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Andrea Dunaif Part 5, Why Hasn’t The PCOS Name Changed?

In part 5 of this Exclusive Interview, Andrea Dunaif talks with Diabetes in Control Medical Editor Joy Pape about the complexities behind the misnomer PCOS.

Andrea Dunaif, MD is system chief of endocrinology, diabetes & bone disease for Icahn School of Medicine at Mount Sinai Health System in New York, NY.

Transcript of this video segment:

Pape: So, if women with PCOS don’t have ovarian cysts why hasn’t the name changed?

Dunaif: Well, there was a conference at NIH in 2012, very similar to a consensus conference where all the scientific evidence is presented to an expert panel of individuals who know the topic area, like Bob Rizza was the Chair of the Panel for diabetes, OBGYN, cardiology, general internal medicine. But they can’t be doing research in the field, so they’re not biased. They heard the evidence and their statement was, “The name PCOS is a distraction and should be changed because there aren’t cysts. And that people fighting over what the ovaries look like keep them from addressing the important parts of the syndrome.” And it also keeps kind of mainstream health care providers, internists, primary care doctors, they think, “Oh, this is just an ovarian disorder. It’s not something I should care about.” So, I think it’s really a disincentive to physicians being interested in the field. There’s been an international effort to try to change the name. And interestingly we got pushback from patient advocates who felt they wanted to participate and we have polled them and it’s about 50/50. They don’t like the name but they’re not sure what new name they want, but I think they don’t quite understand some of the other aspects that we as physicians understand, that who’s going to be interested in a condition is very much determined by what it’s called and how it’s going to be coded, where it’s going to go for funding at NIH is determined by the name. So, I think if they had a more appreciation of that they’d be more supportive of names that kind of carried the metabolic implications in the name and one of the names that’s very popular as an alternative is Metabolic Reproductive Syndrome or MRS, which does sort of encapsulate what is going on.

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