An announcement was made today to change the name of Polycystic Ovary Syndrome (PCOS) to Polyendocrine Metabolic Syndrome (PMOS). For many in the PCOS community, this change is complicated. Some are concerned the change will cause more harm than the problems it aims to fix. Some welcome it. Some are uncertain. Some feel relief, others feel sadness and anxiety. All of these responses belong in this community. WHAT YOU ARE LIKELY TO HEAR That this change is straightforward and all upside. It is not. A change of this scale carries significant risks and impacts that have not been adequately assessed or disclosed.

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QUESTIONS THAT NEED ANSWERS

There are many questions that need answers, including:

• How will confusion and delays in care be prevented?
• How will long-standing patient-provider relationships be protected?
• How will the advocacy efforts, support programs, research and communication networks, and the people and organizations patients rely on every day be sustained?

WHAT IS AT STAKE FOR THE FIELD

A name change impacts the infrastructure that clinicians, researchers, and patients depend on. That includes:

• decades of PCOS research
• clinical guidelines built on PCOS evidence
• patient education materials and resources
• patient recruitment networks that fuel clinical trials

How this carries forward under a new name has not been resolved.

WHO PAYS

• The direct healthcare costs of PCOS in the United States already exceed $15 billion a year. Do those costs get passed on to patients, who already carry a significant share of that burden?
• PCOS has always been underfunded and under-supported. Where are the resources to support this global change supposed to come from? Again, who pays?

THE STANDARD

“First, do no harm” is a principle healthcare asks of itself. Decisions made in the name of patients should be held to that same standard. Patients deserve to be informed, included, and protected in any process that may reshape their care and community.

WHERE PCOS CHALLENGE HAS STOOD

Since 2015, PCOS Challenge has advocated that the patient remains the central focus of this decision, and that the experiences of all people with PCOS are represented, including those often left out of the record.

WHERE PCOS CHALLENGE GOES FROM HERE

PCOS Challenge will continue to convene patients, clinicians, researchers, industry, legislators, and regulators, and to help build the capacity that lowers the economic burden of the condition, advances earlier diagnosis, expands research investment, strengthens integrated care, and ensures equitable access.