Ep 155: The Fight for Families: Advocating for Fertility Rights and Accessible Care with Dr. Kimberley Thornton
Fertility Forward Episode 155:
When access to fertility treatments is under threat, advocates like Dr. Kimberley Thornton step up to protect the rights of patients. In this episode of Fertility Forward, Dr. Thornton, a leading reproductive endocrinologist at RMA of New York, discusses her advocacy efforts with RESOLVE, a national infertility organization dedicated to improving access to fertility care. She shares RESOLVE’s work pushing for the Right to IVF Act, which aims to safeguard IVF access and expand treatment coverage for everyone, including veterans. Despite legislative setbacks, Dr. Thornton emphasizes the importance of sharing personal stories with lawmakers and the small but significant victories achieved in the ongoing fight for accessible care. Tune in to learn how you can support the cause and make a difference by advocating for greater fertility treatment access!
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 recurring guest, Dr. Kimberley Thornton, who is one of our amazing reproductive endocrinologists at RMA of New York and who is coming on today to talk about her work with RESOLVE and Advocacy, which is super important near and dear to my heart. So thank you so much for coming on to share with our listeners the really, really important work you have been doing with Resolve in terms of advocacy.
Dr. Thornton: Well thank you so much for having me again. It's always a pleasure to be on the the podcast.
Rena: So tell us what you've been up to with RESOLVE!
Dr. Thornton: Yeah, so this year has been a a, a really busy year for advocacy and advocacy is always really important in the fertility realm. But I think after everything that happened in Alabama earlier in the year and there was concern about access to IVF and, and access to care, it became more important than ever making sure that our patients have those rights. And so I've always been involved with RESOLVE for, for awhile. They usually do an Advocacy Day every year and I started doing that the first time in 2018. And I know Rena, you've been involved 'cause we've done that together where we have meetings with our legislators and, and reps and we talk about bills and issues that are important for fertility and, and infertility patients as well. But this year they did a Senate vote, which now since the first vote, which happened in June, was voted on again for what's called the Right to IVF Act, which actually was a piece of legislation that had four main components that we were really supporting. And so I got invited to actually go to Washington DC with RESOLVE for the vote. We got invited to watch the, the vote in the Senate Gallery by Senator Schumer. And so one of the big components of that Right to IVF Act was they had a component that was the access to infertility treatment. So it was called Access to Family Building Act, which essentially would codify the right to have IVF, meaning that no state could ban a doctor's ability to perform IVF or patients to be able to access IVF. So that was sort of one of the most important components after everything that happened earlier in the year. But it had other components and one was to increase access to fertility treatment for veterans because currently veterans only have fertility benefits if they can prove it's for a service-related injury. And so that can sometimes be really hard to prove, 'cause a lot of injuries and things can happen that may, you know, impact fertility but it may be hard to prove, how can you say? And so it, it becomes a really a big battle for these patients and it's, you know, for people who have served our country, it's horrible, to put them through that. And also some of them are deployed and so, you know, couples may not necessarily be together to be able to build their family. And so we know that time and age is always important in fertility. So necessarily like if there wasn't necessarily a service related injury does not mean it would not necessarily impact their ability to, you know, start a family for any couple. And then the other, one of the other components was that last two components were about increasing insurance access and coverage to IVF. So one of them was to, for private insurance companies and public insurance companies to have to cover IVF for infertility patients, similar to sort of the mandate we have in New York. And the other one was for the federal government to have to provide these services because the federal government in the United States is the biggest employer and so the fact that they don't cover IVF services is what a lot of insurance companies look to towards what they should be offering patients. And so it's really important for federal employees to have access because other insurance companies also will be more likely to follow suit.
Rena: I mean these are all so, so important and I think, you know, you touched upon, it's really covering a large umbrella of the population and you know, when I started working on this with you, I've been to DC and Albany a couple of times, and that we're still dealing with cost being a barrier to care and you know, people across the board not having coverage for family building.
Dr. Thornton: Yeah and I think it's really important and, and I went you know, as a more in a physician setting, but most of the people I have gone with at RESOLVE are actually patients or former patients. And I know you've done this before, it's really amazing when you speak to these people who are making these rules and and making these laws, how little they know about fertility and how important it is to share your story and your voice. Because sometimes it's not necessarily that they don't care that sometimes they don't even realize what is an issue or what, like, how it could impact people in a negative way. And so unless we're kind of there and showing up, it's not front and center for somebody who's necessarily not, hasn't experienced infertility or maybe didn't know anybody that experienced infertility or is not in this workspace.
Rena: Yeah, absolutely. And I think that's one of the things that struck me the most when I first started volunteering with RESOLVE was our access to senators and how cool it was. I really felt like I was making a difference and we met with people and we informed them and I think that it, it's exactly what you said, they don't know. And so it's up to us as constituents to bring it to their intention and inform and educate them, Hey, this is what's going on, this is what we need. And you know, they get so many things across their desk every day, but that is so much within our power to raise our voices and go and show up and educate and they hear and respond to that.
Dr. Thornton: Yeah, the right to IVF, the original vote in June unfortunately didn't pass, but it was a really historic vote because we have been advocating for so many years and this was the first time anything that RESOLVE has supported has ever actually even made it to a vote. So it was historic in that sense, so at least it was really heartbreaking seeing it not pass, but at least the conversation is kind of at least coming to the table. At least it's coming up for a vote. And so I guess out of a negative situation, that's something I could say is really positive and you know, but one of the big reasons it, Senator Schumer was really pushing it. He was so kind. He invited us to his office ahead of time for us New York delegates and we got to meet with him and he had us go in his booth in the gallery to watch the vote, but he opened up to you know, everybody and was like, well my daughter went through IVF so I have a grandchild from IVF now. And so this is why, you know, it became a really important issue for him personally. And so I think, you know, sometimes people have that personal connection, but if not, if we're not there then they may not know about what IVF is. And there's a lot of misdemeanor as a people. It's one thing when it, it's not and there's, I know a lot of controversy over creating embryos these days. So
Rena: I think we're still trying to change the stigma in some sense of it's not, you know, people gender selecting or this designer baby thing. And it's, you know, as the WHO recognizes it's a disease, infertility is a disease and say it on here all the time, you know, it impacts one in eight and it's doesn't discriminate. And the fact that cost continues to be a barrier to care and prevents people from family building is, you know, something I know you and I go through every day where it's, it's so tough when that happens and that's something that makes me feel powerless and frustrated but you know, you're really proving the work that you're doing and continue to do. We do have power, you know, we do have our voice, we can advocate, there are things we can do. And I know since, you know, I started in this space about eight years ago now, there have been so many changes in terms of advocacy and coverage and there really has been a shift. And that's because, you know, people continue to band together and do this work and we have made a difference.
Dr. Thornton: And I think we want everybody who needs access to care to like, no matter what state they live in, we don't want them to be blocked from that and we don't want financial barriers to, to be a factor. And so I think if anything, what I can encourage any listeners to do, whether you're in fertility realm as a, as a career or whether you're a patient, is anybody can be involved in this. And it's so easy to get involved. Like, the website for resolve.org can sign up, they usually do Advocacy Day every May and pre pandemic, we would always go to DC and you know, important votes like I I went this year but since the pandemic, you know, when we couldn't go visit everything became Zoom and, and it's now because it’s kind of become the norm. So it's so much easier to even advocate 'cause you don't even have to travel or worry about thinking, you know, expenses to be there. You, you literally can sign up and RESOLVE, makes all the meetings and you can do a Zoom and you're, you know, we always make sure nobody's alone if it's their first time. And so you get to Zoom with your representatives and and talk about issues that are important.
Rena: Yeah. And let's give a plug to RESOLVE. Yeah, so it's resolve.org and they have a ton of offerings. You know, they have support groups, they have information, they have resources and, and their big thing is is they're the national infertility organization and they do so much advocacy work. And I know that I myself got involved with RESOLVE when I was a patient before I was doing this work professionally because I felt so out of control and powerless. And so I started working with RESOLVE and then that, you know, carried through. But I think as you touched upon at the beginning of the episode, a lot of people, they get involved with patients because they go through this and they wanna give back, they wanna raise their voices and it's a way to feel in control. It's a way to, you know, sometimes have a silver lining out of a really difficult experience. And it's great connections. I think it, it helps so much to be involved. So, and RESOLVE is super easy to get involved with.
Dr. Thornton: Kind of by chance somebody that I knew as a patient and, and a lot of the people, same people advocate every year and so, you know, a lot of times you're kind of seeing the same people over and over, but there were some RMA patients that were there and, and so it was, it was just amazing because I like not necessarily my patients, like others from the group and at the end I feel like we're all became like buddies and and that's what a lot of, you know, people said, you know, it's just after going through that they wanna make a difference. And I think, you know, I went through fertility treatment to get pregnant so I get that aspect, but it's like what I live and breathe 'cause it's my job all day and so I feel like most of my frustrations come as a position, why can't patients access this? But it was, I think one of the most heartbreaking things to me is after the vote didn't pass, you know, everyone's like sad and upset and one of, you know, these girls who is like, now my friend, like who is a patient and I I, her story was like heartbreaking story. I like such a tough case was like, I feel so bad for you. And I'm like, you feel bad for me? Like, I'm like, what everything you went through? And she's like, well I, I'm on the other side of it now, but you're like dealing with this every day at work. And I was just so like, made me think like, oh my goodness. Like I always think as a physician, everybody going through infertility has a hard time and there's some cases that are just so difficult and and so heartbreaking And I'm like, if somebody who went through all those struggles and, and can is like so worried about everybody not themselves doing as a job and for the next generation of what they're gonna have to go through. I was like, it's just, it's important that, you know, even if someone's not struggling with it anymore, someone's done. You know, that's what RESOLVE is, has to resolve, completed their family one way or the other. It's important to speak up and it, it's just so amazing to me that some people who have gone through the hardest like trials and tribulations with fertility have been able to channel this into such a positive momentum to try to, you know, not even necessarily help themselves. They're trying to help you know, other people and be the voice for 'cause not everybody feels comfortable speaking up and that's also okay 'cause everybody's at a different point in their journey.
Rena: Absolutely. What a great story that's really touching. Yeah.
Dr. Thornton: How did you end up getting involved and RESOLVE in the beginning? Was it more that you just wanted to have a voice? It always is like interesting to me how patients get connected into this like organization 'cause it's such a great organization.
Rena: Yeah, totally. So I always say I spent the first year of my fertility journey feeling alone and isolated. And then the second year I got involved with RESOLVE and it really helped, it was just an organization I had heard about, you know, sort of through the grapevine. Once I started talking about the fact that I was going through treatment and then I just felt I got sick and tired of being sick and tired and feeling sorry for myself and sort of not living life and being wrapped up in treatment. And then I just started getting involved with RESOLVE. I just, with the year I remember going to Albany and just meeting other people and it really, really helped me with my journey. And then I started coming into the space professionally and they're just such a wonderful organization and you know, similar to you, I, I meet so many patients and a lot of people say, you know, once I'm sort of done with this, I wanna give back. And I know so many people, we have so many women on the podcast that have come on because they've created something out of their own journey and felt like something could have been better and then they've gone and created it. And so I think that is such a silver lining and you know, one of the, the gifts of a challenge is the other side, how is it gonna inspire you? And so I think there's so many women in this space who they go through this and then they do come out the other side and whether it's getting involved in advocacy or building something to make the space better for other people going through it. And it's really beautiful to see. So is there anything coming up in terms of advocacy that our listeners should know about?
Dr. Thornton: So that after the Right to IVF Act didn't pass in June, it recently actually just came up for another vote and didn't pass for a second time. So they didn't have enough votes in June. And so because Senator Schumer is the, the majority leader, he could change his vote to ‘no’ so that it could be up for re-vote later on. And so I think with, you know, there's been a lot of presidential candidates on both sides talking about IVF again so it's, it's definitely a very hot topic this year for many months in, in many candidates. So they did bring it up for a vote again and, and it didn't pass. And so at, at this point I would say those are probably gonna be the issues that get reintroduced again next year. So, you know, I guess for people who may not, you know, know as as much about advocacy or how things pass, like each like cycle and in the Senate and house, the, like at the end of the, the session, like if bills don't pass, they have to be reintroduced in in a following year. So I, but I I would say we've been advocating for very similar topics for quite a few years. So I think that they will be the same sort of topics. They may be under a different name, but I, I think because we haven't made any headway, at least with any of these topics, that they will continue and, and sometimes it's small, it's baby steps. So sometimes you feel like, oh my gosh, nothing gets done and it can take years and years. But I remember a couple years ago we were advocating really for federal employees to have coverage to fertility access because we knew that that's the stepping stone for private insurances and they still don't cover IVF but they didn't use to cover the medications for IVF and now they cover the medications and not the treatment. So sometimes like you get little wins that slowly will eventually hopefully become big wins, but it's, it's, it's pushing for those, those topics that are important. But as of now, I don't know anything coming up for a recent, you know, a new new votes. I think there probably won't be anything that at least that I'm aware of in the, in the next month.
Rena: Okay. And you know, again, we encourage everyone go on the Resolve website, www.resolve.org. You can sign up, you can look, you can be on, you know, a mailing list so that you're kept up to date and there's always opportunities to get involved and, and I know RESOLVE always welcomes any new voices. So this is definitely a way to take some power back and feel in control of a situation that so often makes us feel out of control.
Dr. Thornton: And some people too, if you don't feel comfortable speaking or or wanting meetings, RESOLVE makes it so easy. They'll always say what the issues are. You can even just click and put in your address if you just wanna mail a letter or email a letter to a representative, that is always very help helpful as well. Or a phone call with your representative or even truly if somebody wants to do, like I feel like advocacy day is like the first step of getting involved. They have training, everything ahead of time so you feel really well prepared. But even if you just wanna be in a meeting with someone else and you don't even wanna say anything, just to be there and listen so that you get a sense of it's something you'd wanna do, there are people who do that, I’ve been involved in advocacy for a while, even before RESOLVE 'cause I just feel like women's health issues is so important. I have three sisters, so I'm like an all girl family and, and all this the fertility stuff. I, I have a daughter too so I, I, you know, you want that and you wanna make the world a better place and you want people not to have to. You see these struggles every day, at least at my job of what people are going through and I don't want them to have to go through anymore. But everybody has like a different journey, a different motivation of why they do something, but they're in very small ways and very big ways that you can be involved and I encourage anybody to, to get involved if they're interested in it.
Rena: Absolutely. Well you are such a gift to the space. We're so lucky to have you and for you to raise your voice and lend your time and effort to this. So thank you so much for everything that you do.
Dr. Thornton: Well thank you for having me on again.
Rena: Thank you so much for coming. The way we like to end is by saying something we're grateful for. So something that you are grateful for today?
Dr. Thornton: I guess as we're on the subject of advocacy, I'll say one thing I'm really grateful for, I know this was a couple months ago that I went is when I went to DC, I brought my daughter with me because it was summer so she didn't have school. So my mom came along to help watch her while I was in meetings and I was really like, I was like, I'm gonna be busy, I'm not gonna have any time to spend with her. But my husband really encouraged me. He is like, it's really important for her to see you doing these things and you know, she's five. So I was having to explain like what a bill is and a law and, like, she asked me like, well what is IVF? And then I was like, well some, you know, people need IVF to start their family. And she was said to me like, my dream is to be a mom one day. Like, will I need IVF? And I was like, you know, these are really hard conversations to have. And I was like, I don't know, you might. And she's like, but most people need it and I won't be able to have it? And I was like, these are really difficult conversations, but I'm actually really grateful that even though I had, you know, in a very child way, it was very hard to explain that I got to bring her there. That she got to see it. And that we started having these conversations about, you know, different people start their families in different ways because I think it's been like really motivating for me because when the bill didn't pass, this is my daughter said to me. So that means one day if I can't have a baby, I may not be able to access medical care to have a baby, which was heartbreaking. So it makes me just wanna do this more. But I'm also really grateful that start having those difficult conversations 'cause you, you just, I never even would've thought of a child responding that way. So I'm, I'm grateful for that.
Rena: What a beautiful story. That's so amazing. So amazing. She has you as a mom. I guess I would piggyback off that and my daughter will ask and say, you know, 'cause we go through the whole story and she's seen pictures, I have calendars of sort of the medication schedule, whatever. And she'll, she'll say, well I need medicine to have a baby? And my daughter's almost eight. And I say, I don't know. You know, same kind of conversation and, and what a gift it is to be able to be women though that are showing our daughters how to raise our voices, how to work, how to make change for ourself and that we're going out there and trying to make the world a better place for them. Really Amazing. Well thank you so much for coming on as always. It was so good to see you and hear you and we look forward to having you on again.
Dr. Thornton: Alright, 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.