PCOS Advocacy News & Opportunities [Podcast] - PCOS Diva
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PCOS Advocacy News & Opportunities [Podcast]

PCOS Podcast no. 114 PCOS Advocacy“The lack of research has translated to the lack of knowledge of PCOS in the general public and in the medical community.” – Sasha Ottey

Sasha Ottey is at the forefront of PCOS advocacy. She and her non-profit organization, PCOS Challenge, lead the way in furthering the causes of research funding, patient and doctor education, and community awareness. If you are wondering what is happening in the world of PCOS and how to get involved in a large or small way, tune in as we discuss:

  • PCOS Challenge’s mission and offerings
  • The PCOS Diva/PCOS Challenge Confidence Grant and a new one coming soon
  • Advocacy Day in Washington DC & how to be involved there or at home
  • Opportunities to get involved and volunteer for PCOS Challenge
  • Upcoming events in cities around the U.S. including PCOS Awareness Weekend on September 20th in Orlando

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Mentioned in this podcast:

 

Full Transcript:

Amy:                                    Today I’m going to be talking to Sasha Ottey. She’s the founder and executive director of PCOS Challenge. And PCOS Challenge is the National Polycystic Ovary Syndrome Association. If you have not heard of PCOS Challenge yet, you need to know about them. They serve over 50,000 members. They’re the leading patient support and advocacy organization for women and girls with PCOS, so I’m so thrilled to have you here, Sasha.

Sasha Ottey:                      Thank you so much, Amy. I’m so excited to be here and thanks for having me on the PCOS Diva podcast.

Amy:                                    Oh, you’re so welcome. You know, Sasha, you’re one of the people that I really admire. I know when I first started trying to find answers for PCOS, there was one organization out there, the PCOS Association, which has now, sort of disbanded and when that happened, I feel like you picked up the gauntlet, and we’ve known each other now for quite some time, and it’s been amazing what you have accomplished. I just want to thank you for all the work that you do and you are a woman with PCOS so we both know how hard it is to take care of ourselves and also do to the work that we do to try to help advance PCOS advocacy and awareness.

Sasha Ottey:                      Oh, thank you so much, Amy. You know, I think a lot of women in our position who are women with PCOS and at some point before, during or after we got a diagnosis or even if you are woman with PCOS or a person with PCOS who hasn’t gotten that diagnosis, we felt kind of alone, you know? There’s this sense of loneliness, feeling that we’re the only ones dealing with what we’re dealing with and then at some point, want to help ourselves and help other people. So, that’s why I started PCOS Challenge and why you started PCOS Diva and other people and advocates in the states are where we are now, because we’re in this place where we know that we can’t do it alone and we know that working together with our various experiences, working together will help us to move the movement forward and advance the cause.

So, I am truly excited to speak to you today because you’re a woman with PCOS. You understand, even though we may have varying parts of the syndrome or varying experiences, you do understand how difficult it can be and how much we want to kind of give everyone that platform to find their peace with the syndrome and find ways to support themselves and others.

Amy:                                    I love how you said find their peace with the syndrome. I know a lot of women listening are probably newly-diagnosed or haven’t really heard about PCOS Challenge and the work that you do. I’ve had you on the podcast several times at this point. But, today, I want you to talk to us about all of the exciting things that are happening in 2019. There’s lots of events around the corner and I want you to let everybody know, but first, maybe you could tell listeners what you do … What are the things that are offered through PCOS Challenge?

Sasha Ottey:                      Thank you, Amy. I started PCOS Challenge after my own diagnosis and the feeling dismissed by my doctors and not having access to the care that I needed. I felt alone and that this was out of my control, and I don’t want anyone else to have to feel like that. Speaking with women and parents of girls with PCOS and people from all over the world, we have very similar experiences, where one, most of us at some point didn’t have the resources, whether it was knowledge about the syndrome or the proper treatment and, Amy, as you know and I know, there’s no one treatment or no one method that works the same for everyone. So, there’s a lot of trial and error involved and knowledge truly is the key to move forward. And so, PCOS Challenge was born from this desire to help others, but also help others educate themselves about the syndrome. And so we partner with knowledgeable researchers, and physicians, and other patients who are knowledgeable in this space to provide programs.

And one of the programs that we’re proud of that happens every year, annually, is the PCOS Awareness Weekend. And this year, in 2019, it’s coming up. We’re doing it in Orlando, and so this year’s a little different because we’ve added our inaugural gala called “Rise to The Challenge Gala.” So, that’s happening in Orlando on September 20th. Our PCOS Symposium, which is where we will have knowledgeable experts and opportunities to meet other people who are dealing with PCOS, hear other people’s stories, and leave with practical advice and steps to change your life that day and learn more about the syndrome and how it impacts you as an individual and also connect with members in the healthcare space who are knowledgeable about the syndrome. So, it’s a really, really exciting event, where there are usually hundreds of mostly patients and supporters of patients and also, healthcare providers.

And then the third event of that weekend is the PCOS Challenge 5K. Every year, this is an opportunity for hundreds of patients and supporters to get together and not only learn more about the syndrome than they ever had before, but also meet other people who are dealing with the same thing, and learn how to get involved and how to advocate for yourself and be a part of the PCOS awareness movement. So, it’s really exciting. We’re really excited about the gala, where we’ll be highlighting members of the community who are really doing some great things to help people in the PCOS community. So, this weekend will be an opportunity for people to learn more about PCOS Challenge, learn more about PCOS, and learn more about how to get involved.

Amy:                                    It really is a wonderful event. I think this will be my fourth year attending and I can tell you that it is such … Well, I always come back just on a high because it’s such a positive environment. There’s so much good energy, and it’s so great to be a part of this sort of sisterhood, of sorts?

Sasha Ottey:                      Yeah.

Amy:                                    And we really come together and share our experiences and we learn from each other and support one another. And I think, yeah, there’s a lot of friendships that are formed at this event, too. Because, again, you had mentioned at the beginning of the podcast that sense of feeling that you’re all alone in this, especially if you don’t have a lot of support with friends and family in this journey. Come to the event and come to the weekend. There’s so much camaraderie, especially at the race, and I’m very excited about the gala. I can’t wait to go dress shopping. But the race or the fun run/walk, it’s going to be at the same place it was last year?

Sasha Ottey:                      Yes, it’s beautiful Baldwin Park. Oh, my gosh, it’s so gorgeous.

Amy:                                    Yeah, right around this really pretty lake and there’s just so much conversation going on, especially if you walk like me and there’s so much support. If you’re looking for a place where you can feel connected with other women with PCOS, you have to come to the PCOS Challenge weekend.

Sasha Ottey:                      Thank you, Amy. And we’re also doing … We have a lot of events this year. We have 12 total, so your listeners can go to pcoschallenge.org to find out more about the locations and what we have going on. So, we’re doing the weekend in September, but we’re also doing other 5K events around the country. We’re going to be in Detroit and Philadelphia in July. In August we’ll be in Long Beach, California and in September we’ll be in Atlanta, Orlando and so throughout the year, all the way to December, we will have events and opportunities for patients and providers and supporters of the PCOS community to come out and really celebrate that there’s opportunities to come together and increase awareness, which is so much needed. So, it’s just an empowering positive event, because that’s what PCOS Challenge is about.

There’s so many challenges that we deal with, with this syndrome, but here is an opportunity and a unique opportunity that is not always afforded to us as PCOS patients, but a unique opportunity to come together to support each other and also to raise funds for PCOS Challenge, which is nonprofit, that’s really dedicated to the long-term positive advancement for the PCOS patient.

Amy:                                    Well, I know when I would promote the events, I know it was in Atlanta several years ago and now in Orlando, people would often say, “Well, can’t you bring something closer to me?” And you’ve done it this year with all of these other venues, so I really encourage women to take advantage of those other city-held events. And there’s something I just wanted to bring up, too, is that you’ve made it really affordable. It’s not a lot of money to actually attend the symposium weekend, and I know you have a really reasonable room block rate, as well?

Sasha Ottey:                      Yeah, you know, one of the things that’s really, truly important to me, personally, is that everything we do is accessible because that’s one less challenge for the public, for patients. It seems as though most of everything that we have to do to manage PCOS or try to live a healthier life with PCOS is really, really financially taxing and so one of the things … Even though we encourage people to come from all over the country, the PCOS Awareness Weekend is generally truly affordable for patients. We heavily depend on sponsorship to cover the majority of the cost of putting on the event and have the fee to cover the food costs for patients or attendees. So, it’s really important to me and to our organization that we have an event where people from all walks of life and, some of the people who need the information the most, is able to access the information and be a part of the event.

Amy:                                    So, again, I just really want to encourage women to look and listeners to look at this event as really an act of self-care and if you follow PCOS Diva, then you know how important self-care is to managing PCOS and this absolutely is a place where you can gain some valuable knowledge and really take care of yourself while you’re doing it and have a little getaway break. I know that’s something that I’m really looking forward to.

Sasha Ottey:                      Yes, I’m really excited about some of the locations. I know we’ll get to be in some sunny areas, areas surrounded by water, areas with really phenomenal monuments. And even in our nation’s capital, we’ll have a walk in October, so we’re really, really excited to be able to get people to run or to be at the sea of teal raising awareness for PCOS across the country in areas where we’ve never done this before. So, it’s truly, truly exciting.

Amy:                                    Well, speaking of our nation’s capital, the PCOS Challenge has been doing a lot of work in the nation’s capital, trying to make PCOS more of a nationally-recognized health condition and I was hoping that you could speak to us about some of your efforts?

Sasha Ottey:                      Yeah, I think most of us know that we may have a lot of challenges with even people around us knowing what PCOS is. There’s a huge awareness issue and in my work as executive director of PCOS Challenge and working with researchers and clinicians, we observed that one of the biggest reasons for the lack of awareness was the lack of research dollars that gets allotted to PCOS research and how does research get funded. So, the National Institutes of Health, NIH, is the largest funder of biomedical research in the entire world. But, PCOS Challenge and other PCOS world-renowned researchers, we found that PCOS research gets less than 0.1% of the NIH budget. And for a condition, that’s one of the most common human disorders. So, there’s this disparity there regarding how PCOS research gets funded, how much PCOS research gets funded, what type of PCOS research gets funded. All of that translates to how much knowledge there is, how doctors get trained, and what medical resources there are.

So, the lack of research has translated to the lack of knowledge of PCOS in the general public and in the medical community. And PCOS hasn’t even been listed on any of the national calendars. So, they’re awareness month for diabetes, for cancer, for heart disease, but PCOS was never listed on any awareness calendar for the United States. And so we know PCOS Awareness Month had been celebrated in September, yet it wasn’t officially recognized by our government and PCOS Challenge decided to change this. So, we headed to Capitol Hill and reached out to get a representative to sponsor a resolution. We worked with them on writing a resolution to recognize the seriousness of PCOS and September as PCOS Awareness month.

So, this is really important because most of the conditions that have awareness campaigns going on, we know all about breast cancer and cancer in general, just because they are prioritized by our government, that’s one of the reasons and with PCOS and how pervasive it is, we feel, we know that PCOS needs to be a bigger priority in our government and with research. So, we got a sponsor, representative David Scott, to introduce the resolution in 2017 and 2018 and now 2019 and also senators, David Purdue and Elizabeth Warren did the same, and it unanimously passed in the Senate and that was huge. Why are we still doing it? We kind of need to do this a few times and continue doing it to keep on their radar, and also we’re doing other things in terms of having our representatives reach out to the CDC and the NIH to ask them about what they’re doing with PCOS.

So, it’s going to be a long-term effort, but the more we build this space of advocates and awareness on Capitol Hill, the more you’ll see a greater transition into more access to research funding and dollars for PCOS and also, one of the things that we’re aiming to do is to get the Centers for Disease Control and Prevention to do an awareness campaign for PCOS. So, that was a mouthful, but there’s a lot going on in terms of building this awareness on the Hill. We also built a PCOS Caucus, which is an identified group of advocates on the Hill who are your representatives on the Hill, so the more they’re aware of how PCOS impacts you, as their constituents, the more willing they are to educate their peers on the Hill and really fight for us and fight for greater awareness, education and, ultimately, we hope, a cure.

Amy:                                    Well, I had the privilege of being able to go to the 2018 Advocacy Day and let me tell you, that was one of the most empowering experiences I’ve had around just kind of advocating for PCOS and speaking with both of my senators and my representative and people were very open and receptive to learning more about PCOS and they were very supportive and it was just such a … I have never been in the recesses of the Capitol and got to ride the senate subway train. It was just really a thrilling experience, and I encourage listeners, if this is something that you’re interested in, to absolutely attend one of the annual Advocacy Days and, Sasha, do you have a sense of when it will be for 2020?

Sasha Ottey:                      It will likely be in March 2020. But, everything I speak about today, you can go to pcoschallenge.org. You can go to the contact form and reach out to us there and even join a waiting list for us to announce to you when we have some of these events coming up. So, Amy, I think this is something that people in the general public who, most of us don’t know how to reach out to our representatives and senators and have never had the opportunity to reach out with a cause that’s so important and near and dear to our hearts. Before PCOS Challenge started doing our work, PCOS has never been mentioned in any major piece of legislation on Capitol Hill, so if our members of Congress doesn’t know that this exists, then it will continue to be ignored. There will continue to be a lack of resources. We’ll continue to go years and even decades without getting a diagnosis or treatment. So, it’s really important.

And I think, clearly, clearly, from what I’ve witnessed at our Advocacy Days on the Hill or our briefings on the Hill is that patients are truly fed up about not being heard, not being listened to, not being believed. And this is the opportunity to proactively take a stand that this is unacceptable for a condition that’s as pervasive and impacts so many aspects of our lives to go ignored. So, it’s truly an empowering event to know that you’re there taking a stand and affecting change, which is what we’re all doing, so I’m really proud of people like you. And this year we had more researchers and other physicians and nurses and registered dietitians and health … Just a lot of people who were both patients and healthcare providers or patients and their partners.

It’s truly, truly great to see the growth of this movement and just people who are impacted by PCOS are now beginning to understand that they need to take this opportunity and will work alongside PCOS Challenge, support PCOS Challenge, because we’re trying to ultimately, what we all want, is for each of us to be listened to and for us to have the appropriate resources to live happier and healthier lives, and I think we all deserve that.

Amy:                                    Oh, we certainly do. I wanted to call attention to, for those that can’t physically travel to D.C. for Advocacy Day, you have resources, templates, on that Advocacy page, which we will link to in the show notes, where you can easily and quickly write a letter to your legislators as well so you can do it just from the comfort of your own home.

Sasha Ottey:                      Yeah, absolutely and thanks for sharing that, Amy. Of course, most of this is happening during the week when most people are at work, but this is also when our legislators are on the Hill. So, of course, many people won’t be able to be there in person, but you can still share your voice. You can still take part by writing to your legislators and we hand-deliver or email them on your behalf to your legislators. So, I think that this is truly kind of a pivotal time in the PCOS community, where we’re now having access to opportunities to use our voices, where 20 or 30 years ago, this was non-existent. And I have to reiterate how proud I am for … This movement happened relatively quickly, so it’s within the last one to two years that this has happened and people are embracing this opportunity because most of us understand how important this is.

Amy:                                    Well, I give you so many kudos. Again, you’re one of the ladies that I admire the most for all the work that you’ve done. Before we go, there’s two other things I wanted you to touch on, so I have to give a shout out to the PCOS Challenge PCOS Diva Confidence Grants. Grants are something that’s important to PCOS Challenge and I was wondering if you could talk a little bit about what they are and how they can help women with PCOS?

Sasha Ottey:                      Yeah, Amy, and this is something I talk about wherever I go because this is such a huge thing for our community. This is something that I’ve the PCOS Challenge with the plan to give people access to services that just aren’t available, what insurance doesn’t cover or just insurance coverage is either lacking or not enough. So, one of the things that Amy when we were speaking a few years ago, maybe at this point maybe four years ago, three or four years ago, when you reached out to us because you wanted to give back to the community, more than you already have with PCOS Diva, but you are this really kind and thoughtful soul, who wants to keep doing more to help the community, so thank you for that. I always speak favorably of you and share how good your heart is.

So, this was the opportunity. We identified areas where, from my personal experience and for other people’s experiences where there’s just such a lack of support and options for people and one of those was hair and skin issues related to PCOS, mainly hirsutism, acne, hair loss. These are things that are either not covered by insurance, the treatments for them aren’t, or even if you have insurance coverage, there’s usually a fight to get it covered because these things are considered by insurance companies to be purely cosmetic or elective. Well, Amy, we can tell them that for someone who’s body image or self-esteem or confidence level is impacted by having excess facial hair or acne or hair loss, this is not elective. This is not just cosmetic. This is a medical issue that needs to be addressed and covered by insurance.

We hear stories from girls and women all the time, who have hirsutism, the excess facial hair, who avoid interacting with other people, who have lost jobs, who have lost relationships because of how they feel about themselves, how they feel their body is betraying them. And they feel so alone and so unsupported, by not having access to things like electrolysis, laser hair removal and acne treatments. So, the confidence grant, the PCOS Diva/PCOS Challenge Confidence Grant was formed to help people like these, to give $500 to help with these treatments, whether it’s electrolysis, laser hair removal, acne treatments or even hair pieces to help cover hair loss or help you feel more confident.

This grant has truly, truly transformed a number of lives, to date, and we will meet during the PCOS Awareness Weekend, we’ll meet one of the winners of the Confidence Grant and she will share how it’s helped her life and how she’s now transformed her life from being suicidal. She was suicidal and really felt that her appearance would hold her back for the rest of her life. So, I’m really, really happy to report that we’ve been transforming lives and will continue to do so, thanks to your support, Amy.

Amy:                                    That has got me emotional. You’re so welcome and, really, it’s you and PCOS Divas that are supporting it, too, because a portion of proceeds from any of my products or program sales go to the PCOS Confidence Grant. So, thank you, everyone listening, that if you have supported PCOS Divas because, in turn, you’re supporting the Confidence Grant.

Sasha Ottey:                      Yeah, I can’t wait for you to meet at least some of the other lives that you’ve touched, Amy, during the PCOS Awareness Weekend. I’m sure it’s already an emotional weekend, but that I truly look forward to.

Amy:                                    Oh, I better bring my tissues.

Sasha Ottey:                      Yeah, but there’s also … We will be announcing very soon another grant that will be helping people with one of the biggest, biggest things that impact their lives as patients with PCOS is infertility, so I can’t wait to really announce later in the upcoming months the latest opportunities to help the community.

Amy:                                    That is really exciting. Well, finally, I just wanted to say I know that the PCOS Challenge can’t do all of the things that you do without the help of volunteers and if what we’ve been talking about resonates with you and you’d like to get involved, maybe you could tell listeners what are some of the opportunities to get involved and volunteer for the PCOS Challenge?

Sasha Ottey:                      Yes, and I really want to shout out our volunteers, because none of our events, none of our programs, nothing is possible without our volunteers. PCOS Challenge is run by volunteer power and we’re so grateful for the people who dedicate their time and energy and efforts to our work. So, we need volunteers to help with each of our events, so if you go to pcoschallenge.org and you can see a list of our events, including the PCOS Awareness Weekend, we need people to help with each of those events. So, the way you can sign up as a volunteer, again, is to go to pcoschallenge.org. Go to the contact form and you can send us an email and choose the volunteer opportunities. We welcome you. We welcome people who are like-minded and want to help others in the community, while sometimes helping themselves. So, we welcome men and women, and teens, and people who have been impacted by PCOS and people who just want to help people in the community reach out to use and who would love you support and help.

Amy:                                    And I’m going to just put out a little selfish plea for myself because I’m part of the Patient Advocacy Board, and I’m heading up the content chair to develop more patient-directed content and so if you like to write, please fill out a form and you can be part of my team.

Sasha Ottey:                      I know you’re such a busy woman, as am I, and I can’t emphasize enough how much we depend on the support of others in the PCOS community and one thing I know we’ve talked about before, is just how creative women with PCOS are.

Amy:                                    Yes.

Sasha Ottey:                      This community is built on so many creative people, artists, writers, performers, it’s incredible how much creative power we have in the community, so if any of you would like to lend some of that creative energy to help build and fuel our programs and events, we really look forward to connecting with you and we need creative people to help us with the PCOS Challenge Magazine. We need graphic designers. There’s so many opportunities for you to use your creative skills to help PCOS Challenge in the community and if you want to be connected and be a part of PCOS Diva’s team, that would be incredible and we look forward to connecting. So, pcoschallenge.org and in the top navigation, there’s a “contact us” button. Click that and reach out to us there.

Amy:                                    And I just have to remind everyone that that’s one of the key tenets and I write about it in my book that women with PCOS have to get reconnected with that creative force, since I think that it’s so important to healing and if anything we talked about resonates with you, yes, please reach out. And Sasha, I just want to thank you, again, for all that you do and I’m so excited about the upcoming weekend and the events and I can’t wait to see everybody there.

Sasha Ottey:                      Same, thank you so much, Amy. I look forward to seeing you in Orlando and connecting again with you soon. Thank you so much, and thanks, everyone, for listening.

Amy:                                    Yes, thank you everyone for listening and I look forward to being with you again very soon. Bye-bye.

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