Understanding Infertility Beyond the Clinic

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Annie John (Host): Welcome to Illuminating Health, the UCSF School of Nursing's podcast that sheds light on health and health care issues affecting our daily lives. My name is Annie John. I'm a current student in the BSN Entry to DNP pathway in the Family Nurse Practitioner specialty. And today I'm joined by UCSF School of Nursing Assistant Professor Erica Sedlander. Thank you for joining today's episode, Erica. 

Erica Sedlander (Guest): Thank you for having me. I'm happy to be here. 

Annie: Infertility affects millions of people around the world. In fact, estimates suggest that around 1 in 6 adults will experience infertility in their lifetime. But despite how common it is, significant gaps remain in what we know about fertility, when and why people seek care, and who ultimately has access to information and services they need. And infertility isn't only a medical issue. People's experiences can also be shaped by what they know and believe about fertility, by stigma and social expectations, by the health care available to them, and by policies that determine which research gets funded and which services people can access. Erica Sedlander is a social and behavioral scientist whose research examines these questions both globally and here in the United States. Her work asks us to look beyond the clinical treatment of infertility to understand the people experiencing it and what might help them achieve their reproductive goals. Today, we'll talk with Erica about what she's learning from that research, what studying infertility across different countries can teach us about reproductive health more broadly, and why she believes researchers have a role to play in bringing scientific evidence into conversations about health policy. So Erica, to start us off, can you tell us a little bit about your work? What drew you to reproductive health and eventually to infertility? 

Erica: Yes, I'm happy to. So I started my career in public health as a research assistant at UCSF in the Advancing New Standards in Reproductive Health Research Group. I was charged with working on a study about measuring abortion stigma and reproductive agency. I was just out of undergrad and I was asked to travel around the country to six different states and to interview women in family planning and abortion clinics about these topics. I was pretty intimidated. And so I spent my days, many, many days in these waiting rooms talking to women and hearing about their reproductive agency or really, to be honest, the lack of reproductive agency. I'll just share one anecdote. In one waiting or one family planning clinic, I asked a woman why she was there. And she told me she was living in a homeless shelter and that she was afraid she was going to be raped. And she was there at the family planning clinic to get contraception, to get on birth control, so that if she was to be raped, she wouldn't get pregnant. And at that moment, I just thought about how little agency she had in her life — living in this homeless shelter, afraid of what was going to happen to her. But she was taking a step to get on birth control, to take back some agency for herself. And at that moment, I vowed to work to ensure that women could have more agency in their reproductive lives and to work to ensure that women could reach their reproductive goals. And I have ever since I, after that, I went to UC Berkeley to pursue a master's in public health and then worked at NYU and then went to George Washington University or GW to get my doctorate in public health. And then after that, I came back to UCSF to work as an assistant professor. And all throughout it's been reproductive health. Those moments was kind of what brought me here, but I've continued through research, primarily qualitative, to hear women's stories. It continues to remind me that this is really important work that requires lifelong efforts. 

Annie: So it sounds like you came into infertility research somewhat unexpectedly through your earlier work in contraceptive use? What were you hearing that made you realize infertility was an issue that we needed to understand better? 

Erica: I came into this work through, like I told you, working on contraception, but also during my doctoral degree, I worked in global health and I worked in Kenya and Ethiopia on mixed method studies funded by the Gates Foundation to understand why women were not using contraception when they didn't want to get pregnant. What we found over and over again, both qualitatively and also when we were running the statistical models, was one of the main reasons why women were not using contraception, even though they didn't want to have a child at that time, was because they were afraid it would make them infertile later. And at the time, I over and over was thinking, you know, we're really putting all these resources into preventing pregnancy, which is very important. But there isn't a lot of work into what these women are saying they actually care about more, which is protecting their fertility. And from a reproductive justice perspective, women deserve to prevent, have a child if that's their intent, not to have a child or to parent their child in a safe environment. After hearing over and over again in interviews with women from Kenya and Ethiopia that infertility would lead to divorce or being kicked out of their house, to even some women saying that their in-laws would withhold food from them if they were infertile. I wanted to move into working in protecting fertility and preventing infertility, especially for some of the most vulnerable populations who don't have access to infertility treatment. And in this case, this misinformation was clearly causing a lot of harm to these women that could be more easily avoided if they had known the truth. 

Annie: When people hear "infertility," they may immediately think about fertility treatments like IVF. But your research starts much earlier than that. What are we missing when we think about infertility primarily as something to treat once someone is having difficulty getting pregnant? 

Erica: Yeah, so just like you said, when people think about infertility, especially in the U.S., oftentimes our minds jump directly to IVF or in vitro fertilization. How we can treat infertility, how we have access to IVF, access to services is really important, especially infertility or IVF because it's so expensive and it's not currently covered by all insurances or for Medicaid patients. But it's not the only piece of the puzzle. There's a lot of other factors that go into a disease like infertility. So some of them are just knowledge about the causes of infertility. Some of them are awareness around how we can protect our fertility. Some of them are social norms around talking about our own fertility with each other. And it kind of goes throughout the whole reproductive life course. You could think about earlier in the reproductive life course, for example, in schools, people learn about contraceptive use and preventing pregnancy from a very young age in the United States, but we don't learn about how our fertility declines and ways that we can protect our fertility. And that goes with both raising awareness around what we know about protecting fertility and also debunking misinformation. And both are just as important, but really are not part of our general education system from adolescence or at any point in the reproductive life course. 

Annie: So you study some of the social and behavioral factors surrounding infertility, including what people understand about fertility and the barriers that keep them from seeking care. So what are you learning from your research? 

Erica: So we just completed a study in Tanzania where we interviewed medical providers and men and women of reproductive age. What we found is there was a lot of misconceptions about the cause of infertility. For example, most participants felt that infertility was pretty much all caused by women, women's factors. But in fact, men contribute to almost half of the known causes. We also wanted to understand what the barriers were to seeking diagnostic care, so really basic care like blood tests, semen analysis, imaging that aren't extremely, that aren't very expensive initial tests. And we found that a lot of men and women preferred traditional healers rather than medical providers because they thought that it would be more effective. Understanding these really kind of basic barriers around knowledge and normative assumptions around who and what caused infertility is an upstream barrier because even if there were infertility services, if people didn't know, if men didn't feel comfortable with, for example, getting a semen analysis or know that they should, they didn't even believe that medical care would help them and that taking traditional herbs would, then having those services is not enough. And so what we're really finding, both in the study in Tanzania and then also in another study I did in Kenya, is that there's just a lot of a huge lack of awareness around our own fertility, around causes, and those are sometimes deeply entrenched in inequitable gender norms. And really from a reproductive justice framework, people deserve to know why they're not able to have children. Having a child is a fundamental human experience. And so what we're learning is that there are some relatively low-hanging fruit that we could address to ensure that people do seek more basic interventions. We're not talking about IVF, but more basic interventions in places like Sub-Saharan Africa so they don't have to experience some of the ramifications that I spoke about in our work. 

Annie: So you've conducted research globally in places like Tanzania and Kenya, and you're expanding this work here in the U.S. What have you learned from studying infertility across different countries? 

Erica: The most important or the most intriguing point is that there are a lot of similarities. Oftentimes we think of emerging economies and developed countries as vastly different, but when it comes to infertility knowledge and practices, they are more similar than you'd think. So for example, I'm studying some populations that are at higher risk for infertility. So people with metabolic conditions like obesity, type 2 diabetes, hypertension, and also other chronic conditions like HIV, they have higher rates of infertility, just to give you some background. We interviewed providers both in Kenya and then now also in the U.S. to understand what those providers knew about how these chronic and metabolic conditions affected their patient's ability to get pregnant. And I guess not surprisingly, we found that they didn't, that they sometimes lacked knowledge around how the specific condition would affect their patient's ability to get pregnant. And they often assumed that, you know, the gynecologist would address this or talk about it. And we found that both in Kenya and in the U.S. What I'm seeing is that some of what we've learned in Africa really applies to the U.S. and that there are similar gaps in knowledge and in patient-to-provider communication about how higher-risk populations could potentially change their current lifestyle to improve their fertility later on. 

Annie: So we've talked about gaps in knowledge and barriers to accessing care, but addressing some of the challenges around infertility requires institutional-level approaches. Can you tell us about your current proposals in this area? 

Erica: Sure. As we talked about, there's a lot that needs to be done around infertility. It's one of the most underdeveloped areas of women's health right now. There's a lot of research on IVF and kind of the medical side, but there's not a lot on the social science side. And that's where I'm focusing my efforts. So right now I'm developing a proposal and the idea is to integrate fertility counseling into primary care for women who are at higher risk for infertility. My idea is pretty simple. For some women who want to have a child later, if they knew that their behavior now could improve their chances of getting pregnant later, they might change their behavior. So I'll give you a specific example. So if someone with diabetes, for example, if they manage their diabetes well, meaning they adhere to their medications and ensure that their insulin levels don't go up, their chances of getting pregnant later would improve. Having high insulin levels is not good for pregnancy, and it's the same for a lot of other metabolic conditions. So managing it earlier in the reproductive life course can help women get pregnant later. And so this is, as I mentioned, really lacking in primary care or for even specialist providers who are treating women with diabetes, obesity, HIV, hypertension. The idea is that they incorporate these kind of very simple messages into their visits. And my hypothesis is that women who want to have a child later might change their behavior and, for example, adhere to their medication better to help them have a child later. 

Annie: So researchers like you can identify these problems and publish evidence about them. But publishing a study doesn't necessarily mean something actually changes. When did you start thinking more seriously about what happens after research is published? 

Erica: I've been thinking about that for a long time, but I was particularly fired up this last year and a half, I suppose, and wanted to make sure that my work had an impact. And I will say publishing in academic journals is important and that's still the primary outlet where my work goes. But I wanted to expand the audience and make sure that it's reaching other parties. So for example, policymakers, students, back to the communities where I've worked and not just in a kind of perfunctory way, but in an intentional way. And so that's where I've been focusing my efforts for the last year, really in these non-traditional academic outlets. And it's been really rewarding, I'll say. So for example, I'm doing policy advocacy on the Hill. I'm teaching a health policy course. I got a small grant to disseminate my research findings from the study in Kenya back to key stakeholders. We hosted our own meeting in Nairobi, Kenya with some really influential stakeholders. 

Annie: Definitely. So you very recently participated in UCSF's Science and Healthcare Advocates for Research Policy or "SHARP" program, a professional development program for UCSF faculty to develop science policy and advocacy skills. As part of the program, you traveled to Washington, D.C., as you said, and met with policymakers. What was that experience like for you as a scientist? 

Erica: That experience was really fun. I'll say it was a little bit daunting in the beginning and I nervous and getting sweaty palms before I had to go speak to staffers and members on the Hill. But I like to continue to grow and stretch. And so it was a good experience. And that was the first day. And we went several days. I mean, also as a scientist, we don't get training in communicating our science to different audiences. And so we oftentimes default to jargon. It helped me to improve the way I talk about my science to different audiences, but two, it also gave me a really different perspective into funding on a national level, also from the NIH level. We also advocated NIH for more NIH research funding for reproductive health specifically. So I just felt like rather than having this kind of narrow perspective about what my research is, it really opened up my eyes to the whole how my research is really just, one part of this bigger mechanism that requires, federal funding, requires NIH support. And I learned a lot about kind of the niche nuts and bolts of how this works and the importance of narrative and understanding your audience. 

Annie: As we close our time together, I'm curious, what is giving you hope about the future of infertility research and care? 

Erica: So infertility is a bipartisan issue and there's a lot more discussion about it now than there was even five or 10 years ago. We're changing how we think about women's health and really destigmatizing a lot of issues. Infertility is one of them, menopause is another. We're really bringing to light something that many women and people deal with both in the U.S. and globally. And that's really important so that people don't suffer in silence and that people, funders realize that the prevalence of infertility, like you mentioned in the beginning, 1 in 6 people experience infertility in their life. That's a lot of people. So probably someone you know, lots of people I know have experienced infertility. And that means that there will be more, there are more people advocating for making sure that people who are experiencing it get the right care and that it's covered. And that is great. What I would push for, which I haven't seen, is that we think earlier on the reproductive life course and really think about raising awareness about our bodies from an early age. For example, endometriosis is getting a lot more attention. If people understood that having irregular, extremely heavy periods, painful periods earlier on in their reproductive life course, if they knew that could be a sign of endometriosis, which can cause infertility, they could address that earlier rather than waiting and suffering their whole lives. So general awareness around women's health and the lack of funding, I'm optimistic about, but I press us to think about it not just in access to treatment, but in a public health perspective, right? So public health, the core of public health is prevention and awareness, not expensive treatment. That's where people are already suffering physically and emotionally. That's very important, too. From a public health perspective, we should be thinking earlier in the reproductive life course. 

Annie: Like you said, that sounds amazing, especially because around infertility you mostly hear the medical side of it, like treatments and things like that, but very little about the social aspects or even cultural aspects. So your research in Africa and everything that you've done here sheds a lot of light on those topics that aren't quite talked about as much. So thank you, Erica, for joining us on this episode of Illuminating Health. 

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Erica: Thank you for having me. 

Annie: And thank you to our listeners. We look forward to connecting with you next time. 

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