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JAMA Forum Archive, 2012-2019: Health policy commentary from leaders in the field
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Infertility: A Disease by Any Other Name

Infertility, which affects about some 7.3 million US women (about 12%) of reproductive age or their husbands or partners, is all about unfulfilled hopes and shattered expectations. As former First Lady Laura Bush wrote, “For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives.”

Image: Michail_Petrov-96/Thinkstock

Despite the anguish many people experience over the prospect of never having biological children, acknowledging infertility as a disease state has been a long time coming. Such anguish alone richly warrants the characterization of infertility as a disease deserving of treatment, as mandated by the right to health, an international legal precept yet to be fully accepted in the United States. Without such a mandate, there is little reason to believe that infertility care in the United States, now largely a self-pay proposition, will be deemed a medically necessary “covered benefit” by public or private payers.

In an opportunity squandered, the UK Committee of Inquiry Into Human Fertilisation and Embryology’s widely lauded Warnock Report, published in 1984, limited itself to stating that the “inability to have children is a malfunction.” It was not until 1993 that the Practice Committee of the American Society for Reproductive Medicine first defined infertility as a disease. No further progress was apparent until 2009, when the International Committee for Monitoring Assisted Reproductive Technology and the World Health Organization (WHO) defined infertility “a disease of the reproductive system.” Inclusion of infertility in the International Classification of Diseases and its designated billing codes followed suit in short order. In 2014, in yet another missed opening to redefine infertility, the National Public Health Action Plan settled on “the inability of couples to conceive.”

Finally, the House of Delegates of the American Medical Association (AMA) adopted a resolution during its 2017 annual meeting to support the WHO’s designation of infertility “as a disease state with multiple etiologies requiring a range of interventions to advance fertility treatment and prevention.” By elevating the gravity of infertility for all to see, the AMA has likely encouraged a measure of heedfulness by potential payers.

One cannot help but wonder as to the apparent historic reluctance to acknowledge infertility for what it is. Reproduction, after all, is innate (not to mention paramount to the survival of humankind). Moreover, the notion of the family constitutes a leading feature of the historic Universal Declaration of Human Rights, adopted in 1948 by the United Nations General Assembly, which says that “Men and women of full age…have the right to marry and to found a family.”

However, US statutory and common law afford far less clarity on matters of family building. The otherwise laudable Pregnancy Discrimination Act of 1978, which prohibits discrimination “on the basis of pregnancy, childbirth, or related medical conditions,” makes no direct reference to infertility. Similarly, the US Supreme Court’s ruling in Bragdon v Abbott that reproduction is a disability subject to protection under the Americans with Disabilities Act of 1990, does not explicitly address infertility. In the absence of additional legal precedent or guidance, it is small wonder that the underwriting of infertility benefits in the United States is limited to a modest fraction of employer-sponsored health insurance plans.

Central as the disease designation is to the attainment of “covered benefit” status, it alone will not guarantee the underwriting of infertility services. A public payer such as the federal government is under no obligation to underwrite infertility assistance unless required to do so by law. No federal agency currently supports the evaluation and management of infertility.

Moving past this impasse will require nothing less than an act of Congress which, at present, is unlikely. Public payers such as state governments are effectively absolved of providing for the right to build a family, courtesy of several holdings of the US Supreme Court. Predictably, no state government currently offers infertility care of its own accord, other than through mandates to private payers doing business in the state. Future state legislation to address infertility appears moot. Private payers for their part are all too pleased to oblige employers who choose to incorporate infertility care to their benefit basket. Most employers, however, have yet to do so.

This unfortunate state of affairs adds up to a socially unjust reality wherein family building is restricted to those who can afford it. Other western democracies generally offer at least partial public funding for fertility treatment, including in vitro fertilization. US families desperate for relief of their infertility deserve better.

About the author: Eli Y. Adashi, MD, MS, is a professor of Medical Science and the former dean of Medicine and Biological Sciences at the Warren Alpert Medical School of Brown University in Providence, Rhode Island. (Image: Brown University)
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