True Women's Health with Dr. Somi Javaid, Stephanie Swartz, and Sallie Sarrel | Recorded

Start at 5:17 to go straight to the panel and skip the event introduction.

TRANSCRIPT

So thank you so much again. And now I'd like to introduce this afternoon's council, which is led by Dr. Somi Javaid. Come on up. Are you going to have people all join you together, or do you want them one at a time? Dr. Somi Javaid (00:04:28): All together would be great. Speaker 1 (00:04:29): Okay, come on up. So I met Somi initially through Rosebud, and then subsequently we had conversations. She was on the podcast, we did a video with her, and it's always been such a joy, her enthusiasm and visionary nature around creating HerMD, which is a unique... She's going to talk about now, but a new way of understanding how to treat women and give them an integrated experience of both their OB health, their mental health, their beauty, all the kinds of things that are disconnected or disjointed in the culture, are brought together in one through her visionary practice, which is now spreading across America. (00:05:13): So without further ado, what is true women's health? And I'm sure you'll introduce your panel of yours. Okay, thank you. Dr. Somi Javaid (00:05:22): Hello, thank you everybody. Invisible, broken, undeserving, these are just some of the words that my patients have uttered to me while describing their journey on trying to seek healthcare in America. Invisible, broken, undeserving. (00:05:48): For far too long, women have been underserved in healthcare in this country. There are far too many barriers that exist currently in the United States for women to get quality care when they're talking about menopause, when they're talking about sexuality. Some of those barriers that exist, race, gender, not enough women making decisions, even though we outnumber our male counterparts three times in the healthcare workforce. Not enough clinical research trials, not enough funding, the recent overturning of Roe v. Wade, that takes my breath away, never thought I would see that in my lifetime, really brings and sheds light on what's happening in our women's healthcare journey currently. (00:06:53): It further magnifies the dire state of healthcare in this country. Access to safe, nonjudgmental healthcare, including resources that support reproductive health rights of women and people with vulvas have become more important than ever. We deserve experts in these fields of menopause and sexual healthcare. Do you know that currently in this country, less than 20% of OB-GYNs, we learn about this much of the body, are comfortable dealing with menopause. 50% of the world's population, if we're lucky enough, will go through menopause and spend half of our life in that state, and yet, less than 20% of our providers, who should know this topic, are even comfortable discussing these options, treatments, research with their patients. (00:07:58): And so, what does this mean? This means that women don't have access to specialized care. They don't get offered the most minimally invasive, modern treatment options. I have patient after patient who can tell me all about their husband's or partners Viagra, but when I talk to them about ADDYI, the first ever female sexual health drug that was studied in over 13,000 patients and has been on the market for over seven years, they look at me like, "What? I talked to my doctor about lo libido. They told me that there was nothing I could do or that I needed to put my big girl panties on and just have sex with my partner, otherwise I would lose them." This is still happening in 2022. (00:08:44): And if we get into racial disparities, we talk about fibroids. They affect 80% of Caucasian women by the time they are 50, and 90% of African American women by the time they're 50. And yet we've had almost no innovation, no research, no funding in this space. Why? Because of race. A black woman in this country is three times more likely to die in labor and delivery, and two out of every three deaths are preventable. You heard me correctly. 66% of those deaths are preventable, so what are we doing? (00:09:31): We deserve representation with clinical research. That is how we are going to move the needle. Because currently, when we have minimally invasive, modern treatment options, the FDA insurance companies will label them as experimental. They won't cover them, doctors refuse to learn about them, and so, by committing to and funding female clinical research trials, we will move the needle from experimental to standard of care. Standard of care, that's what we want, that's what we deserve. (00:10:13): Gender bias, it doesn't matter in most instances if you're a provider is male or female, women suffer. We are less likely for our pain to be taken seriously when we present to the ER, we wait many, many more moments to get our pain medicine if we need it, because our pain is not believed, and we're much more likely to die of heart attacks than our male providers, and the numbers get even worse if we have a male provider. (00:10:48): And this is, I'm a storyteller. When she met me, she knew, but I went into women's healthcare because of cardiovascular disease. And you could say, "Well, you went into vaginal health." But my entry into being an advocate for women was because when I was 21 years old, I got a phone call about my 45 year old mother, and my father said, "Somi, you need to come home." And for six weeks she had been in and out of hospitals, desperate for care, telling people, "My left arm hurts. I have shortness of breath, I have chest pain, anytime I try to walk on the treadmill, I have nausea." Any non-medical provider in this room could google those symptoms and would know it's her heart. She was told, "Too much caffeine. Your kids are stressing you out too much." And people say, "Well, surely you guys were poor. Surely you didn't have insurance. Maybe you guys lived way out there." I grew up in Cleveland, Ohio, where the number one cardiovascular center is, and people internationally travel, so none of those were true. The problem is that my mother had a vulva, and so, her words, her very symptoms were dismissed, and it nearly cost her life. (00:12:09): When we get into my specialty, sexual health care, the current rate of medications that are FDA approved for men versus women, 26 options for men. 2, 1, 2 for women. (00:12:31): Who said that? Yes. Oh my, can I hear that? Oh my God. Speaker 3 (00:12:34): Oh my God. Dr. Somi Javaid (00:12:36): Right? Right. We understand there's all kinds of partnerships, there's all kinds of sexuality, but who are all these men having sex with if we're not treating the women or the vulvas in the room? What's happening? (00:12:49): And I had a patient story. Once again, warned you, I'm a storyteller. A patient came to me with an insurance letter because her Intrarosa wasn't covered. Intrarosa is for sexual pain, not a very costly medication, but she couldn't afford it unless her insurance covered it, and it had cured her sexual pain. The denial letter said, "Well, sex is not necessary for life, so we're not paying for this." Oh, you're going to get madder. The reason she needed to continue to have sex, is her husband was getting the little blue pill, which the same insurance company was indeed covering. So the messaging there was not that the insurance company didn't believe that sexual healthcare was vital, they just didn't believe it was vital for women. (00:13:40): And then, when we talk about bias, it's so inherent in our medical terminology and the words that we use that go in everyone's chart. I'll just give you one example. A lot of medical terminology comes from Latin. So the Latin root for uterus is mitra. When you remove someone's uterus, what do you call it? Hysterectomy, Latin root four hysteria, hysterical, women are hysterical, and I did a very large national campaign about removing harmful medical terminology from our textbooks, from our exam rooms, from our software, because it does not belong there. (00:14:32): And so, you're like, "What's the good news, Dr. Javaid?" Barriers and dismissing women has led to profound delays in diagnosis, and we're going to get into this with our panelists, for some disease conditions, up to eight and a half years from presentation. The studies show it's not because we're not walking into our doctor's offices, we're not saying that something's wrong, like my mother was pleading for help. I never got to finish the story. She's alive to this day. I forgot to tell you all that. She's fine and very proud of the work that HerMD is doing. But these dismissals, it causes women extra time, extra cost, frustration. It's not an empowering experience. And then, sometimes when they have the courage to speak up and they're dismissed... I had a patient who was complaining about low libido, and the doctor in front of me, I was a med student at the time, said, "I can't get my wife in the mood. How am I going to help you?" How is she ever going to get the courage again? And so, this disservice is silencing women forever and creating this phenomenon of what I call invisible patients. And so, the delays in diagnosis, it's not just an inconvenience. The other problem is that women are dying and have increased mortality rates because of all these barriers that I have just shared with you. (00:16:07): Okay, good news. We are finally entering what I'm calling the Women's Healthcare Revolution. HerMD was funded last year to the tune of $10 million, so we can expand around the country.And let me tell you, 47 year old minority woman from the Midwest was given less than a half percent chance of ever succeeding, and I got a bunch of gentlemen to invest in women's sexual healthcare. I got them to care. (00:16:33): We are seeing more and more representation with female-led startups with research, access to education, and now is our opportunity to empower, educate, and advocate for women in the healthcare space. Education is truly going to be the cornerstone for change. Knowledge is power. Knowledge for physicians, knowledge for patients, if you don't know your anatomy, we're not going to be able to change healthcare. (00:17:03): Creating an environment where women are true partners in their healthcare is what HerMD is all about. Women are no longer going to tolerate being silenced, dismissed, or settle for being invisible. They're embracing their healthcare needs, they're coming forward with topics that were formerly taboo, like menopause and sexuality. (00:17:30): Most providers, unfortunately, in medical school, we don't learn about sexuality beyond contraception and STIs, but we're now talking about women's arousal, women's orgasm, we're allowed to discuss pleasure, because women deserve just as many options as their male counterparts. (00:17:48): So I'm here to tell you that the tide is finally changing and, headlines are emboldening women to come forward, so HerMD was featured in Forbes and Vogue, and women from around the country are saying, "I have that issue. I'm going to go to the doctor." Many women didn't even know that that was a medical diagnosis. (00:18:11): And I'm so proud to share with you that HerMD, the women's healthcare company that I launched seven years ago in Cincinnati, Ohio, has now seen women from more than 35 states. They've come to Ohio and Kentucky and different countries to access this type of healthcare, so we truly believe we're doing something right.We are soon expanding to Tennessee, Indiana, California and New Jersey, which we're really excited about. (00:18:46): We educate and empower our patients and we want them to become active participants in their healthcare. Our providers receive that specialty training in menopause and sexual healthcare, so remember I shared with you that nationally less than 20% of healthcare providers are trained in menopause, and even less than sexual health. Every single provider at HerMD has a deep understanding, so that no matter what location you go to, you will get that specialized treatment and care. Our offices are welcoming, beautiful, safe spaces, so you can say so long to the days of cold, hostile, sterile spaces. You all know what I'm talking about, the freezing cold room where they leave you alone with the little paper gown that covers absolutely nothing, they're gone. We have temperature controlled spaces, we have beautiful robes, we really want people to feel completely comfortable when they're discussing such personal important topics. (00:19:48): We offer a one stop shop, so our offices, there's a surgical center, you can come in for gynecological care, menopause, sexual health, imaging, and yes, we have a medical spa, is very important. So if you have a woman who has polycystic ovarian syndrome, they struggle with fertility, abnormal bleeding, weight gain, but also can struggle with acne and something called hirsutism, which is abnormal hair growth. And normally they pop around looking for help that's quality, and at HerMD they can have that full paradigm of care. I will tell you, in seven years, I've never gotten a complaint either. A woman says, "I'm going to come in for my pap, my hormones, and my Botox." So patients love it. (00:20:34): We have also developed a care model that has fixed the time element. So when I used to practice OB, I used to see over 50 patients a day. I didn't remember who saw at the end of the day, my nose was in my computer, and I didn't have time. 15 minutes to listen to you, get the story, do an exam, make an assessment, a diagnosis, put your orders in and send your prescriptions, that's crazy. A recent article came out saying that doctors would actually need over 27 hours in a day to do all the things that they need to do. So it's not that providers didn't go in with the best of intentions, most of us really care and really want to make a difference, we just entered a very, very broken system. (00:21:26): And our providers at HerMD, we've had almost zero turnover. And if you think about that, by 2025, we face losing up to 47% of our current healthcare workforce because of COVID related stress and strain, and if you don't empower your providers, how are they going to empower you? And that's what we love about HerMD, is that we have fixed that, and we have resurrected the patient provider relationship as it should be. The other thing that we are really proud about is that we are leading and participating in clinical research trials with modern, minimally invasive treatment options, and we are presenting them around the country. This is what's finally going to move the needle with the FDA. (00:22:20): And so, a final thought about all this, a lot of my colleagues who present and take care of patients in this manner, it's concierge, it's boutique, it's membership, it's not affordable. We do all of this with an insurance based system so that we can deliver our healthcare to as many people as we can, and soon you'll be able to access this level of care no matter where you live in the country. (00:22:50): We believe in delivering solutions for patients, the value of the disease process and women's experience. Dismissal is no longer going to be acceptable, because it leads to reduced access, minimized funding, and prohibits growth, so we believe in moving this needle forward. Through our expansions efforts, research, education and advocacy, we are committed to finding solutions to finally getting women the healthcare that they deserve. (00:23:22): Thank you. Thank you all. I could not be prouder leading this panel and getting to participate in this Sensing Women event. It ignites the kind of conversation that we need, it amplifies our collective energy and raises funds for organizations working to ensure body sovereignty and women's health. So I'm going to introduce my first panelist. Stephanie Swartz, senior director of policy and public affairs at Favor. (00:24:02): Yes, come sit with me. Fill in the space. So I met Stephanie on a podcast, and it was like boom, pow, energy came right off the screen. I'm like, "I like this girl." So tell us about Favor. Stephanie Swartz (00:24:18): Great. I think the boom, pow, powerful was me interrupting you, so thank you for your patience. So as Somi said, my name is Stephanie Swartz. I lead policy and public affairs for a company called Favor. It is a digital healthcare platform that provides easy access to contraceptive care specifically. We have a telehealth offering, we have about 70 to 75 healthcare practitioners that see patients, that evaluate surveys and consult patients on their preferred contraceptive methods. And in addition, we have two pharmacies, one in Texas and one in California, that can ship prescriptions to all 50 states. So in total we have over 220,000 patients across 49 states where we can prescribe, and then the 50 states where we can ship prescriptions. (00:25:09): We have the specialty and the focus on contraceptive care and on women's health, really to break down barriers in access to care, that contraceptive care is not actually as easy to get as the majority of people have experienced, probably, in this room. It is extremely difficult. A statistic that surprised me is that in six states, it is currently legal for a pharmacist to refuse to dispense birth control, and that we know in following the overturn of Roe versus Wade is getting worse. So anecdotally, even in states where it is not legal, pharmacists are refusing to dispense. This is for just basic birth control, but is of course really is creating an even bigger problem in drugs that are considered abortifacient, or can be harmful to a pregnancy, even when those are not being dispensed for the purposes of an abortion. (00:26:05): So by using this model of matching telehealth with a pharmacy that's able to ship prescriptions discreetly and directly to patients doors, we can operate at a scale to reach hundreds of thousands of women and people who menstruate, who are in need of contraceptive care, reducing stigma, reducing bias, and making sure that we're doing our part to make healthcare that is stigma free, that is breaking through racial and socioeconomic barriers. Dr. Somi Javaid (00:26:35): Can you talk to me a little bit about what care deserts are? Stephanie Swartz (00:26:39): Care deserts. Well, there are a couple of kinds of care deserts that we at Favor care about. There are the larger healthcare provider shortage areas. These are areas that do not have enough healthcare providers to serve the population, but more specifically, there is a designation called a contraceptive desert, and this is a definition that's put together by a wonderful advocacy organization called Power to Decide, and these contraceptive deserts exist where the number of women and people in need of contraceptive, that are also in need of publicly funded care are unable... That need is unable to be met by the current number of existing providers in those counties. In the United States, there are 19 million women that live in contraceptive deserts, so it is not easy to access birth control. And this is just about birth control, this isn't even about the full scope of care, being listened to, heard and understood, this is just the ability to access contraception. Dr. Somi Javaid (00:27:39): You and I have both seen the social media videos of women not being able to get their regular birth control. And so, post-Roe, how do you see policies shifting around access? Because you already said there's six states now where it's okay to refuse a woman, even if she has a prescription. Guys, just think about that. You have a prescription from a medical provider, and you go somewhere, and your pharmacist has a legal right to prohibit you from getting the medication that you need. And they don't know what it's for, if it's for contraception, endometriosis. What if you have severe pelvic pain and that's what you're using it for. Frankly, it's none of their business. They don't have the right to know what it's for. But how do you see these policies shifting? Do you think it's about to get worse? Stephanie Swartz (00:28:25): It's really tough to say, and I don't want to doom and gloom. I think that there are definitely states where this is going to be far worse. It is going to be extremely difficult to access trusted, respectful care, reliable care, because of the choices of providers. But more importantly, for providers, the uncertainty in their ability to provide their standard course of care. (00:28:52): If you feel like you as a provider cannot take a decision in the provider patient relationship because of an unclear status of current law, no one is being served by that and it creates a chilling effect, which means that fewer people will get the full scope of care that they deserve. But then we see in places like bluer states that are creating shield laws that make it explicitly legal for providers to provide the type of care that they do, we see movement at the federal level to clarify what types of drugs, what types of contraception, what types of practices are explicitly legal, but an unsettled legal landscape and a patchwork of regulations is never good news for the majority of people who need to seek care. Regardless of their personal beliefs, this is something that everyone should have access to. Dr. Somi Javaid (00:29:46): It's very overwhelming as we're expanding across the nation as well. Stephanie Swartz (00:29:49): Yeah. Dr. Somi Javaid (00:29:49): We are daily keeping up with our legal team. On top of just keeping up with standards of care, you now have to keep your providers from getting committed with a felony, right? Stephanie Swartz (00:30:01): Yep. Dr. Somi Javaid (00:30:03): How will you continue to protect patient privacy with everything that's going on right now in this country? Stephanie Swartz (00:30:10): So I started my career in privacy, and Roe versus Wade is actually a decision that's rooted in privacy. So it is an extremely central part of reproductive healthcare. It is an extremely central part of who we are as people and how we develop. It is an issue that's very close to my heart, and as a small caveat, I love the focus of events like this, that are breaking down stigma, that are opening up conversations about things that we traditionally keep private, because privacy can be very beneficial in allowing you to make mistakes, in allowing you to have thoughts and develop as a person, but it can also be really harmful if you think that you need to maintain privacy for safety or for other reasons, that it's taboo, it's something that shouldn't be spoken about. (00:31:02): So we're here to speak loud and proud about the reproductive healthcare issues that we are talking about. I have never had to say in a professional setting, vagina, emergency contraception, abortion, as much as I do in my day to day job, and I personally love it. (00:31:21): But patient privacy is extremely important in this legal landscape, not only because we have states in which abortion is becoming illegal or is illegal, we are seeing additional laws where you can criminalize providers, you can criminalize abortion seekers and you can criminalize anyone significantly aids and abets a person who is seeking to have an abortion. (00:31:48): The challenge that we're facing is that HIPAA, the Health Information Portability Act, it is a privacy law that protects health information, but the P is not a privacy, the P is portability, and it is not actually a robust privacy protection. It really falls short in that when it comes to law enforcement access to health information, the only clarifying information in HIPAA is about the circumstances under which providers are allowed to share information. This is important in instances where you have someone who is a threat to their own safety or someone else's safety, if you have someone who has broken a law, but it doesn't give providers really clear tools right now to refuse a request for information about someone's reproductive healthcare. That makes it extremely difficult for people in states where abortion is illegal. If you are getting anything touching abortion related care, if you are asking a question about your options in a pregnancy you did not want, that information can now be turned over to law enforcement officials. (00:32:55): And so, we have to look beyond HIPAA, we have to look beyond health privacy, and in a way that is fractured across the United States, and what we can do to protect specific types of information. We of course protect information under HIPAA. We consider all information, including patient communications, private health information, but beyond that, we're working with organizations, privacy advocacy groups, to campaign for improvements to HIPAA and improvements to privacy legislation to rectify this situation. Dr. Somi Javaid (00:33:31): So tell us all how patients can use your platform. Do they have to go through a provider? How do we use Favor? Stephanie Swartz (00:33:41): So the vast majority of our patients are coming into Favor through our website. It's hayfavor.com. They are answering a medical health questionnaire, and that's being reviewed by a clinician, a medical professional, and in states where it's required, they're also conducting synchronous audio video visits where we're talking about birth control, your preferences, your past experiences, a normal birth control consultation, but the real benefit is that in the majority of states, this can be done asynchronously through text messages. This is clinically indicated. Studies have shown that across the board, women and people who are in need of birth control can better answer their own health history and contraindications in a questionnaire without a provider, than when they sit in person with a provider. (00:34:30): And the great thing about it is that of course some patients are coming to us for birth control for the first time. A lot of patients are coming to us with a history of birth control. They know what brand they want, they know what type they want, they might have questions about what other options exist, but in some cases they've been on birth control for decades. They don't need to go into an office, have a visit with a provider, wait in a waiting room just to tell the same thing over and over again. So we really emphasize that convenience factor, but then again, back to first time birth control users, it can be such a barrier breaking experience to come in through telehealth to have a unique consultation where you can ask your question, especially for a Gen Z, through text message, not have to talk to a person who's decades older than you about what you want, what questions you have. (00:35:27): My personal story as a patient is, I must start up all my own courage as a 16 year old to go to the gynecologist on my own, didn't tell my parents, to get on birth control, and this made me very nervous. We didn't talk about this in my household. I went on my own and knew that there were options. I had researched them and I said, I want a non-daily pill option. I think the ring would be a good option, and the provider asked why, and I said, I don't think that I can remember to take a pill every day. And she said to me, If you can't remember to take a pill every day, you're not responsible enough to be on birth control. And if I was of my right mind and if I was quick enough in that moment, I would've responded with, well I'm definitely not responsible enough to have a child, so let's find a method that works for me. (00:36:23): And so, that's a typical experience. We have thousands of patients that tell us that they have had poor previous experiences with providers, and when it comes to your birth control, it should be a stigma free environment, it should be easy to access and it should be able to be delivered to you. Dr. Somi Javaid (00:36:40): So on that note, do you want to tell everyone about the providers you do like working with and the HerMD Favor partnership that we're working on? As I'm sitting here, it's always so hard to be the provider in the room, especially when you hate what other providers are doing and you're cringing because everyone's telling you about their worst gynecologic story and you're like, "I'm sorry, but I'm not like those other gynecologists, I promise." Stephanie Swartz (00:37:03): Well, that's the whole point. So we as a telehealth first and digital healthcare company, we can't do certain types of care, even when it comes to contraceptives. We can't do a shot, we can't insert your IUD through the internet. Not yet. We haven't figured that one out. Dr. Somi Javaid (00:37:21): Not yet. Stephanie Swartz (00:37:24): And we also know that a full scope of care requires an in-person component, and will at some point. We can't do a pap smear. That's a huge part of taking care of a full patient and they're reproductive and sexual health, and we've long had the ability to take in birth control prescriptions from other providers so that a patient can have that in-person relationship, but then still benefit from the discrete delivery straight to their home. (00:37:52): And we wanted to build on top of that and say, how can we find like-minded providers to partner with, where we can also tell patients that, for example, have a contraindication and cannot receive birth control. Where do we send them? What can we do for them? They need a different consultation, they need a different option. So we need provider partners for that, we need provider partners to expand services and we need provider partners in order to really live up to the mission that we have of making healthcare that works for women and people who menstruate. And one of the best partners we've found is HerMD, and we are working on partnerships now. We're doing that pharmacy delivery, and what we're really looking forward to is walking arm in arm to create a better healthcare system for the patients that we collectively serve, because it is a shared mission, it is a shared understanding of the experiences that so many people have, and that this should be better, and we deserve to better serve patients. Dr. Somi Javaid (00:39:03): We have to use our collective voices, we have to. Every morning when I wake up and I see a new headline, like yesterday's headline was, Missouri is now going after providers who are going to try and treat ectopic pregnancy, that that is considered an abortion, even though ectopic pregnancies are not viable, and it's the number one risk of maternal mortality in this country, so we're going to kill women for ectopic pregnancies. And so, every day when I see those headlines, I'm even more emboldened in our mission, our collective mission to use our voices and to make sure that we don't become invisible and have absolutely no bodily autonomy and no decisions about our own fertility and healthcare. Yeah, it's really insane what's happening. Thank you. (00:39:59): I want to introduce our next panelist, but let me make sure I get her last name right. Got to make sure, because yes... So this is Dr. Sallie Sarrel, and she has her own personal healthcare journey of after nearly two decades of pain and pelvic pain, she was finally diagnosed with endometriosis. And so, she has created a safe haven and a resource for all women with endometriosis who secret relief from pain, that many believe is unmentionable. Patients need to feel heard about their healthcare matters and to believe that they are valid. At HerMD, we believe providers should be partners in their healthcare and not just be passive participants, and Dr. Sallie feels the same way. (00:40:51): So, first question for you is how has your own experience of being diagnosed with endometriosis changed your relationship with providers? Dr. Sallie Sarrel (00:41:02): People with endometriosis are in many ways unfortunately the ultimate silent patient that you described. So beginning from a young age, they have cramps, maybe when some of their friends aren't bleeding heavily, and they're overwhelmed, and usually the first thing that happens is, they go to their mother and their mother says, "Well, this is what it is." Because the mother also had a problem and they've now normalized pain and normalized shame, and then maybe they go on to become sexually active, and sex is painful, and low and behold, they go to a doctor, and one of the first things that they'll hear is, "Your BMI is too high. Your BMI is too low. You are seeking attention, or just that people have pain and pain is- ... of life." (00:41:59): Everything that HerMD described before, these are the ultimate patients that experience that, and I can guarantee, if I did a poll of all my Instagram followers, almost every single one of them has been told when they went to the doctor for painful sex, to have some wine before sex. You're all shaking your head. I don't understand, do doctors think the wine goes in our vaginas, because I don't know, I don't need to be drunk to have sex, but this is a common thing to be told. (00:42:36): Endometriosis is something that comes with back pain, lung collapses, you can have bowel endometriosis and have extreme bloating, diarrhea, consultation, and you can be afraid to say all these things to a provider. (00:42:55): And the best part is, you can get up the courage to say all those things to a provider, and the provider really doesn't have a roadmap or the knowledge to be able to help you, because in medicine, just like what you were talking about, most providers are spending 15 minutes trying to squeeze you in, staring at a screen, and endometriosis is a whole body disease from a GI system to vascular system and beyond just gynecology, that they don't fit into those 15 minutes. (00:43:34): So when we talk about my own personal journey, I'll say that I am a white female from a very high end socio and economic status and a family of doctors, and it took me 23 years to be diagnosed. I'll just pretend it's not going on, but it is. I'm getting a little nervous about it. Dr. Somi Javaid (00:43:55): Okay. Dr. Sallie Sarrel (00:44:19): So, is it on yet? Okay, so if I had everything available to me that comes with that, and I couldn't be diagnosed, including the ability to put my hand in my own pocket and pay for care, what does the average person experience? What do you experience if you fall outside of everything and the privilege that I had? (00:44:41): So what they experience is misdiagnosis. They're told the pain is in their head. They're told to normalize their pain, and then maybe somewhere down the line they try to have a baby, and they're told if you have 15 to $20,000 you could try some IVF, and that'll fix the problem, or you could have a hysterectomy. (00:45:03): So here's what happens. A, I've listed a million symptoms, none of which had anything to do with infertility, though endometriosis causes infertility, but if you have back pain and you are not able to overcome your fatigue, then you are not able to work and integrate into society at all. And that's ultimately, people are that silent patient, they're not just lost in the doctor's office, they're lost in life and in the way that we integrate into the world, and they can't be a part of society if they're not feeling well or if they're experiencing endometriosis. (00:45:45): So the question ultimately was, how did my experiences affect that? If that happened to me, what's happening to the average person? So I found a partner in crime who is a gynecologist, and he said, "Yeah, it's bad, it's bad for the average person." And we joined together and created what is now the largest educational entity for endometriosis in the US, and we started to talk about different things like policy. We've started to talk about birth control. We don't take any funding that comes from a motivated group of individuals, so that's where we're at. Dr. Somi Javaid (00:46:27): So what type of educational platform have you created within this community? Dr. Sallie Sarrel (00:46:34): Within this community, the largest thing that we do is that we put patients and practitioners, that's doctors, physical therapists, acupuncturists and patients all together on even footing and hold a single conference where all the information is open to everybody in that room. There's no more fractionalizing that the doctor can know one thing and the patient can't know the other. (00:46:57): And the other thing that we find is, the patient has to share what they know with the doctor, because oftentimes, they don't fully get it. So we hold this conference, but then COVID was a blessing to us in many ways, as it was for many of us, in that we started to hold a webinar series that I thought maybe 10 people that I was related to were going to be watching, and we go out to about 60,000 each week. And my goal is always just like the projects that you both have, is to reach that person who doesn't know where to go, and doesn't know what to do, and is at home, sometimes in the middle of the night, and is desperate for help. And so, we call that Endo Summit Live. That is a good way of reaching them. Dr. Somi Javaid (00:47:48): So what's so important about what you're doing is that multidisciplinary approach, because endometriosis does affect so many systems. I will joke that providers not only offer wine, sometimes they offer vodka, vodka, tampons. In 20 years of clinical practice, I've heard it all. The thing that is most maddening to me as a provider, are there are so many treatment options now beyond hysterectomy, beyond pain medications, and providers don't have the time to go through all of those options and then really arm their patients with choices. And so, what do you feel is the singular biggest challenge for endometriosis patients? Dr. Sallie Sarrel (00:48:30): I think the biggest challenge ultimately becomes that the construct in which we frame endometriosis is wrong. Okay, so yes, it affects reproduction, but it's not a reproductive disease. And just like you said, every endometriosis patient typically needs a gastroenterologist, a urologist, a general surgeon and a gynecologist in their surgeries. And until you realize that, and then when they're done, a physical therapist, a nutritionist and a psychotherapist. So until you're able to... And that's just to go back to living normal life, whatever normal is. And so, if we started to change this framework that women only deserve care when it's related to reproduction, we might actually make some headway with endometriosis. Dr. Somi Javaid (00:49:28): So endometriosis is right when the inside lining of the uterus ends up all over the place, it can end up on the bladder, on the fallopian tubes, on the ovaries. Dr. Sallie Sarrel (00:49:37): Actually, just to clarify, there's a lot of debate as to what endometriosis is. My entity does not subscribe to the retrograde menstruation theory, which is this theory that the uterus is found elsewhere in the body. If you look at the tissue underneath a microscope, it is not actually related to uterine tissue at all, and there are plenty of people who never had a uterus, who still have endometriosis. So I think when we talk about a construct, we can't even, as a whole, in our industry agree on the definition of endometriosis, because we could be here for 45 minutes, but that's part of why the disease is so minimized among people. Dr. Somi Javaid (00:50:18): So I will agree with you that we have not confirmed the etiology of endometriosis for sure, and retrograde menstruation means that instead of bleeding forward, out onto your tamp on our pad, you be bleed backwards through your fallopian tubes, which I have definitely seen when I'm operating, but what is not agreed upon is whether that tissue actually takes root and grows, and so that's what we're saying. It is a theory, but not everyone agrees that that's the etiology. Regardless, there is tissue in your body that should not be there. It's misplaced, it gets very inflamed, it causes scar tissue, it can cause profound daily pain, worsening pain with menstruation, horrific sexual pain. That's where I see most of my patients, because they have this deep dysuria, so deep in their pelvis, and a lot of times providers will just tell them to stop having sex when there's so many options out there where they can still have sex. So I want to end this on a positive note. What are you most excited about in the endometriosis space? Dr. Sallie Sarrel (00:51:27): I am seeing patients use their voices like they never have before, and I think the changes, especially politically that are going on in the US, are making people recognize that if there's going to be change, it's going to come from them, and that ability to rise up and to hold events like this, but to even grab a phone and blather on Instagram, that is changing the way we're going to have healthcare in the future. Dr. Somi Javaid (00:52:02): So for me, I'm most excited about the new medications, the platforms like yours that are giving women the right voice and a place to talk about this, to not live in shame and isolation anymore. I'm also excited about some fem tech companies. Have you guys ever heard about a product called ONET? Yes, so ONET is just published its endometriosis trial, so this is a $60 over the counter product that you place on a male partner or a toy, and it's to minimize the depth of penetration but it's still mutually satisfying, but they have data now that it can help with endometriosis patients, especially those who don't want medication, are not ready for surgery, or maybe don't really like the side effects of their medication. I'm just so happy that we're thinking outside the box and there's really easy fixes for at least some of the symptoms. And so, that is how I'm going to end this. I want to thank my fellow panelists so much, and I want to open the floor for questions. Speaker 6 (00:53:12): Hi, thank you so much. You've made the future of women's healthcare both bright and like hell fire, but that's okay, I know that we're very safe in New York. My IUD insertion was the worst pain of my life, and my female gynecologist told me it would be a pinch and that there would be nothing to worry about. She told me to take Tylenol before the procedure. I almost blacked out from the pain and I'm just hoping that the future of IUD insertion could come with Percocet or something. I've heard there's a cervix relaxer that I could have been offered, and everybody I talked to say they weren't offered any pain meds, even when they begged for pain meds, they weren't offered. They ended up with their mom's Xanax or whatever it was. They just took as many drugs as they could, which could not be safe. But I'm just hoping there's a positive outlook for IUD insertion in the future. Dr. Somi Javaid (00:54:11): There is. We do them every day at HerMD. The problem with that cervical relaxer, it's one of two ingredients for the medical abortifacient, and so we are faced with this because we prescribe it all the time. It's one of the two ingredients, it's not going to cause an abortion, but it helps gently open the cervix so that you don't have to have that pinch, but you and I both know it's more than a pinch. I've had an IUD, it's not a pinch. And so, we prescribe it, but now we were having patients in Kentucky being turned away, so we have now, with the patient's permission, written on the prescription for IUD insertion, to make the pharmacist go... And have had HerMD providers that I love who have marched over to the pharmacy and been like, "WTF, seriously, what are you doing? This is not in your scope." (00:55:07): So I'm worried about access to that medication misoprostol, we also use it in labor, but you do that and IUD insertions for most people, no big deal. We also tell women to place a heating pad, those ThermaCare patches. Heat relaxes the uterus, and so we provide those at HerMD. We also give people chocolates and water, and try to make it as nice as possible. But people come in so scared, because they get on those discussion boards and were basically told that they're getting murdered. But women are coming in in droves because now with Roe v Wade being overturned, everyone's talking about long term contraceptive options. And so, I can tell you we do them on a daily basis, and there's no screaming in our offices. (00:55:56): And some people do vagal, there are nerves in the cervix. And so, do people faint? Yes, but for the most part it can be very, very comfortable, and then for some patients who've been so traumatized by their providers, we have a full blown surgical suite at every HerMD, so we don't shame you if you say that you need to go to sleep. It's okay, we can put you to sleep, insurance will cover it, and it's done in two minutes. And then, that way you don't have the trauma. And so, for some patients we do that. And they're like, "You're not going to judge me?" I'm like, "No, I'm not going to judge you, just want you to get the care that you deserve." Speaker 7 (00:56:46): Besides my false eyelashes being flown off with some of the stats and data that you've shared with us today, is the amount of recession of our rights, has that been within the last five years, four years, or is it really within the last two years? How do we put the finger in the dike? How do we stop this? Who's motivating all this? It's not just one source, so how do we wake up and activate and stop the bleeding? Stephanie Swartz (00:57:37): There's so much in that question. The first thing I want to touch on is that you are right that this is a recession of rights that we have not previously experienced. This Supreme Court ruling is the first time that the Supreme Court has taken rights away, ever in the history of the Supreme Court. They've taken away the right of individuals to make informed healthcare decisions with their healthcare providers and with their family members. (00:58:04): The thing that will be bad, is that by removing a constitutional protection, you now make it a state by state battle. The fights ahead are hard and they are many. You have to create a new foundation on which we can protect reproductive healthcare access to abortion, and that building is so much harder than tearing down. That is what we have in front of us. If there's one glimmer of hope, it has been the response that there are two things that are important to note. (00:58:40): Abortion public opinion has been steady essentially since Roe versus Wade. It's depending on what poll you're using and what wording of the question you're using, between 70 and 80% of Americans support access to abortion in some form. For some people that can be, if you ask the question like that, they could be thinking that's up to 12 weeks, up to 15 weeks, but they still promote or they still support access to abortion. (00:59:07): Following the Dobbs ruling, is the first time that we have seen a shift in public opinion, and what we have seen is that this stops being a theoretical issue about when does life begin or do we have different agreements or disagreements about what we're talking about when we talk about abortion. We have moved the conversation to, is this really a question that the government should have a role in answering? And for the majority of people, the answer there is no. I'm a policy person, so I'll put this into the politics. The fascinating way that that has played out is that you have, the Kansas referendum was a extremely interesting watershed moment. It was the first time following the ruling that overturned Roe versus Wade that any election considered the question of abortion, and because it was a ballot referendum, it was a specific question on abortion. You didn't need to say, I'm a Democrat, or I'm a Republican, or I'm going to delegate this choice based on the party that I subscribe to, so you didn't have to identify with a party, you just had to say, do I believe that it is the state's job to make this decision? The resounding answer was no, it is not the state's job. So we know that that kernel is there. (01:00:29): The second point is that it has motivated voter registration and turnout in a way that we have not seen. I don't want to get anybody's hopes up that the midterms are going to turn out to be a blue wave, they're not, but it means that there's something there that this issue resonates with people, it is important to people, and it is motivating them to register to vote for the first time. And we also know that young people disproportionately support access to abortion in their political views. Gen Z is a growing user base. Millennials are now the largest voter base in the United States, so there is hope, but it is a long, long road. Dr. Somi Javaid (01:01:12): Use your voice, vote. And then, for me, it doesn't matter as a provider what political party you belong to, until you've sat in a room and delivered a baby that's not going to survive because its organs are outside its body, until you watch a woman bleeding out from an ectopic pregnancy and she's seconds away from dying and you have to save her life, you don't understand. And so, the problem with these decisions is that they're not accessing the expertise of physicians so we can help define what does this action mean? What they want to do in Missouri is compromise living, breathing human, adult women for pregnancies that are in the ovary or in the fallopian tube, and I bet you, if I look at that policy that was written, that there were no providers involved. (01:02:06): And so, I have colleagues of mine who are sitting in hospitals with a woman with an ectopic pregnancy, and whereas before we could go surgically or medically remove it, now, for fear of getting charged with a felony or going to prison, they sit and wait until that woman becomes unstable, ie. you wait until she's going into shock. Do you know how much that multiplies her risk when she goes into surgery, versus when she's stable? And then, at the end of the day, you're not protected from a malpractice suit either, so you're either getting sued and going to lose your license or you're going to go to jail. And so, if we don't step up and protect our providers as well, we're going to have no quality OB-GYNs to take care of women in this country. Speaker 8 (01:02:53): So, politics for dummies. So use your voice, vote. Where can people access information, like a normal person who understands not a lot about medical, not a lot about politics, and the implications, or what do you recommend for those of us that aren't in the world of policy and medicine every day to activate our voices in a way that is relatable and possible for us? Stephanie Swartz (01:03:29): You are on the lucky side when you're not deep in the politics of it. The thing that's most important right now is that the midterm elections are coming up. We are, I think, 41 days until the election. Most important, you register to vote, or you make sure that you are registered to vote. (01:03:45): There are a number of websites that will help you make a plan. That's the second most important thing, and they will also help you research the candidates that are on your specific ballot. It becomes overwhelming when you're in taking news, and this might be happening in Missouri, I don't live in Missouri, It's a travesty, but does that matter to me. How do I make decisions about what to pay attention to? And a lot of those tools can help you understand your specific ballot and what you need to know. A couple of those are Vote Save America. The folks that do Pod Save America have a really helpful tool where you can just put in your address where you're registered to vote, and it can help you explain your entire ballot. (01:04:25): And then you have to do your research, and this is the hardest part, because as reproductive healthcare becomes an issue that is decided at the state level, it's important in a way that it wasn't previously that you understand who your county prosecutor is, who brings cases against pregnant people seeking abortions, who brings cases against providers that are providing abortions, and even beyond abortion, what does your city council, what does your state senate, what do they believe about access to contraception? It is coming under attack as well, and it's not going to stop at abortion, it will continue into all of reproductive healthcare. And so, knowing who's on your ballot and then knowing who funds them, who donates to them, and where they stand on issues. (01:05:12): As an anecdote, that doesn't really help make this any easier for you, there are a number of very interesting cases right now where abortion has become a really more toxic issue for Republican candidates than it has been in the past, and they're distancing themselves from hard line abortion, anti-abortion stances, and they're wiping their websites of previous stances. So very strong anti-abortion supporters who were very pro-life have now removed that and have replaced it with more common sense language, more balanced language, because they know it's not a winning issue for them in a way that it was when abortion was protected by the Constitution, so you really have to make sure that you're looking at what they're voting for, what they've said in public and who gives them money. Dr. Somi Javaid (01:06:03): And yeah, that's the depressing thing. I've seen certain states where IUDs are next on the docket, punishable by crime for physicians who place them, and I've watched legislators arguing that IUDs are abortifacients. I'm not talking about placing an IUD in a pregnant uterus, I'm talking about a woman who's had a negative UPT and you are placing it in a uterus that is non-gravid. And they are pushing their own political agendas, and so, as women, I recommend that wherever you stand with your politics, just learn. Learn what these definitions mean, learn what these proposed laws and bills are saying. I think you'd be shocked. I've talked to so many patients from all walks of life. So eye opening. They said, "I was staunchly pro-life until I started reading about ectopic pregnancies. Oh my God, I had no idea." So I think it's our job, now more than ever, to educate ourselves and our collective sisters, and really stand together as one. Any other questions? Speaker 9 (01:07:23): What about [inaudible 01:07:23]. You've mentioned there was, I think it was 66 drugs for men and only 2 women, and how to change that. Oh, for those online. I'll say it again. So you were talking about medications and for the male has 66 to the female, which has 2, how do we change that? Dr. Somi Javaid (01:07:52): Clinical research, trials and data, and then they tend to send this little spitfire I know to the FDA. But honestly, it's data. So there is so much data for testosterone. Every single person in this room has testosterone. Testosterone has been proven to be beneficial with every single domain of sexuality, that's how sex nerds break down sex. So that's pain, moisture, arousal, orgasm, desire, and so it's proven, but there are no FDA approved testosterone only options in this country currently for women. You and I, we all make it, but we don't have access to it. Physicians like myself and my colleagues, we compound it so that women can get it, but it's going to be presenting more and more data, so we move from experimental to standard of care. And until we start demanding, demanding, not asking nicely, use your voice, demand that these options become available for us, we're never going to even that gender disparity that exists in sexual healthcare right now. I'm working on it though, I promise, in my spare time. Speaker 10 (01:09:25): So as an educator, I teach high school, and public high school. And so, the public health classes across the board is an issue, and how are your organizations dealing with the public school issue, with just giving students just normal healthcare information that's not being controlled by the government or religious institutions? Stephanie Swartz (01:09:55): I'll kick it off. We're giggling up here because we're working together right now on education series on social media, specifically about sex ed, to address entirely this problem. (01:10:08): The state of sexual education across the country is extremely varied depending on what state you're in. It's well known that some states have abstinence only policies. Some states have really even more specific, and when you get down to it, absurd requirements or limitations on what they're able to teach, and it is really hard then for young people to get the information that they need. And it's not just about sex, it's about their bodies. It's about understanding, if we can take it to endometriosis, that what pain is normal, what pain is not normal. (01:10:49): It is also delegated to the states. It's an issue that states get to decide, but we also know that young people are looking for a number of other options to get the information that they deserve. And we also know, I don't know if you read the news this morning, but in Florida the high school students are walking out, protesting the ban on transgender... Not being able to teach about transgender issues and transgender people. So what we're seeing now, and what gives me hope, is that young people know what they don't know, and they're looking for other ways to find it. So we're in a little bit better of a place than-