On Making PCOS a Public Health Priority - Women's Health Series with Sasha Ottey

Episode Transcript

[00:00:11] Claire: Is the healthcare system failing women? What do you think?

Welcome to a brand new episode of Narratives of Purpose. This is a five episode special series, which is dedicated to female founders advancing women's health. Featuring my conversations with the Voices for Change panellists at the first AI for Life Summit, which took place in Geneva, Switzerland, in December 2023.

The Importance of Women's Health Advocacy

[00:00:40] Sasha: Five years ago, PCOS was not that well known globally, and it's like endometriosis, like fibroids, you know, and we work together with other organisations in these disease areas as well, because we're all in this together and suffering in silence is no longer going to be the case. We're too fed up to suffer in silence.

[00:01:08] Claire: In this episode, I speak with Sasha Ottey, Executive Director of PCOS Challenge, the National Polycystic Ovary Syndrome Association. PCOS Challenge is the leading non profit support and advocacy organisation advancing the cause for people impacted with polycystic ovary syndrome globally.

Introducing the Host and the Podcast

[00:01:30] Claire: If you are listening to Narratives of Purpose for the first time, let me introduce myself.

My name is Claire Murigande. I am your host on this podcast, which is all about amplifying a social impact. I bring you unique stories of change makers, stories of people who are contributing to make a difference in society. By showcasing these individual journeys, I would like to inspire you to take action.

Please take a moment to rate and review our show. This will help other listeners find narratives of purpose and further amplify the stories of impact that we share.

For now, listen to Sasha talk about navigating the healthcare system and advocating for women's health.

Sasha's Personal Journey with PCOS

[00:02:19] Claire: So, Sasha Ottey, it's nice to meet you. Welcome to the podcast. And. I'm really happy that you accepted to join me for this conference, AI for Life. And you're a part of the panel about women's health and patient experience. So first of all, can you just introduce yourself briefly and then walk us through your organisation?

[00:02:37] Sasha: Thank you so much for inviting me to be a part of this lovely podcast. My name is Sasha Ottey. I'm founder and executive director of PCOS Challenge, the National Polycystic Ovary Syndrome Association, we're based in the U. S. Um, I founded the organisation after my own diagnosis with PCOS, polycystic ovary syndrome, and felt dismissed by my healthcare team.

I went because I had, uh, irregular cycles. Went to an OBGYN, she ran all the tests. You know, did the ultrasound and, um, diagnosed me with PCOS, but then she also told me, don't worry about not having your periods. Plenty of women would love not having their periods, which was the very thing I was concerned about because as a, also as a scientist, but as a woman, you know, it's a natural part of life to, um, have a cycle every month. Um, so I felt a little dismissed. She also told me to come back to see her when I wanted to get pregnant. And this was in my twenties. I was, that was not even on my radar for my life, right? And so my concerns were how to, how to. Keep healthy and how to have a regular period.

But she prescribed me birth control pills and, um, told me to come back to see her, referred me to an endocrinologist. Who then told me to come back to see him in six months after I've lost weight, um, without having any support, really in my initial visit, I had one pamphlet on PCOS that I read within five minutes or less. That was it. And so I felt kind of left to my own devices. And this is something that you'll hear from PCOS patients and patients of other disorders or conditions that mostly affect women is that either we're not believed, we feel dismissed. And then after I got that diagnosis, that became the defining moment in my life because I did research and found out that there were millions of other girls, women, other people who felt similar or had even worse experiences that are sometimes life threatening. So I, um, founded the organisation with the intention to increase education for PCOS patients, for healthcare providers. But then also to be the source of advocacy for all of us to change the future for everyone with PCOS.

The Global Reach of PCOS Challenge

[00:05:17] Claire: So you said it was a national organisation. You only address audience, I would say, or people in the U. S., or is it more international?

[00:05:24] Sasha: Well, it's U.S.-based. But we also have a global reach. We have patients from all over, I think, over 45 countries, um, in our membership. The strategy, our strategy, is a global one because this is a global issue, right? There are women all over the world, um, who are experiencing this and who may not know that they have this and who may not have any resources.

So we started World PCOS Day on September 1st in an effort to, one, have kind of global partners, uh, of patients and other stakeholders. Just working together or coming together to not feel so alone and learning more, et cetera. But then also as a strategy to elevate the profile of PCOS globally, which has been really successful. We started this about six years ago and also got September officially designated as PCOS Awareness Month.

[00:06:28] Claire: Oh, wow.

[00:06:29] Sasha: And so every September, there's a lot of activity around PCOS globally. And that's something that we're very proud of and very happy that it's taking off in such an exponential way, right?

Five years ago, PCOS was not that well known globally. And it's like endometriosis, like fibroids, you know, and we work together with other organisations in these disease areas as well, because we're all in this together and suffering in silence is no longer going to be the case for women. No, we're too fed up to suffer in silence.

[00:07:05] Claire: I totally agree with you. And I can say as well, being myself an endometriosis patient and even at the time I was diagnosed was quite early. But you know, the whole journey is difficult because, as you say, there's not enough research. You are treated by people who don't know exactly what to do about it. So the medication there is not necessarily treating the origin or the core of the problem, rather the symptoms. Not even talking about the side effects of everything, you know.

I think it's quite impressive that you've been able to designate a day, PCOS World Day, and also have September as a PCOS month. So that's absolutely amazing. Do you have any other, I would say, impact or highlights that you'd like to share that you're proud of, things that you've been able to move the needle even further?

The Importance of Patient-Led Research

[00:07:51] Sasha: Yes. So we now do our own research, patient led, patient focused research on PCOS, um, but we also work in partnership with other researchers because we know that research is the core of what will drive innovation and, um, solutions. And we also encourage PCOS patients to participate in research. And for many good reasons. There's sort of a mistrust, right? If we're being dismissed and not believed by our doctors, why would we, you know, kind of participate in research? So that's one aspect where it's really important that we are more empowered now to drive change for the future and also more empowered to drive innovations.

So many of the innovations that are in the pipeline are being led by people who are personally impacted and that's how women are like “You're not going to hold us down”, right? We're going to find our own solutions. And it's interesting, we were having a conversation last night at dinner with the other panelists, and this came up that much of what's being led, right, are by women who are impacted by these disorders or these conditions, and We're sick, or we're not well, or we need to be taking care of ourselves, but we're kind of busting our, you know, butts to drive change because nobody else is going to do it. Nobody else is going to care as much. Um, but we do need the support of those who can help us to get to the end line.

Our, um, PCOS Challenge's vision is that PCOS is treated as a public health priority. Previously, before we started doing any sort of legislative advocacy, PCOS wasn't even listed in any legislation. So that drives very little funding for research. And so We have to work and kind of be there, uh, and keep showing up and keep advocating for this to change. And so we need to work together. And like I said, with other people who are experiencing similar things, because working as an individual is very stressful, but working together, I find that we're more successful at driving change at a quicker pace.

[00:10:26] Claire: And speaking about advocacy and support. So you are going to be part of this panel today at the summit. What are your expectations or your goals I would say? You know, what is your objective when being on this panel for the audience that's participating?

[00:10:39] Sasha: Understand that even some of the other panels, I don't hear too much being mentioned about working with patients. We are kind of your end product. We're your target audience, and we're the ones who can help you to make the best product, best innovations, to solve our problems. So I don't understand why working in partnerships with patients from the ground up is not a part of everybody's strategy as a product developer, as an investor, patients will help to drive change because we're motivated. We're more motivated than you are, right? As the person who is creating a product that will supposedly help to solve our problems.

If we're not at the table, if we're not working in partnership with you to create the best products to solve our problems that we're so motivated to solve, there are going to be pieces that you're missing that you don't have the perspective on because you don't have the lived experience.

So I do want to drive home that patients are One of your most, if not the most important partners in anything involving creating solutions for patients. But I'm very excited that there's now so much interest in creating solutions for women and in women's health, right? Women have to be the drivers or the partners in helping to create the solution.

[00:12:13] Claire: You know, when you just mention it like that, it's a no brainer, right? Why did we get this far without including the patients, actually, you know, that's the big question. And it was also said in one of the sessions earlier, you know, talking about AI and the product. That you need to start with the consumer. So this is exactly the same thing. Start with the patient and involve them from the beginning in designing your product.

[00:12:33] Sasha: Exactly. And it should be a no brainer. It should be a part of everyone's strategy. It should be a part of every funder's strategy. You know, because that will only make your product more successful, is if you're designing it in the way that the end user needs or values.

The Future of Women-Led Innovation

[00:12:52] Claire: And so to this point, what is your point of view in terms of the state of, you know, women led innovation or patient led innovation? Because this is obviously a gap like we just mentioned. And you know, what do you see in the future? I would say maybe the new future. Today we're at a conference speaking about AI, it’s about technology. Maybe there are other things that are not tech relevant that we'd probably need to start doing before going into AI, so what is your outlook?

[00:13:17] Sasha: The outlook is positive because, as I mentioned before, Women, and it's not just PCOS, but PCOS has been considered kind of this condition that's been under the radar. That's not been in any major conversations, even though it's driving so many of these comorbid conditions that are life threatening. We hear about heart health. PCOS is a cardiometabolic condition that impacts heart health. Women with PCOS are three times, or more, three to six times, more likely to develop endometrial cancer and other cancers.

So PCOS is kind of an opportunity for prevention. You know, we hear a lot about prevention and we hear a lot about trying to solve, um, the big issues, but we do need to look more upstream. As you mentioned, you got diagnosed earlier. I got diagnosed in my late twenties with PCOS, but I'm sure if we look further up our lives are when we were younger, there were multiple opportunities to get a diagnosis or multiple opportunities to get interventions earlier, even if the interventions weren't the best. There were opportunities for starting our trial and error journey earlier, right?

So, women, uh, who have lived experiences understand these perspectives, understand our specific needs and understand the challenges that we have and that we've dealt with. So we're the natural solution, right? Whether we're the ones who are the actual innovators and the actual having these companies that are, um, with these solutions, or as, as we mentioned a little bit earlier, the ones to partner with, if you want to solve a problem, you need to find people with lived experiences to work with you on designing from the ground up, uh, the solutions for the problems, because, um, with a condition like PCOS that is so heterogeneous, You know, you need to understand the full spectrum of the disorder. Even if you're focusing on just one part or one symptom, just understand the disorder, understand the conditions, understand what you actually need and what's valued by the patient.

So I have a lot of hope for the future because we're no longer going to be silent. Because a lot of these issues stemmed from us being silent, um, hiding, and we didn't even speak about periods. We didn't even know what was normal from what wasn't normal. But that's changed. The climate is changing. We're at least 50 percent of the population and we're responsible for so much of what happens in life while our lives are being severely impacted by physical and mental health disorders. And it's not fair and we're not gonna really tolerate that. Uh, too much longer. It feels like a pivotal time in the space of women's health. There are always going to be challenges and always going to be, um, laws and things that feel like they're attacking women. That's always going to be the case, but we're much stronger and much more efficient at circumventing some of these challenges that we have because we're women and we're brilliant.

[00:16:38] Claire: So I look forward to listening to the panel and thank you for sharing your thoughts on the podcast.

[00:16:42] Sasha: Thank you so much for having me. I look forward to listening and being a part of other things that you do, hopefully.

The State of Women's Health within the Healthcare System

[00:16:51] Claire: The healthcare system has indeed been failing women. Did you know that historically, medical research has often excluded women? They entered clinical trials only in 1993. 80 percent of the drugs removed from the U. S. market between 1997 and 2000 were withdrawn because of side effects that occurred mainly or exclusively in women. Women's health has been considered a niche area. Mind you, women account for roughly 50 percent of the world's population.

That being said, things are starting to change. More and more women are advocating for their own health needs. They are creating impactful solutions with proactive and inclusive approaches. I truly believe that patients' lived experiences should be at the core of healthcare innovation. And let's not forget that there is a huge need to fund startups led by women. In fact, according to research by the European Investment Bank, in the U. S. alone, just 2 percent of investments in startups are for women-led ventures, although 38 percent of startup founders are women. Staggering numbers, right?

Closing Remarks and Further Resources

[00:18:04] Claire: If you're curious to learn more from some of our previous guests addressing these issues, check out episodes 22, 38, 42 and 63 focusing on women's health. You can also check out episodes one, 11, 33 and 60 discussing the gender funding gap and impact investing.

Thank you so much for tuning in today. I appreciate you taking the time.  That was my conversation with Sasha Orti. At the first AI for Life Summit, you'll find more information about the PCOS challenge on their website www.pcoschallenge.com. Be sure to listen to the other episodes of this special series featuring my interviews with the four panellists of “Voices for Change: women's health and patient experiences”.

If you enjoyed this episode, please share it with a friend, with a colleague, or even with a family member. And don't forget to leave us a review on our website using this short link www.bit.ly/narrativesofpurpose. You can connect with us anytime and follow our activities through our LinkedIn and Instagram handles. at narratives of purpose podcast. Until the next episode, take care of yourselves, stay well and stay inspired.

[00:19:27] Claire: This episode was created in collaboration with Stephanie Trang at Artefact Open Innovation Switzerland. This podcast series was written and hosted by Claire Murigande. This podcast was edited and produced by Tom Evan Hughes at Rustic Studios.