The Women's Health Funding Gap: Why Nobody Opposes It but Nothing Gets Done with Kathryn Schubert

Endometriosis affects as many women as diabetes. Diabetes research gets $1 billion a year from NIH. Endometriosis gets $28 million. That kind of gap doesn't exist because people are against women's health research, it exists because it hasn't been made a priority.

In this episode, Dr. Adam Brown and Dr. Lara Zibners sit down with Kathryn Schubert, President & CEO of the Society for Women's Health Research, to unpack why the women's health funding gap persists, how policy actually gets shaped behind the scenes in Washington, and what it's going to take to close the gap for good.

Kathryn shares her journey from Capitol Hill scheduler to registered lobbyist to leading one of the longest-standing organizations fighting for women's health equity. Along the way, we get into the real role lobbyists play in healthcare policy (it's not what you think), how advocates tailor their message to move lawmakers on both sides of the aisle, the history of excluding women from clinical trials — and the assumptions that made it seem reasonable at the time, navigating women's health advocacy in a politically charged environment, and why the private sector is finally waking up to women's health as a market opportunity.

This conversation will change how you think about where health policy comes from and who's actually moving it forward.

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Transcript

SPEAKER_03 0:00

Unstable Vitals is the podcast that takes the pulse of American healthcare, and the prognosis is critical. Dr. Adam Brown and Dr. Lara Zibners, physicians turned entrepreneurs and business leaders, expose why the system is unraveling before our eyes.

SPEAKER_01 0:17

Hello and welcome to yet another episode of Unstable Vitals. I am Lara Zibners, and I am here with my good friend Adam, also known as Dr. Brown. And where are you sitting today, Dr. Brown?

SPEAKER_00 0:32

So I'm in my home office in DC. So it's nice to be home. Although I think you're in California today, and I'm extraordinarily jealous because I got some intel that the temperatures were like in the 80s for our UK folks. That's like in the 20s. Well, a little bit jealous about that too. I was a bit jealous about that. But like you you did just for those that are they're both at a conference together, so not let's let's not create any scandal unnecessarily.

SPEAKER_01 1:02

Yeah, no, we're at we're at an data point for a conference. Steve was on a panel. I have been running around. But you know what happened this morning? Some poor sucker sat down at the table and he said is the like he said uh we said is the juice good, and he said it's orange juice, or somebody said something about the juice. And then you know, juice leads me to juice box, and you know, my company produces the vaginal juice box. And this poor guy who sat down and just wanted to have his breakfast ended up getting a full pitch on Calolilly, and we have follow-up plans. So that's a data point.

SPEAKER_00 1:36

See, I thought the orange juice was gonna turn into the addition of champagne, which made it a more appropriate breakfast drink of a mimosa, but that's not what it what it happened. It turned into Calolilly, but I get it, I get it. We gotta talk, we gotta talk with Katie.

SPEAKER_01 1:49

Oh, right. Oh, wait, I have to introduce our guest. Okay, you just blew it. So what I was gonna say is our guest, I'm very excited to have. She is somebody that I was stalking for quite a while. Like, I kept meeting her and giving her my card, and I'd be like, we should connect, because I think you're neat. And then she would not connect with me. And then finally, I got in her face, and I was like, I want you on my podcast, and I want you to be my friend. And now, today, as of today, I think I have both. I want to bring you Katie Schubert. She is the president and CEO of the Society for Women's Health Research. She has a big background as a lobbyist. She's going to tell us all about what she, also being in DC, does. Welcome, Katie.

SPEAKER_02 2:30

Thanks so much. I I love the way you characterize that, which is 100% accurate, but it wasn't because I was avoiding you.

SPEAKER_00 2:39

It was I literally just spent water over my all of the sound sound stuff that we tried to work on for the last half hour is now screwed up. Good job. No, no, no. It's good to see you. It's good to have you on.

SPEAKER_02 2:59

Thanks for having me. It's nice to see you both.

SPEAKER_00 3:03

Yeah. So, you know, um, as we were looking back through your background, and and first, like Laura's like, oh, you gotta, we've got to have Katie on. We've got to have Katie on. You know, as as uh when we are thinking about how do we solve the healthcare problem, you know, like the title of this podcast is Things Are Unstable, you know, unstable vitals. And so as doctors, Laura and I are always putting on our ER brains and for her ER and pediatric brains of like, okay, what's unstable? How do I fix it? And so I think we can probably say that the healthcare system in the United States is fairly darn unstable, and um, and especially in certain segments of it, but you are focused on the policy, science, and equity around uh uh women's health funding. And so tell me more about you, tell us more about what you're doing. I I just I'm very curious, and then we can talk about how to fix our problems.

SPEAKER_02 3:53

Oh, we've got a lot of problems to fix. Uh, but I think we can do it. Uh so I mean, my background, I don't think it's all that particularly interesting, except that I found myself starting my career on Capitol Hill working for my own member of Congress, um, who at the time was the chair of the health subcommittee for the Committee on Ways and Means. So very much into just from sitting in the office, and I was her scheduler, so I would, you know, get all of the phone calls and do all of the meetings, often requesting that federal officials from HHS, NIH, CMS was a huge one because that was when Part D was being created. Um, so I sort of learned some healthcare policy by osmosis and then went on to become a lobbyist after that when you work on Capitol Hill. And this is something my mother kept asking about like what happens when you are out of a job in two years, which is a very real issue. Um, and I was like, oh, it's fine, I'll find another job. Um but I ended up working at a lobbying firm that only did healthcare policy, a boutique firm, and uniquely their clients were nonprofit organizations, some in the patient advocacy space, some in the medical professional society space. There was a little bit of biotech sort of tangentially, but it really was focused on federal appropriations, so funding for research, funding for um, you know, other sort of public health programs, CDC, um NIH was huge, FDA regulatory policy, things like that. And one of my clients was the Society for Maternal Fetal Medicine. And at that time I was having my children, and so it was deeply personal to me and thinking about why the system is not working for us and sort of coupling that with the maternal health crisis that continues to plague this country really felt like there were things that we could do to fix that problem. So I ended up working with them, represented them in from in front of Congress, um, got a few pieces of legislation passed to address that, which are still ongoing. Um, and then I went in-house working for them as their first chief advocacy officer and sort of found my way to the Society for Women's Health Research through that. So really loved working in the nonprofit space and really feel that it is so important to have representation here in DC. If you have anything to do with policy, which touch touches all of our lives in some way. And so um ended up getting this job as CEO, and it was really meaningful to me too, because it allowed me to broaden out our work. I think the biggest issue that we think about right now is this lack of funding for women's health research, um, which is a huge issue for us. And we look at anything that differently, disproportionately or uniquely impacts women, which again is everything, you know, depending on how you want to look at it. Um, it touches all of our lives. And so we're working really hard to close the women's health gap here in DC through our federal advocacy work.

SPEAKER_00 6:53

It's amazing work. I I want to hit on something and then go over to you, Laura. Um, so having done a lot of advocacy work, not at your level, but I I think there uh in in Washington, D.C., in my previous job, I did a lot of GA government affairs work, would go into the senators' offices or the representatives' offices, and it's always kind of interesting because we would go with another lobbyist and we'd sit there and the conversation is like, so what are you hearing? How's it going? How's things going through committee? And I think what is so important for people that are not in this space to understand is lobbyists are the people who are getting the shit done in the background. And I think, you know, put um lobbying and lobbyists have been prioritized in some ways of being like, oh, the evil, bad lobbyists. But what we don't recognize, I think, as citizens and just as general population is how much a lobbyist, number one, is taking in large amounts of information for their advocacy groups, they're distilling it in a way that they have to pitch it out to a representative in sometimes minutes or to a legislative assistant in like a 15-20 minute meeting or dinner or something like that. And they are having conversations and it's in an educational type of manner. Now, obviously, you can be lobbying for things that are not so great, but you know, in spaces like this, you're you're lobbying for things that are really important. And so you pro you are in a really critical function. And I learned that seeing it in action, advocating for health policy initiatives of really the criticality of having lobbyists to provide the information to let people know, like, well, what is industry saying? What is the public saying about this issue? How is this going to impact people? Because otherwise, these 435 people that are in Congress and these hundred people that are in Senate are kind of just responding and listening to whatever's happening on their committee, and they're getting little bits and pieces of information, and there's a lot of stuff typically that's happening through Congress. And so I I just want to make sure that people understand the role that lobbyists play outside of just the policymakers, outside of the regulators slash and legislators. Did did I frame that outright?

SPEAKER_02 9:10

Yeah, I think so. And you know, it's really interesting. When I when I left the Hill, so I had we had lost two elections, I had gone to a second office, and I was like, I can't do this again. Um, but when I left the hill and I shared with my family that I was going to a lobbying firm, my brother, who was, I mean, he's a lot younger than me. I think he was still in college at the time, and he was like, oh, what terrible corporation are you going to be working for? And I was like, well, that's not really what's happening here. Um, but really what we're in the business of is relationship building and making sure that we're making the connection so that those who are experts in their field have a voice. So even when I'm training people, uh when I was sort of doing a lot of those Hill Days, I've arranged so many Hill Days in my career. Um, it's really about if you're not at the table, you truly are on the menu. Because there's nobody else going to Capitol Hill, talking with legislators. And this even translates into administration work too, right? Like the executive branch, all the branches of government. If you're not there, making them aware of how what they are doing impacts you and your constituencies, whether that's patients, researchers, providers, you know, whatever that looks like, nobody else is. Um, just because you think something is the right thing to do doesn't mean that everybody else understands that fully. And I think the other piece too is, and you mentioned this, legislative assistants and members of Congress. The legislative assistants are handling, generally speaking, more than just whatever is the healthcare, right? I think when I was in LA, I worked on ag policy. I worked on energy, environment, foreign affairs, and so, and I was booked with constituent meetings and other meetings like every 15 minutes from 9 a.m. to 6 p.m. So it really is like the only way they're going to get that level of expertise and specificity when it comes to the policy is through those who are experiencing it firsthand. And from a lobbying perspective, we can really be the bridge between that. And so, you know, working at a nonprofit, we we do advocate, we do lobby, we don't reach there's a threshold to register to lobby. We don't do enough of it, you know, to be able to register. We we sort of balance that out with yes, we go to the hill, we educate, we advocate, and we have all of these sort of education and awareness and and research adjacent programs. Um, but we're up there often talking about it and making members and their staff aware of what they need to be watching out for and making sure that they're doing the things that we think are the right things to do and helping them navigate it. And I do think it's interesting because I think I used to think when I was on the hill that, oh, you don't need a lobbyist or a government relations professional. You know, you can just call your member, you can just call your person and and get done what you need to get done. And then it was like, well, people don't know how to do that. And the only way that you're able to do that is through somebody who ha understands the process, which is never how you're like how a bill becomes a law is not at all how a bill becomes a law, especially now. Um I know it's not accurate. I know, isn't that a bummer? Like shut down this year for a record number of days.

SPEAKER_00 12:42

It's still a shutdown, sometimes.

SPEAKER_02 12:44

And partially shut down, yeah. I mean, so the system we talk about the healthcare system being broken. I'm not sure that even the sort of way that legislation is made has ever worked the way that it should, which or the way that it was meant to work out, which I I don't know that that's necessarily a bad thing. It actually does allow for people to come together and have meaningful conversations about what is useful, what is not useful. Um, but having that sort of go-between and understanding who you need to talk to and what they're working on and where the opportunities are is so important if you actually want to get things done.

SPEAKER_01 13:24

So, so because both of you have some understanding of what you're talking about and I have none, can we back up a sec? You said a threshold you need to meet in order to register. Like what the heck are you talking about?

SPEAKER_02 13:35

Oh, yeah. So there was a lot of law many years ago because there were some bad actors who were lobbyists. And so there's lobbying is a pretty transparent um endeavor if we're looking at what people are registered to actually lobby for. So, you know, you can go into the lobbying disclosures, there's a requirement to register as a lobbyist. For us, we are non nonprofits can lobby. That's sometimes news to people. You just can't have it be sort of the bulk of the work that you do. And so when you look at nonprofits in particular, there's a threshold that you have to meet in terms of the activities that you do to be transparent in the work that you're doing. So our work does not meet it because it's it's a small chunk of the broader work that we do. Um, but when I was at the Society for Maternal Fetal Medicine, I was a registered lobbyist. And, you know, I put in my quarterly reporting. You could go in there and see. I was working on federal appropriations, I was working on maternal health. Um, you know, you just sort of list out the things that you're doing so that it's a very clear process. And that was really because people were getting into trouble because they weren't behaving the way that they should have. So Congress cracked down on it.

SPEAKER_01 14:52

Got it. Okay, so that now I understand. And um what was I I want to talk for a sec about um it's clear that you're not just advocating and educating, you're also having to understand politics and the um and what you and I had a conversation once, which it stuck with me, where you talked about how you explained a women's health issue to a group of Republican individuals in in framing it about can you share that and kind of how you how the how the understanding of politics is so important in how you educate?

SPEAKER_02 15:28

Yeah, so I mean that's a really good question, and it's something that I think sometimes makes people feel a little bit icky, right? When you think about, ooh, well, it's a slimy, right? To go and talk with policymakers and you know, you're telling them different things. That's not at all what's happening. Just as you would tailor your message to a patient, right? And knowing who they are and what it is that they care about, you would tailor your message to different members of Congress. So um, when we think about what is a priority for them, we have to meet them where they are. And so if someone deeply cares about the significant costs to the healthcare system, which many people do on both sides of the aisle, we might talk about investing in women's health prevention. And if we could make sure that women are getting screened for a variety of chronic conditions or whatever it is that they're looking for that will then on the back end save money, we might do it that way. Last night, I was actually at um a congressional briefing that was specific to Republican members of Congress. And some we like to work in a bipartisan way, but whatever will get us in a room to be able to make sure that we're meeting decision makers where they're where they are, we will do. This happened to be on endometriosis. And I watched probably a half a dozen Republican members themselves, these members don't often come to congressional briefings, come in the room and talk about why endometriosis mattered to them and how they were going to work to increase federal funding for endometriosis research. That was really meaningful. And yes, I know, I can see your face. It's like why would they do that?

SPEAKER_00 17:16

Yeah, matrix, like what's I know?

SPEAKER_01 17:19

This cognitive dissonance. Here's why it looks like that's what makes it like it's like when it's but that's like how we have to approach this, right?

SPEAKER_02 17:27

Like, okay, what is it, you know, when I would have constituents coming in and meeting with me, and I worked for moderate Republicans, which was like a totally different world, you know, 23 years ago. Number one, those don't really exist anymore. Um, we were always working to increase federal funding for something, whether it was NIH or education, you know, Department of Education, all of that. Like this is a parallel universe, probably, but it really was like, what is a personal connection? Because they're people too. So all of these people have a very personal connection to this issue. Um, and I have heard a lot of members, and we had a bipartisan roundtable last fall where we pulled in, it was really hard to keep it bipartisan because that's not where we are, sort of as a country thinking, it's very divisive, right? Publicly. It's publicly very divisive. I don't think behind the scenes it's as divisive as we think it is. Um, because they all have to hang out together. Now, some of these things play out on social media and it just feels it just feels that feels icky, right? Um, but if you can come in and meet somebody where they are and fully understand what it is that they care about, that's how you can help them understand that the power that they hold as a policymaker can actually fix this thing. So, you know, we might go in and talk about endometriosis as a as an example and you know, share that it affects at least one in 10 women, um, and which is the same proportion of women that have diabetes, and they all know what diabetes is, and diabetes gets a billion dollars a year through NIH, and endo gets $28 million a year for the same impact proportionally speaking, and they understand that. And then you start talking about what the symptoms look like, and then they start thinking about oh, my mother went through this. My wife is my daughter. And so it really is a matter of taking the time to do that. Like, and yes, you do like to your point, like we do have to sometimes explain things very quickly. Um, like if we want to hook somebody literally in an elevator, which you know, the elevator pitch is a real thing, you do that. Um, but it really is a matter of just finding out what it is that they care about and how to connect with them. And maybe you might know that Congressman so-and-so has a dog and they, you know, the dog is in the office and you ask them how the dog is doing. It's a matter of like understanding those dynamics and connecting with them personally. You know, I'm a person.

SPEAKER_00 20:08

Yeah, it is very personal. I I think when when we were advocating for a specific bill around surprise medical billing, so that's a um in the late teens um and then early 20s. Um Can you explain what that is?

SPEAKER_01 20:21

Because that sounds fun.

SPEAKER_00 20:22

No, it was not.

SPEAKER_01 20:24

Well, it was not a fun surprise.

SPEAKER_02 20:25

Yeah, surprise, you owe a million dollars.

SPEAKER_00 20:27

Yeah, no, so just super brief. It's your your hospital's in network with an insurance company, but your insurance uh your your emergency department physicians are not in network with that insurance company. And that and Katie comes to the emergency department, she thinks, okay, I'm covered, I'm I'm insured, and she gets seen by an ER doctor and uh and gets an x-ray in the radiologist, the radiologist and the ER doctor are not in network, but the hospital is, she's gonna get a surprise medical bill for being out of network, even though she went to a facility that was in network.

SPEAKER_01 20:58

Not fun, not fun, but it also seems bonehead to me because when if you break your ankle, you don't go up and say, I broke my ankle, could I please see your network?

SPEAKER_00 21:07

Well, exactly, exactly. So this played into Mtala, like the unfunded mandate, and da da da. So it got very complicated. But what was to Katie's point, what I think was really interesting is that we would have like our list of the days. Um, they would typically use me for going in to speak with Democrats and moderate Republicans, and um, and we would shift the message and then rural places. I'm from North Carolina, I have a lot of family from rural North Carolina, and so like so there was intentionality about where I would be placed and have the conversations based upon who the legislature was and kind of what their interest would be. Because you can imagine that if someone is from you know, Beulaville, North Carolina, that's where my granddad's from, um, in Duplin County, you know, population of like 2.5,000 people, you know, the interests of supporting urban hospital systems for is very Different than like their struggling kind of hospital and what that meant for those patient populations. So that was number one. But to Katie's second point, about like, I think I was surprised at actually how much Republicans and Democrats did get along in the background. And we have to realize that a lot of the stuff that we see on you know the different news agencies is all for engagement for fundraising. It's it's like it's a way to kind of galvanize, and the more kind of shock jockey you can be, the more money that you can get. And and like one of my friends who's uh uh was a congresswoman, she's uh she's amazing. And um, one of the things that she talked about is is she would tell me, like, yeah, I I was I actually talked with Marjorie Taylor Greene and we had great conversations, and it was just like what? And now, like hearing what she's saying, she actually sounds like one of the more sane people that's that's in Congress. But like, you know, it and but it was very distant because she was a Democrat, and of course, Marjorie Taylor Green was a far right, you know, MAGA Republican at the time, and and like it was a shock to me. And she goes, Yeah, we have to just what you said, Kate. She's like, we we had to work together. We we have to, we do have shared interests, we're from the same state. We had like so. I think you know, what what it tells me is that you know, what we we hear from like an election sort of thing, what happens in the halls of Congress, Washington is broken, and it is, but there's still shit that has to get done, there's still stuff that has to happen, and and each of these different legislatures have very specific constituencies because they want to get re-elected again, so they want to address the issues that are within their district. Um, so anyway, um, I was just wanted to definitely say that I was saw all the very same things, and it was very fascinating to me to see how the workings were in the background. I I wanted to ask you, so going more to women's health and the work that your team is doing, because we do, you know, Laura and I share kind of a similar we share different backgrounds, of course, and we share, we have different types of roles in what we do, but we both, of course, see that there's a massive gap in women's health um funding, in um underrepresentation in trials, and kind of structural gaps that there are in policies. And so I wanted to ask you, what does that actually mean for you in practice? So, like what are you doing to address some of those issues?

SPEAKER_02 24:22

Yeah, well, and I should say too, the Society for Women's Health Research was founded in 1990 to so we've been around for a while, and for a long time, we were probably the only organization that was working on the women's health gap. And now we are, you know, 36 years later, and there are so many more people talking about this, which is really, really important because I think the momentum we've seen over the last even five years has been a result of this community coming together and moving it forward. But what we have seen, so in 1990, we were created by a group of researchers and physicians, some OBGYN, some not, sort of sitting around saying, Wait, we're not including women in clinical trials at the NIH? What? So, which still to this day, people, I mean I it's gotten less, which is wait, y'all have different body parts, like, oh, it turns out we're different. I mean, that's usually where I make my joke about like all you have to do is like meet me and meet my husband, and you know that like our brains are different. Like these are like we just function differently.

SPEAKER_01 25:29

I have two girls and a boy, and I always say there's cheese souffles and then there's microwave pizza.

SPEAKER_02 25:36

We're so different. Yes, men and women are different.

SPEAKER_00 25:39

That seems disparaging, I'm just gonna say.

SPEAKER_01 25:41

And I know poor Otto is like more straightforward, you know, like not everybody wants a cheese souffle all the time. I get it. But I would say that it's not that the Y chromosome, there's a real misunderstanding here. The Y chromosome is not like different than the X, it's a defective broken X. It locks the wall.

SPEAKER_02 26:02

I don't know that I would say that. What I might say.

SPEAKER_00 26:06

We need the editor to edit not too friendly, you know?

SPEAKER_02 26:13

But there are differences we need to think about.

SPEAKER_00 26:16

The Y chromosome is not different. It's a broken X chromosome. Oops, you've heard it first. You know?

SPEAKER_02 26:29

Oh my goodness. Well, that might be a good message that we could take to somebody who might be one of my messaging for your male legislators.

SPEAKER_01 26:40

Certainly, it got a chromosomal defective um def deficiency is not going to be. It may not work, but it would probably work for somebody.

SPEAKER_02 26:50

But I so but the the point really was that women were being actively excluded from clinical research because you know, hormones are really difficult to account for. Um, I think the general thinking then was that it's riskier to include women of reproductive age and let's just do the research in men and male cells or male mice, um, and just extrapolate the results out. And it's fine because women are just small men, which we know not to be true. But it was like it was really hard. Yeah. Yeah, right. So so we were founded to fix that. We worked with Congress, bipartisan Congress, mostly women, the bipartisan women's caucus, to get a provision into the NIH Revitalization Act in 1993 that required inclusion of women in clinical trials. So we did that. Then we were like, well, we're not looking at female mice. That doesn't make sense either.

SPEAKER_01 27:54

You know, mice don't even menstruate. I know. That's the other thing. It's I read somewhere it's because they're messier, right? Like they they they they make more of a mess in their case.

SPEAKER_02 28:04

It's hard to control. Oh, oh, I don't know about that. That could be, but I think it's hard to control hormones. And when you're trying to conduct a clinical trial, right? You know this. You want to control for every possible variable except for the thing that you're trying to test. So it does make sense if you think about it that way, that that's why you wouldn't have to consider different sexes when you were doing basic research. Um, but it's not realistic and it led to a lot of issues, um, including dosage for medication, that pathophysiology of disease might be different, metabolism, etc. So in 2016, which was only 10 years ago, we were able to work with the NIH to make sure that they were requiring the consideration of sex differences, which was a huge thing. The thing I would say though is that there's more work to be done because all researchers have to do is say that they considered whether there were sex differences. They don't have to necessarily collect the data or analyze the data to truly understand sort of what those differences are and why they may or may not be meaningful. So we're working on that too. But I think this historic lack of inclusion, A, puts us really far behind. Um, it leads to and has led to clinical guidelines being based on male bodies. And actually, I would even go so far as to say it's actually based on a unisex person that doesn't really exist. Because if you're not accounting for sex differences, you're not helping anybody, right? It's just bad for everybody. So, you know, we have clinical guidelines and treatment guidelines, even in heart disease, right? That were based on men and not recognizing symptoms look different for women. Right. Yeah, totally. And like there are there are women who are, you know, I'm feeling really tired. Um, what could that be for them?

SPEAKER_00 29:57

Gave her an acid, dead the next day, unfortunately. Like, I mean, like it's clearly not. Yeah, you know, um, and and it's like, I mean, I love my grandma brow, but you know, it was it was one of those things where as an ER doctor, I look back and I was just like, she had the most typical of symptoms that are called atypical, you know, for a woman of her age.

SPEAKER_01 30:22

Well, this is the thing, right?

SPEAKER_00 30:23

That it is typical, right? Very typical. The most typical, atypical, that's not atypical. Yeah, that's right. No, it's you brought it. I just learned something. I did not know mice did not menstruate. I did not know that. So thank you for educating me. I had no idea. No, I try not to think about that anyway.

SPEAKER_01 30:41

I'm full service.

SPEAKER_02 30:43

It is important though, because it it actually limits us even further, right? Like, okay, mice are important in a number of ways, but if you're trying to look at some sort of issue, like maybe uterine fibroids or menstrual bleeding or whatever, and you're trying to account for it, like it's not gonna help. So we do need to look at those non-animal models, which I do think, to their credit, this NIH is looking at. And so that actually I think will be really important for us as we think about how to be more precise in our research.

SPEAKER_00 31:13

So I've got a question, it's a spicy one, so buckle up, all right. So uh oh. So so I'm gonna just make a declarative statement, then a question. Women's health has become quite politicized um over the last few years, and so, especially in the current administration, um, to the point where there's been funding cuts. We just saw the release of like depositions from Doge people um going through using Chat GPT that anything that had diversity, sex, LGBT things, like those different types of of grants and things were were you know excommunicated from the grant database, etc. So I'm gonna kind of give a bifurcated question here. That was the framing. So, how are you navigating now the current politics where discussion about sex is very challenging on the pol on the one side of the coin where there's a negative view of anything, diversity, equity, inclusion? On the other side of the aisle, there's like what is a woman? So that's like where you kind of see a bipartisan break of, but still could harm women's health. Um, and then but I'm also seeing in the private sector much more discussion and buzz around the priorities around women's health. So where does that leave us? That's the spicy question. Is like, are we pushing for meaningful progress? Is that actually happening? Or are the politics really screwing things up, but yet the private side is like picking up another grant. What where are your thoughts on where we are and the challenges with progressing forward?

SPEAKER_02 33:00

Yeah, I I will say this the metrics of how we measure success look a little different than they might have looked before. And that's the case, I think, with any administration change. True. This just seems more so, right? Like it just feels because it's hard to predict what's gonna happen. So I'm gonna read you a quote and then I'll tell you who it was from. It's absolutely vital that the NIH invest in in women's health. That's not DEI, that's just how you answer basic biological questions to make women healthy. That came from the NIH director like two days ago in front of Congress. So we're gonna be able to. So I think the answer to that, yes, it is very concerning to use this, you know, control F for words that maybe they're not understanding what they mean. Like this issue of sex and gender was a huge concern last year when there was this movement to remove references to both of those things. And and we sort of came in and were like, listen, sex differences is really important. That is different and not less important, but it's just different from gender differences. That's the societal impact, right? Um of being a woman or a man on your health and well-being, those social determinants of health. Sex as a biological variable is gonna help you get to some of these issues that will make everyone healthier. So while some things came, I mean, a lot of websites came down last January, February, the sex as a biological variable policy was one that we were concerned about. It did come back up. We sought clarification because there were some weird things at the bottom of it that sort of said, like, this is a historical document. And I sort of said, well, does that mean that it's a historical document that we no longer follow? Or does that mean that it was just created in you know a certain time period, which makes it historical? We got clarification that it it is it is the latter, so it's it's still in effect and they're using it very carefully. The thing that we I think as a research community are really challenged in right now is, and this goes back to how are you framing the the way that you talk about something, which feels hard, right? Like this issue about DEI, it's very difficult because it's it's not like advantages for certain populations, it's actually looking at the population that will be most impacted or is most impacted by a certain health condition or issue. If you look at women's health, the disparities between black women and everybody else are worse in every single category. You know, you name it, it's bad. And so that's the data. So you have to look at these populations to be able to get the answers that you need. Nowhere in there did I say health equity, nowhere in there did I say inclusion or diversity, um, which is tricky because for years, researchers have been told you have to study health equity, you have to use these words. And so it the flip has been, I think, really hard when you think about how you talk about your research. We are now just working through like how do we explain this in a way that makes sense. And I've seen, I mean, I've seen members of Congress and I've seen federal officials say things like, the data is telling us that there are disparities and though there are meaningful scientific questions that we have to answer. So, yes, like the cuts or the threat of cuts are very real. We've been able to restore the cuts to the women's health initiative that we saw last year. We have a very strong and in we have increased funding for the Office of Research on Women's Health. Last week, the Office of Women's Health at HHS did host a national conference, which was interesting and nice to see many people in the room. We could probably talk about like whether there needed to be some more scientific sessions there or different sort of ways of thinking about it. But all in all, I do think that they're they see the value in it. It's just a matter of trying to figure out how to navigate it. Because the other thing that I will share is the uncertainty of the cuts. Like the the president is gonna propose a budget that, you know, last year it proposed a 40% cut to NIH. In no real world was that going to happen. There's strong bipartisan support for the NIH. They actually clapped back and increased. It was a small increase, but I think of the $400 million increase at NIH, 30 million of it went to the Office of Research on Women's Health. So there is year over year an increase. The issue right now that I am really concerned about, which gets really into the weeds, is the that the money is not moving out of the NIH quickly enough. It's being held. And so, and I know I was just talking with some members last night about who I happen to catch, and they brought it up, and I was like, oh, this is a real problem. Here's what we're hearing from our researchers. They have been approved, but they're not getting the money. And you appropriated that money, so you might want to call over there.

SPEAKER_00 38:24

So that's exactly, and I'll just make this comment and then shut up. But like, I that is where I'm seeing the the you get bipartisan support in Congress because like they're starting to say say things like, No, we kind of do need vaccines for measles, that's kind of important stuff. And then and then all of a sudden it gets to the agency, the executive branch level, and you've got a someone who's you know completely just into politics and not uh the political review is definitely a concern for everybody on the hill.

SPEAKER_02 38:55

I heard that loud and clear, and there will be questions about this for sure. Um, I think that piece of it has been the other thing, I guess I would share too, is that all of the Doge cuts, I mean, I'd be very curious to see how many of those held because so many people have been either hired back or they've hired to replace. And, you know, I I just don't know that exercise was meant for something, but I don't think it was meant to actually.

SPEAKER_00 39:23

I think it was all political, political expedients and it and it's same thing with the DEI comment that you made earlier. These are just nomenclature flips, and that we're having to just message differently so that certain audiences aren't triggered. Um, then fortunately, there's like a lag between kind of getting it right and it's hard.

SPEAKER_02 39:44

I mean, there's a lot of uncertainty with researchers who are at very critical moments of their research and they're concerned that they're not gonna be able to have those scientific discoveries, and we share those concerns. It's a matter of like how much what is real and what is not real, and how do you get to the bottom of that to be because you don't want to sound an alarm and say this study is being cut, and then to have it turned around and say, Well, we never said that, that's not true, because it's not technically true, so it's really just more of like a learning experience for us all to figure out the best way to approach it.

SPEAKER_01 40:21

Okay, so we're gonna have to start to wrap this up because you have to go do important things on the hill. But I for me, so we always say, you know, we're looking for solutions. For me, the thing that I think I've learned the most listening to you is that a lot of what we hear is clickbait, rage bait, and actually, even though the public seems so far apart and down to like fist fights in the street, the people who actually represent those different sides are working together and do get along. And I think that maybe Joe Public could learn something from that. Um, and we always so but if you know if you could name one problem that you see and a solution, like just one little one, and all of that stuff you're doing, what's the one little problem and solution you can't?

SPEAKER_02 41:11

Well, I don't know if this is little, but I can't I come back to the funding, right? Like we're never gonna have enough funding unless there's a significant investment across the board. And that's not just for basic research, it's for translational, it's for workforce, it's for fixing the regulatory pathway, it's for education and awareness. So until Congress decides, and this is what we're trying to do every day, right? Like this should be your number one priority. Nobody opposes women's health research, really, right? Like nobody's like, oh, I hate that. I don't, I don't think we should know more about women's bodies, which in some circles, yes, people I think do feel that way. But on the whole, like that's nobody's opposed to this. It just isn't rising to the top. So if we can really get in there and get some some funding for the research, yes, at the federal level, but the phil philanthropic side of things, industry, which does, to your point, have a lot more interest and they're learning how to apply things to women's health that maybe they weren't as interested in before because I think they finally realized this is a huge consumer market for them because of money maker. Yes, this is about making it's it will make you money, I promise.

SPEAKER_00 42:21

It's like your your addressable market is like pretty large here.

SPEAKER_02 42:25

So yeah, so I think just we have to elevate the funding levels and and not in the few millions. Like I mentioned, Endo was at 28 million, that is up from 7 million, so that's great, but it's billions of dollars that need to be dedicated, and that will now you're not gonna see the savings right away, but you will see cost savings, you'll see health and well-being, longevity, etc. And that will be for men and women. It's not just gonna help the health of women. So to me, it's a money at the heart of it, it's a money problem. Show me the money, okay.

SPEAKER_01 42:57

Adam, any thoughts? Have you learned that?

SPEAKER_00 42:59

Yeah, I mean, I listen, I Katie, I could have talked for a long time on this because you are like ticking so many bucket uh you know buttons for me or boxes for me that are like, I love politics. I I mean it's some of the work we do at ABIG. I love, love having these conversations and understanding the inner workings. Um, you've also given me some hope, I think, you know, around what what is happening. Not only are we seeing some movement in industry, uh, which I think is a really good thing, but also, you know, the the people are pretty savvy on how to shift and change uh word choices and priorities to make it uh interesting uh to certain members of Congress. And you've made me hopeful that actually some members of Congress are working closer together than we oftentimes think. And so I think that's good. It's also amazing the work that you're doing, and I'm hoping that people are listening understand the value of what lobbyists do. So um I I think my very last 30 second question is, and then we'll wrap, is if we assume that health care is unstable. Is it can this can this be stabilized and are you hopeful that it will be stabilized?

SPEAKER_02 44:06

Yes, and yes, if we can create continue this movement, right, that is sustainable. The thing I would say is it's gonna take all of us working together, right? Uh outside of silos to be able to move it forward. But I I I think not only am I hopeful, like we have to do it because if we don't, I mean, you can already see what's happening. The system the system is crumbling. It is working the way it was intended to, which is to reduce waste, fraud, and abuse. But like we need to reimagine a system in which health and well-being is centered and you know, time is valued and uh the work is valued, and there's ac you know, appropriate reimbursement for services, and you actually know how to treat somebody who's presented to you. But yes, I think I I've never actually been more hopeful aside from like the noise happening, because of the progress that we've seen over the last few years, we never would be talking about trying to get billions of dollars for women's health research. And we've been at this for a long time, so there's there's finally things happening.

SPEAKER_00 45:11

Well, Katie, it's so great to have you on. So that folks is Katie Schubert, president CEO of Society for Women's Health Research, based out of my friend B. Yes. And um, Katie, let's go grab coffee sometime or a drink. You know, I live just outside of Georgetown, so um, but it's so great to have you on. I really appreciate the work that you're doing, it's impactful and important work. And folks, make sure you like, follow Katie and her team at SWHR. Katie, thank you so much. We really appreciate it. Thank you. Have a wonderful rest of your day.

SPEAKER_02 45:43

All right, bye.

SPEAKER_03 45:45

Thanks for tuning into Unstable Vitals. If you enjoyed this episode, make sure to follow us for more unfiltered conversations on the pulse of healthcare. Connect with us on LinkedIn or visit us on Unstablevitals.com to stay in the loop.