Transcription:

Deborah Howell (Host): You know, everyone who goes through infertility treatment has a story to tell. In fact, this is why we call it a fertility journey. Joining us today is Stephanie Vojas Taylor, a patient, lawyer and lobbyist. Stephanie will share her story from navigating infertility as a patient all the way to lobbying for IVF protection.

Host: This is the Time to Talk Fertility podcast, and I'm your host, Deborah Howell. Welcome, Stephanie.

Stephanie Vojas Taylor: Hi, welcome.

Host: Oh, such a pleasure to have you with us today. I can't wait to hear your story. Can you tell us a little bit about yourself and what led you to Fertility Centers of Illinois?

Stephanie Vojas Taylor: Yes. First off, thank you so much for having me here today. It is an honor and a pleasure. My name is Stephanie Vojas Taylor. I am married to my husband Ryan and we've been together for 10 years, married for five. And we have this weird story where we met in Springfield. Both of us were lobbyists. And because of that, we split our time between Chicago and Springfield and never really kind of thought about how old we were and just we're living life, having fun, until we finally realized maybe we should pick one place to live. And so, that was when I moved in 2016 to Chicago. We'd been together at that point for five years. And that's when we really kind of decided it was time to think about getting married and starting a family.

And I don't know, I never thought I'd have a problem getting pregnant. I was 34 when we got married and that's when we started to try. And I had one family member, she was a second cousin, who had to go through IVF, but she went through IVF because she didn't ovulate. So, I was near certain I was ovulating, so it just wasn't something that I thought about. But after months of not being successful trying, I decided I was going to start trying to invest in some of these gadgets that tell you when you're ovulating, but I was really shocked because all of those require you to have at least a 24-day cycle. And I didn't know it at the time, but my cycle was short, like really, really short, like 21 days short, and that I guess is considered outside of normal. And so, that's when I really started to question whether or not things were okay. So, we kept going at it for a couple more months and I just knew it was time to see a doctor.

And at that point, I had turned 35 and we were way past that six-month mark that tells you, at 35, it's time. And so, also, like I said, I had just moved to Chicago a couple years prior to that. I didn't have a gynecologist that I loved. And when I called the gynecologist I did have, it was going to take a few months for me to get in and I didn't want to wait a few months. And so, I called my one friend who a few years before that had went through IVF and asked her for her doctor. And that was how I got to FCI. She'd used Fertility Centers of Illinois when she went through IVF. So, I called that day and basically said, "Who's the first doctor I can get in with?"

Host: Wonderful. Wonderful. And how did you feel after you saw that doctor and then received your diagnosis?

Stephanie Vojas Taylor: So, I was diagnosed with diminished ovarian reserve, and I felt very ashamed and alone when I received my diagnosis. Everything on my husband's side was very normal, and that was really difficult for me because I felt like I was the sole reason we may not be able to have a family. And every time we went through a failed treatment, I felt like I was the failure, not the treatment.

Host: Sure. Sure. And then, the happy part, what was your treatment experience like, the highs and the lows?

Stephanie Vojas Taylor: Well, let me start off by saying that when you get a diagnosis and you start going through treatment, I'm not sure in those moments you can really identify highs and lows, because it all just feels like a big low experience. But it's really only after being on the other side that I can look back and identify highs and lows. But our plan was, and I'm a big tight A personality, so a plan really, that helped keep me focused. So, our plan was to start with three medicated IUIs. And if we weren't successful after those, that's when we would move on to IVF.

Host: I'm going to stop you for a second. IUI, for anybody who doesn't know are?

Stephanie Vojas Taylor: It's intrauterine insemination, right?

Host: Good for you. You got it.

Stephanie Vojas Taylor: That was when I was like, "It's been a while."

Host: Yeah, you got it.

Stephanie Vojas Taylor: Yes. And so, that's basically where I would take medication during the beginning part of my cycle, they would then collect my husband's sperm. They put it through this little spinning thing, and then they inject the sperm directly into my uterus.

Host: Okay. Good job there, by the way. I'm not sure I would've remembered all that.

Stephanie Vojas Taylor: Yes. So, I used Clomid for my medicated IUIs and I just want to give everyone out there a big warning on Clomid, because there's a thing called the Clomid crazies. And we were not prepared for the Clomid crazies at all. And we each did our first treatment cycle over Christmas. And I also would definitely not recommend starting your treatment over the holidays.

Host: Yeah. Too much stress.

Stephanie Vojas Taylor: Way, way, way too much stress. And so, because we weren't prepared for it, we didn't know how to warn our family properly about it. So, I look back, I got into this screaming match at Christmas Eve dinner over-- it was something so trivial, but no one understood at that moment that it was like not me that was having this argument. It was really just the meds and the Clomid crazies reacting. And I had a hard time really trying to explain that even like in the moment and after the fact. And I will never ever forget the day after Christmas that year, I was in Williams-Sonoma and I was trying to return this pot that I had gotten for Christmas. And I needed to return it so I could get this very specific pot that I wanted to cook this very specific dish. And I had this breakdown to the sales worker. And I like, to this day, wish I could find him and apologize. I mean, I was crying hysterically. And it got to the point that I finally had to excuse myself to the car, go and to talk to my husband and I just like went there and I was like trying to like calm myself down. My husband comes back into the car and I think for him that was the moment that he understood this wasn't me, this was the effect of the medication. And that experience allowed us to prepare properly for like subsequent treatment cycles. But in that moment, and in those like first few days, we just didn't understand the effects that Clomid could really have on you. So again, just a big warning for anybody out there that ever goes on Clomid.

Host: That's excellent, excellent advice, you know, a heads up. Knowledge is power for sure. And it sounds like you had a really nice support system. What did it look like as you went through your treatment and how did you feel?

Stephanie Vojas Taylor: So, one thing I did mention was we were really lucky to get pregnant on our first IUI cycle. And that pregnancy was not viable, and it was a learning experience all around just on how much of a journey it was. But up until the miscarriage, we didn't tell many people about our diagnosis or our treatment, just kind of a handful. And that made a very lonely road even more lonely. And actually, upon getting my diagnosis, I really retreated from my friends and from my family to focus on treatment. And I didn't tell them that, so they didn't know that's what happening. I was just really too ashamed to talk about it with anyone, and I a hundred percent do not recommend that approach. If I had to do it all over again, I would have told everyone from the beginning, especially because, you know, we were at that point, we'd been married over a year, we work in a very close-knit community and you get a lot of, "When are you guys going to have start having kids?" or "When are you going to get pregnant?" And oh my gosh, the number of times I would have to muster up this witty response and then like, run to the bathroom and cry my eyes out. You just don't appreciate it. And to this day, I will never ask anybody if and when they're going to start a family. But after the miscarriage is when we really started opening up to people and it was incredible the response and the support we received. But even then, no one could really relate to what we were going through in that moment.

And so, I was really lucky. I was doing acupuncture at Pulling Down the Moon and they had a fertility yoga class and I actually met some really, really amazing women through doing fertility yoga, and those women became my support system. I still talked to all of them today. And one of them is like my absolute best friend. We talk every single day. I just want to say hi, Tina. And I always joke that it was really hard for me as an adult to make friends, but I made more friends going through infertility than I have any other way as an adult. And it came in so handy too, once I did have my son, because we were all having kids at the beginning of the pandemic. And so, I also had this built in support for others that were navigating having a child in the middle of a global pandemic and what that meant, and just also the isolation and loneliness that we went through during that experience. So just all around, these women today continue to be my support system.

Host: That's so lovely to hear. And what gave you hope throughout the process? You mentioned it was a lonely road for a while.

Stephanie Vojas Taylor: Yeah. Research and knowledge on both my condition and just the treatment options we had available, I solely, I think, listened to podcasts on infertility while I was going through infertility. I listened to this one amazing podcast where Dr. Allison Rodgers from the Fertility Centers of Illinois is a regular guest.

Host: Yeah. She's been a regular guest here on the podcast. Yes, she's wonderful. Wonderful.

Stephanie Vojas Taylor: She's amazing. I think that if I ever actually met her, I would make a fool out of myself because I would be so starstruck. But she's wonderful. And I follow her on Instagram now too, and just listening to her and her journey is, even today, very comforting.

Host: So from your perspective, are there any words of wisdom you'd like to share for anyone going through treatment?

Stephanie Vojas Taylor: One day, you will look back on this entire journey and you will appreciate it for everything that you've gotten out of it and all the life lessons that you will have learned through it. But while you're going through it, give yourself grace. It is hard, it is lonely, but it's so worth it.

Host: Got it. That's wonderful advice. And can you tell me how your experience maybe inspired you to lobby on behalf of fertility coverage and reproductive rights, because that's a big step for you?

Stephanie Vojas Taylor: Very big step. I often joke though that I don't have a lot of skills in life, I'm not creative, I'm not crafty. Everything I try ends up looking like that show Nailed It. It's bad.

Host: The pink lopsided cake, I love it.

Stephanie Vojas Taylor: Oh, so lopsided. But I do know the legislative process and I know laws. So, it was the one area where I felt like I could make a difference and I could really give back. And so, that's what led me to it. My first foray into lobbying for anything fertility related was based off of my experience of not having any insurance coverage for my fertility treatments. When I first received my diagnosis, everything I read on the internet said, "Well, you're lucky you live in Illinois. And Illinois requires fertility treatment coverage." And so, you don't at least have to worry about how you're going to pay for coverage. But that ended up not being true for me because while I did live in Illinois, my insurance policy wasn't written in Illinois and so, it didn't have mandated coverage. And that was a really eye-opening moment for me where I realized that, of all of the insurance policies in the state of Illinois, even with that mandate really only less than 20% have any sort of fertility coverage. And I wanted to figure out a way in which you could just let people know that before, so they weren't figuring out when they get diagnosed that they didn't have fertility treatment coverage in their insurance policy.

Host: Yeah, that's a lot to take in during that very poignant time, when you feel so fragile. Can you share more about the bills you've lobbied for and what the outcomes were?

Stephanie Vojas Taylor: So, I am incredibly proud of the work that I did to codify IVF protections into law in Illinois and make them and assisted reproductive technologies. So, that's everything from IUIs to surrogacy, basically anything that is included in your treatment as you were treating for infertility is now a fundamental right here in Illinois.

Host: Bravo, bravo and brava.

Stephanie Vojas Taylor: Yes, thank you. You know, we're the first state in the nation and I really, really just hope more follow suit because, it's healthcare and anybody who wants to grow a family and needs to use assisted reproductive technologies to do that should be able to do that.

Host: Yeah. And that's, I guess, what it means when it says Illinois is a mandated state.

Stephanie Vojas Taylor: Correct. So, what that means is there is a legislative mandate to cover fertility treatments by your insurance. But as I said, that mandate to cover really covers less than 20% of all policies in Illinois. And so while Illinois mandates for fertility coverage, just because you live in Illinois and have private insurance doesn't mean that you actually have that coverage.

Host: Yeah. They make it as complex as they possibly can, don't they?

Stephanie Vojas Taylor: They really do. And historically, fertility treatments are considered to be voluntary treatments. And I think anybody who's ever went through fertility treatments will tell you it is not voluntary.

Host: No, it's not at all. It's the last thing you want to do.

Stephanie Vojas Taylor: It's a hundred percent the last thing that you want to do. And you're very vulnerable emotionally and mentally at that point in time to then have to learn that your insurance company does not believe that it's a necessary procedure. It's kind of mind-boggling.

Host: It sure is. And does the state of Illinois have the authority to regulate employers in the state of Illinois?

Stephanie Vojas Taylor: One of the other bills that I worked on was kind of a how do we create some peer pressure to get more employers to cover fertility treatment. And so, because Illinois has the ability to regulate employers in the state, we came up with this concept. And by we, it was me and it was the world of the Illinois State Capital. It's very close knit, it's like a high school. And I've found so many other women who had went through this and who know about insurance and insurance regulations. And so, putting our minds together, we figured out that you could require employers to give out a comparison chart that shows here is what would be covered if your insurance policy was written in the state of Illinois and had to follow those essential Illinois health benefits, and here's what ours cover.

And so at the time, I was working for an employer who was headquartered out of Wisconsin, and that's why they didn't have to mandate insurance coverage, and it was fascinating. The first year I got that comparison chart, to like see how they covered everything that would've been covered under Illinois except for fertility treatments.

But the idea is that you eventually, as an employee, will look at that and that you can then go and ask your employer to have that coverage. If you see it early enough, maybe you're somebody who doesn't think like me that you would need it, or you're somebody who you'll need it for various reasons or healthcare diagnoses, that you can then be more proactive and you can kind of peer pressure your employer to cover it, because your employer can voluntarily decide that they want to cover fertility treatments. They don't have to wait around and be forced by a government or legislative mandate for that coverage.

Host: That's fascinating. Fascinating. You have to, of course, be brave while you're vulnerable to go to your employer and ask them this big thing. And, you know, it colors the way they look at you, and there's a lot going on in that simple transaction. But good for you for making it a possibility. Now, how are the laws in Illinois different than other states?

Stephanie Vojas Taylor: Well, as I said earlier, Illinois is the first state in the nation to codify IVF as a fundamental right and all assisted reproductive technology. So first off, that makes it very different from every other state. And I'm very, very proud to live in Illinois where they've made assisted reproductive technologies a fundamental right, especially with the overturning of Roe v. Wade. I don't think people fully appreciate the intersection of that Supreme Court ruling and just the advancements that we've made in reproductive healthcare. And without that protection on a federal level, it's really thrown to the states for protections. And again, just happy to live in Illinois now where it's a fundamental right.

Host: Big time. Now, are there bills or other reforms you're currently advocating for that are related to fertility?

Stephanie Vojas Taylor: Well, I think we've all seen in the news that access to mifepristone is under attack. And even in states where it's legal is going to be questionable. I had a miscarriage and when I had that miscarriage, I was very adamant at the beginning that I was going to just let my body naturally go through the miscarriage process. But then you go home and you think about what that means and how long it could take, and I had changed my mind. And because I wasn't at my doctor's office when I changed my mind, I had to go back to the Fertility Centers of Illinois and sign what seemed like a million pieces of paper and show my ID and do all of this just to get a prescription. And then, my first dosage didn't work, and so I had to get a second dosage, which is, I think somewhat common, somewhat uncommon, but that created a lot of insurance barriers and a lot of insurance overrides that I had to deal with at, again, a time when you're just looking for some healthcare, you shouldn't have to be thrown all of these roadblocks and hurdles. You should just be a left alone to deal with that loss that you're feeling and going through. And so, I would say access to mifepristone is top of my list right now for things that I'm working on.

But then specifically here in Illinois, there's another bill that is being considered called the Illinois Fertility Fraud Act. And it's actually just to protect patients who are going through fertility treatments to make sure that no one is using anything other than the reproductive materials, sperms and eggs that are the patients' and the patients, if you're using donor sperm or donor eggs, it's what you expect.

So, you know, there's all different facets to reproductive health and I think that as more and more individuals turn to fertility treatments, we're really learning more about maybe gaps in the law and things that we need to do to make sure that patients are protected and that patients can access healthcare.

Host: Yes, you've clearly done your part. Stephanie, what can others who feel passionately about reproductive health and fertility care do to advocate for change?

Stephanie Vojas Taylor: I would say off the top of my head, there's probably three things that you can do. One, look at your insurance policy. And if your insurance policy doesn't cover fertility treatments, talk to your employer and ask for them, if not for you, for maybe a coworker that's going through it or a future coworker that you don't know, or a future you. Be proactive in that.

Number two, I'd say call your elected official and let them know how you feel on the issue of reproductive health and fertility treatments. I think far too often we think of reproductive health and we think of solely abortion, and we don't appreciate that there's this whole other side to it, that there are families wanting to grow their families and we just need to bring light to that side of it and to make sure that that is protected.

And then the last thing that I would suggest would be run for office. If you are listening out there and you care about and you feel passionately about reproductive health and fertility care, run for office. We need diverse views and experiences. And you can be that diverse view and that diverse experience.

Host: We've seen what power it's had just in the last week of news alone, and every week of news. So, thank you for that. Thank you for the encouragement. And, you know, I have a feeling a few people will run for office after listening to this podcast, and I can't wait for that to happen. Is there anything else you'd like to add to our conversation today?

Stephanie Vojas Taylor: Just be your own best advocate and hang in there. You can find me on the internet. I always have my email available if anybody has any questions or they want to get involved or if they just want to ask me more about my journey, I'm so open about it because I was so not open to talk about it at the beginning. And it is lonely. Infertility is a very, very lonely journey.

Host: Yeah. Yeah. Oh, well, thank you so, so much, Stephanie, for sharing your triumphant story. By the way, how did it end, your fertility journey?

Stephanie Vojas Taylor: My fertility journey had a very happy ending. I have two beautiful baby boys. One was born in May of 2020 and my youngest was born in September of 2021. And I can tell you that not a day goes by where you don't think about what you went through to get to that point. But it's beautiful and I just wish that everyone who wants to have a baby can have a baby.

Host: Aw. Blessings to you. Thank you so much, Stephanie, for sharing your story and even more for your advocacy around IVF protection. It's so important. We've loved having you on the podcast today.

Stephanie Vojas Taylor: Thank you so much for having me.

Host: That was Stephanie Vojas Taylor, an infertility patient, lawyer, and lobbyist, and you can schedule an appointment to talk to a fertility specialist at 877-324-4483 or visit fcionline.com for more info. And if you enjoyed this podcast, you can find more like it in our podcast library and be sure to give us a like and to follow if you do. This has been the Time to Talk Fertility podcast. I'm your host, Deborah Howell. Have yourself a terrific day.