It’s Time to Talk About Infertility

Infertility is estimated to impact 10 to 15 percent of couples in the United States, making it the most common disease of people between the ages of 20 and 45. Frankie Robertson, with the National Birth Equity Collaborative and the Amandla Group, takes time to talk to us about the intricacies of infertility and why we need to look at it as a reproductive justice issue.

The World Health Organization (WHO) defines infertility as “a disease of the…reproductive system defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse.” Infertility impacts millions of people on a global scale, as well their families and communities. Stigma around infertility is rife; birthing people often feel as if they have ‘failed’ in some way, because society imposes the perceived value of childbirth so intensely. Women and birthing people can also feel shame, embarrassment, and lack of privacy. Much of this stigma can tie in directly with sensitive topics such as one’s marital status, sexual orientation and gender identity, and more.

Infertility is a reproductive justice issue. As previously mentioned, infertility can be impacted by race, gender, class, and sexual orientation. Studies suggest that Black women and birthing people may be twice as likely to struggle with infertility as white women, and Black women are far less likely to seek or receive infertility treatment, especially because infertility treatment services have largely been afforded to white birthing people with financial means. Black women have reported uncomfortable interactions with their physicians due to assumptions made about ability to pay for services, sexual promiscuity, and weight, pointing to much shaming and bias. Black women are also largely underrepresented in infertility research studies.

The American Society for Reproductive Medicine has released a set of policy recommendations. These include lobbying for increased insurance coverage of infertility issues, having clinics offer free services to low income couples, enrolling more women of color in infertility studies, and diversifying the infertility workforce to include more physicians, nurses, and lab employees that are people of color. On a more individual level, re-think asking invasive questions to people about their reproductive health, reproductive future, or birthing plan.

Links from this episode

National Birth Equity Collaborative
The Amandla Group
WHO information on infertility
American Society for Reproductive Medicine

Transcript

Jennie: Welcome to RePROs Fight Back, a podcast where we explore all things reproductive health, rights and justice. I'm your host, Jennie Wetter, and I'll be helping you stay informed around issues like birth control, abortion, sex education and LGBTQ issues and much, much more-- giving you the tools you need to take action and fight back. Okay, let's dive in.

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Jennie: Welcome to this week's episode of RePROs Fight Back. I'm your host, Jennie Wetter, and my preferred pronouns are she/her. So I hope everybody had a wonderful Thanksgiving. I didn't travel as I think I've talked about on here before my family is all in Wisconsin. So I wasn't about to travel home and put anybody's health at risk. So I stayed here, which is fine. I don't always go home on Thanksgiving because it's, I mean, it's not that far to travel, but it's such a short turnaround that it's not particularly always worth it, but it's sad. Like I always love being home and having my mom's cooking, but I ordered takeout from a little place across the street from me, had Thanksgiving dinner that you could order and pick up on Wednesday and then just stuck it in the oven on Thursday. So I did that and that was delightful. I think I'll probably do the same thing for Christmas. The one thing that I always miss, and I miss this when I can't go home for Thanksgiving usually…so I think I've talked about this before…my mom is one of 11 children, so I have a big side of the family on that side. So we don't do like a huge family Thanksgiving. Our big holiday on that side is we all get together on Christmas Eve. But the Saturday after Thanksgiving, the aunts, and a lot of the cousins, particularly the girl cousins, all get together and we make cookies and do Christmas cookies. And yo, when I tell you, there are just thousands and thousands and thousands of cookies made that day, it's amazing and delightful and so much fun. And we all get together and make so many different kinds of cookies, like dozens of different kinds. And then we just split them all up and everybody takes them home. And then you have a huge variety of holiday cookies and it's so much fun and it's great to be with everybody. And I always miss that. That's what I particularly miss. When I can't go home for Thanksgiving, Mom will usually make the rest of the food when I go home over for the Christmas holiday, cause they'll tend to go home for at least a week so I can make up on missing all the Thanksgiving food later. But the cookie baking day is always hard to miss out on. And this year it's happening for obvious reasons. Everybody's in Wisconsin and things are not good in Wisconsin right now. So it's sad to know that that's not happening this year. So no cookies for me. That's okay. I'll probably bake some maybe by the time y'all are listening to this. Cause I'm recording this on the Friday after Thanksgiving. Maybe I'll make some this weekend, nowhere near as many. I am not that ambitious, but maybe a batch or two. We'll see. It's just, that's the holiday thing I think of when I think of Thanksgiving is the big cookie day. So that was how my holiday went.

Jennie: I didn't do this before Thanksgiving because y'all, Thanksgiving snuck up on me. I had no idea that when our last episode came out, that it was the episode before Thanksgiving. So I didn't do any of the like I'm grateful for ‘this’. So I'm grateful for all of y'all. I really appreciate you taking your time and listening to the podcast or reading the transcripts or however you take in our podcasts. I am just so grateful for all of you who are involved. Thank you for listening and being involved. We wouldn't exist if it weren't for y'all and this year I'm just feeling particularly thankful for family, especially since they're so far away and I don't get to see them. And I don't know when I'll get to see them. So feeling grateful for them and being in good health right now and for all my wonderful friends and colleagues that I get to work with this year, I'm just feeling particularly grateful for all the things I have and thankful for the cats this year, especially being locked down by myself during quarantine and not having anybody else here. The cats have really made a difference of having people here. So thankful for Cinder and Luna getting me through this long year. And with that, I think it will turn to this week's episode. I was really excited for this week's episode. It was a special request that I had on Twitter. And I am going to be a terrible, terrible person and say, I am not sure I remember everybody who asked, but I think it was Lucia and Leanna who both asked for it. So sorry, I missed you. But the two of them asked for me to do an episode on infertility and I have to admit, this is not something I spend a lot of time on. So it is a giant hole in my knowledge. So I was really grateful that they asked for us to do this episode and that I was able to get somebody to come on and do this. So for this week's episode, I talked to Frankie Robertson who is with the National Birth Equity Collaborative, all about infertility and why infertility is a reproductive justice issue. It was a wonderful conversation and I hope you all enjoy it.

Jennie: Hi Frankie. Thank you so much for being here.

Frankie: Hi Jennie. Good morning. Thank you for having me.

Jennie: Before we get started. Do you want to take a quick second and introduce yourself, including with your pronouns?

Frankie: Sure. My pronouns are she/her/hers and I am with National Birth Equity Collaborative. I also am president and founder of the Amandla Group. It is a social justice consulting firm based out of Baton Rouge, Louisiana.

Jennie: Really excited to have this conversation today. I have to admit infertility is a giant black hole in my knowledge. I know some people who've had it, but other than that, my knowledge isn't super deep and I don't think that's super uncommon.

Frankie: No, and infertility is not really uncommon. So let me just define so that we all have working knowledge on what we're talking about when we talk about infertility. So the World Health Organization defines infertility as a “disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse. Now for women who are 35 and older, the inability you can see after six months is actually generally considered infertility. So it's estimated that infertility affects 10 to 15% of couples, making it the most common diseases for people between the ages of 20 and 45. Now, many people know that the longer a woman to tries to get pregnant without conceiving the lower her chances are to get pregnant without medical treatment. But studies suggest that Black women may be twice as likely as white women to have fertility problems, but we're far less likely to seek or receive infertility treatment.

Jennie: I have to say in some ways that's really surprising because I didn't know that, but another way is obviously the health disparities that exist in every other place. Of course, they're showing up and infertility as well.

Frankie: Absolutely. I mean, thankfully in the past few years there's been a lot of talk about health inequities and particularly how it impacts Black birthing people. So unfortunately there is no surprise here to see that infertility access to treatment education around it, who is fortunate enough to have proper access to fertility treatments and who isn't is any different than any other medical resource afforded or not afforded to minority populations, particularly the Black community, Black women, Black birthing people. So, unfortunately there's not much different here in terms of the injustices.

Jennie: Once again, with our healthcare system and the value that's placed on Black lives, we're going to dig deeper into infertility as a reproductive justice issue. But I think one other thing to touch on before we get there is think infertility is still one of those things that there's a bit of stigma around. Like people don't talk about it. And I know that's kind of true around reproductive health in general, right? People are starting more to talk about abortions, but there's also not a lot of discussion around infertility or miscarriage or even menstruation. So it's just like this air of stigma that floats around these topics.

Frankie: Absolutely is you're so right about that, Jennie, particularly around infertility, there are a multitude of issues related to the stigma of infertility. One of the common issues for birthing people is a feeling of failure. So many people in society are often questioning people about why don't you have kids? When are you going to have a baby? And imposing their own values and beliefs on other people. And you never know what type of struggle a person is going through. They may be infertile and that's why they haven't been able to have a baby. And when you're constantly bombarded with these questions, that people are totally invading your personal space and your privacy, some of these things just become shrouded in disappointment. And for some people embarrassment and just not really able to talk about things that haven't been widely discussed and particularly in the Black community, the sense of we talk about keeping your business private, and then also in the church, sometimes people will say, “well, maybe it's not in God's plan.” So there's a lot of things that just really feel stigmatized about. And I think one of the most common things is that sense of failure. That expectation that pregnancy is supposed to happen very smoothly for all people and that successful pregnancy…seeing a pregnancy to term people not realizing the rate of miscarriages and issues like that, that people are faced with because people have not talked about it. So there's definitely a lot of stigma around infertility and the expectations that society has for people.

Jennie: Yeah. I think the expectations one is a big and they feed on each other as soon as people get married. And there's the expectation, right? That it's going to be a man marrying a woman. So there's the LGBTQ stigma that people still kind of have to deal with. There's the expectation that one you're going to have kids. And then two that they're going to start asking as soon as you're married, because they assume you will be married. If you're going to have kids that, then those questions start happening regularly. “When are you going to have a baby?” It just feeds on itself.

Frankie: It does. And you mentioned those scenarios. And then of course, there's a scenario you mentioned a few times about when people are married and people are constantly asking about when they're going to have a baby. I am married and I have those questions. So many times my husband and I were seven years into our marriage before we decided the timing was good for us to have a baby. And it just from the day of the wedding we were at, “when are you going to have a baby?” And just lots of intrusive, invasive questions that I know we're not alone because I hear my friends talk about it all the time. And I read about it. I know it's a reality, but yeah, just a lot of folks who feel like they have the right to question person's uterus or what you want and what you don't want and when this should happen. But then also like you mentioned again, married couples, but what about couples who aren't married that are facing infertility or single people who want to have a baby? It's not just determined whether or not you are in a marriage to determine that you want to have a baby. So just looking at that from all options of who has the right to overcome their infertility challenges and who doesn't and what does that look like? And what's supposed to be the status quo in terms of being able to access fertility treatments, if you need them.

Jennie: Yeah. And I think that leads perfectly into infertility as a reproductive justice issue. I think this might not be something that people think of right away, and you've already touched on how it disproportionately impacts Black birthing people. But do you maybe want to dig a little deeper into why infertility is a reproductive justice issue?

Frankie: Oh, absolutely. And I'm so excited about this topic because infertility is absolutely a reproductive issue. And as there's been a lot of focus on inequities, as I mentioned before within the healthcare system, the issue of infertility and who it impacts the most and who is afforded treatment is not different than the myriad of issues that we're tackling to achieve health equity and infertility is impacted by racism, gender, sexual orientation, as you mentioned in classism. And as I mentioned before, the study suggests that Black women may be twice as likely as white women to have fertility problems, but we're far less likely to seek or receive infertility treatment. And it's no secret that infertility services have most heavily been afforded to and focused on white women with financial means. But we have to ask ourselves who has the right to determine which groups of people are worthy to know about and access all options needed to fulfill their desires of having a baby. Are we saying that, which I think we are, or that Black women and Black poor women and those without financial means or same sex couples or non-gender conforming individuals, unmarried birthing persons deserve less options to address infertility issues based upon these disparities? That's what we're saying. So as for racism impacting fertility, Black women have reported that their physicians have made them uncomfortable by making assumptions about our ability to pay, sexual promiscuity, and weight. And there's a lot of shaming and explicit bias that goes on that, of course we've already know about in terms of Black birthing people and for something like this issue of infertility, it's no different. So, as I mentioned, although despite the fact that Black women are twice as likely to be impacted by infertility, we are also underrepresented in fertility research and study. So just across the board, in terms of access, what our doctors are talking to us about to overcome infertility treatments, what types of options we have, the access that we have via insurance, how we feel when we do seek treatment and the value that's being placed on our efforts to try to conceive a child is just not the same as it is afforded to white women who are seeking the same types of hopes and desires to overcome their fertility treatments, but they have financial means. And just the benefit of the medical community, supporting their efforts and valuing lives as opposed to Black birthing person.

Jennie: Yeah. Again, this is another area where you're seeing those overlapping spheres of oppression, right? You're seeing Black women or Black birthing people are more likely to be infertile, but they're probably also less likely to have the resources to afford it because they're much more likely to be low income and [their] insurance often doesn't pay for it. So it's really expensive. And you just see the top of each other, making it harder for the people who are more likely to be experiencing infertility to then be able to access services.

Frankie: Absolutely. And you definitely made some great points. The systems of oppression are definitely interlocking and they run deep. The systemic inequalities. There it's just layer after layer, after layer, whether it's access issues, health insurance, economic needs, all of these things are deeply rooted in racism and classism and the social structures that have been set up that have been designed to not benefit Black people. So of course, all of this is compounding issues like this for Black women or Black birthing people to have equal opportunities to overcome infertility challenges. As again, our white counterpart, you mentioned a few times about poverty. So even Black women of varying socioeconomic status could be faced with implicit bias, have the financial means to be able to afford treatment, but the education has to be there in terms of what physicians are providing for them. Have they been referred to a reproductive endocrinology, have all of the stops been taken to make sure that this person understands what treatments are available, understands the avenues to be able to access various things that can help them overcome the infertility treatment. But first that person has to be valued as a person to be able to provide this knowledge to them. And unfortunately we understand the history of our medical system and how Black women have developed this trust for just the medical establishment because of the injustices as well that we've been faced with over the years from of course, what many of us have come to know about just the history of Dr. Sims performing medical experiments without anesthesia on enslaved African women, looking at things like the Tuskegee experiments for sterilization. So there's so much distrust as well. So it's just really compounded by so many things Jennie.

Jennie: This actually leads back to when we talked about stigma, right? If people aren't talking about how they're experiencing infertility than other people might not even hear about options that exist, especially if their doctor isn't telling them about it. So you're just kind of crafting this environment where people aren't aware of alternatives.

Frankie: Absolutely. It starts with education too, just making sure that this information is equally accessible to all groups of people, making sure that we are targeting. If Black women are twice as likely to suffer from infertility, shouldn't there be aggressive outreach to the Black community. If there's value in trying to help Black women or Black birthing people be able to overcome their infertility challenges, those types of actions have to mirror what's happening to us statistically. And also if there are desires to assist Black birthing people in overcoming infertility, shouldn't we be included more aggressively in studies to overcome infertility? All of those things have to happen. If you truly want to address this issue or allow it just to be something that the status quo benefits from.

Jennie: It makes me think of talking about sex education. Sex education at the doctor's office, sex education to the community [is most impactful], but it also just makes me think how much of sex education, when it's offered, is just focused around, “don't get pregnant” and doesn't get into any of the broader issues that people may need to deal with later in life.

Frankie: And then also education, Jennie, around removing the stigma. So there's been development of toolkits by different organizations that address removing the stigma in terms of mental health illness, around HIV, around classism, but how much education is being conducted. What is being done to create a level of awareness, to remove the stigma, to address the stigma associated with infertility issues. So there's a lot that could be done there as well. And like I mentioned in targeting that to minority populations, particularly Black birthing people, because we are twice as likely to be faced with infertility challenges. So all of that, all of that in its totality is very important.

Jennie: So I think that leads us. We've already kind of started to have this conversation of solutions. So what are some of the things we need to do to address this?

Frankie: Sure. So the American Society for Reproductive Medicine task force released a set of policy recommendations or recommendations in general to address this very issue. So among them, just a few of the items that were highlighted were lobbying for increased insurance coverage for infertility issues and having clinics offer some free services to low-income couples, doing things like enrolling. As I mentioned before, more women of color in infertility studies and then diversifying the infertility workforce so that it includes more physicians, nurses, and lab employees who are people of color. And even with that, the latter, that I mentioned that goes a long way in addressing issues of implicit bias and how Black birthing people are received when they do answer into these environments to seek treatment or some sort of support to overcome infertility issues. And then again, of course the education piece is very, very, very important and then removing the stigma. But then also as a society, we were talking earlier about just people being intrusive and invasive people's personal space, just not overstepping and asking questions that aren't necessarily a right for you to know about when someone is going to have a baby, why someone hasn't had a baby and those types of things that make for very uncomfortable situations for people who are experiencing infertility, but are not wanting to share that information publicly. And that's their right to not have to do that.

Jennie: Yeah. It makes me think about mind your business!

Franke: Stay in your lane! Definitely things like that. Maybe make people less likely to want to tell you, right? So it creates an environment that fosters the stigma. I would absolutely say normalize it. And if I could say something to listeners, as far as what we can do specifically, I would say normalize it, normalize conversations around infertility, support advocacy efforts of organizations that are addressing infertility issues, especially those that are addressing infertility issues as a reproductive justice issue. And again, staying in your lane, normalizing these conversations, I'm self-educating on issues around infertility and being advocates, policy advocates to overcome, to overcome the access issue and make sure that infertility treatments are not something reserved for the economically elite or the social elite. This is something that is right for everyone and not determined based upon ability to pay. Just looking at classism. Everyone has the right to be able to access treatments if they're having an infertility issue and want to have a baby, not just when they meet some level of financial stability or if the heterosexual couple only a married couple. So the ability to access services needed to overcome infertility should not be reserved for the wealthy for predominantly, for white women, for people who were married for people who were in heterosexual relationships, for people who society themes are worthy to be able to overcome their infertility issues. So this is something that definitely has to be addressed to make sure that being able to overcome issues or fertility and to be able to access treatment and services necessary to overcome infertility, being able to overcome infertility issues should not be something that is reserved for white women of economic means; individuals who are lower income status, who are Black birthing people who are not same sex couples who are unmarried, should be able to access the same services and treatments as people who are married as white women who have financial needs, and it should not be something was there for what people determined is the status quo.

Jennie: Absolutely. So often in fertility, treatments are not covered by insurance. So it really is left to the people who can afford it.

Frankie: Exactly. And the cost of infertility treatments can vary. On average, we're looking at about 10 to $20,000 for certain types of infertility treatments and absolutely right. The fact that all states don't offer services for infertility treatment, it definitely is basically making it not accessible for people who need it the most. And again, we're looking at racism and we're looking at classism and in terms of who is able to access treatment and who is not individuals who are uninsured, individuals who have policies that will not afford coverage for infertility treatment. So again, we're going back to racism and we're going back to classes and in terms of who has access and who is not. And we know that looking at access to care, access to insurance who has insurance, who does not, we're still just going in the same boat and just dealing with this issue where the same people are being compounded over and over and over again and being impacted.

Jennie: So that's all very important and it feels so heavy just how the same people are always the most impacted. It's just so frustrating and rage inducing. And I'm sure many listeners like me want to do something. So what can they do? What can people who are listening to the podcast or reading the transcript of the podcast, what can they do?

Frankie: Well, as I mentioned before, being engaged in advocacy efforts. So if listeners are able to contribute to organizations who are doing this work, obviously that goes a long way. Being able to use your voice, putting pressure on policymakers who have the ability to make sure that insurance coverage is accessible for populations who are not receiving these types of services. Also just speaking again, speaking about the issue, normalizing it, educating people on infertility, elevating, and centering Black birthing people, and then people of color to be able to share stories and believing us when we share these stories about experiences of bias in the medical profession, about inability to have accents without experiences. When you go into fertility treatments and it's not designed to cater to you that you may go into a facility for treatment and no one there looks like you, the photos on the wall don't look like you just advocating for equity in this space, because it does impact Black women at double the rate. So just being better advocates for Black birth and, and censoring our voices throughout all of this, but I can't stress enough the advocacy piece, but then also advocating for equity and research. That's very important looking at what types of funding are available for what types of studies and who are a part of those studies. Each of us can take a look at what our sphere of influence is and be active advocates to basically use that power, wherever that power is. So there's something that each of us can do, whether it's advocacy, whether it's leaning on organizations that provide funding and applying the pressure to make sure there's certain types of studies that should happen. So there's something that each of us can do. But I do think that supporting financially organizations that are doing this work obviously goes a very, very long way.

Jennie: Well, Frankie, thank you so much for being here today. I really enjoyed talking about something I don't know a ton about with you today.

Frankie: Absolutely. Jennie, thank you so much. I appreciate the opportunity to come speak with you today. And I'm looking forward to continuing this conversation and continuing to shed more light on infertility and the inequities that exist within this issue.

Jennie: Thanks for listening everyone. And we'll see you on our next episode of RePROS Fight Back. For more information, including show notes from this episode and previous episodes, please visit our website at reprosfightback.com. You can also find us on Facebook and Twitter at RePROS Fight Back, or on Instagram at reprosfb. If you like our show, please help others find it by sharing it with your friends and subscribing, rating and reviewing us on iTunes. Thanks for listening.

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