In this episode of Deep: The Health Marketing Podcast, John Mangano is joined by Sara Hayes, SVP of Communities at Health Union. Sara oversees over 50 online health communities that connect patients with shared experiences, offering support, information, and inspiration in moments that matter most. Together, they explore:
- The unique role online communities play in supporting patients with rare and chronic conditions.
- How anonymity and accessibility are changing the way people share and seek help.
- The surprising ways patients find purpose and advocacy through their health journeys.
Sara shares moving stories of lives changed, the delicate balance of privacy and connection, and insights every health marketer, patient, and caregiver should hear. This episode drives home why real connections matter more than ever.
Transcript:
John Mangano (JM): Welcome to Deep. I'm John Mangano. Today we're going to talk about health communities. For as long as there have been health conditions, people have relied on their community to help them understand more about it — because people need to know what to expect, and they need to know they're not alone. The challenge is that a lot of conditions are very rare, and in the real world, it's hard to find someone else who has it — or the topic is so sensitive that people don't want to talk about it at all. That's where the internet is really valuable. It lets people across the country talk about very rare conditions, and about things they might never bring up in person.
Today I'm joined by Sara Hayes from Health Union. Sara supports over 50 health communities, helping people living with a condition connect with others who share it — people who can talk through how they're coping and provide crucial support for one another. Sara, so good to have you here. Welcome to the show.
Sara Hayes (SH): Very excited to be here, thank you for having me.
JM: What I like about having you on the show is that you're different from most of our guests — a lot of them come from marketing, agency, or ad tech backgrounds. Tell us about yourself.
SH: Sure. My background is in public health. I've always been interested in health communications, and I've worked across a variety of healthcare settings — in clinical trials, on the provider side helping facilitate patient and healthcare-professional communication and shared decision-making, and a lot in patient education and healthcare communications generally. The role at Health Union, when I started almost eight and a half years ago, really spoke to me — it was a different way of reaching patients. Since then, I've become genuinely interested in ad tech and marketing more broadly, but it's felt like a perfect fit.
JM: We often talk about the business side of things — the industry, the work — but it always comes back to people, whether that's patients or those of us helping communicate with them. What gets you excited?
SH: For me, it's really about casting a wide net at Health Union and reaching a lot of patients with the voices of other patients — helping them connect with others in the moments that matter most. If you boil down my whole career, it's always been about helping people in a time of need throughout their healthcare journey. In this case, it's helping people who are looking for support or information, who happen to be looking for it online — and we get to provide a really valuable service by connecting them with each other.
JM: You're the SVP of Communities — and you have a lot of them. I remember when you started, it was maybe five communities. Now you're at what, over 40?
SH: We're over 50 now.
JM: Wow.
SH: Really — I think we've gotten good at launching and growing communities. My role focuses on the development and day-to-day management of those online health communities. We have a variety of formats: broader umbrella communities, like our rare disease platform, which connects rare disease patients across many different conditions, and then most of our communities are condition-specific, with a few umbrella conditions mixed in.
JM: For those who don't know — Health Union is usually not the brand people see, unless you're a marketer working directly with the company. Can you walk through the brands your communities typically work with, and how they interact with Health Union's assets?
SH: Sure. Most of the brands we work with are in the biopharma space, and they're looking to reach patients in the moments that matter most — whether through our endemic publishing and direct offerings, through programmatic and data activation, or now through our newer HCP offerings. Companies typically come to us when they want to reach the right, qualified patient population with the right message at the right moment.
JM: But patients themselves aren't going to healthunion.com — they're going to a variety of different websites. How does that work?
SH: Right — most patients on a Health Union community don't know the name "Health Union" at all, and that's totally fine. They're focused on their condition. All of our communities have a condition-focused URL — migraine.com, for example, was our first community. Patients typically find us a few different ways: through social media, where we have a large following, or by seeing someone they follow share an article; through an influencer they follow in our social health network — a patient influencer sharing content they've written for one of our communities; or through search, where they're looking for information and end up landing on one of our platforms, usually looking for information, support, or some blend of the two.
Once they land there, they've really found their condition's "home." They're finding content written by other people who live with the same condition — or their caregivers — and forums and other ways to interact with patients like themselves.
JM: Patients are looking for community — people to talk to about their condition — and there may be no one in their real life to talk to, or the topic might feel too personal to share with coworkers or people they know. This gives them a way to talk about a condition that maybe no one they've ever met in person has experienced. Tell me more about that.
SH: For a lot of people, they've never met another person with their condition — thinking about rare diseases, rare cancers, or even more common cancers, they just don't happen to know anyone in their life who's been through it. Or they might know people, but don't feel comfortable disclosing something so personal to a friend or colleague. Online, they're really looking for others who've had that lived experience, in a way that can be more anonymous — they can choose a username, a pseudonym if they want, or they can just browse and read without commenting at all. We find that a lot of people get real validation and support just from reading someone else's story and thinking, "I'm not alone — someone else has gone through this." That alone can be incredibly helpful in a time of need.
JM: The internet gets a lot of grief for unsavory activity — certain sites we won't name on this show, or emails from long-lost royalty offering to free up some money that never actually materializes. But the reality is, those are just symptoms of what makes the internet so valuable for health: it allows for scale, which helps enormously with rare conditions, since you can find people who simply aren't available in your local area, or are too rare to find any other way. It also lets you talk about things you otherwise just wouldn't. That anonymity and privacy is exactly what makes it such a valuable asset for people living with a condition — for all the right reasons.
SH: And beyond anonymity, it's also great for people with mobility issues, or weakened immune systems, who might not be able to attend a large in-person support group — maybe they don't have anyone to drive them, or can't walk that far. Even before Covid, we'd been in the community space since around 2010, focused on connecting people online. I think Covid woke the rest of the world up to what it's like living with a chronic health condition — always worried about catching an infection, worried about large crowds, more homebound and limited in how they can interact with others. The online space shifted a bit during Covid, but our communities were already thriving well before that.
JM: And people's openness to using the internet has changed a lot. When I started in this space, we had to help people understand why the internet was even good for patients. Interestingly, conditions tend to skew toward older populations — not always, but often — and it's been roughly a generation since the internet became widespread, so now nearly everyone is comfortable online, even older patients. I started using the internet when I was young, and I'm slowly moving into that older demographic myself, so it feels completely natural to me.
SH: We have patients of all ages, and that's been great to see. My own mother, who isn't exactly tech-savvy, uses one of our communities. It's funny — she had no idea it was a Health Union community. She just mentioned her newsletter from Asthma.net, and I said, "Mom, do you know that's where I work?" She had no idea — which is great, honestly, because our name doesn't need to be front and center. It's about the patients. No one really needs to know who's behind it.
JM: How are patients using communities to communicate and learn more about their conditions?
SH: I'd say most patients come for support, information, and validation — or some combination of the three. That's true whether someone's a "lurker" — and we love our lurkers, I'm a typical lurker myself, someone who reads every comment in a thread in depth but is highly unlikely to post — or someone who's more active. Our communities are designed for both, so people can get the information they need without revealing anything they're uncomfortable sharing, or handing over their email before they've had a chance to check things out for themselves.
We've done research showing that people typically turn to these communities during big moments in their healthcare journey — when they're experiencing a new symptom, thinking about changing treatment, or considering switching physicians or care teams. They're looking for information and support to help them take that next step.
JM: So it's really at the moments that matter most in the treatment journey.
SH: Absolutely.
JM: Do people share things they wouldn't normally share in real life?
SH: Definitely. It's funny — a lot of people say their online health community friends, people they've never met in person, know more about them than their spouse or family does, just because they connect on a different level. People share really intimate details, to whatever degree feels right for them. It's not for everybody, but some people feel very comfortable — and that's often when we see someone take their first step into advocacy, becoming a health leader or influencer by sharing their story. It can be really empowering to put that experience to use for a purpose. People share intimate details both to connect with others and, in a moment of vulnerability, in hopes that someone else in the community might have an answer, or information that could genuinely help.
JM: And they're never required to give their real name — they can use whatever name they want, so their privacy is protected, but they're still recognized as an individual.
SH: Absolutely, that option is always there. And you can always change your mind — if you decide you no longer want emails, or want to review the privacy policy and change how your activity or cookies are tracked, you can do that at any time. You're never locked into a decision forever.
JM: This has actually affected my own family. My sister had an ultra-rare condition — we're talking maybe a couple hundred people in the entire country, and probably none where she lives in the Southeast. She was actually able to help diagnose her own condition based on what others were sharing online, because, frankly, her doctors had never seen anyone with it before — why would they even suspect it? It helped her find the handful of doctors who could actually help her. That's really where the power of scale benefits everyone's wellbeing.
SH: Those stories aren't uncommon at all. We talked earlier about how the internet can sometimes be an unsavory place — I'd say we're lucky to work in one of its most wholesome, genuinely altruistic corners, where people are truly just trying to connect and help each other. So many people have told us something similar: "I was able to diagnose my condition through information I learned from others in the community," or "this community saved my life, because I got information that changed the course of my treatment, or how I advocated for myself."
JM: What does the future look like for health communities?
SH: I think they're here to stay, and they won't necessarily live on one single platform. The number of places on social media where people can connect and share their stories is only going to keep growing. TikTok is huge right now, though not for every condition or patient. Facebook is still hugely popular for a lot of people. Before the rebrand, Twitter was a really strong place for certain communities — particularly some cancer communities — who held scheduled chats there. So community lives wherever people find it — the platform itself is where people find information and connection, but that connection can happen in a lot of different places. Community is really wherever you look for it.
JM: What's your favorite story of making a real difference for a patient through these communities?
SH: I have so many. We actually have a Slack channel just for sharing these stories — a great thing to scroll through on a bad day. One favorite is from a colleague of mine, one of our community managers, who lives with psoriatic arthritis and developed avascular necrosis in her knee in her late twenties. She ended up on disability, wondering what her life would look like from there — she didn't even work in healthcare, she worked in IT. She found a community, and people there shared lifestyle changes, tests, and treatments they'd tried, and gave her questions to bring to her healthcare team.
By that point, she'd already seen over 30 healthcare professionals who weren't giving her any real direction. But the questions she picked up from other patients changed the course of those conversations, and she was eventually able to try a new treatment — she actually began regrowing bone in her femur through a new procedure, and started walking again. She got her life back as a young adult, and it changed her career path entirely — she moved into healthcare and online health communities because of how much it had impacted her. We're talking about people who feel like their life is over — we hear that a lot from young people put on disability early. What's the rest of my life going to look like? I think what people get back from a community — and what they give back to it — can really change the entire course of their treatment, and their outlook going forward.
JM: And it really matters — even for someone who would've eventually gotten treatment anyway, getting there a year earlier is huge. A year is a very long time.
SH: In a year when you're in a really bad state, absolutely. The physical side of a health condition can be brutal to live with, but I don't think people always consider the emotional toll — how much it affects your mental health, your outlook, and what you believe your future looks like. Giving someone a spark of hope, or a piece of information that makes them feel even a little better in that moment, is genuinely more valuable than people realize.
JM: A single piece of information can sometimes make all the difference. You can feel incredibly alone with a diagnosis that doesn't mean much to you yet — but hearing from others who've gone through it, and come out the other side living their life again, is exactly the kind of inspiration people need in that moment.
SH: Here's another example — I was managing our lung cancer community back around 2016–2017, and someone introduced themselves to the group, mentioning their specific genetic mutation: "I'm EGFR-positive." Someone else asked, "What does that mean?" At that point, they hadn't had tumor testing done and didn't even know it was an option — that there were targeted treatments available for that specific tumor type. Just by asking that question, it completely changed the course of their treatment, from something like standard chemotherapy to a targeted therapy suited to their specific condition.
JM: And with lung cancer, every day matters in getting onto the right treatment.
SH: Absolutely. A lot of people assume their doctor will automatically ask the right questions, or that all the necessary testing has already been done — but healthcare really is a dialogue. It's shared decision-making. It shouldn't be one person's decision over another's — that's the whole point of having a healthcare team. It's about give and take, discussing what matters most to you versus what matters less, and being able to put every option on the table when your life, and your quality of life, are at stake.
JM: And being equipped to actually have that dialogue makes what your doctor tells you that much more valuable, because they can see you understand and are engaging with it, which encourages them to give you even more to work with.
SH: And then you can go back to your community and process it there too. People do talk about their own experiences, and I know some healthcare professionals worry about patients getting incorrect information or medical misinformation online, which is a real concern. But what I actually see is patients being remarkably respectful of how individual their conditions are — people constantly say things like, "This worked for me, but it might not work for you," or "I'd ask about X, it might not apply to you, but it helped patients I know." It's really just a starting point for a conversation — not medical advice or a directive — but a starting point that could change the entire course of someone's life.
JM: And it's not like most treatments can happen without a doctor's involvement anyway — so you might come in with information that doesn't quite apply to your case, but you're having that conversation with a doctor who can say, "That doesn't apply to you for these reasons, but here's what we can do." The key outcome is still the actual treatment.
SH: Exactly. And that person who received the information may go on to pass it along to someone else. People find real purpose in sharing their story — it gives their pain a purpose, a chance to help someone else get to a diagnosis or effective treatment faster than they might have otherwise. Whatever information they can offer someone who's been in their shoes matters a lot to them.
JM: You mentioned lurkers — and to me, that's real efficiency. Someone can go in, find the information they need, and whoever posted it originally communicated it so well that it doesn't need to be re-explained. The insights are just there. Being a lurker often means the solution is already documented, and it's actually a fairly common one, rather than something that has to be uniquely explained over and over.
SH: And that will always be the majority of your audience. We talk about this a lot — it's the top of the funnel for traditional marketing, people just becoming generally aware. But if you look at the metrics behind an article, you'll see thousands of people spending two or three minutes actually reading through it. They may never comment or tell you it changed their treatment outcome, but we know we're reaching the right audience, at the right moment. That behind-the-scenes data is really validating for us — if someone spends two to three minutes on a page, they're genuinely engaged. If the average time on page is five seconds, it's clearly not resonating. So understanding what kind of content actually resonates with our audience is really important to us.
JM: There's a lot changing today around privacy on the internet. Does that create any concerns, or mean health communities might have to change how they operate or communicate?
SH: I do think there'll be changes, and honestly, I think they'll be changes for the better. Patients and consumers are becoming more aware of their privacy rights and how their data might be used, so more people are actively looking into that. Our privacy policy is written in plain language, so anyone can understand it — no jargon. People want to know what their data is used for. There's an assumption that if people understood the details, they'd always opt out — but that's not necessarily true. A lot of patients tell us they want all the information they can get — if there's a new drug out there and they see an ad for something they never knew existed, that's genuinely useful information they can choose to act on, as long as it's clearly marked as an advertisement. They want to know what's out there and available. I think patients will really lead the way in how they want their information used — privacy, like healthcare, is deeply personal, and matters to people for different reasons. As long as they have real choice within the platforms they use, they'll feel good about continuing to use them.
JM: With over 50 communities, are there real differences in how different condition groups communicate and share — or is it basically the same behavior, just swap in a different condition?
SH: There are definitely differences. Different communities gravitate toward different platforms. Several cancer communities were heavily involved on Twitter before the rebrand — the breast cancer community, for example, had scheduled chats under the hashtag #BCSM, for "breast cancer social media." Other communities lean toward TikTok — a lot of younger people sharing what day-to-day life looks like with their condition. In the IBD community, for instance, people with Crohn's or colitis often share how a J-pouch works, or how they manage an ostomy — very visual storytelling. And then there are people who still prefer more traditional methods, like personal blogs, or sharing through Facebook or whatever online community works for them.
JM: We've talked a lot about how patients use these communities. Do you see healthcare providers active in them too? It seems like it would be a great way for HCPs to understand what's actually going on in patients' minds.
SH: Absolutely. A number of healthcare providers are probably lurkers themselves — they like hearing directly from patients about their experiences and interactions with the healthcare system. We also have HCPs who want to be more actively involved — patients who've referred their own physicians to join our communities, and healthcare professionals who write content for us, sharing their perspective on what questions to ask, or how to know when it's time to switch doctors, because a good doctor should never make you feel bad for asking questions. It's really validating for patients to hear that kind of thing directly from an HCP.
JM: If we were at a cocktail party and someone mentioned they'd just been diagnosed with something, what advice would you give them for finding a community or the help they need online?
SH: I'd say check out all the different options — there are a lot of different venues and forums out there, and they're not all created equal. Some feature medically reviewed content or content written by other patients; some are more discussion-based; some are moderated, some aren't, which can get a bit "wild west" at times. So you have to be careful about the information you take in, and really vet it — but find a community that genuinely resonates with what you're looking for in that moment. Not every patient community is equally open, either — some are quite private. If you're a caregiver or loved one looking to learn more, some forums simply aren't meant for you, and that should be respected — patients deserve privacy when they can get it. For caregivers, though, I think it's really important to seek out communities that have a specific section for them, since caregivers are just as invested in outcomes and are looking to learn just as much. But for patients starting their online health journey, I'd say explore what's out there and figure out what actually fits your needs that day.
JM: What do you think the future holds? AI seems to be everywhere, there's a huge amount of media out there, and the ways people use data and content keep shifting. Do you see major changes coming, or will things stay largely the same?
SH: No, I think we'll see a lot of change. Authenticity and genuine connection are going to matter more than ever. When you want to connect with another person, you want to know it's a real person on the other end, not a computer — so it'll be important to clearly mark what's AI-generated versus a real person. People will keep seeking out other people — that's not going away. They might use AI to sift through results and find content that matches what they're looking for, but at the end of the day, they're looking for stories from other patients and real connection. However the technology gets used, I think it needs to be treated as a tool.
Anything that helps connect people to other patients, or to information, more easily is going to be welcomed — but it's not going to replace people or genuine answers. The relationship piece is something that will never go away, and it's really important to me personally. Giving people the right to know where information comes from, and who they're actually connecting with, matters a lot. AI and technology can be a vehicle, but they're not going to replace those relationships.
JM: The relationships will still find "people like you" — but maybe five years ago, "people like you" just meant people with the same condition. After AI, "people like you" could mean people your age, with similar symptoms, and other underlying factors you're not even aware of that are driving your particular version of the condition.
SH: Exactly. You might want to do your own deep research, but it's also nice to have the "CliffsNotes" version of something. Getting a well-synthesized understanding of an entire treatment option is genuinely useful. Sometimes you want to go deep, and sometimes you just want the CliffsNotes — and I think that's where individual choice comes in. The technology is there to support that choice either way.
JM: You're a voice we haven't had on the show before — what would you tell health marketers building out a strategy to reach patients, something you feel like they're still missing today?
SH: Really, it's about listening to the voices that are already out there. A lot of companies do this really well. Involving the patient voice in operations — "patient centricity" has been a buzzword for decades, honestly, but I think it's only now really getting to a point where patients are genuinely being included across a range of commercial activities. For example, involving patients directly in clinical trials — asking, what's a meaningful outcome for you? We might say "clinical remission," but does that mean the same thing as "feeling comfortable" or "being able to attend your grandson's soccer game"? Maybe not. So really understanding what matters to patients, directly from them, is key. Marketers can learn a lot just by listening — patients want to be heard. In the past, a lot of patients felt uneasy about working with pharma directly, but now I see so many patient advocates actively wanting to get involved with pharma and industry, looking for ways to make the biggest possible impact for their community.
JM: Sarah, thank you so much for joining us today.
SH: Thank you for having me — it's been a pleasure.
JM: This is the part of the show where a colleague and I discuss what our guest has said. Today I'm joined by my colleague Jen Loga. Jen has a lot of experience in endemic publisher marketing, but she's joining me today not as a colleague, but as a friend — someone with real, personal experience looking for information about a condition and finding community, both online and offline. So today we're going to talk about something that happened personally, not work. Jen, welcome.
Jen Loga (JL): Hi, thanks for having me again.
JM: Jen, tell us about the advocacy work that came out of your experience.
JL: Sure — I'll tell my story, since I think it gives some helpful context. In 2020, at the peak of Covid, in April — about a month into lockdown — I went in for a routine OB appointment. I was almost eight months pregnant, and my doctor couldn't find a heartbeat. I learned my daughter had died. In that moment, I was completely alone — it was Covid, so I couldn't bring my husband with me, and I'd driven to the appointment myself. I left the doctor's office not even fully understanding what had happened. You're in a state of total shock. We had to call my husband, who had our two-year-old with him, since everything was shut down, and now she has to come along too, and I'm a mess, and he's a mess, and neither of us really knows what's going on.
Our doctor told us our daughter had died, and we didn't know what to do. I very specifically remember — despite just receiving the worst news of my life — sitting in the car with my husband on the drive home, looking at my phone: what is a stillbirth? What happens when you have a stillborn baby at eight months, so close to full term? I didn't know. I didn't even know the difference between a miscarriage and a stillbirth, and I certainly didn't know that with a stillbirth, you still deliver the baby much like you would a living one — you go to the hospital, you're induced, all of it. It was such an isolating, bizarre experience, trying to search online for what to expect when the baby I was about to deliver was no longer alive.
JM: Where did you find the support any of us would've needed in that moment?
JL: It was interesting — given my background in health media on the publisher side, I remember being so frustrated that there wasn't real information out there addressing what I needed to know. I ended up going to Instagram and Twitter and searching the word "stillbirth," and I found other parents and families posting about it. I was so confused and didn't know what to expect. I actually reached out to a random person and said, "I saw you post about this — my doctor just told me my baby died, and I'm supposed to go to the hospital to be induced. What should I expect? I don't know what's going to happen." And this woman, a complete stranger, was so sweet and wrote back. There was just nothing else out there, and I didn't know anyone who'd been through this — it's not something that's widely discussed, there's a lot of shame and guilt wrapped around it. Having to reach out to a random stranger on Instagram to understand what was happening to me was maddening, but it also spoke to the very real need for that kind of information to exist.
JM: This is a fairly rare occurrence, thankfully, so there aren't many people to talk to — you might not know anyone who's been through it. But you need someone to talk to, and the internet and health communities can deliver that.
JL: Even beyond that moment — even after having her, you go through waves of grief. I'm almost four and a half years out now, and I still experience that. There's clearly a real need for community and for advocacy work, and that's where all of this really started for me. Before my own stillbirth, I didn't know the difference between a stillbirth and a miscarriage. I didn't know there are about 22,000 stillbirths every year in the US — an astronomical number — and that most of them are preventable. I never knew any of that. We tend to think of it as rare, but it actually happens in roughly 1 in 200 pregnancies, which most women and families have no idea about. It took this horrible event, the death of my daughter, for me to learn any of it — and honestly, that made me angry enough to go on a mission to teach other expectant parents about something that could happen to them just as easily as it happened to me.
JM: And this isn't uncommon — there are a lot of conditions where information is scarce simply because the condition itself is so rare, and awareness stays low because it just doesn't happen that often. But many of these experiences are equally traumatic, and you feel just as isolated. For you, going through it during Covid — an especially isolating period for everyone — must have made it that much harder.
JL: So badly — I just wanted a hug. My husband hugged me, of course, but I really wanted my friends and family around, and everything was shut down. I had no one, in the most literal sense. What I ended up doing was going online and relying on support groups and communities of people who'd been through the same thing. I know Sara touched on using the internet for information and connection — and there really is a need for that, especially with rare diseases or unusual health outcomes, for people to connect with each other. Especially with stillbirth, there's a real lack of research and data — coming at it as a researcher and analyst, the amount of information available is almost negligible. It's similar for a lot of rare conditions that just aren't heavily researched — there isn't a lot of understanding of why they happen.
And I think, similar to rare disease, all these same kinds of questions keep coming up. Coincidentally, since we've been talking about rare disease — my daughter, Lucy, who passed away, actually died from a rare disease herself, caused by cytomegalovirus. It's not rare in adults, but it's rare as a congenital infection, and rare for the outcome I had. So I was unpacking layer after layer in the middle of Covid — dealing with grief, the loss of my daughter, wondering if I'd done something wrong, trying to understand what congenital CMV even was, trying to make sense of my test results. I remember searching online and reaching out directly to people who'd written medical journal papers on it, because they were the only ones who actually understood what cCMV was and could explain my results to me. It was something I desperately needed, and I think that experience really parallels what people in rare disease communities go through too.
JM: So there was limited community available to you online for this specific condition. Even looking at Health Union or My Health Teams — another community platform — there's a lot more community structure for other conditions than what you had. What do you wish had existed, or been available to you, that would've made the experience even a little better?
JL: That's an interesting question. Sara touched on this too — it was really the level of specificity and uniqueness to the individual person. My stillbirth was caused by cytomegalovirus, but a lot of women never learn what caused theirs at all. I think the ability to foster real patient-to-patient connection — patients genuinely helping each other — is a huge driving force, and having something act as a catalyst for that connection is really valuable. Sara also mentioned that people are often more willing to share intimate details in these settings, and that's absolutely true — we joke that we're part of the "worst club," but it lets us connect in a different way. It's kind of a "lost mom club," and a lot of us share a pretty dark sense of humor that we could never use with anyone else, not even our families, because they'd be offended.
But we can say those things to each other — we get it. I've found the same thing with friends I have in the rare disease community. Maybe a dark sense of humor is what unites people who've been through something truly awful, with no silver lining, no greater purpose. Sometimes things just genuinely suck, and you need people who can sit in that with you, without you having to worry about managing their sympathy or making them feel better afterward. That kind of specific, nuanced understanding is something you just don't have access to unless you've actually lived it.
JM: We've been friends a long time, and when you told me you'd gone through this, as much as I wanted to comfort you, I knew there was no way I could, not in any way that would really help.
JL: Yeah — what do you even say?
JM: I didn't know what to say, or how to say it. I think that community found people who genuinely knew exactly how.
JL: Yeah, completely. We actually talk a lot about how, when we tell people our story, we get a lot of sympathy — which, of course, we understand. I won't speak for every loss mom, just for myself, but I get why people react that way. But I'm not telling my story to get sympathy from you — and then it ends up feeling like I've ruined someone's day, and now I have to comfort them about what happened to me. I've talked with friends who have rare diseases about this too, and it's very similar for them — they'll mention a heart condition requiring repeated open-heart surgeries, and people respond with, "Oh my gosh, I could never imagine, I'm so sorry," and then the person has to think, "Okay, well, this is just my life now, and I have to comfort you about the fact that I told you this." It's not something you understand until you're in it — but within community, you can share what's happening without feeling like you're placing a burden on someone by sharing the worst day of your life, because they already get it.
JM: Jen, you've done so much building this community — what's your favorite story of how it's impacted other people's lives?
JL: Honestly, in doing advocacy work, I often wonder if it's actually making a difference — I think anyone who volunteers questions that at some point. I usually post about the advocacy and education work on my own personal social media, and one day I was feeling a little down and posted something like, "I don't even know if this is making any difference." Someone I'd been friends with years ago messaged me and told me a story about how my work had pushed her to be a strong self-advocate during her own pregnancy. It turned out her daughter had an abnormality and had to be delivered early — and had she not advocated for herself, pushed back, and gone to the hospital, her daughter might not be here today. When she wrote that to me, I was in tears — but it was one of those moments where I thought, this is why talking about the worst day of my life can genuinely make a difference for someone else, and hopefully help save another family from going through the same thing.
JM: Community can save lives.
JL: Exactly — just like when it happened to me in 2020, which somehow feels like both yesterday and forever ago, I found help through a community of people. Full circle, she did the same thing I did, and it connects right back to the work Sara and Health Union, and other platforms like My Health Teams, are doing.
JM: Let's talk about the advocacy work you do now — because out of terrible experiences, some genuinely good things can come. In the process, you found out that not only is this experience awful, but employers, the government — really no one — knows how to properly handle it, and in many cases, they simply don't. What did you find, and how did your community rally around you?
JL: There are a lot of other women and moms like me who got just as angry as I did. Coincidentally, I'm wearing a shirt right now that says "Do Good Things" — it's from an organization I work with called Count the Kicks, which teaches expectant parents how to properly count their baby's movements, to help monitor fetal activity and help prevent stillbirth. They've reduced the stillbirth rate in Iowa by 30% over ten years, just through this program. It's a free app, run by a nonprofit, and it genuinely saves lives.
As I dug deeper into why stillbirth happens and who it affects, I kept uncovering this enormous black hole — in the medical community, in our laws, even in employer policy — that simply doesn't account for something that happens to 22,000 families a year.
My husband's employer, at the time, told him he didn't qualify for paid family leave, because we didn't have a birth certificate — well, you don't get a birth certificate when your baby dies. But he still had to care for himself, for me, for our other child, all while grieving. The same thing happened with my own maternity leave — I didn't technically qualify either. Luckily, my employer at the time was incredibly supportive and told me, "Jen, whatever you need, we don't care what the policy says, we'll help you get there." That was kind and generous, but my husband didn't get that same treatment, and so many other women and families never do either.
As you keep peeling back these layers, you learn things like: women of color are 2.3 times more likely to experience stillbirth than white women, regardless of education level — and you realize you're not just dealing with a public health crisis, but with maternal and fetal healthcare that's deeply rooted in systemic racism. You don't know any of this unless you're forced into this world.
So what we've been able to build, within this community of, frankly, a lot of very angry moms, is advocacy around a few key things. One is self-advocacy — teaching expectant parents how to count kicks, how to advocate for themselves with their doctors. The other is helping secure funding for better research, for pathology programs, and for the infrastructure that supports that research.
JM: Tell us about your work there specifically.
JL: As I mentioned earlier, I work as an advocate helping push a specific bill forward — it's called the SHINE for Autumn Act, focused on stillbirth prevention initiatives. It would provide $5 million a year to fund better research, training, and data collection, to understand why stillbirths happen so we can better prevent them. I spend a lot of time on Capitol Hill, meeting with members of Congress, senators, and representatives, trying to get it passed. We'd genuinely love people's support — please reach out to your representative and let them know you'd like them to support it.
JM: And I want to point out — this isn't something you were trained to do. You're not a lobbyist. You never were.
JL: No.
JM: You're a mom on a mission, trying to make things better for everyone.
JL: Yeah, I'm an advocate — not a lobbyist at all. Autumn's mom, who the bill is named after, actually lives just four minutes away from me — we didn't know each other before any of this happened. We rally around these causes together, trying to increase funding in an area that's honestly had almost none — which is quite frankly embarrassing — all in an effort to prevent this from happening to other families. So no, I'm not a lobbyist, I'm just a mom, and I tell that to the congressional staffers, senators, and representatives we meet with. I tell them, "Listen, I really don't want to be here. Please don't make me come back." This past September, I had close to 40 meetings, telling my story — the worst day of my life — over and over and over. It's not because I enjoy it; it's mentally and emotionally exhausting. But it's necessary, and if reliving that day helps prevent it from happening to someone else, I'll do it every single day of the week.
JM: So this bill hasn't passed yet, is that right?
JL: Not yet. It got really close last year but ran out of time. We really need people to write to their members of Congress — they actually track how many constituents contact them about specific bills, and it's a genuinely effective way to get them to act.
JM: Is there a website you'd point people to?
JL: Just Google "find my representative" or "find my Congress person" — go to their website, click "contact us," and say you support the SHINE for Autumn Act. Or you can visit shineforautumn.org, where all the information is available. And if you're an expectant parent, or know someone who is, you can also share the Count the Kicks app with them — it's free, and it teaches you how to monitor your baby's movements as a way to help prevent stillbirth.
JM: Well, thank you, Jen — thank you for sharing the worst day of your life with us.
JL: Anytime.
JM: And of course, thank you to my guest, Sara Hayes. This has been Deep.
Announcer (Voiceover): You've been listening to Deep, the health marketing podcast. Deep is a presentation of DeepIntent. Opinions shared by guests represent their own perspectives, not the views of their company or organization. If you'd like to learn more about the guests, the show, or the topics discussed, check out this episode's show notes in your podcast app, or visit deeppodcast.com. If you have a question or a suggestion for the podcast, drop us a note at podcast@deepintent.com. If you like the show, please leave a comment and give us a five-star rating on your favorite listening platform, and be sure to subscribe so you never miss an episode.
The Deep Podcast features original music by Diaphonic. The show is produced by Robert Haskett, with Ben Abramowitz, and hosted by John Mangano. Thanks for joining us.
Links
- Sara Hayes on LinkedIn
- Jen Loga on LinkedIn
- Health Union
- Migraine.com
- Asthma.net
- Count the Kicks
- SHINE for Autumn Act
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