Ethics and Policy Advocacy and Public Understanding

Infertility is a symptom, not a disease

Dickey RP, Taylor SN, Rye PH, Lu PY, Sartor BM

Published August 6, 2000 Fertility and Sterility, 74(2), 398
DOI 10.1016/s0015-0282(00)00604-x PMID 10927067

RRM Academy Synopsis

Infertility is a symptom of underlying disease, physicians argue

Infertility is a symptom that signals disease in one or both partners, five physicians argue in a 2000 opinion letter. Insurers treat missed ovulation and infertility as the same problem, the authors say. They ask doctors to find the cause first.

Key Findings

  • The ICD, Volume 9, lists female infertility as linked to 30 other conditions and male infertility as due to 12, yet classes both as diseases.
  • The authors say insurers used the shared code for missed ovulation (anovulation) and female infertility to deny coverage for endocrine evaluation.
  • A 1991 CDC study the authors cite found higher lifetime endometrial cancer risk in patients with polyendocrine metabolic ovarian syndrome (PMOS), formerly PCOS, and in infertile patients with hypothyroidism, fibroids, or endometriosis.
  • In that study, infertile women with any of these conditions who carried a pregnancy to term had no added endometrial cancer risk.

Interpretation

Five physicians wrote this 2000 opinion letter. They say infertility is a symptom of underlying disease. Insurers often group missed ovulation and infertility as one problem. The authors point to ICD-9 data: 30 conditions linked to female infertility, 12 to male infertility. They want insurers to cover a full workup to find the cause. They also cite a 1991 CDC study. The study found higher endometrial cancer risk in infertile women with PMOS (formerly PCOS), hypothyroidism, fibroids, or endometriosis. Women in that group who carried a pregnancy to term had no added cancer risk. The findings support further research on how coding reform could change diagnosis and treatment.

RRM Context

Restorative reproductive medicine shares the idea that infertility points to a cause that can be found. Unexplained infertility is undiagnosed infertility. IVF goes around the problem and leaves the cause unexamined. Endometriosis or insulin resistance can stay in place. The letter asks for a full diagnosis first, the same principle RRM calls evaluation before treatment.

Abstract

In an otherwise excellent editorial that appeared in this journal concerning the problems created by failure of the Health Insurance Industry to provide coverage for infertility, the author, a noted academician and clinician, repeatedly referred to infertility as a disease (1). The mistaken idea that infertility is a disease is commonplace among not only academicians and clinicians but also among third-party payers and the general public and is one of the reasons that infertility is not covered by most insurance plans. The facts are that infertility and its frequent companion, anovulation, are not diseases; they are symptoms of underlying, sometimes serious disease in one or both marital partners. One result of considering infertility and anovulation as diseases rather than as symptoms is that unnecessarily powerful and expensive treatments may be used to obtain an immediate pregnancy, whereas chronic disease that may affect lifelong health is overlooked. Just as the symptoms chronic headache, chronic stomach pain, and chronic chest pain may be caused by underlying disease, so may infertility be caused by underlying disease. Endometriosis, uterine fibroids, benign ovarian tumors, and pelvic adhesive disease are causes of infertility that can be treated by laparoscopy, if detected early, but may require more extensive surgery later if they remain undiagnosed. Anovulation may be due to insulin resistance that can result in diabetes or cardiovascular disease later in life (2) or any of a number of other endocrine disorders with lifelong effects. A 1991 study from the Centers for Disease Control and prevention (CDC) found that the lifetime risk of developing endometrial cancer was increased not only in patients with polycystic ovary syndrome but also in infertile patients with hypothyroidism, uterine fibroids, and endometriosis (3). Infertile women with any of these conditions who conceived a term pregnancy did not have an increased risk of endometrial cancer. A major obstacle to the treatment of infertility as a symptom by the Health Insurance Industry is the way it is characterized in the International Classification of Diseases, Volume 9 (ICD). In the ICD, female infertility (Code 628.0) and male infertility (606.0) are classified as diseases but are clearly treated as symptoms. Female infertility is listed as “associated with,” “due to,” or “having its origin in” 30 other conditions. Similarly, male infertility is listed as “due to” 12 other conditions. Anovulation is given the same diagnostic code number as female infertility (628.0) and is not classified further as to its underlying causes. Health insurers have taken advantage of this to deny coverage for endocrine evaluation of patients with anovulation on the basis that it is synonymous with infertility. The ICD needs to be revised according to modern understanding of anovulation and the causes of female and male infertility, as was done in the 1999 edition for complications of pregnancy and childbirth. Health insurers must acknowledge that anovulation is a symptom separate from infertility that requires diagnosis and treatment irrespective of a desire to become pregnant. All of us, practicing physicians and academicians, should make establishment of an accurate and complete diagnosis our first goal when presented with an infertile couple.

Topics

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Ethics and Policy › Advocacy and Public Understanding › Public Awareness
Richard P Dickey, Steven N Taylor, Phillip H Rye, Peter Y Lu, Belinda M Sartor
Rick Dickey, Dick Dickey, Rich Dickey, R Dickey, Steve Taylor, S Taylor, Phil Rye, P Rye, Pete Lu, P Lu, B Sartor
PMID 10927067 10927067 DOI 10.1016/s0015-0282(00)00604-x 10.1016/s0015-0282(00)00604-x Dickey et al. 2000, Dickey 2000