Silent No More: The Hidden Voices behind Reproductive Justice

October 21, 2020

By Guest Blogger, former VCW intern Ana Cimino Burke

Advancing public policy grounded in equity and justice is a passion of Ana’s. She has taken this passion and using her infertility journey as a backdrop, penned this piece, using the keypad to hold space for folks who want to share their stories and list what support resources exist because affordable, safe, and quality fertility care IS an economic, racial, and reproductive justice issue.

*To honor the confidentiality of interviewees who wished to remain anonymous, I wove their voice into the article or, in two instances, changed their names to Samuel and Jane.

After a year of struggling to conceive, I sought help from a fertility specialist in 2019. I discovered that I have a unicornuate uterus (half of a uterus with one functioning fallopian tube). In short, this rare condition makes it difficult to conceive and carry a baby to term. Warning: the google trap will steer you down a hole littered with frightening statistics. Proceed with caution or avoid it altogether. I had surgery in October 2019 to remove the nonfunctioning fallopian tube and to make sure the other was not blocked. I remember waking up from surgery and through the fog muttered one word, “IVF?” My doctor knew what I meant. I was asking whether my remaining tube was blocked, which, if it was, my only option would be In Vitro Fertilization [IVF]. IVF is cost prohibitive and more invasive than Intrauterine Insemination [IUI]. She told me, “no IVF.” Fast forward through three failed IUIs between January and June 2020 [we skipped, of course, April and May because of COVID-19]. Our doctor encouraged us not to give up on IUI, so we are trying IUI number four this month.

When I try to explain what infertility means to me, the feeling that most often presents itself is shame – shame and I are well acquainted, but that’s another story for another time. I want to dismantle the socially constructed expectations of family and womxn that perpetuate this shame, but I also want to validate that for so many struggling with infertility, shame is the common thread that holds us together. Compounding my shame is the growing financial burden, grief, and my silent suffering – in 2019 I fell into a deep, I mean deep, depression. I found myself wanting to shield others from feeling like they were going to “say the wrong thing” if we mentioned it. I did not want them to feel guilty for how quickly they became pregnant for the first or second time. But also, I did not want to hear their opinion on whether or not I should jump to – without knowing our financial situation - IVF or adoption. So, I only spoke about it with a few people, and similar to the way I cope with other traumatic events in my life, I quickly hid my pain behind a smile and witty quip.

The pandemic has stirred some additional feelings of anxiety and immense guilt – guilt because I am obsessed with conceiving while the world is figuratively and literally on fire. Although I am grateful to access a safety net by phone or web, I am missing the comfort of my partner’s presence during my procedures. At my clinic, partners are not allowed in the room during check-ups or IUI procedures under COVID-19, which I appreciate as it is necessary to maintain public health, but each time I visit the doctor, I am alone. I know there are so many who have experienced this feeling for a variety of reasons.

I now find it cathartic to share my story because fertility treatment robs you of a feeling of calmness and control. But I recognize that, as a white, heterosexual, cis-woman with access to medical care and decent insurance, how disparate the experience is for persons who identify as BIPOC and/or LGBTQ+ or non-binary, especially when discrimination and racism permeate our institutional and social structures. Consequently, I decided to use the pen – er, keypad - to hold space for folks who want to share their stories and list what support resources exist because affordable, safe, & quality fertility care IS a reproductive, economic & racial justice issue. When we care for and invest in every member of our community and their needs, we participate in collective community care and build a world in which everyone thrives.

I began my research by digging into various articles online and then posting on social media to elicit stories from those who wanted to come forward – anonymous or otherwise. I framed the topic around the impact of infertility, socially constructed expectations on family planning, and the barriers to accessing affordable, safe & quality fertility healthcare. I received several messages and a few from folks who wished to answer these questions in addition to a few more that I drafted.

Although most diagnostic care is covered by insurance, treatment is not. And if you do not have insurance or the one you do have is lackluster, the financial barrier to reproductive healthcare is heavy. According to an article written by Jessica Grose in the New York Times, IVF remains an untenable financial barrier to family planning. Specifically, Grose notes, “in the United States the average cost per cycle of I.V.F. is over $10,000, and most infertile couples pay that fully out of pocket, as fertility treatment is not a benefit health insurance tends to cover.”[1] To me, this kind of treatment is designed for the wealthy – who, more often than not, as a result of systemic racism and discrimination – are white, heterosexual, and cisgender.

Samuel*, who identifies as a person of color, heterosexual, and cis-man, shared that after a little over three years of trying to conceive, his family decided to try IVF treatment. Although costly, his partner and he made the choice because they are both sickle cell trait carriers and the general testing associated with IVF also screens for sickle cell. Samuel and his partner went through two rounds of IVF, the second producing a viable embryo that attached. However, it was not without heartache. They originally had 33 eggs, but only had only one viable embryo. Devastated and exhausted, they carried on like so many before them. The last embryo attached and seven days after their fifth wedding anniversary his partner gave birth to a healthy baby. But this all came at a cost. At the time, they did not have comprehensive insurance and he could not use his partner’s insurance for his diagnostic care, so they paid for both out of pocket. In order to do so, they took out a home equity line of credit, used money from a retirement account, paid for some charges using a credit card, and received financial assistance from family. Samuel and his partner are not alone. Thousands of individuals and families are forced into substantial debt to cover the exorbitant costs of fertility care and treatment. Samuel told me that the total cost of all the fertility treatments including both IVF procedures and genetic testing was approximately $42,000 and three years later, they are still paying off some of the debt. But he remarked that even with the heartache and financial setbacks, he would do it again to have his daughter.

Jane* who identifies as a queer, white cis-woman, did not know where to begin and what the first steps would be – should they try at home first or seek fertility treatment right away? They started with IUI, but relied on an anonymous sperm donor. Jane remarked at the surprising expense of a sperm donation – an expense most cis-hetero couples do not have to face - and there are not a lot of accessible sperm banks in New England. They ultimately used one in Boston after learning about a longstanding partnership with the University of Vermont which benefited them a 40% discount on the cost of the donations. But not everyone knows about this partnership so it would be helpful for individuals and families to have as much digestible information about the costs associated with fertility treatment before making these decisions. For many, the automatic expense of sperm donation, IUI procedure, or other fertility care is an untenable barrier to creating a family.

In my research, I came across an article describing a fertility equality movement which is grounded in the idea that creating families should not be determined by financial status, sexuality, gender, or biology.[2] This viewpoint disrupts the heteronormative view of fertility and family planning. Although some states do mandate insurance coverage there is more red tape that often precludes people – especially LGBTQ+ families or individuals – from accessing coverage. This movement is to ensure affordable coverage for everyone and to dismantle the additional legal or social barriers experienced by LGBTQ+ couples and individuals who want to start a family. Mario Leigh, the founder of Affordable Families, a Connecticut based advocacy organization, is partnering with Representative Liz Linhan to draft a bill with inclusive language and more affordable, robust insurance coverage.

Institutional & Social Barriers

According to Women’s Health Magazine, who, in partnership with the Black Women’s Health Imperative, conducted a survey among 1,000 women of multiple races, found that “black women were more than twice as likely as white women to say that they wouldn’t feel comfortable talking about their fertility issues with friends, family, a partner, their doctor, or even a support group.”[3] The article then explains that for many, this stems from “a distrust of the medical system” originating from oppressive care and racial discrimination.[4] We have heard the narrative and seen the statistics, BIPOC women are at a higher risk for maternal mortality than white women because of a lack of access to comprehensive care and education about reproductive health – both of which are inextricably linked to systemic racism.[5] Samuel* found that in addition to the financial impact, there is a lack of awareness and education in his community around reproductive health for people who identify as male. He shared that in his family it is expected to have children and a lot of them. So much so that during each joyful gatherings with family, conversations centered on when he and his partner would have children, but not on reproductive health or fertility risks. He also shared that when they did not conceive right away, the assumption was that his partner, a cis-woman, was to blame – either she did not want kids or was infertile. It wasn’t until he sought fertility treatment that he learned he has oligospermia (low sperm count), varicocele, and testicular microlithiasis (a possible risk factor for testicular cancer). His partner is fertile. He did not like that his wife was taking the blame for something that was not her fault, but that people assumed she was to blame – I would like to emphasize that infertility is no one’s fault. Because of his experience, he wants to demystify the shame that men might feel when seeking sperm analysis or diagnostic care and encourages prioritization of their reproductive health. And to remind them of their role in this journey, too, and that the testing, research, and stress should not fall on one partner – regardless of their fertility – because you’re a team.

Additionally, BIPOC or LGBTQ+ folks generally do not see themselves reflected in mainstream advocacy efforts or educational materials. In response, leaders like Regina Townsend, who started The Broken Brown Egg, are creating organizations and groups to increase representation, education, and discussion. On her website, she remarks, “infertility is lonely enough without feeling like a minority inside of a minority.”[6] In my conversation with Jane* she stressed how mainstream messaging is geared towards cis-hetero individuals and is often paralleled by exclusionary insurance and a medical system that uses language such as “natural conception” or assumes that the more feminine presenting person in a couple will be the gestational carrier. The unintended consequence is an invalidation of a person or couple’s family planning process. She added that this mirrors the messaging she received as a teen. I, as well as several others I spoke with, can relate. In high school and in conservative or religious rhetoric, we are often told we cannot become pregnant. That we must remain abstinent to be a “good” and “pure” girl so we can have families after marriage. This myopic, cis-hetero, and sexist viewpoint perpetuate a false narrative that people cannot own their sexuality and ultimately – reproductive health.

Compounding these experiences are a lack of access to treatment centers or support networks for some. In rural states like Vermont with a limited public transportation system, fertility clinics or support groups might be difficult to physically access. Jessica Grose writes that “40 percent of American women of reproductive age have limited or no access to nearby fertility treatments.”[7] Arguably this is shifting under the pandemic as telehealth has become a mainstay, but for folks without internet access or reliable transportation to appear for IUI or IVF appointments, this remains an institutional barrier to reproductive care and treatment.

So, where do we go from here?

I feel like I have only scratched the surface – I am missing so much here. I want to conduct more interviews and research to gather statistics and harness the power of those experiencing infertility into legislative action and policy change including a thorough analysis of current insurance coverage, what other states are doing, and how that would work in Vermont – for everyone. I want the state to pass comprehensive legislation mandating accessible and comprehensive insurance coverage for fertility treatment and ultimately, dismantle other economic and social barriers to fertility care. Because affordable, safe, & quality fertility care IS a reproductive, economic & racial justice issue.

For now, I hope these short pieces highlight the profound feelings and experiences attached to infertility. Jane* feels lucky to have a strong support network of friends and families who ground their love in compassionate community care. But we discussed how we need more community spaces that normalize fertility treatment where people feel connected and supported; no longer hidden behind the pain and silent suffering.

If you’re experiencing infertility, we see you.

RESOURCES

This list is not exhaustive and I am only scratching the surface.

- Cost-saving: https://www.nytimes.com/article/ivf-treatment-costs-guide.html?auth=linked-google

- Guide to fertility insurance by state: https://modernfertility.com/blog/your-guide-to-fertility-insurance-coverage-by-state/

- Grants to cover infertility costs: http://www.cadefoundation.org/

Advocacy Organizations:

o Resolve *state by state list of Fertility doctors.

o Fertility Within Reach

o Affordable Families

o The Broken Brown Egg

o Black Mamas Matter Alliance