that sub-specialty just as much as somebody who had infertility based on that diagnosis of, you know, 12 months of being unable to conceive.
Dara: Wow. So this was not even something that… even though it might've been on our radar, it wasn't something that was even mentioned up until 2021?
Dr. Estevez: Exactly. So in 2021, governor Cuomo, well then Governor Cuomo, updated legislation with a new circular that was published and that is even longer name and that's why we left it out of the title. But that specifically directed the Department of Financial Services should provide immediate coverage for LGBTQIA people within the New York State to eliminate the lag time and additional expenses that really were incurred from that previous legislation and everything else really that came before it. And a lot of insurance companies still, depending on where you're from or what that companies might still try to abide by those things, but New York, with this legislation, they were forced to kind of update to a more inclusive stance. And you know the issue with that, with a lot of couples that might come in, they come in and they say, okay, well your insurance and there's no legal changes because of this so you have to do say, you know, 3, 6, 12 months of IUIs and getting a vial of sperm for an IUI is a thousand plus dollars and you have to take medication possibly and have monitoring and there's all these additional expenses that may or may not be covered for varying degrees of that for insurance purposes, to then possibly lead you to what you had wanted to initially, which would've been IVF. And so the fact that this new legislation came out and specifically targeted the fact that you don't have to necessarily go through that, you can go to IVF if that is the right option for you from the beginning, really is saving a lot of couples time and energy and money and just social, you know, social problems and personal anguish from having to go through the whole process that it previously wasn't what it is in honestly most other places in the country.
Rena: It's so, I mean it's so crazy that it wasn't included the first time around. Who can you credit, like who caught this? How did you even sort of come to make this study come about?
Dr. Estevez: I personally knew about the changes and I think that was just from being aware of what was happening within the state of New York. And I know that at RMA we've made adjustments because at the same time new changes were made for surrogacy and gestational carriers within the state of New York being legalized. So at that same press conference, I believe Governor Cuomo within a few months another press conference, both of those were released. So both of those really targeted the LGBTQIA plus community by giving them much better access to fertility services that, again, could be inherently discriminating the way they were previously defined.
Rena: Okay. Now I have a super, like, geeking out question. So when I was reading you say under materials and methods: patient demographics and IVF cycle data were collected and analyzed using chi squared and Wilcox rank some tests, multi-variable linear regression was performed adjusting for age, body mass index, and anti anti-mullerian hormone. So BMI and AMH. Like, what pertinence or what relevance does that have to this study?
Dr. Estevez: So it's really putting it within the context so that you know whether you are a lay person, even though most lay people won't be reading the scientific journals, or if you're another provider who's reading through this and seeing does this apply to my patient population? How are they making sure there's no biases within this? How are they really accounting for everything? Because a lot comes into any kind of research that somebody does, you know, the thing that usually stands out and gives you a really good bottom line is that regression that most studies will do. So by what we say adjusting for all those different variables and as you listed out, there's a lot of different things we took into account. We're trying to make sure that what we find as our results are not skewed because somebody was older in one group or somebody was younger in one group or there was a big difference between the populations. We kind of make it a, to put it, like, simply a more homogenous thing so we can say are findings we found that were significant truly significant when you make this a more neutral sort of perspective? And in doing that we were still able to demonstrate that there is a significant difference. So again, showing that, you know, not a direct 'cause we can't say directly because like I said, there's a lot of things that come with legal changes, but more directly there's probable cause that this legislation allowed for greater access to care when it came to our patient population, which is a wonderful thing to see.
Dara: So let's take a step back in terms of objective and also the, the sample size and the population group. I found it really interesting, you know, splitting up the two different cohorts, you know, based on time prior to this legalization and then post. So definitely share with our listeners kind of how you grouped the two groups, the timing, how many people, there's so much, so many good nuggets in here I feel like.
Dr. Estevez: Yeah, of course. Of course. So you know, we looked at same-sex female couples that came to our fertility center over an extended period of time. So the legislation as we mentioned was enacted in 2021. And so our first cohort were patients who came between March 2018 to January 2020. Those were patients who obviously didn't have this legal change that had come about. They did fall within that 2017 change in fertility care coverage within the state of New York, but it was before the more inclusive version in 2021. And within that pre legislation cohort we had 250 couples that met our inclusion criteria. So you know, 3, 250 couples. So really 500 people in total who were coming to help build their families. And then in the post legislation cohort, because this is a recent change and we were really following things out a little further by looking at, you know, people possibly getting pregnant and going to their OB doctors, we didn't have as long of a tail end to look at this. But we looked at from March 2021 through December 2022, so like about a year and a half worth of data to see couples who came after the legislation and that was 35 couples. So even though a smaller group it was you know, several years less than the other. And we made sure that the study would kind of take, take that into account when we were doing our statistical analysis because of that difference in the group size. But we also wanted to not, you know, completely rule out this post cohort because there could be something significant and there was, so it was a…
Dara: I'm happy that you mentioned that 'cause I was gonna ask, I said you know granted it was a much longer time that you researched prior to 2021 and then was that short one year window. So I was gonna say like how exactly were you able to take that into effect? But that was great in terms of your statistics that you were able to kind of take that into account.
Dr. Estevez: Exactly. And we also just added on, 'cause we're working on a manuscript for this as well, we had looked at it kind of peripherally but we wanted to add it in to give more information in the manuscript 'cause the abstract only tells you so much. We also looked at data for the number of IUIs that people completed prior to their first IVF cycle. And so even taking it to the account that longer period beforehand people could have done more IUIs it wasn't just looking at the raw number of IUIs that somebody did it was looking at it in the context before IVF and we found that the median number of IUIs for patients in that pre legislation cohort was two versus the median number for the post legislation cohort was zero. So you know, IUIs occurred on both sides for multiple couples, but more people were likely to have to go through an IUI process, which was the whole point of legislation that people could access IVF more quickly and more readily. And so again demonstrated again in that IUI data that more people were likely to have done IUI before that legislation made it possible for them to go directly to IVF.
Rena: Hmm. And did the couples know that they were a part of this study?
Dr. Estevez: No. So this was a retrospective study. This is something that's done across a lot of different fields of medicine and it's basically we as patients come, they are aware that some of the data might be used, they sign it in waivers when they come to the office that some of their data might be used. It's all de-identified so there's nothing to directly link that patient with them. And we are able to use our electronic medical record to find the patients that meet certain criteria. We have a whole team at RMA who goes through and you know, I give them what I need and then they're the wizards behind the screen that are doing everything, pulling all that information. And we work together really collaboratively. 'cause I bring that clinical element, they bring that computer science and data analyst element, and we're able to really gather everything we need for these patients to make sure that they are a cohesive unit. We can draw those safe conclusions by making sure this is a very sound research study
Dara: Yeah. And interesting…
Rena: ...for so many people.
Dara: Ii's interesting also that you had a secondary outcome, which was the time from consultation to first pregnancy discharge to your local OB. So I found that's interesting too. Not just the time from consultation to potential IVF or co-IVF, but also from consultation to pregnancy. What did you find there?
Dr. Estevez: So, you know, I always think it's really important, but even though patients may not be reading primary literature and reading over manuscripts, I think it's important as a physician and as a physician researcher to really keep in mind what's the takeaway that a patient would wanna know? What's the thing that you wanna be able to say to your patient at the end of the day when you look at something? And patients could say, great, I can get IVF faster, but they'll really wanna know if they're coming to see you, am I going to be able to get pregnant sooner? Will this help me in building my family? And we found a, you know, even though it was a non-significant difference, there was, it was just barely non-significant and there was a difference in the days. So for the pre-legislation cohort, that 250 couples, the time from initial consult ‘til their discharged to their local OB was about 486 days. And then that went down to about 377 days. So that's, you know, more than three months time of less care, less expenses, less you know, time angsting and worrying about this thing and being able to move forward and, and build your family. And those were kind of the medians that we had found from that, again, showing that there was, even though not statistically significant, there was a difference in that time period. So people were able to sort of actualize that in their families and their pregnancies.
Rena: That's so wonderful. I mean, I work with so many same sex couples who just feel so discriminated against in the process for so many reasons. You know, both this or even, you know, all the paperwork required and I'm so happy that you know, this has been done and you did this because it's definitely a step forward in the right direction to just equalizing this.
Dr. Estevez: Yeah, exactly. And as more time passes we'll just be able to gather more data to see that, you know, this is making a difference. And that's just what we can use to fuel more advocacy and more legislative changes, whether it's in New York or beyond, to show what a difference it does make to have the government and the laws behind you when you're trying to build your family versus trying to fight an insurance company that'll just turn you down right away 'cause It's not something mandated within the state.
Rena: Right. It's already hard enough. And you know, we had on, gosh, Dara. was it, I think it was another ASRM study about oncofertility? Oh my gosh. And in equalizing care or or changing reform for people that had received a cancer diagnosis. Of course I'm blanking right now.
Dara: Well I think in general I think that it's great to see that there is steps being made to make these changes. I still think, you know, I think it's great in New York State, I'm one now I'm thinking like how many states still don't have this legislation passed? I'm, as I'm making the assumption and granted, I could be wrong, but you think we would be one of the first ones for states to have it. But I'm assuming there's a lot of states that that haven't even passed this, whether it's for onco, whether it's for LGBTQIA, I'm hoping that this sets the tone for other states to kind of take heed and follow suit.
Dr. Estevez: Yeah. I mean, as of right now, and I'll talk about this when I do my oral or I guess this podcast may be coming out after I've finished, I'm not sure, when I present my information at ASRM, but basically 29 of the 50 states in the US as of right now have no mandate in fertility care at all. So patients are just kind of left there. If their employer decides to provide it - great! But there's no legal mandate. And then 21 states require kind of this big classification of fertility services, 14 of those states explicitly state IVF in there and then 11 of those states explicitly say IVF and fertility preservation, which kind of ties into that oncofertility one. But again, when it comes to these populations like the LGBTQIA population, that really is even further because they might mandate those coverages like New York previously did, but still say you need 12 months of intercourse and if two partners only have sperm or two partners only have eggs, that's just not inherently not possible and wouldn't work for those couples. And you know, I know the state of Illinois's definition of fertility legally is this more broad inclusive one that doesn't give these 12 months. It leaves space for oncofertility, it leaves space for LGBTQIA patients, it leaves a lot more space so that infertility is not just intercourse defined and a very heteronormative definition. And I know that ASRM has been within the LGBTQIA sig, our special interest group, we've been talking about trying to get the definition changed by our organization as well. We're working towards that so that again, the physicians can work as advocates. So if something happens on a legal level, we could say, look, the primary organization agrees with us. It shouldn't be defined in the singular way. You know, there are changes but there's a lot of growth that needs to happen across the country and I definitely count myself lucky and I know we all do for being in the state of New York, which is generally a fairly progressive state about these things. So our patients have that definitely on their side.
Rena: Well and how lucky are they that they had you, you know, to work on this? And what about any sort of future implications for this?
Dr. Estevez: I think future implications is really just being able to bring this data and like I said, as we add more, looking at longer term effects, seeing how we can apply it in other states or have it as be as a platform for other people to use this data to provide to their, you know, legislators and to their insurance companies and things like that. And then also, you know, doing possibly in the future prospective studies. So like we had talked about before, this was kind of de-identified information from our patients that we had gathered from their medical records, but we weren't actually able to talk to the patients. So, you know, that's why we can say there's a good chance that this legislation helped, but we can't say 'cause maybe all those 35 couples just decided we're done with IUI after zero to two tries versus the proceeding cohort is like, no, we have X, Y, and Z reasons. So doing a prospective study where you could actually talk to the patients, get kind of inside of their heads, see if they knew about this, see if they made changes to their decisions and their plans because of this would be a really good way to kind of validate and have a better understanding of how patients are really using this, you know, to their advantage. And if they're not, then also using it as a platform to educate people across New York to say, Hey, you have this, you're one of the lucky few who have a legal backing when it comes to you trying to build your families. So if you can take advantage of it, you definitely should.
Dara: You made a good point in terms of, you know, educating the providers because it's one thing, you know, the patients may not necessarily be aware, but I do feel like it's our duty as providers to be informed about this and to also inform our patient community of how this has changed and how this really can, you know, change their fertility path. So that's really exciting.
Dr. Estevez: Yeah. That's a really great space to be in.
Dara: I love it. You've done so much this year. I'm like super impressed and like I really geeked out this year in terms of, of all the research that's been done and also to see, like, how we can continue. And I think it's a great idea, you know, potentially looking at our prospective study down the road now that we've already have such a great base with a retrospective.
Dr. Estevez: Exactly. Yeah. And our patients are always lovely and they're really the kindest and so willing to help, you know, basically the person next to them, the person in need, the other person who's gonna be following them ‘cause anyone who's going through fertility care, whether they're, you know, heterosexual and they're having real problems with fertility for whatever medical reason, or if they're a queer couple who's coming in who doesn't have a uterus, doesn't have an egg, doesn't have sperm. You know, everyone, I always say it to every patient, we know you're walking into the door and you would rather not be seeing me. You would rather that this sort of be in a simple straightforward sort of thing. But because of that, because of what it takes for patients to come and see us for whatever reason, I think they understand that, you know, they're hopefully helping others in certain ways and learning whether it's just by going through the experience and being able to talk to a friend or something more directly with us doing this research as well, you know, to bring that out. I shouldn't say more directly, more broadly to help the larger population so we as providers and the community can serve the next group of people who come in and see us even better.
Dara: Beautifully said.
Rena: Yes. Yeah. Well it is such a pleasure to have you on and, and to talk about this really, really important study. I'm so psyched to share this episode. I believe we're gonna share it after ASRM since everything's kind of on lockdown until….
Dr. Estevez: That's true.
Rena: You’re there. Yeah. Super secretive.
Dara: But I'm sure there'll be lots of excitement afterwards and really so happy to, to have you on to share this exciting research and we can't wait to, I'm sure have you back on for multiple future studies that will hopefully expand on this topic. So thank you so much Sammy, for Dr. Sammy for being on this episode. And as I'm sure you know by now, how we like to end our podcast is with that words of gratitude. So what are you grateful for this morning or today?
Dr. Estevez: I'm really grateful for my team that I worked on this whole project with. They are a really amazing group and Katrina was on with me in the previous one. She actually worked on this project as well, but Katrina Mietsch, Isabel Band, Bethany Dubois, she, all three of them along with our data team and research team at RMA have just been absolutely stellar. You know, I can't speak more highly of, and all three of them are medical students, incredibly impressive and have really illustrious careers ahead of them. So I'm very excited for them and happy with the work they're doing. And a number of them are gonna be coming to ASRM as well. So I'm, I'm grateful to have been able to work with them, to mentor them a little bit, but also learn a lot from them at the same time too, so,
Rena: Oh, I love th
Dara: So nice to humble. I love that. But it's true. It, it takes a village, it takes a team and it's, I think we work well in numbers to support each other, so it's really nice to acknowledge the people who have been there to help you out. Yeah. Rena, what are you grateful for today?
Rena: Oh gosh. Well it's been raining for like three days,
Dara: Four days I feel like.
Rena: Yeah, four days? Yeah, it's insane. But I guess I'm grateful for, I'm grateful for shelter, I'm grateful for still being able to go outside, move my body, brave the rain. I mean, just being able to be here today with the two of you ladies.
Dara: I was gonna say, I hope you still got in your runs. I'm not sure how safely you can get in your runs in the rain?
Rena: Well, you know, I've been out for a long time with plantar fasciitis, so yeah, it's been a no no, 23 marathons for me anymore, but I have been coming back, so I'm just super, yes, I'm very grateful for that. What about you, Dara?
Dara: I'm grateful. I had a really nice meditation this morning, so I'm grateful for the stillness. I feel like it's a nice way to start the day for me to clear my mind and to start my day kind of on a clear footing no matter what, you know, the rain, you know, work, whatever comes ahead of me. It's kind of a nice way to start my morning. So I'm really grateful for my practice.
Rena: Oh, I love that. I've been doing the Deepak Chopra 21 day meditation. Have you done that?
Dara: It's incredible!
Rena: It's amazing. Highly recommend anyone listening.
Dara: Yeah. And there's great exercises too for people, which is nice.
Rena: It's really, it's a wonderful one. So love that practice too.
Dara: So happy to have this discussion. Thanks again, Dr. Sammy and everyone, have a great day.
Dr. Estevez: Thank you both again. Always a pleasure.
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.