Commemorative legislation has become a common attention-getting effort among some in Congress, with many health and medical conditions having a day, week, or month designated or at least proposed for recognition.
The latest, congressional resolution, H. 495, has been introduced in the house to designate September as "PCOS Awareness Month,"1 to draw attention to, educate about, and increase research for Polycystic Ovary Syndrome (PCOS).
This action, initiated by the National Polycystic Ovary Syndrome Association and sponsored by Georgia Democratic Congressman David Scott, aims to dedicate a focus for PCOS, which affects an estimated one in every 10 to 20 girls and women across all ethnicities and races, ages 15 to 44.2
“PCOS is one of the most pervasive and underserved public health issues threatening the mental and physical health, and quality of life of girls, women and their families,"said Sasha Ottey, the executive director of PCOS Challenge, the leading patient support organization for this condition, in a press announcement issued by the organization.3
“Attention to this disorder is critically important because more than 50 percent of women with PCOS are going undiagnosed, and [this legislation] urges medical researchers and clinicians to advance their understanding of PCOS to achieve earlier diagnosis, and generate more research to address the development of and treatment for this condition,” Ms. Ottey said. And, women with PCOS are also at increased risk for diabetes, cardiovascular disease and stroke, which rise with age.
However virtuous the efforts to raise awareness about this hormone-related syndrome are, any attention may raise more concerns than arriving at constructive solutions.
“I would urge Congressman Scott to coordinate with the National Institutes of Health (NIH), which has recommended changing the name of this syndrome” to one that more accurately reflect the range of metabolic, psychological, and reproductive complications typically experienced by women with PCOS, Scott Isaacs, MD, an endocrinologist with Atlanta Endocrine Associates, and adjunct instructor of medicine at Emory University School of Medicine in Atlanta, Georgia, told EndocrineWeb.
“This is why American Association of Clinical Endocrinologists (AACE) has been pushing for the Clinical Care Commission to coordinate these issues within the US government. There are so many different agencies that address the issues (with regard to PCOS) but the various organizations don’t talk to each other,” said Dr. Scott.
“The name ‘PCOS’ is a distraction and an impediment to progress. The name focuses on a criterion—polycystic ovarian morphology—which is neither necessary nor sufficient to diagnose the syndrome,” stated the panel recommendations, “We believe it is time to expeditiously assign a name that reflects the complex metabolic, hypothalamic, pituitary, ovarian, and adrenal interactions that characterize the syndrome—and their reproductive implications.”3
In 2012, the NIH had a state-of-science conference on PCOS, in which research was presented to a panel of neutral (non-endocrinologists) experts representing specialties associated with this condition, including obstetrics/gynecology, diabetes, cardiology, and a nurse practitioner.
The NIH panel report was critical of the 3 diagnostic classification systems currently used to study and manage PCOS: the NIH Criteria, the Rotterdam Criteria, and the Androgen Excess and PCOS Society Criteria, yet the ongoing practice of multiple systems “hinders the ability of clinicians to successfully partner with women in addressing the health issues that concern them.”3
“To resolve any confusion created by different diagnostic systems, we recommend using the broad, inclusionary Rotterdam Criteria, while also specifying a woman’s particular phenotype (or observable clinical characteristics),”3 said Dr. Timothy Johnson, a panel member and obstetrician-gynecologist-in-chief at the University of Michigan in Ann Arbor.
“We also recommend that key components of the Rotterdam Criteria be clearly defined and have normal ranges established across age groups and populations," he said.
Even more than the competing diagnostic criteria, the fact that PCOS has so little to do with ovaries became quite apparent.
"It was obvious to the panel members as well as practitioners that the name PCOS was more of a distraction and impediment to progress in treating this disorder," said Andrea Dunaif, MD, chief of the Hilda and J. Lester Gabrilove Division of Endocrinology, Diabetes, and Bone Disease for the Mount Sinai Health System.
"The research clearly delineated the endocrinopathy of this disorder, In fact, there was near universal agreement that in order to gain the kind of attention needed to attract research and improve management of this metabolically influenced disorder, a name change was necessary. The panel recommended Metabolic Reproductive Syndrome (MRS)," Dr. Dunaif told EndocrineWeb,
Since the conclusion of the NIH conference, international surveys have been issued to assess perceptions about changing the name. And, 80% of health professionals endorsed such as a change, where as among patients the support for a change was closer to 50/50. However, Dr. Dunaif believes the consumer groups are starting to recognize the need to shift their position in order to enlist the endocrinologists, cardiologists and other specialists in getting behind a condition that is much more than a reproductive organ.
She offered Chronic Fatigue Syndrome as a case in point. The Insitute of Medicine recommended a name change to "systemic exertion intolerance disease," to recognize the physical aspect of the condition as a sustained depletion of energy after minimal activity, or "post-exertional malaise", which has made it easier to attract research funds and to advance the serious nature of the condition. A compromise of sorts seems to have taken place so that the condition is referred to as PM/CFS to reflect clinical and consumer desires.
"A similar compromise could be devised since PCOS is essentially a subtype, a renaming could be embraced, such as MRS/PCOS, which gets away from the emphasis on the ovaries, and focuses, instead of on the high-risk metabolic challenge that these patients face," Dr. Dunaif said.
As for the short term effort of legislation, “I think the PCOS bill has very little hope of passing. Congress does not favor single disease-state bills and there are only a few co-sponsors and no corresponding Senate bill,” said Dr. Isaacs, as such, it would be much more fruitful to see a more coordinated effort evolve with NIH, professional organizations, including the Endocrine Society and AACE.