COLLEGE PARK, MD (WJBF) – Polycystic ovary syndrome affects 15% of women in the United States and many go undiagnosed. Some women take as many as ten pills a day to treat the genetic, hormone, metabolic and reproductive disorder. But one organization brought together several patients to talk with the U.S. Food and Drug Administration about the need for an official PCOS drug.
“It started at age 15. Facial hair,” said one patient.
“I ended up getting diagnosed at 22 after having bled for 40 days,” another patient stated.
One by one women battling PCOS shared lived experiences. “I wake up, basically, every single day of my life exhausted,” said Allison Tuckman, a patient and advocate.
From issues with being heard by doctors to the challenges of treating their polycystic ovary syndrome, these women, representing the 15 percent of them affected across the U.S. by the disorder, were heard.
“Most patients are taking multiple drugs to treat multiple symptoms and there’s a lot of trial and error around trying to manage the condition,” said Sasha Ottey, Executive Director, PCOS Challenge: The National Polycystic Ovary Syndrome Association.
Sasha Ottey runs PCOS Challenge: The National Polycystic Ovary Syndrome Association. The organization held the first of its kind PCOS Externally-led Patient Focused Drug Development meeting at University of Maryland. The gathering gave members from the FDA a chance to hear how medicine, specific for the disorder, could be life saving.
“I struggle everyday with anxiety, depression and eating disorder,” said Shelby Goodrich Eckard, PCOS Patient and Advocate. “A drug that would address the underline cause of PCOS and alleviate some of those co-morbidities and symptoms that I live with and struggle with everyday would be incredible.”
“I learned I had diabetes and I started learning about PCOS. And then I learned I had endometrial cancer as a result of PCOS,” said Jenifer Gutke, PCOS Patient & Advocate.
Patient Advocates Eckard and Gutke joined other women on panels and in large discussion groups during the more than four hour meeting. Women stressed how managing their PCOS with off label drugs, as many as 10 pills twice a day, isn’t working. PCOS Challenge noted that the economic burden of PCOS is $15 billion in the U.S. alone.
“It’s incredibly frustrating. We don’t know the root cause. We don’t know the genetics behind it. We need treatments curtailed to treating our disorder and not treating the symptoms that arise because of it,” Tuckman said.
Patients also took polls, shedding light on how everything from weight gain to infertility and depression can impact their daily lives.
“Patients with PCOS have so many multiple issues. They can probably be fixed on a treatment for one single thing. But there’s no one single thing,” said Dr. Anuja Dokras, a Reproductive Endocrinologist and Infertility Specialist. Dr. Dokras added that PCOS is a very common condition with not a lot of options for medication because there has not been anything new of the market for many years. She said the meeting brings awareness to that.
Ottey added. “They want specific options for PCOS. To help them manage the condition better. And prevent some of the comorbidities such as diabetes, endometrial cancer, infertility, heart health issues, maternal health issues. All of those that are connected to PCOS.”
PCOS Challenge will submit a report to the FDA summarizing the findings from the meeting. Anyone who would like to add their voice and perspective can do so by Sunday, December 3 here.