As a reproductive medicine specialist in the US, I often find talking with patients about the cost and coverage of fertility care a discouraging discussion. Despite infertility being an incredibly common and devastating disease, the extremely effective treatments that have been developed to enable infertile individuals and couples to have children are often not affordable and are therefore out of reach. This made me wonder: Why is the cost of care for some diseases covered by insurance while others are not? Instead of criticizing payers for consigning infertility to the “not covered” bin, I choose to be curious. Why this disconnect?

Infertility is clearly a disruption to the normal functioning of the body that results in harm or morbidity. But despite this clear fact, it took the American Medical Association more than eight years to join the World Health Organization in defining infertility as a disease. This may seem an obvious or inconsequential point, but this declaration has an enormous bearing on how society views infertility and sends a clear message that infertility is not a mere inconvenience; it is a medical condition. Officially designating infertility a disease was a necessary but unfortunately not a sufficient step to securing public and private payer coverage of fertility care. Even the medical community often views infertility differently from other diseases. Why?

Infertility may be treated differently because it is perceived as rare; however, data strongly contradict this. One in eight couples in the US has trouble getting pregnant, and estimates suggest that more than 100 million individuals suffer from infertility worldwide. These figures are hard to conceptualize, and perhaps understanding the prevalence of infertility relative to other conditions would have more impact: more women of reproductive age are affected by infertility than by high blood pressure, by diabetes, or by cancer. Although infertility is common, its associated stigma and an absence of physical manifestations can leave sufferers feeling alone and hide them from the unaffected, who therefore remain unaware of the sheer volume of people affected. 

In addition to misconceptions of infertility’s prevalence, could the condition be viewed differently because it is seen as preventable? Some assume most tubal factor infertility is caused by sexually transmitted infections, and individuals older than 35 years of age are often left wondering if they brought their difficulty conceiving on themselves by “waiting too long.” In truth, behavioral or social factors contribute to a minority of infertility cases, so it is false to state that modifying these factors alone could eradicate the disease. But even if lifestyle issues did cause the bulk of infertility cases, why should that matter? The cost of treatment for many diseases with behavioral components, such as heart disease, lung cancer, and diabetes, are covered by public and private insurance. 

Is infertility distinct because it is not life-threatening? Broken bones, blindness, and arthritis are typically not life-threatening, but treating these conditions improves quality of life and is covered by most insurance policies.

Would these attitudes persist if the trauma associated with infertility and the reduction in quality of life suffered by those who cannot build a family had a physical manifestation? For those who have not experienced infertility, the pain is difficult to imagine. Unlike other diseases, infertility scars its victims invisibly, making it easy for society to ignore. In contrast, failure to provide treatment for diabetes can result in amputation—an outcome that would be unimaginable in this day and age. Everyone can see the loss of a limb and the disability it would entail. If insulin can prevent amputation, then it is clearly in the patient’s and society’s best interests to ensure that the medication is made affordable and accessible to diabetics. Because many people cannot see the havoc the disease wreaks, infertile couples often hear trite sentiments from friends and family such as: “Kids are a lot of work—you can have one of mine.” Or, “You should buy a puppy or travel the world!” No one would ever tell a diabetic, “Losing a foot isn’t that bad. You have two, after all!” 

Finally, the late ethicist Amnon Goldworth described a very common argument against expanding coverage for fertility care: “Such efforts are extremely expensive and, in terms of number of individuals affected, could be used more effectively in other medical arenas.” But surely the more than 8 million babies born worldwide by IVF are enough to prove that fertility care affects a large number of individuals and is effective. Why should other medical arenas be prioritized? If so, which ones? Who is assessing what people value and ensuring that the care provided aligns with their priorities? In the US, well-intentioned organizations such as the Association of American Medical Colleges and the American Medical Association that avowedly work with policymakers to improve the nation’s well-being and public health are focused on myriad other issues, and ultimately, their review and approval of healthcare policy is not binding on insurance companies’ coverage decisions.

This is a mind-boggling disconnect. Family is highly valued by both individuals and society in the US, yet the care that is required for a significant proportion of the population to build a family is not accessible. Black and Hispanic individuals have less access to assisted reproductive technology, as well as to other gold-standard disease treatments, than their white counterparts are, exacerbating longstanding inequities in healthcare. 

Despite all of this, I am choosing to see fertility care in America through a lens of radical optimism. I believe the stigma surrounding infertility is lessening, and individuals are increasingly willing to talk about their experiences of suffering from this devastating, all-consuming, life-altering disease. I have faith that we are becoming smarter healthcare consumers, and we will demand that the services covered by public and private insurance plans align with our healthcare priorities. I am confident that we recognize the inequality that has plagued healthcare delivery in the US and that there is a genuine desire to reform the system to provide nondiscriminatory care. I am convinced that surviving this pandemic has inspired decisionmakers to rebuild this fragmented and inefficient framework from the ground up. Until then, I will continue to be one of the loudest voices in the room fighting for support for infertility care, and I hope that everyone will join me. 

Kate O’Neill is an attending surgeon specializing in reproductive endocrinology and infertility at the University of Pennsylvania. She also serves as an assistant professor of obstetrics and gynecology and is the co–principal investigator of the Uterus Transplant for Uterine Factor Infertility (UNTIL) Trial. Reach out to her on Twitter @KateONeill_MD.