Episode 4 - Coalition Member Spotlight with Preeclampsia Foundation CEO, Eleni Tsigas

Hello, and welcome to today's episode of The Power of MoMMA's Voices Podcast, where we'll be sitting down with two time severe preeclampsia survivor and chief Executive Officer of the Preeclampsia Foundation Eleni Tsigas. MoMMA's Voices is a program of the Preeclampsia Foundation, and as you heard about in our first episode, it began from recognizing that changing maternal healthcare in the US started by bringing everybody together. All types of patients and their families have been affected by conditions like pre-eclampsia and so many others. Eleni, thank you for being here with us today. Obviously, we began this Power of MoMMA's Voices Podcast to help support patients with lived experiences. So would you start by telling us just a little bit about what brought you to your work with the preeclampsia foundation?

Well, that's an old story because my experience with pre-eclampsia happened, as I like to say, before the turn of the century. Back in 1998 and 99, I did have severe pre-eclampsia twice. The first time unfortunately we lost our daughter, our first born I was 29 weeks pregnant and it was a whole different world back then. In some ways, and in other ways we're still hearing the same stories, which is truly sad. To summarize my preeclampsia journey, it started with the loss of my first child, getting pregnant again and having severe preeclampsia with my second child. But in that one I was being seen by an MFM and felt and looked like a completely different pathway where I was carefully monitored. Unfortunately, my son did suffer from growth restrictions, so he ended up in the NICU for a couple weeks. I was in the hospital for a couple weeks before he was born. He was in the NICU for a couple weeks after he was born. And then crazy that we were, we just really didn't want an only child and went for a third pregnancy. And in that one I was seen not just by an MFM, but kind of a super specialist in preeclampsia. We did some at that time what were more unorthodox measures to try to prevent me from getting preeclampsia a third time. And it worked. My son was born at 39 weeks weighing eight pounds, twice as big as his brother. I feel like through all those three pregnancies I had the full gamut of every experience you could possibly have, including nearly losing my own life in my first pregnancy where I had all the classic issues of my organs shutting down and I had an undetected placental abruption, so I lost half my blood volume when I delivered my daughter. My own personal experience began before the Preeclampsia Foundation was even founded. And so I didn't have that resource through my first two pregnancies, but I think it's because of that I am so passionate about those who are affected, having a place that they can come to get reliable information, to find a community that they can connect with. A lot of people don't necessarily have the kinds of support systems that I had in place. And you see the result of that in just how mentally devastating this is on all levels.

That's something that you and I share unfortunately. We're still seeing people coming to us that have lost babies because of preeclampsia. Even though our experiences are like you said, preterm of the century or mine's not quite that far, but still it's not recent. It's still things that we hear about today. I'm glad to hear that you found the Preeclampsia Foundation and I did as well when we needed it and when we were able to use that to kind of bring that, that meaning forward. Let's talk a little bit about like, what's happening in the present. As most of our listeners are probably aware, we have serious maternal health crisis here in the US which has only recently been brought forward to the national attention, and it just keeps having light shined upon it. What moment did you first start to see healthcare providers and policy makers starting to take this work that the Preeclampsia Foundation does and their other partners very seriously?

I think there were a few inflection points. For preeclampsia specifically I feel one of our major inflection points was around 2012, 2013 when Dr. Jim Martin, who unfortunately we lost last year, but when he became president of ACOG, he made it his passion to elevate preeclampsia in that issue. As an organization focused on preeclampsia, that was a key point in a lot of the progress that we started to make around the importance of patient education and developing guidelines and protocols. But on a bigger level, which is really what we're trying to do now with MoMMA's Voices is elevating the maternal health experience overall. I really think that one of the main inflection points was when we finally got major media to start investigating this problem. While we did a lot of work to get the Preventing Maternal Death Act passed, a lot of that was driven by the ProPublica and the USA Today. That really brought this whole issue out of the shadows. Those series started to highlight well-educated women who had access to resources and to good healthcare, and they were dying in pregnancy. All of a sudden I think people started to realize this isn't just an issue around access to healthcare or the disenfranchised having these issues happening to them. These articles really brought out the fact that this is a widespread issue. And then once you start peeling back the layers and you realize not only is a widespread issue, but the disproportional burden of that issue on folks who don't have access to healthcare or have less access to healthcare or are living in rural areas of the country or we're suffering from racial and ethnic disparities on this issue. And just the extraordinary burden on certain populations. All of that came to light when media started paying attention to this, and we were able to get the Preventing Maternal Deaths Act passed, which really shored up the data collection part of this because it allowed then the resources and allowed the states to focus on collecting data about the moms who were dying. That gave us the fuel we needed to understand where the problem's happening, what are those preventable measures? What are those key areas that we really need to be focusing on. As a result of that, I think that we're just now seeing so many promising steps and measures being taken.

What Preeclampsia Foundation program, besides Mama's Voices of course, has you most excited for 2023?

I will say for 2023 in particular, there's a couple of areas. The 10th anniversary of the preeclampsia registry, which is a research asset that we created 10 years ago, and under that umbrella of our role in trying to catalyze research by funding studies, but we also wanted to utilize this vast community of survivors that we're working with to collect their data and provide that in a way investigators can use in their studies. We provided the data needed for a number of different studies. Everything from genetic studies that help us understand some of the genetic underpinnings of this disorder, as well as qualitative studies that help to collate all of the information that we as survivors know about our experience and collate it in a way that investigators can then report on it and identify those experiences that we have as patients. Investigators are very evidence-based, and even though we know as survivors, like our stories, our experiences can be super instructive. For investigators who want to use that information, we can package it for them in a way that combines it with other stories, and we start seeing trends and patterns and things that aren't just outliers, right? It's not like this just happened to Eleni, or this just happened to Nicole. No, it happens to many women and pay attention. We've got the data to to show for it. The registry has allowed us to do with what we call qualitative research to help investigators understand the preeclamptic experience and really represent that on behalf of patients and survivors. The registry itself, one of the things that we're launching in 2023 is a Take 10 campaign, and that's really intended to focus on the enormous need to increase diverse representation of all women in the registry. We know that it will affect the science if we're not all equally represented in the registry. We're working with a number of different partners who work, especially with Bipoc women to increase their representation in research.

That's always just so important on having that patient voice, patient participation. I know you mentioned just on one thing there, but we also are very interested in having patients help design those projects as well and not just be the subject. That's sometimes a novel thought, but we're getting there and we do see improvements in that happening. What can be done to improve the way preeclampsia care is managed here in the US?

That could be like a five part series just by itself, Nicole. But I would say look at some of the issues we're addressing. One is a term that we've coined called the three Deadly Ds. This is where the patient voice is so instructive because as you hear, 20 years into this process, we have heard tens of thousands of stories from preeclampsia survivors, and one of the things that tends to get repeated is this idea that patients are experiencing delays in getting the care that they need. They might be in denial that something bad is happening. Why patient education is so important. Here's what you need to pay attention to and don't ignore it and don't be like supermom and all these things. So there's a lot of denial. We often will talk about the nurses or doctors or healthcare providers denying what they see in front of them. And that definitely is part of it, but it's also on us to not deny what we're feeling and what experiencing. That can be deadly and we were working to overcome that. The last thing is dismissal, and that's where we try to have our voices heard. We're trying to report what's going on with us and we're just not being heard, dismissed, we're being, sent off in a different direction because that's just normal pregnancy. I do think on all of those, the tide is turning. I mean, we've worked with the CDC to get the Hear Her campaign launched. There are a number of individual programs. We're working with Texas, by the way that's something else I'm super excited for 2023 is working with one of the big five baby states, which is Texas and a state that's gotten a lot of notorious attention for not having really great maternal health outcomes, and we are just privileged to be working super closely with the state to deploy the hypertension, severe hypertension bundle or protocols to turn that around in that state. Denial and delays are things that we are working to overcome when it comes to preeclampsia. The other thing I'm just gonna mention real quickly, and I would love to be able to rewind this podcast like five years from now and go, wow Eleni was so prescient. She looked into her crystal ball and knew where all this was going. I'd love to say that's true. In the future, but I think increasingly we're recognizing that for preeclampsia to be solved, it requires a precision medicine approach. We're focusing a lot on the hypertension part of preeclampsia, but we also need to focus a lot on the placental dysfunction. What's breaking down in the placenta. Some people get preeclampsia because of all the cardiovascular part of it, and other people get preeclampsia because of the placental dysfunction part of it. We need to get to a place where we very precisely diagnose what kind of preeclampsia you're getting, why you are getting it, and then customize the treatment accordingly because one size fits all ain't gonna work. We're seeing that over and over again. So I'm super excited because I think that a lot of the research that's happening in academic institutions and even a lot of the companies that are starting to invest in this space are realizing that that precision medicine approach is what we need.

Sometimes it's hard to see where that progress is being made and change is being made, but I know those of us that are in this work and working with states, like you said, Texas, and we see these things, we do see where there is progress. It might be slow and incremental, but there is progress being made. If only there was a magic wand that we could just wave over the US and it would solve all the problems. Now that the Preeclampsia foundation's more than 20 years old, and you've been around for a while what things have you seen that have been changed since you first came around to the Preeclampsia Foundation?

It's so funny because even though we hear these stories and I think, oh my gosh, I can't believe this is still happening since this happened to me 20 plus years ago. The reality is that there really have been a lot of changes, and I think that we're seeing a lot more now around patient education and empowerment. We talk a lot about how in the early days we were so focused on getting moms and their family members to recognize the symptoms of preeclampsia so they wouldn't ignore them. That is all now part of protocols. If you're not doing patient education, you're practicing bad medicine and the joint commission and other, governing bodies have implemented patient education as a requirement. That's a huge leap from 20 plus years ago. And then I think the corollary to it, we talk about signs and symptom. The key sign of preeclampsia is high blood pressure. Now we're starting to see more uptake of self measured blood pressure and putting blood pressure devices into the hands of moms, especially those who are at higher risk and teaching them how you can monitor your own blood pressure. That's something that has been become a huge thing. Of course our own cuff kit program is an example of patient provider teamwork that we're always been advocating for. There's also a much greater biological understanding of preeclampsia, and I alluded to that when I talked about this precision medicine approach. We do understand more about what's happening biologically, and I think the other thing is the standardization of basic care What we're doing in Texas this year, and we've done with many other states in the past five to seven years, is all about standardizing the basic level of care. And I emphasize basic because we need a lot more than what's happening with the severe hypertension bundle. But if everybody just does that, then we create a safety net. And that is something that has really garnered a lot of progress and that we've seen happening in the last 20 years. So it's an exciting time to be working in this space. It really is. I mean, 20 years ago it was frustrating. Like we just felt like we were hitting our heads against a wall. But there's a lot happening now.

You talk about like the customization of care and really treating each patient individually. But then there's also the basic minimum things that need to happen. From there is where you're able to really take care of patients by treating them each individually. It's not that peanut butter and jelly approach. It's not the same thing for everybody. Different states look different. Different parts of states look different. Everybody is individual Factory assembly line processes now kind of happened with healthcare and with maternity care, in part because they're trying to hit these minimums. But that's not enough. That's a minimum. How can those that have lived experience and preeclampsia and HELLP, all these different hypertensive disorders of pregnancy, get involved in working with the Preeclampsia Foundation?

The first step is to join our community, and there's so many different ways that, somebody can do that. Certainly come to preeclampsia.org. That's sort of the hub of everything that we do. But we have a number of social media channels. You can contact us through those. You can contact us through our Facebook group. You can reach out to us via email, sign up as a volunteer. We have a lot of programs. Getting involved with MoMMA's Voices and becoming a Certified Family Partner is a no-brainer. But I say that at the same time, somebody may not be quite ready to do that and go public. They may wanna work more behind the scenes for a while. The Promise Walk for Preeclampsia is a community building fundraising event that a lot of folks have gotten involved in across the country and then a lot of people are just kind of in this DIY mode. They wanna a do-it-yourself fundraiser that speaks to their own interests or they want to do education and outreach in their local church community or other communities that they're involved in locally. The main thing is get in touch with us because we do try to match you with opportunities that are where you are, the place that you're at and then you're ready to get involved.

One last question as we wrap up. Is there anything else you'd like to make sure that listeners know about the work that's being done right now by the Preeclampsia Foundation?

For listeners who are preeclampsia survivors, the message really. is one of hopefulness that there is a place for you to get involved with us, to use your experience and your story to make a difference. There is a message of hopefulness if you are still interested in having more children and doing it in a way that optimizes your health outcomes. There's a lot that can be done now. We know a lot more to ensure that you have a safe pregnancy. For providers and other stakeholders who are listening to this, I think the important thing to know is that the Preeclampsia Foundation, we've really established ourselves as a collaborator, as a partner, as somebody who wants to work hand in hand with you to make the world a better place for those who are living or who experience hypertensive disorders of pregnancy and our credibility and our history now of working very collaboratively and very productively with stakeholders is something that I would just invite anybody to join us.

Eleni thank you for your time today and sharing more with us and with our audience about the Preeclampsia Foundation, and we look forward to being able to share the same information with other organizations and have them spotlighted as well.

Thank you, Nicole.