The challenges of parenthood for working parents are well known and, in STEM (Science, Technology, Math and Engineering) fields, have been strongly linked to the “leaky pipeline”—the loss of women from scientific careers at much higher rates than men. In contrast, the challenges that many women face in trying to conceive a baby, and the implications of these struggles for retention in STEM careers, remain veiled and stigmatized. This silence around the impacts of infertility can be largely attributed to societal stigmas and discrimination, especially in STEM fields where women are in the minority.
Women experiencing infertility often suffer feelings of shame, failure and isolation and couples struggling with infertility have high rates of anxiety and depression, with many reporting that infertility is the most upsetting thing to have occured in their lives. Anxiety and depression rates associated with infertility are comparable to those associated with cancer or heart attack. People struggling with infertility need support, but this support has been largely confined to online groups and whispers among friends. We need to start having open and honest conversations about the struggles of starting a family if we want to see real changes and make infertility less of a burden.
Infertility is professionally and legally regarded as a disease. It is diagnosed by failure to achieve pregnancy after 12 months of trying to conceive unsuccessfully. Approximately one in six couples in the US are affected by infertility and although infertility affects both men and women, women bear the brunt of time and cost in the treatment for infertility. Furthermore, cultural stereotypes often inhibit African-American and Hispanic women from seeking treatment, and most LGBTQ couples need at least some assistance in their efforts to conceive. Therefore, infertility, and the challenges it poses, disproportionately affects women—in particular women of color—and LGBTQ families.
Infertility treatment is extremely time consuming, poses tremendous challenges to mental health, and is cripplingly expensive because it is often not covered by health insurance. Infertility, like the frequently discussed “baby penalty,” contributes to the academic “leaky pipeline” by hitting women at an age when they are most vulnerable in their careers. For women in STEM, this can be devastating to research productivity due to the time and stress involved with treatment. Miscarriages, common in general but especially among women dealing with infertility, enact their own physical and emotional tolls.
The struggle is real
Struggles with infertility pose logistical challenges that can have severe impacts on women’s careers. Conception has to be timed, which can pose difficulties. Infertility treatments and IVF (in vitro fertilization) schedules can be intense, requiring daily monitoring during critical intervals and invasive procedures that must occur at specific times during the treatment cycle.
Together, these issues can conflict with work schedules and work-related travel, which is common in academic and science careers. Cancelling or rescheduling meetings, stopping fieldwork and attendance of conferences in disease-prevalent areas (zika, malaria), declining invitations for seminars and workshop participation, and rearranging other commitments is often necessary and becomes commonplace during infertility treatments.
This creates the illusion that the researcher is not serious about science or their career. Furthermore, those who do not live in cities large enough to have fertility clinics often have to travel long distances for treatment. All of these issues lead to losses in terms of chances to conduct important research, connect with colleagues, develop collaborations, and network in the ways which are crucial to a successful scientific career. Missing out on such opportunities is particularly harmful to early-career scientists—and these are just the pure timing and scheduling aspects of infertility, not to mention the physical and emotional tolls these treatments incur.
Women struggling with infertility frequently face these challenges in an environment where they do not feel comfortable revealing what they are going through. Sometimes, there is already pressure to not have children. Fear of judgmental and insensitive comments, as well as the intensely personal nature of the struggle make it difficult for women to be open about infertility and treatment. The social isolation that this produces contributes to the stress associated with infertility treatment.
The crippling cost of infertility
In the US, costs for infertility treatment are higher than anywhere else in the world. IVF in the US currently costs more than $23,000 per cycle on average, and more than half of patients complete more than one cycle. Most health insurance plans provide no coverage for infertility treatment in the US, and plans offered by universities and other academic institutions are no exception. Adoption and fostering also involve a significant investment of time and money, including many fees that are rarely covered by insurance. The average cost of a private adoption in the US is $37,000.
Like infertility treatment, adoption also does not guarantee a baby: the current US adoption failure rate is 20 percent due to situations where the adoption doesn’t go through or failures to match before the expiration of adoption agency and attorney retainer fees (typically 18 months). For most young families, these are unimaginably large financial burdens, with enormous risks and uncertainty.
“At 33 I never thought I would have trouble conceiving. However, when I’d been off of birth control for 6 months and still not had a “normal” cycle—I started to worry. The endless cycle of daily temperature monitoring and excitement every month to just have another negative pregnancy test was miserable. Eventually we saw a specialist and after many rounds of different drug cocktails, injections, ultrasounds, we had a successful IUI (interuterine insemination) with pregnancy. Another side effect of all of this was that as a postdoctoral fellow, I had to tell my boss why I was often late to work or working from home. Fortunately he was very understanding, but it was a very stressful time both emotionally and physically to keep up the challenges of scientific work.”
“My husband was diagnosed with and treated for stage 4 cancer when we were in our mid-thirties and before we began planning our family. Because of the challenges with his health, we did not begin our efforts to have children until I was in my late 30’s. This meant we were dealing with issues on both the male and female side of fertility. It took us 4 years, 5 IVF cycles, 2 miscarriages, approximately $100,000, and many difficult decisions to finally become pregnant.
During this time, I interviewed for faculty positions, accepted one, and launched a new laboratory. I discreetly missed work to drive over 2 hours round trip multiple times a week for my numerous IVF cycles, worked through 2 incredibly disappointing miscarriages, and was (and continue to be) the main caretaker for my husband. This has been an incredibly demanding and exhausting process. Most importantly though, I am looking forward to welcoming our first child very soon.”
“I found out at age 35 that I have a rare uterine anomaly that makes conception difficult and increases rates of miscarriage and problems during pregnancy. Doctors recommend IVF for any hope of safely conceiving a baby in a case like mine, but it is also clear that this will not be easy, and that multiple rounds of treatment will be necessary. Because my health insurance does not cover any infertility treatment and clinics nearby would realistically cost $50,000-$100,000 or more for my case, we made the decision to travel for more affordable treatment.
Even though I am just at the beginning of treatment, it has been more than a year of appointments, invasive procedures, and surgeries to even get to this stage. I have had to cancel participation in working groups, halt fieldwork, decline seminar invitations, and delay important collaborations, not to mention the havoc that the unpredictable schedule wreaks upon my ability to schedule routine meetings for work.
A major emotional challenge of infertility is dealing with the reality that all of these sacrifices might be for naught—there is no guarantee of a baby, no matter how hard you try, no matter how much you wish to become a mother. Although these emotional challenges do not have any easy fix, one major aspect of the infertility struggle does: treatable medical conditions that cause major life impairments should be covered by health insurance.”
“After a year of unsuccessfully trying to conceive, my husband and I went to see a reproductive endocrinologist who diagnosed me with Diminished Ovarian Reserve. We ended up doing 4 medicated cycles, 2 unsuccessful IVF cycles, and 1 IVF cycle that ended in a miscarriage. We were finally successful with our 4th IVF procedure and I defended my PhD while 6 months pregnant. By that point we had spent our life savings, sold a car, and borrowed money from our parents to try and build our family.
The process had also taken a serious mental and emotional toll on me. It was an incredibly difficult and lonely time and I struggled with intense feelings of shame, failure and isolation. This, coupled with the stress of getting a PhD, led to an anxiety disorder. It’s so important to give people the financial and emotional support that they need and to finally end the stigma associated with infertility.”
“During my PhD in my early 30s, my husband and I wanted to start a family. After a year of trying naturally and months of testing, we were diagnosed with unexplained infertility. We tried 4 rounds of IVF, spending over $50,000 using money that we borrowed from family and student loans. We were pregnant after the 3rd IVF round but it ended in miscarriage. After the 4th unsuccessful round, we decided to adopt (another $40,000 in expenses).
Although I don’t regret the decision to adopt, the IVF and adoption processes made me sad and angry. I felt angry at my body for not being able to conceive and carry a baby but also angry that the only options for women in my situation to start families were extremely expensive. We were very fortunate to have family help out but many women do not have this option. Being able to start a family is a basic human right and help for family building should not be limited to people with financial means.”
WHAT CAN WE DO?
Enact Institutional Changes
All of the above issues create hurdles for women who are building their careers in science while dealing with infertility. Several concrete institutional changes can substantially lessen this burden.
Expand insurance coverage to family planning
In certain fields, insurance coverage of infertility treatment is becoming increasingly more common. Universities and other academic institutions need to follow suit. Although universities have thus far lagged behind tech industries, grassroots efforts by students at the University of Michigan led to expanded insurance benefits that now include infertility treatment. RESOLVE, a national infertility awareness group, has guidelines and resources available for asking Human Resources departments for expanded insurance benefits.
Changes at the state government level would contribute even more broadly to expanded infertility benefits. Fourteen states have mandated coverage of infertility benefits; lobby your state legislature to ask for your state to pass such a mandate. The non-profit group Fertility Within Reach has data and suggestions for lobbying legislators for changes, as well as human resources departments, and insurance companies.
Some academic institutions provide generous benefits for family building through adoption. Many institutions, ranging from Ivy League to state universities, have adoption assistance programs to cover expenses such as adoption and attorney fees, travel expenses, and court fees. Adoption assistance plans should be commonplace.
Enact clear policies that support leave for infertility treatment
Key to surviving in an academic career in the midst of infertility is having policies in place that support not only new parents, but those trying to become parents. Infertility is legally considered a disability, and as such, reasonable accommodation is required by the Americans with Disabilities Act (ADA) for those who request it during infertility treatment. Even with these legal protections, however, women dealing with infertility may still face severe impacts to their career due to lost time and productivity, and there are not always resources available for optimal accommodation of disabilities.
Although the option for tenure clock-stops are common after the birth of a child, women struggling with infertility should be aware that many institutions will grant tenure clock stops for any event considered to be a major life disruption. Infertility and miscarriage should absolutely be considered under these policies. We encourage administrators and department chairs to support tenure-clock stops in these circumstances when they are requested.
Women going through IVF have treatment schedules that require frequent absences from work. This poses challenges for women in academia, particularly when it conflicts with teaching obligations. Furthermore, because many women have to travel for treatment, maintaining teaching obligations may be impossible for weeks at a time. Time off for infertility treatment is subject to ADA accommodations, yet most institutions lack specific funds which can be used for such purposes; hiring temporary replacements for teaching requires such funds.
We advocate for academic institutions to set aside university-level funds for ADA accommodation requests so that the financial burden of granting such requests does not fall on the units negotiating on the accommodations. In particular, granting penalty-free teaching release during the semesters in which women are undergoing treatments should be supported by deans and department chairs whenever possible.
Campus groups that discuss these issues in the open can provide critical support and facilitate de-stigmatizing infertility in the workplace - these groups should be encouraged and supported by institutions and be a central place to share resources.
PAYING FOR INFERTILITY
Infertility creates enormous financial burdens for anyone without comprehensive insurance coverage. An agonizing part of deciding on a treatment plan is making decisions about the amount of money that is feasible to spend weighed against the potential for success of that option. Likewise, adoption expenses are staggering, and come without any guarantee of a child. These decisions are highly individual to each woman and/or couple, but some programs may help, and there are several options to consider:
Check out shared-risk programs. Some clinics offer programs where you pay more than you would for one IVF cycle, but for that flat rate they allow you to continue treatment for up to a certain number of cycles, and will refund you the money if you are not successful (with “success” being defined either as achieving pregnancy or achieving a live birth -- be sure to ask for the details at the clinic you are considering). These programs can be very beneficial for women who are unlikely to succeed with one cycle. The catch: the requirements (age, hormone marker levels, etc.) for entry into these programs are often stringent, and many women facing infertility will not qualify for them.
Consider lower-cost clinics that may require travel. Although needing to fly long distances for treatment presents its own challenges, there are reputable clinics within the US that offer IVF for 25-50 percent of the typical costs, and other good options outside of the US. If traveling within the US, monitoring for an IVF cycle can often be done locally, and short trips are only required for egg retrievals and embryo transfers.
Think outside the box about ways that you might be able to get insurance coverage.
Apply for infertility grants and scholarships. Many small non-profits offer grants to people facing infertility challenges. RESOLVE curates a list of these opportunities. Loan financing options are also available.
Take advantage of tax benefits. Keep careful track of your medical spending on infertility treatment—if it exceeds a specified percentage of your adjusted gross income (7.5 percent in tax year 2018; 10 percent in tax year 2019), these expenses are tax deductible. Travel costs associated with medical treatment are also tax deductible.
Loans, grants, tax credits, and financing options are also available for those considering adoption. Federal tax credits are available for adoption to offset adoption costs such as attorney and agency fees and travel. However, these credits are not guaranteed to be available every fiscal year; lobby your state legislature to keep this tax credit in place. In 2017, House Republicans proposed a tax bill that would eliminate the Adoption Credit, however public pressure from adoption advocates, individuals, and religious groups, prevented this repeal from occurring.
END THE STIGMA OF INFERTILITY
As recent initiatives like #MeToo have shown, if we want to fix a problem we first have to talk about it. Not everyone will experience infertility but given the prevalence of fertility challenges, it is likely that everyone knows someone who has or is currently struggling with these issues. This is an opportunity to end the stigma and lend support to everyone facing these challenges. Here are some suggestions for being a good friend and advocate to those undergoing infertility struggles.
- Be supportive and respectful. Offer to bring meals or other task-relief that can free up time.
- Hold space.
- Listen without offering advice.
- Be understanding and try to accommodate changes in scheduling, when possible.
- Think before you speak. Could your comment be seen as judgmental, hurtful or thoughtless?
- Minimize the problem or describe worse things that could happen.
- Gossip or share details about anyone’s medical condition.
- Complain about your pregnancy or your children.
- Ask intrusive questions or push for details.
- Give your opinion on the choice of treatments.
For additional suggestions visit https://resolve.org/support/for-friends-and-family/
ARE YOU STRUGGLING WITH INFERTILITY?
You are not alone. You are not a failure. You have no reason to be ashamed.
We are stronger together, and by sharing our experiences and holding space for each other, we can support each other as we rise. 500 Women Scientists has created a supportive private Facebook group of academic women who have struggled or are currently dealing with fertility issues and/or who have chosen alternative routes for starting families such as adoption, fostering and donor gamete conception. To join this group please email firstname.lastname@example.org and indicate your interest in being connected with the group moderators.
Additionally, we hope to build awareness of these issues through our new Initiative “SciMom Journey”. To contribute your story please visit https://500womenscientists.org/scimom-journey-resources