Happy PCOS Awareness month Uterinekind! In this episode, we cover recent uterine news and how bad the gender disparity is in our medical funding from the NIH. Thanks for listening!
Happy PCOS awareness month uterinekind! To start the month off right, we cover recent news from around the world that positively affect you, uterinekind. Continuing later this month, we’ll be spotlighting PCOS alongside expert guests and continue to treat you with our Beauty-Heroes giveaway! To find out more about the giveaway and enter, check out our Instagram page!
In our eyes uterinekind, you’re priceless. Unfortunately, shocking information from a 2021 study over the National Institute of Health says otherwise. Today we take a hard look at the gender disparity in medical funding from the NIH. We break down the costs of research funding for male and female dominant diseases and show where unfair biases lie. The gap in numbers will infuriate you. Uterinekind deserves better. Listen in to find out how bad our reality really is, what causes this, and what we can do for our future.
Lastly, we end on a high note from the east coast. Own a metal detector? This might change your mind!
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol:
What's our worth? According to the National Institute of Health, if you have endo, you're worth about $2 a year. Other female dominant conditions get less, a few get more. But the vast majority of funding goes to diseases that that predominantly impact the male body bias. It's a powerful drug. I'm Carol Johnson, and this is Hello Uterus.
This week we celebrate the kick off of PCOS Awareness Month and look gender disparity funding in the eyes, which are firmly planted on the face of the National Institute of Health. But first, Uterus In the News
in Rome, a woman who had a uterus transplant has given birth in the first case of its kind in Italy, and only the 6th in the world. The baby was born premature in the 34th week of pregnancy. The parent is positive for coveted 19 and had a cesarean after about a fever. Parent and daughter are currently in the hospital and doctors say that the condition of both is stable. And science is so cool. It's so exciting, transplanting a uterus. It's not like, well, all transplants have to be really hard because at first I always thought like, oh, you just put the organ in. But I never really paid attention to connecting all the nerves and the ligaments and how do you make sure it fits in there? And surgeons are amazing. Blows my mind. Anyway, science so cool. And congratulations. Alessandra is the baby's name. So cool. Also cool. The Department of Veteran Affairs announced on Friday plans to offer abortion services to veterans and their beneficiaries in case of rape, incest and pregnancies that endanger the life or health of an individual if carried to term. You know, just basic common human decency stuff. Just regular stuff that we would all be like, oh yeah, that totally makes sense. This move comes after ten weeks. That's the amount of time that we have been without Roe v. Wade. Ten weeks. It feels like ten decades. They've been painful weeks. Definitely painful. I tap into subconsciously or sort of like it's not really part of my awareness on a regular basis throughout the day, but when I do tap into it are you feeling attacked? I feel this part of me and I'm well into menopause, and I feel part of me is attacked by everything that's happening around. And beginning with the repeal of Roe v. Wade, didn't expect the Veteran Affairs organization to come out and be a leader on this. And I'm really glad that they are. Super great news. Over in Michigan, we have a little bit of an issue. The Reproductive Freedom for all group, which includes Planned Parenthood and the ACLU, gathered over 750,000 signatures for an amendment that would insert permanent protections into the state's constitution, not only for abortion, but also for other reproductive health services, including treating spontaneous abortions that aren't complete. PS. We're not big fans of the word miscarriage, which sounds like blame to us. They are spontaneous abortions. The person carrying the baby has nothing to do with it. I mean, except that they are carrying the baby, but are carrying the fetus or the embryo or whatever stage the entity is in. So anyway, they wanted to have permanent protection in the state's constitutions for spontaneous abortions, birth control, prenatal care and IVF. But the Board of State canvassers deadlocked 22 on Wednesday after hearing arguments from antiabortion advocates who said that the spacing and formatting errors in the text of the proposed amendment the volunteers around the state presented to voters for their signatures rendered the effort invalid. No, I'm not kidding. Spacing and formatting errors. What would those be? While I'm looking at them right now? One is this phrase decisions about all matters relating to pregnancy. That phrase is written as if it was a hashtag. It doesn't have spaces between the words decisions about all matters relating to pregnancy. I can read it. Another error was postpartum care, again, with no spaces between 750,000 people spoke up and said that they want this in the Constitution, they want the opportunity to vote on it and to have these protections in the Constitution for the State of Michigan. And these people are pointing out spacing errors. Are there double spaces after every period? Did that freak you out? Too bad. Document design might strip people of their rights to Uterine health care. This is pathetic and should be illegal. Keep your eye on Michigan. Super curious how that plays out. Oh my goodness, what a mess. And we have PCOS Awareness Month. Beginning now. September is PCOS Awareness Month. We're going to be featuring content and experts all month on the podcast, but I also want you to put these events on your calendar. Check out the website. Pcosawarenessmonthorg and on September 10 and 17th, the next two Saturdays, the National policystic Ovary Syndrome Association presents a virtual PCOS Awareness Symposium featuring world class experts on PCOS clinicians, researchers, patients and their supporters to come and share experiences, insights and the latest updates about PCOS. So take advantage of this opportunity, whether you have PCOS, suspect it or you live with another chronic condition. Because we don't know enough about how hormones impact our bodies overall. But we do know that hormones are involved in multiple conditions, so we all may be better able to connect the dots after attending these symposiums. The website also has a lot of information on it. So again, Pcosawarenessmonth.org, definitely check that out. And stay tuned for more PCOS content coming on hello, Uterus. But we are now going to take a quick break. And when we come back, what's the funding issue at the NIH all about?
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Carol: A study published in the Journal of Women's Health in July of 2021 titled Gender Disparity in Funding of Diseases by the National Institute of Health shows exactly what we all have suspected, that there are some serious funding issues when it comes to diseases that impact those born female. The outcome of this study, I'll give it to you right off the top. Bias is cheap to manufacture, and it's really costly for us all to metabolize. The bias behind the choices made by the NIH keeps us sick, really over the few days prior to right now, where I've been preparing for this episode, oh man, did I have to do some deep breathing. But besides that, thinking about how male and female bodies are perceived, that was essentially a full day for me. And in short, it kind of comes down to this comes down to worse, right? Males worthy, females not worthy. I mean, try to explain it to me in some other way. I challenge anybody to do that. I would happily have this conversation with them. But from where I sit, male worthy, female not worthy, male worthy of studying, worthy of treating. If anything shakes out that helps. Female bodies, awesome. Female worthy of objectifying, worthy of controlling, occasionally worthy of studying because they're such emotional little creatures. But it could have been different, given the obvious differences in our bodies. Male compared to female. Female, I would think. And OK, I get it. Not necessarily objective, but I'm trying to be objective. Hear me out. I would think female bodies would have jumped up a little bit in the priority status at a minimum prioritizing conditions that primarily affect female bodies. What really strikes me as cray is the lack of curiosity about the differences between the bodies. It's like they're like, oh yeah, I got this male body and we better study it and make sure we keep this all healthy and everything. And I don't know, women, they're weird. I don't know. I don't know. What are we going to do with them? That's what it feels like. It really is. The lack of curiosity about the differences blows my mind. The lack of a desire to know more about the body that births the future, a complete lack of desire. And that continues. It is just as robust today, this lack of curiosity and desire to know more about female bodies. It is as strong today as it ever has been. We claw out minuscule little wins and we have to do that right, because without those little wins we don't get the bigger wins. But my goodness, what a gut punch when you see the numbers. And we're just at the start of digging into this. We will definitely be digging into this more because I'm convinced that if we don't unstick research, nothing else downstream improves. And one of the things that I wondered about was do we not think about this gender disparity specific to research? Do we not think about it much because of what it says about a segment of the population in a position of power to do something about these debilitating chronic conditions? And what it says is they don't think we're worth it. They don't think we're worth the investment. The powerful entity I'm referring to for this conversation is the National Institute of Health. The NIH is the stored of medical and behavioral research for the nation. In its words, its mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life and reduce illness and disability. I am adding it's also the place where men matter more. In the study that we're going to talk about, I want to give you their framework. Their approach for comparing funding of diseases is to use disease burden as a normalizing factor, meaning the impact of the disease on the person. How great is that impact? And that levels of playing field, right? Hang toenail versus endometriosis, millions of people have them, one has greater impact, right? That's pretty easy to unpack. The NIH has often used dollars per patient measure. So normalizing with respect to the burden, which is what this study does, creates in their words a more meaningful comparison by factoring in the impact of the disease. Again, it gets at this idea of like worth women, those born with a uterus every day in this country and around the world suffer from debilitating conditions that leave them bedridden, anemic, passing out from pain, throwing up infertile their pelvis is frozen. The impact is significant. How bad is the condition? And do the dollars earmarked for research and education? Mary, with how bad the disease is, that's the bottom line, right? How bad is the disease? And do the dollars that support funding and education line up with how bad the disease is? We all know from experience that diseases that primarily impact female bodies are not considered serious. They're often classified as mental health issues. Symptoms are dismissed. We've talked about this in every one of our episodes. PS. Today is our 20th episode. We've talked about it a bunch. They're just not considered serious. They're considered bad. Periods, everything, right? I could have my eyeball hanging out of my face and some gynecologist would be like, well, let me just put you on some birth control pills and see how that helps you out. So the study compares male dominant and female dominant diseases. So what that means is male dominant disease is a disease that is dominantly found in the male body, and female dominant disease is dominantly found in the female body. And for these dominant diseases, we're going to start with underfunded diseases. Out of all the diseases that are male dominant, there is only one, just one underfunded disease, which is liver cancer. One out of all of the diseases. For the female dominant diseases, there are 14 underfunded diseases, one underfunded for the males, 14 for the females. Let's look at some of the numbers. Hold on to something to study yourself here. In 2019, endometriosis, got $13 million. I know people who have sold their houses for more than $13 million. $13 million. How quickly can you spend $13 million doing research? Are you kidding me? 13 million. Fibroids, 17 million. This one is heartbreaking. We don't talk a bunch about cancer on this show because we primarily focus on chronic conditions rather than conditions like cancer. But we certainly incorporate it when we're talking about big issues like gender disparity and funding. Uterine cancer in 2019 got a whopping $36 million. It's like, why fund research? Let's just take the uterus out. I'm sure was said in some conference room somewhere. I could not find a dollar figure for a single year after 2015 for PCOS funding via the National Institute of Health. They did, however, mention in their 2023 fiscal year report that they're adding PCOS to their database that they use to manage their funding. Well, that's a start. Now, let's look at some numbers for male dominant diseases. Remember, end of 13 million. Fibroid, 17 million. Uterine cancer, 36 million. Add, 64 million. Alcoholism, 556,000,000. Parkinson's disease, 224,000,000. Hepatitis, 378,000,000. That's some disparity. In 2015, Francis Collins, Director of the NIH, testified before the Senate Appropriations Committee and stated, and I quote, generally, we look at the public health burden, and it is a very well established way to do that. We also look at scientific opportunity because it's not going to be successful to throw money at a problem if nobody has an idea about what to do about it. We look at what our peer review process is telling us about the excellence of the science. OK, dude, doesn't the idea come from studying the disease? Ideas before studying are just musings. There's nothing that you can hang your hat on before you start studying the disease and the excellence of the science. Well, if you're not studying the disease by association or subtraction or addition, I don't do math. If you're not studying the disease, you don't have science. You might have science from things that are similar, but if you're not studying any of these similar diseases that seem to all impact the female body, and they all seem to have some sort of hormonal component. If you're not studying those, then you literally have no ideas and no science. Right. So you're saying generally, we look at the public health burden, but what we really focus on is the scientific opportunity and whether or not that science is excellent. Well, that's so super convenient, because if you're not actually studying this stuff, then you have no science. You have no ideas. Oh, why? Because I'm sorry, I'm going to call it what it is. Because you don't care. Because you just don't care. Because you've been conditioned to think that those who are born female are not worthy of the money, time, and attention as compared to those who were born male. So back to this idea of excellence of the science. I would like to ask Mr. Collins, how much excellence do $16 million provide, which was the amount of funding directed at studying Endo. How much excellence you're going to get with that? Not a lot, Candy. I would love to see a budget. We're going to have some scientists and professors on the show in late September and in October, and we're going to ask them if they can share this with us, what their budget is and how quickly they can burn through $16 million. I'm super curious to find out. The National Institute of Health is the largest source of research funding globally. They hand out over $41 billion every year. $41 billion every year. Out of that, 16 goes to endo. That's 00:30 8% of the budget. As we said at the top of the show, $2 a patient per year. 11% of US. Women in their lifetime will be living with endometriosis. As a comparison, 12% of US. Women are expected to live with diabetes in their lifetime. And if it is assumed that half of the allocated diabetes research budget was for female sufferers, which don't assume that, but for this math, we're going to assume that half of the allocated diabetes research budget was for female sufferers, and there's a funding allocation of woman, which is over 1500% more than for endometriosis. This comes from the study. That level of math is beyond my capability. Diabetes is bad. Endo is worse for a number of reasons. And I'm not leading with the idea that one person's suffering is greater than another person's suffering. I'm actually leading with the complications and with the intense surgery that is required in order to alleviate this condition. And what we need is to get at the root cause of this condition, which is going to unlock, I'm sure of it, other root causes and other conditions that predominantly impact female bodies. But yeah, $2. Crohn's disease is a chronic inflammatory condition like endometriosis. It affects the digestive tract. It results in abdominal pain, weight loss, diarrhea, fatigue. There are over 6900 people with Crohn's disease in the united States. In 2022, Crohn's disease received $90 million to fund Research $130.07 per patient, over 65 times more per patient than for endometriosis. And Crohn's disease affects 690,000 people. Endometriosis affects millions. So endometriosis is seriously underfunded. We started to go down a stigma hole, and I read a quote by Clayborn Johnston, who is the dean of the Dell Medical School in Austin, Texas, and this was in a conversation about chronic obstructive pulmonary disease and liver disease. So chronic obstructive pulmonary disease is often caused by smoking, and liver disease is often caused by excess drinking of alcohol. And here is what Clayborn Johnston said we tend to underfund things where we blame the victim. A number of diseases that are more common in women fall into this category. Endometriosis, one of the most underfunded female dominant diseases, was stereotyped as being brought on by women's life choices. It's your fault. You should have gotten pregnant sooner. If you've gotten pregnant at ten, maybe we wouldn't have to deal with this endometriosis stuff. I'm definitely feeling overwhelmed by the challenge of changing the baked in patriarchy of organizations like the NIH. I felt myself go down this path of we have to fight. But there's another path that I think is going to be much more gentle for our bodies and our minds and our hearts and our loved ones. We need to just speak. We need to call out the deadly bias. We need to work together to sustain pressure, and we need to use the language that they default to, which is money. Dr. Chloe Byrd, adjunct sociologist and professor of policy analysis at the Party Rand Graduate School, in a commentary published in Forbes and on the Rand School Blog, said the following what's more, by underfunding the study of women's health issues, we've left a tremendous amount of money on the table. In fact, in nearly three quarters of cases where a disease primarily affects one gender, the socalled men's diseases are overfunded, while the women's diseases are dramatically underfunded. Even a slight increase in capital invested in basic research into women's health would unleash staggering returns that would capture the attention of anyone on Wall Street or in Silicon Valley. Women, after all, make up more than half the US. Population and about half the workforce. Women are more likely than men to be caregivers and make 80% of all health care decisions. Yet the medical sciences continue to underfund studies focused on women, even among diseases that affect women most of all. This is, quite simply, inefficient science. I am adding my two cent and saying, also morally bankrupt. So I took a quick peek at the list of people who led the NIH and just one woman who wasn't an acting director in its 135 year history 135 years, and they have had one woman as a director. They had another woman step in twice as an acting director. So the woman who was an actual director that was in 1091 when, for two glorious years, she was at the helm of this organization, and she immediately created a half billion dollar grant to study female dominant diseases. She lasted two years. Her name was Bernardine Healy. What a great last name for that role. Currently, the NIH is led by a 71 yearold dentist from upstate New York. You can discuss that amongst yourselves. I've already thrown up for the day. The study concludes we have demonstrated that NIH applies a disproportionate share of its resources to diseases that affect primarily men at the expense of those that affect primarily women. Furthermore, we see, at best, marginal improvement in this trend over the 2015 to 2019 period. So, in other words, they're not itching to change. And that's why I started with this idea of how our bodies are perceived and how we're perceived in general. Because I feel like if we don't unwind that, it's like trying to ask somebody at the very end to care about something that they've never cared about from the very beginning. It's like saying, just turn on a dime and start to respect us. And they're like, well, why would I do that? I haven't respected you forever. Why would I start now? So the way to start now is with some powerful weapons that we have, things like awareness, education, and also just like, straight up determination. And the fact that people are looking at this, that there are studies out there where people are looking at this. The thing is, with a study like this, which we will link to on the blog, and I will include the graphs that show you the measurements and the breakdowns of the funding compared to the burden of the diseases. Those researchers can do that and write that, but then they got to leave it there, and we have to rely upon ourselves to pick up that research and run with it. We can't rely upon the media to do it because it's all the same. The media primarily cares about things that are male focused. They care about things that are female focused. If like clickbait, or we're being ornery or we're not being nice or we're difficult, that stuff gets covered. If we look hot, we'll get attention. But otherwise, it just falls on our shoulders. And it's something that we are really focused on. At Uterine Kind is identifying this research and getting it out there in ways that people can digest it and that they can start telling this story too, because that's my hope, is that you're out at a soiree and you're having a great time, and you're bringing this up so that people can understand what's going on, how it's not just negatively impacting the female body. It's impacting our society, it's impacting our economy, it impacts every aspect because we make up 50% of the people here. There's not just like, six of us in a back room. Sometimes it feels that way, but it's not. We have power and we have a million responsibilities. I fully get that. And many of you are living with debilitating chronic diseases. And so as a result, you're having to like gaslighting every day and you're struggling to access care. You're likely in limbo because of disinformation. In that moment, your power is through your stories. They cannot run from your stories telling these stories, the stories that we've showcased here on the podcast, the stories that other people have told on the pages of newspapers, on radio shows, in films, TV, in their own blog posts, on social media. These stories are crucial and it's building. And soon they won't be able to ignore them. And we need to also focus on the burden of these conditions. The burden should be a flashing red sign that says look here for the NIH. But it's not. The NIH is like, I guess, a lot of things, entities, systems of power and money. They're going to place their funding and their attention where they want. And when you look at the list of directors and you see that in over a century there's only been one woman, I mean, it doesn't take a scientist to point out why we have such a disparity when it comes to the gender aspect of funding research. So we're going to promote these organizations and the people who are standing up for you and the people who are out there doing research that points out the ways in which you are wronged. And within this research, I believe there is a sign that there's hope for the future. Because A, these people are doing the research. It's like the very beginning. It's like think of a Rube Goldberg machine, those super cool machines where you put a ball, it's like mousetrap, that game mousetrap. You put a ball at the top of something and then you give it a little push and it goes and then it goes through these cycles of things where it triggers another event. And that's what research is. When a PhD and their team decide to take up a question and conduct research, it can have the power to set off a series of actions that ultimately will benefit you. But if that research sits in a journal somewhere untouched and unseen, then it's not helpful. So one of the things that we are going to continue to focus on is research. We love it. It's very cool. It's very good stuff. Really important to know these things, to know the disparity between the funding dollars and that's just not really talked about openly. So I hope that this is helpful and I know it can be kind of a bummer and sort of demoralizing to think about, but when the light first gets shined on it, that's our opportunity to go and make change happen. And there are already people fighting for this change too. I'm not saying that we've identified this every.org that's out there working within Health is trying to illuminate the problem with funding. We're just going to place a big, giant spotlight on the disparity between the male and female body. And I think that switch has been duly flipped. So we are going to come right back with ending on a high note.
I'm going to let you know out of the gate that I did not get through this story without crying. You all probably have way more control over your emotions than I do. I cry, like at everything. A puppy running down the street, I'm in tears. But this one, this one really? Oh, man. Okay. So man and a woman, they're married. They're in the ocean up to their waist. They're throwing a football around, having a great time. It's a beautiful day. The sun's out. It's awesome on the east coast, I think, like New Hampshire area. And the guy throws the football to the woman when she goes to catch it. He put a little spin on this, I would imagine. And the football hit her wedding ring and flicked it off her finger. She's up to her waist in the ocean. She was obviously distraught and probably thinking, we can find this. It's right here, right? So she doesn't move. And her husband's like, don't move, don't move. And he comes over and they're trying to find this ring. But in my mind, I'm thinking, there's no way that you're going to be able to find this ring. It's an ocean. Tide comes in, tie goes out. That's a little ring. Like, it's not going to just fall straight down to where she's standing. That sucker's gonzo, you don't want me around when you lose something in the ocean. I'm going to be like, yeah, that's gone. Let's go. Let's go. Put back a glass of wine and cry about the lost ring because you're not going to find that again. So they look for hours. People helped. They brought them. Goggles. I would have been so mad at myself. Totally despondent. I just would have been beside myself. This was her grandmother's ring, right? So that adds an extra level, either a grandmother or relatives ring. So up in Maine, 75 miles away, this guy Lou hears that a woman has lost her diamond ring in the ocean. His kids had bought him a metal detector about five years ago. Round of applause for the kids. I love it when kids get their dad's metal detectors. I just think that's such a classic rite of passage. It's like, okay, you're old now. Here's your metal detector. But boy, what a great guest. Kind of gave away a little bit of the ending, but you know how this story is going to turn out anyway, right? You know, I'm not going to get to the end and be like, and her ring was never found. I'm not going to do that. So he drives to the beach with his wife at 10:00 at night. So. That they could sleep in their car and be up for low tide before sunrise. He gets in a wetsuit, puts on a headlamp and goes into the 65 degree water. And he searches and searches for hours and he finds nothing, goes home. But he cannot stop thinking about the ring. So he decides he's going to go back. He goes back to the beach and lo and behold, he runs into the couple who lost the ring. They were there looking. He joined them. Hours and hours of searching and still nothing. So, I mean, at this time, aren't you at this time going, it's a done deal. The ring is gone. Maybe somebody 150 years from now is going to find it and they'll find the Facebook post and I'll be dead and it won't matter, right? Hours and hours. Two days later, he decides to drive from Maine back to New Hampshire again and gets in his wetsuit and gets in the water and he's searching and he's searching, and finally it is getting toward the end of the day and he's just about to call it quits because, you know, this is how it always goes. And he got a hit. It was the ring. He found the ring. This guy who doesn't know this person, and he lives up in Maine and they live in New Hampshire. And it would have been just as simple for him to say, like, what a stupid thing to do. Don't wear your wedding ring at the beach when you're playing football, right? He could have been super judgy instead of being judgy. He was like, I'm coming to help you. And he didn't just go one time or two times. He went three times and he found the ring. I love it when humanity comes together. I just love it. I love it, which is like a perfect way for us to bid farewell here because I love it when we come together here and we get to talk about really important things that impact humanity. So thank you for being here. Thank you for listening. Thank you, angel, our producer, who does extraordinary work and is so flexible with me when I go down rabbit holes, research rabbit holes, and she gives me that time to get it done, which puts more pressure on her. And I'm really grateful that she is just so cool as a cucumber about it. And thank you to the team at Uterin Kind, who are hard at work building an app that will improve Uterine care for everyone. And we are getting so close to our launch day. Don't forget to enter into our beauty heroes gift away. It's a new month, september. I hear that the treats inside this beauty box are amazing. Two masks. Masks are powerful, especially when they don't have all that crap in them. So for truly clean products that are sent to you for free, visit us at uterinkind on Instagram and you can enter our giveaway there. Or you can go to uterinekind.com and enter your email at the top for our website. And from those emails and Instagram entries, we will pick a winner. Each week, four people received their boxes for October 4. Happy people whose skin and rest is going to be dramatically improved with the products that they received in that box. And that's it for me. So be well, be cool and be here next week for more. Hello Uterus. Bye.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is to not be used to diagnose or treat any medical condition. Please speak with a physician about your health condition and call 911 if it's an emergency. And thank you, Uterine kind for listening.