DMEJ
Duke Medical Ethics Journal
Infertility as a Health Identity
By: Micah Hurewitz
Hundreds of medical conditions have outward-presenting symptoms, require sufficient medical care which can be costly and leave a social impact on the person experiencing disease. However, some diseases do not present symptoms or leave a significant social mark, yet still require expensive procedures to obtain a desired socio-medical outcome. Infertility, in both men and women, often falls under the latter descriptors, as treatments using assisted reproductive technologies are still expensive and many experience self-perceived social harm due to the condition. Currently, only certain states within the U.S. require some form of insurance coverage for infertility, and many countries around the world neglect the issue entirely. Here I will explore prior research on the condition, reasons why insurance will not cover infertility, and the many social harms that are associated with infertility.
Infertility, defined as one year of unprotected sex without successful conception, is very common among typically-maternal-aged women (Mayo Clinic). In the United States, estimates suggest that between one-third and one-half of all women meet the criteria for infertility at some point during their lives (Johnson et al., 2019), and, at any given point, around 10 to 15 percent of couples struggle with getting pregnant or reaching a successful delivery (Mayo Clinic). An increased risk for certain diseases has also been associated with infertility, but the causes are still relatively unclear—causes could range from chemical imbalance to dysfunction of the sexual organs, cystic fibrosis, endometriosis, or cancer (Mayo Clinic; Insogna & Ginsburg 2018). Even in cases with no distinct cause, Mayo Clinic recommends seeking treatment regardless of whether the condition resolves itself with time. Aside from age or other medical history, risk factors for infertility also include smoking, drinking, and unhealthy weight (Mayo Clinic).
As infertility is quite common, many women and couples do not view infertility as problematic to their identity. However, the disruption arises due to the perceived barrier to a desired outcome—in this case, the outcome is parenthood, particularly biological parenthood (Johnson et al., 2019). Since treatment is often difficult to obtain and is attached to ethical issues, insurance providers, historically, have been reluctant to improve access to these treatments, which are currently labeled as elective procedures due to their lack of association with medical emergencies. However, due to the social-emotional health risks and expenses, infertility should have broader, more accessible treatments and insurance coverage.
"Infertility has been designated as a disease undeserving of bolstered financial support."
Insurance coverage for infertility has been increasing throughout the U.S., but is still not at the point where it is accessible to all. While pregnancy treatments are covered, treatments for infertility such as assisted reproductive technology (ART) are not (Resolve). As more and more states passed infertility insurance mandates, the use of infertility services increased nearly three-fold; there are currently 19 states with insurance mandates (Insogna & Ginsburg 2018, Resolve). Also, only about 20 percent of employers provide infertility-related treatment benefits. This shows that infertility treatment is actually sought out, while some providers would believe that infertility treatment does not have high demand—only three percent of infertile couples sought in vitro fertilization (Harvard Health). A significant component of this rise has been the biotechnological developments that have made assisted reproduction more common.
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As of 2015, around three thousand ART procedures were being done per million women. However, there are still disparities in access to this new technology that can provide couples with biological children (Insogna & Ginsburg, 2018). First, it is up to states to decide whether infertility should be included in insurance mandates; federal health insurance currently offers no coverage for infertility, meaning that tens of millions of federally-employed Americans or those enrolled in the more affordable federal programs do not have coverage. Second, minority groups are also affected, since financial barriers lead to reduced rates of seeking ART. For example, the likelihood of Black patients seeking ART is four times higher than the national average when the cost barriers are reduced or when insurance coverage takes on infertility treatments (Insogna & Ginsburg 2018). We observe these consequences because infertility has implicitly been designated as a disease undeserving of bolstered financial support.
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The psychological impact of infertility also arises because treatment access is uncertain. Infertility has been shown to cause women and men to feel socially “tainted,” according to Goffman (1963, as cited in Johnson et al., 2019). Couples dealing with infertility face stigma, a sense of loss, and lessened self-esteem; generally, people’s perception of their own status is entirely based on social interactions and societal pressures telling the individual that they are of less worth if they cannot reproduce (MGH Center; Johnson et al., 2019). A 1991 study by Greil found that most women could not separate infertility from their identity as a woman and a wife (Johnson et al., 2019). Thus, infertility transitions from a generally physically harmless medical condition to a detrimental component of one’s identity. What is particularly interesting is data from a Bell (2014) study which highlighted the fact that in general, women of high socioeconomic status must cope with lengthy treatment for infertility while women of lower status must cope with infertility being unresolved. Thus, infertility is a “proportionally higher burden” for wealthier women (Johnson et al., 2019). The entanglement between wealth, treatment options and infertility is a complex web deeply influenced by stereotypes about womanhood and societal norms suggesting that the ideal marriage is a heterosexual one, where the parents raise their own biological children.
The intersectionality of infertility is especially intriguing when considering pervasive stereotypes about Black and Brown women, who are mislabeled as being “hyper-fertile,” while this is in fact not the case. According to Beauboeuf-LaFontant (2007, as cited in Johnson et al. 2019), stereotypes of women of color may prevent them from self-identifying as infertile and seeking treatment for infertility because that would be a weakness that is “associated with traditional white norms of femininity.” However, Leiblum (1987, as cited by MGH Center) suggests that undergoing a process of assisted reproduction is also associated with increased levels of anxiety. Adding that on to the existing complex flow of social and psychological impacts, individuals with infertility find themselves in a recursive cycle of self-perceived pain.
These additional sources of anxiety may also come from the fact that treatments for infertility have been described as unethical and are banned in many places around the world. Treatment options are regulated differently in different countries, and prices of these options are wildly variable (Robertson, 2018; Insogna & Ginsburg, 2018). Some countries legally require a married couple to pursue ART, while others, such as the U.S. or U.K., allow homosexual or single individuals to seek options for raising children, be it through in vitro fertilization or other ART options (Robertson, 2018).
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Studies focusing on which groups find ART to be ethical have found that more conservative, older, less wealthy, less educated and more religious individuals are more opposed, while those who are wealthier, younger, and have higher education tend to be more comfortable with new technology are more accepting of ART treatments (Schreffler et al., 2010). Since this technology is still relatively new, it will be interesting to see how these opinion demographics shift as ART becomes more common among young people over the next several decades. This form of “cultural lag” arises when technology quickly develops, and the industry’s qualification of infertility may have to change as women wait longer to have children and as other social changes reshape the health landscape.
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Clearly there are many issues that should be investigated further to halt the cycle of harm to women and men suffering from the effects of infertility. Insurance should be expanded so that access is increased, and society will have to become increasingly comfortable with ART treatments. Infertility rates are not decreasing, so it is a matter of time and government action for treatment to improve in quality and for expenses and therapy, both physical and psychological, relating to treatment to be covered by insurance.
References
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Campo-Engelstein, L. (2010). For the sake of consistency and fairness: Why insurance companies should cover fertility preservation treatment for iatrogenic infertility. Cancer Treatment and Research, 156, 381-388. http://doi.org/10.1007/978-1-4419-6518-9_29
Centers for Disease Control and Prevention. (n.d.). Infertility & STDs. https://www.cdc.gov/std/infertility/default.htm
Harvard Health Publishing. (2009, May). The psychological impact of infertility and its treatment. Harvard Mental Health Letter. Retrieved from https://www.health.harvard.edu/newsletter_article/The-psychological-impact-of-infertility-and-its-treatment
Insogna, I. G., Ginsburg, E. S. (2018). Infertility, inequality, and how lack of insurance coverage compromises reproductive autonomy. AMA Journal of Ethics, 20(12), e1152-1159. https://doi.org/10.1001/amajethics.2018.1152
Johnson, K. M., Greil, A. L., McQuillan, J., Leyser-Whalen, O., Shreffler, K. M. (2019). Infertility and self-identification: The indeterminacy of illness-self relationship. Sociological Perspectives, 63(3), 388-405. https://doi.org/10.1177/0731121419867691
Mayo Clinic. (n.d.). Infertility - symptoms and causes. https://www.mayoclinic.org/diseases-conditions/infertility/symptoms-causes/syc-20354317
MGH Center for Women’s Mental Health. (n.d.). Fertility and Mental Health. https://womensmentalhealth.org/specialty-clinics/infertility-and-mental-health/
Resolve. Health Insurance 101. (n.d.) https://resolve.org/what-are-my-options/insurance-coverage/health-insurance-101/
Robertson, S. (2018). Infertility ethics. News Medical. https://www.news-medical.net/health/Infertility-Ethics.aspx
Shreffler, K. M., Johnson, D. R., Scheuble, L. K. (2010). Ethical problems with infertility treatments: Attitudes and explanations. The Social Science Journal, 47(4), 731-746. http://doi.org/10.1016/j.soscij.2010.07.012
World Health Organization. (n.d.). Infertility is a global public health issue. https://www.who.int/reproductivehealth/topics/infertility/perspective/en/
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Worthington, A. K., Burke, E. E., Leahy, C. (2019). A comprehensive examination of infertility stigma among fertile and infertile women in the United States. Fertility and Sterility, 112(3), e378. https://doi.org/10.1016/j.fertnstert.2019.07.1082