Advocate For PCOS: A Global Perspective

Sasha Ottey, MHA, MT (ASCP)

Thank you so much, Dr. Gersh, for having me at this special event. As you mentioned, my name is Sasha Ottey, and I am the founder and executive director of PCOS Challenge, the National Polycystic Ovary Syndrome Association. I founded the organized session after my diagnosis of PCOS. I went to see an OB-GYN after I had missed some periods, and I knew that wasn’t normal. I was working as a microbiologist at the time. What was the defining moment for me was when I left the office after having been told not to worry about not having my period. Plenty of women would love to not have their periods and come back to see me. When you want to get pregnant, I only got a little pamphlet that I read within five minutes, and that was it. I felt so unsupported, and I felt like it was up to me to figure out what this was, what it was for me, and how to treat it. That became the defining moment for me when I decided I had to do something. After researching and finding out that there were millions of other women, girls, and other people who have PCOS and felt the same, they got the same dismissal, or that’s how it felt to me when I went worried about my periods and my doctor told me not to worry about not having my periods. Most people felt dismissed and without adequate information, without evidence-based information, because the research was almost not there. then subsequently finding out that PCOS had an awareness problem. PCOS has an underfunding research problem, which leads to a lack of knowledge and treatment options. So that’s what the PCOS Challenge set out to do: provide evidence-based information to PCOS patients and their supporters, as well as healthcare providers, and then also advocate on behalf of the millions of people with PCOS, women, and girls all around the world, who have PCOS and feel so alone and unsupported.

Felice Gersh, MD

Well, I bet everyone out there, or the vast majority, is saying, “Wow, I had that same experience,” because I can say that I had that same experience. It’s so fabulous. Was it you who created this organization? Tell us a little bit about what advocacy means when you talk about the nitty-gritty, like what do you do to create this awareness, to help fund research, and to educate providers? Tell us a little bit about the inner workings of your organization and how you go about accomplishing these critically important goals.

Sasha Ottey, MHA, MT (ASCP)

Well, Dr. Gersh, back in 2017 or before that, we had to investigate. Why was this so underfunded? Why was there a lack of resources for PCOS? So we had to understand how research was funded. That’s when we found out that PCOS got almost at least back then when the funding was abysmal. It was less than 0.1% of the NIH budget, and for a disorder that’s this prevalent, more than 10% of women have PCOS. It was astounding that there wasn’t the investment in research that was necessary to fully understand this disorder. So we also searched for bills that mentioned PCOS. Was there any policy surrounding PCOS? Any legislation? There were none. There were none. That’s what we set out to do. We wanted to, one, increase PCOS awareness, provide PCOS funding for research, and then also provide education for healthcare providers because we know that the majority of PCOS patients, 50% or more, go undiagnosed. There’s an issue with healthcare providers being able to identify PCOS, diagnose it, and treat it. We went to Congress, and we built a platform where patients could advocate and bring their lived experiences and stories about how it impacts them to their representatives and their senators. so that the government was now aware of this disorder that was so pervasive and that was so impactful because PCOS impacts not just your reproductive health, which is an important aspect, but also your metabolic health, your mental health, your maternal health, and your infant health. It’s so, and it even impacts your academic life and your career. PCOS spans multiple areas of life, and yet there was this lack of awareness in the government, which funds PCOS research. We had to strategize. There is this awareness issue. We needed the government to be aware of the need to prioritize PCOS because our organization’s vision, or at least our short-term vision, is that PCOS becomes a public health priority and is treated as such. so we had to tackle the awareness issue first. We did this because PCOS was already being celebrated as PCOS Awareness Month within the patient community in September. But it wasn’t listed on any government websites. Nobody knew that this was happening besides some of the patients. One of the first things we set out to do was have September officially designated as PCOS Awareness Month because, if the government doesn’t know, their awareness calendar mentions or focuses on other disorders throughout the year. February is heart month. October is breast cancer awareness month. So, September, being PCOS Awareness Month, was an important first step in raising the profile of PCOS. We the PCOS patients. We built this platform for patients to share their stories. We had a resolution drafted and supported by the US Congress and the Senate. Senators all unanimously supported September as PCOS Awareness Month. This was step one in our advocacy strategy that propelled PCOS advocacy to where it is nowadays, where all around the world, organizations, people, and all stakeholders use September as a way to magnify what PCOS is, raise awareness, and educate the general public and others about what PCOS is and how it impacts people. This was an important first step in advocacy, and in the resolution, we, the government, now want all states to recognize September as PCOS Awareness Month and recognize the seriousness of PCOS and the impact that it has on and on citizens or everyone who lives in the US. also for there to be increased education, awareness, and research into PCOS. So this is a long-term strategy of ours where we use the powerful voices of those who live with PCOS and who are impacted by PCOS and use them to create the change that we need.

Felice Gersh, MD

Well, I know it’s been very helpful, even recruiting a few celebrities to come out from the corners in the shadows and say, what, I’ve been dealing with PCOS. That’s helpful. I know that as part of PCOS awareness, you’ve had a color; maybe you could talk a little bit about the color that goes along with PCOS awareness and how that has been beneficial.

Sasha Ottey, MHA, MT (ASCP)

I see you have a colored feel, a teal lab, and a teal flower pot. It stands out that this color was being used to signify that this is PCOS awareness. This was happening before we formed the organization, but the majority of people didn’t know. As a part of the awareness campaign, we use teal as the color of PCOS awareness. So now you’ll see that throughout PCOS Awareness Month, anytime people are speaking about PCOS, they’ll wear the color teal or teal ribbons. We’ve had events with hundreds of patients doing walks in teal tutus or going to our PCOS awareness symposium all dressed in teal. This creates a source of unity for the PCOS community, where we are just like other causes and other disorders. A color is used to signify and unify the mission. So yes, teal is the color of PCOS awareness. You will see PCOS supporters and patients wearing teal T-shirts and teal ribbons throughout the month and throughout the year, which signify that this is a serious condition that requires support, requires attention, and requires us to work together to ultimately find a cure.

Felice Gersh, MD

Well, it happens to have been one of my favorite colors. That worked out well. It’s such an interesting thing to think about the intersection between politics and medicine, although it became more apparent in a lot of people’s minds when we had COVID that suddenly there was this intersection and that you utilized it to advance the cause of women. With PCOS, what about, like, insurance? I know it’s been so frustrating for so many women that things like hirsutism, alopecia, and even acne are sometimes deemed frivolous or cosmetic. Have you been working on that front at all and making any headway?

Sasha Ottey, MHA, MT (ASCP)

Yes, this is an important piece. Even when I got diagnosed with PCOS, my doctor didn’t put PCOS; she didn’t use the ICD code for PCOS. She was something else. This is because there’s a reimbursement issue for physicians. This is still a huge thing where PCOS isn’t as well recognized. There was a recent study that showed that healthcare organizations and PCOS diagnoses were far underdiagnosed. PCOS was much more underdiagnosed in medical records than we even realized. even compared to the general 10% or even four to 20%, depending on where you are. So there is an issue where PCOS isn’t being diagnosed, and insurance companies aren’t taking it seriously enough. They’re not, or the majority of them aren’t. They don’t quite recognize that PCOS connects to skin issues, that PCOS connects to mental health issues, and that PCOS connects to pregnancy issues. and so this has been a part of our awareness as we’ve been reaching out to insurance companies. We’ve been thinking that this is part of our long-term strategy to get PCOS more recognized, but also for insurance to understand the connection between PCOS and other disorders. Hirsutism is not just a cosmetic disorder. Up to 70% of PCOS patients have hirsutism. This is a medical issue, not simply a cosmetic one. There are other disorders or other instances where hirsutism management will be covered by insurance. But PCOS isn’t. It’s the leading cause of hirsutism among women. This is another area where not only is there a lack of awareness, but there’s also a lack of prioritization. 

There’s that issue in women’s health where our pain isn’t prioritized or isn’t even acknowledged. In some cases, our PCOS impacts our quality of life, health, and mental health, and insurance companies should be treating it accordingly. Yes, this is a huge part of our plan. Felice, I have to tell you that once we did start to unravel some of the issues behind PCOS as it became a bigger and bigger mountain, every time we understood why this wasn’t happening and why there was a lack of reimbursement for doctors, so this is it, but the tides are changing. The government—not only our government but other governments—is now starting to recognize that PCOS is an issue. That’s due to advocacy. That’s due to patients being frustrated and asking for change. So we had to do it in a strategic and organized way. Every year, we have PCOS Advocacy Day, where we get PCOS mentioned in bills and appropriations requests, and we even figured out that PCOS wasn’t listed on the NIH’s list of diseases. 

So how could we understand a disorder and how it’s impacting people if this isn’t listed as a priority for the world’s largest funder of biomedical research, the NIH? So we advocated for PCOS to be listed, and it just recently did make its way onto the list of diseases and conditions that the NIH studies, but now that Congress can get more information about how it’s being funded and how much funding is going into PCOS research, we can understand and have more transparency around that. Yes. We understand it’s important. PCOS spans so many parts of medicine that it doesn’t have a home. It was viewed mostly as a reproductive disorder, which is one of the biggest issues that we had as an organization: reproductive disorders are not taken as seriously as they should, unfortunately, because, of course, that’s a part of health. But PCOS is a metabolic disorder, PCOS is a cardiometabolic disorder, and PCOS is a hyperandrogenism disorder. So there are multiple areas of health where PCOS belongs. So we need all funders in multiple areas to treat PCOS as the syndrome that it is and understand that each of these pieces is an important piece of the puzzle to unravel and understand in moving the understanding of PCOS forward.

Felice Gersh, MD

What you’ve accomplished is amazing; just imagine that the NIH, the government, didn’t even have it listed. As you mentioned, PCOS spans the whole gamut of organs and systems. It could involve just about anything, and it does. How about advocacy involving others, say cousins of medical organizations like the American Heart Association or Diabetes Associations, or certain things with the dermatological society? Are you trying to link in some fashion with existing medical organizations for them to educate their groups and both patients and the physicians that are associated with those organizations about how PCOS fits into it?

Sasha Ottey, MHA, MT (ASCP)

Yes. Felice, we’ve been connecting all of the dots, so we have built multiple relationships with multiple organizations, and we’ve been doing this for quite some time. At first, there was resistance, even from the ones that made the most sense. This is why we had to chip away at the awareness issue. But now there are a lot more people reaching out to our organizations and even state public health departments. Everyone’s been much more open to meeting with us. We meet with a lot of public health organizations, so we do a lot of advocacy not just within the government but also within organizations. So we’re a part of a consortium that investigates and raises awareness around maternal health, heart health, metabolic health, and mental health. You name it, we’ve got one of our goals, and one of the ways we work is by connecting the dots around PCOS. Yes, the more awareness grows, the more governments become interested in or have to respond to Congress’s requests around PCOS, and this is based on our advocacy and the advocacy of the people who come to our advocacy days. and Felice, you’ve been a part of PCOS Advocacy Day. You’ve been on Capitol Hill with us and educated your Congresspeople and your representatives. There’s nothing like that feeling when you’re doing something; you’re using your lived experiences. You’re life, you’re using you, and in your case, it’s both your professional experience and your lived experience to educate your legislators about why this should be a priority. It’s important. 

One of the things that’s happening is that there’s now more interest or growing interest in trying to solve and treat PCOS. In almost 90 years, there hadn’t been any PCOS, FDA-approved medications, or treatments for PCOS. Now there’s interest, and now there’s a pipeline of companies that want to treat PCOS. One of the things that we want to ensure happens is that the PCOS patients and our priorities are at the core of what’s done because there have been other issues where there have been treatments for the condition. Once these treatments came out, the patient, the patients rebelled, or the patients weren’t involved in or didn’t feel like they were involved in any decision around their treatment. It’s important that anything that happens within the PCOS space includes, prioritizes, partners with patients, listens to our experiences, and listens to our priorities, which is why we’re leading the patient-focused drug development meeting, where the FDA will listen to patients and their lived experiences, listen to what they want for treatments, and listen to their priorities. So this is happening this year in November. It’s an important meeting, the only one of its kind. Why is this important? Not because if their treatments are going to be happening for PCOS patients, the PCOS patients need to be the ones who are directing and directing any innovations around PCOS management. PCOS patients should be at the core of anything that’s done for them.

Felice Gersh, MD

That seems so basic, and yet it’s not being done in most cases. That is fantastic that you’re moving it in that direction. My goodness. Who’s supposed to benefit—the big pharma or the patient? Hopefully, it could be both, but the patient has to be in the equation. We, our compatriots in this field, keep using the term PCOS, polycystic ovary syndrome. I know there’s a group out there. We know these people, and they want to change the name. I have to have you chime in on what you think about this and how it is supposed to help women who are dealing with this problem.

Sasha Ottey, MHA, MT (ASCP)

I’ll start with yes; I agree. The name does not fully describe what PCOS is; that goes without saying. Yes, not everyone has a polycystic ovary. PCOS is not a reproductive disorder for everyone. Yes, I agree with that. That’s probably the only thing that I agree with them about. Because if you look at the history of PCOS and the names that have been given, PCOS has had three names. Stein-Leventhal syndrome: He’s got polycystic ovary disease, and now he has polycystic ovary syndrome. We had to get it right three times. Now, at this point, yes, PCOS, not everyone has polycystic ovaries. There’s still not an understanding of PCOS that’s required to ensure that the name will never need changing again. If you change it to reproductive anything that isolates some people, you cannot name this disorder by its features because, as we mentioned before, PCOS spans multiple organ systems and multiple areas of health. So renaming a condition when you still don’t have a full understanding of what it is is a waste of time. It’s a waste of money. It will be an expensive undertaking. It will take years and cause so much confusion. There will be so much confusion when the name is changed. But importantly, and this is from our perspective, we have been involved in efforts to change the name before, where we voted against it because we were asking for an impact assessment. How is changing the name going to impact a patient in Bangalore, India? In Montego Bay, Jamaica, or in Colombia? How is the name changing in South Carolina, United States? How is that going to impact patients around the world? What does changing the name of a disorder mean using features of the disorder that there is infighting about? A gynecologist and an endocrinologist will want to treat different aspects of PCOS. They’ll view PCOS through different lenses. The thing is, we as patients said we did not want this, but the group that’s that’s that wants to change. It keeps saying that patients are asking for this. Which patients are asking for this? We know they’re the one group that’s asking for this. But why ignore the other patients who are not asking for it? We’re telling them that this will have a detrimental impact on advocacy and the work that we’ve done. This will create confusion. This will create confusion within, and this will not only set us back. There are other patients and many organizations that feel the same way, and doctors and other health care providers—so many of whom we’ve spoken to—think this is a terrible idea. This is a terrible idea because it’s too late. It is too late for you to change the name. There’s so much advocacy and awareness around PCOS now that why would you want to create confusion and set us back years in advocacy?

Felice Gersh, MD

Well, I echo and put 25 exclamation points because talk about the antithesis of advocacy just when you’re trying to bring awareness to a certain condition that has a certain label or name, and then you want to change it so that it’ll just be even more confusing. If someone goes to PubMed or Google Scholar and they want to do research, what are they going to use as their buzzwords? How are they going to find research on a topic or, like, find you if they keep changing the name? It’s pointless. As you said, it is a total waste of time and energy and misdirected in every way. There are so many diseases that have names that have nothing to do with the symptomatology or etiology, like diabetes or Alzheimer’s. Hashimoto’s has people’s names, so what is even going on in these people’s minds? These are some of the people who are the most prolific at doing research. It’s weird. I agree. I’m with you and everyone out there who’s hearing this. Do whatever you can to say this to anyone who will listen. Do not change the name. That is not where the energy should be directed. Directed at all the things that you’re doing, bringing awareness, therapeutics, research, all of that. You mentioned Bangalore, so you’re a global organizer. How do you reach people around the world? We know this is a worldwide epidemic. What’s going on in the world, and how do you intersect with that group out there?

Sasha Ottey, MHA, MT (ASCP)

One of the things that we do well is that we started World PCOS Day on the 1st of September to kick off the month. The reasoning behind this is that PCOS is a global issue. PCOS impacts people everywhere in the world. and these people have different resources based on where they are. We all have. But one of the connecting threads is the story. Most of us, whether you’re in Kenya, Jamaica, the UK, or anywhere, have the same story. We were told to come back to see me when we wanted to get pregnant or something similar. So this is one of the things that we decided to do with PCOS Day, which is to connect with others around the globe. Other organizations help support other organizations in their efforts around the globe. So that’s what we’ve done. We’re just doing a study in Trinidad. We’re working with someone in Trinidad and Tobago, Jamaica. We have partners in India and France all over the world because this is a vast mission. It’s like we said; it spans so many areas of help. But we need to empower patients all over the globe. We need to empower organizations all over the globe. Whatever we can do to help some organizations in Kenya or what they can do to help us with strategies for advocacy, we do. So that’s how we connect. That’s how we help each other and support each other because it’s a global issue. Patients from all around the globe feel the same. They feel isolated there. There are issues that someone in Kenya or Nigeria may have that if we can help with any education or any advocacy, we’ve signed letters to governments. We’ve done a lot. We believe in supporting each other and listening to and respecting people and their unique experiences. We do know that while the symptoms may be similar, our experiences can be different in some respects. So that’s based on whatever constraints we may have, where we are, and around the globe. We work in partnership with organizations. So that’s what we are. We’re going to continue to view this as a global issue and help to empower people all around the globe and make them feel more empowered because empowered patients are the ones who drive this forward and are the ones who create change. We see it all the time. People feel so much more empowered when they can use their stories and when they have organizations that are having an impact on their communities. Yes, anyone, any organization around the globe, we welcome partnerships as long as we have similar missions and similar intentions. Those are the only people we can work with because we don’t have a vision; we have a mission, and we will continue to work along those lines. But yes, we do not want to be distracted by noise. organizations that have the mission and the priority that PCOS is treated as a public health priority. Yes, let’s work together, and let’s use our voices together to amplify our message and create the change that we need. Ensure that PCOS is treated as a global priority. I can see this happening. I can feel it. Patients are more empowered. This year, our theme for September for PCOS Awareness Month is the Empowered Patient and all the things we can do together when empowered patients work together, just like you and I are doing today.

Felice Gersh, MD

Well, your mission and your advocacy are just solid gold. It’s so amazing how that light bulb went on in your head that day, and look where it has led around the world because women around the world must be dealing with PCOS, and it’s like, we’re all part of this. Every single one of you out there who has PCOS, you have sisters all over the globe, and so many out there hearing this message want to become advocates and want to be part of this mission. Just as when I learned about your organization, it’s like I’m in. Everyone out there who says I’m in, how can I work with you and your organization to better the lives of women in the U.S., not only in my state but also around the world? What’s their next step to working as an advocate with you?

Sasha Ottey, MHA, MT (ASCP)

Reach out to us, at pcoschallenge.org if you’re if you wanted to find out this is after PCOS awareness month; however, pcosawarenessmonth.org, pcoschallenge.org. Those are websites you can reach out to. We are busy months, so if it takes a while for us to get back to you, don’t mind and continue reaching out because one of the things that is common across all organizations, all patient organizations, is that we are mostly volunteer-run because the funding for PCOS, for PCOS research, for PCOS support, PCOS, anything around PCOS, the funding just has not been there, and that’s why we’re continuing to work to ensure that PCOS is a priority and that organizations can be built in and grown around this mission. So yes, patient organizations reach out to us and other organizations that want to support our mission. It’s important that, if you’re a stakeholder or if you’re a company that believes in the mission, PCOS should be a public health priority. Reach out to us at pcoschallenge.org, and hopefully, we can have a positive impact together.

Felice Gersh, MD

Well, it’s so important to emphasize that you are a nonprofit organization and that you would welcome donations from both time and money companies that can work in some joint fashion for the good, the overall good of their women employees, and so on. I’m sure many of them have PCOS. That’s important because, without organization and missions like yours, all that you’ve accomplished would not have come to pass. It’s so vital to understand that you are the interface between all of us women with PCOS and all the powers out there that control the research dollars, the insurance coding, all of the things that go into helping to do the research and the support systems that you’re like for the public health issues involving PCOS. I thank you from the bottom of my heart for all that you have done and for your self-sacrifice. I know that. Hours and hours of nonstop work have gone into creating this advocacy organization. I can’t thank you enough for joining me for the summit and for spreading the word. Just keep it up. I can appreciate whatever we can do to support you while you are here.

Sasha Ottey, MHA, MT (ASCP)

Dr. Felice, thank you so much for all the time and effort we’ve spent traveling around the world together. We’ve educated people in distant parts of the world together. We’ve done a lot of this advocacy and education together. So it requires that we want more people to be like you and listen to patients. You listen to the patients. You’re a patient with PCOS, but you also have patients with their own unique needs. You listen to them, and you show up to advocate for them. That’s going above and beyond. We welcome more physicians like you and more healthcare providers, and there are plenty of them out there. But we welcome more people like you to join our efforts to reach out to us and just work together for the greater good of PCOS patients everywhere. Thank you for having me at the summit, and thank you for continuing to spread your knowledge and now providing this platform for others to do the same. Thank you so much for having me.

Felice Gersh, MD

Well, this is a mutual admiration society. And I can’t tell you how much I look forward to continuing our journey together for advocacy for women with PCOS. Thank you so much. 

Sasha Ottey, MHA, MT (ASCP)

Thank you.