#382 – 🗞️ NeoNews - What Should Neonatal Teams Prioritize This Winter? RSV Coverage Gaps, Congenital Syphilis, and New Research Shaping Care
- Mickael Guigui
- 2d
- 35 min read
Hello friends👋
In this episode of NeoNews, the team returns from a brief hiatus with a refreshed format and a packed review of neonatal stories dominating recent headlines. Eli, Ben, and Daphna open with updates on RSV prevention, highlighting new MMWR data showing significant gaps in nirsevimab and maternal vaccine uptake—despite strong evidence and renewed availability. They discuss how supply chain issues, insurance delays, and vaccine confusion continue to limit access, and they emphasize the unique role neonatologists can play in counseling families early and often.
The hosts also review concerning national trends in congenital syphilis, noting that many affected infants had parents who received prenatal care but were never tested—an avoidable systems failure with major downstream costs. Additional segments cover the severity of last year’s influenza season, the emergence of new RSV monoclonal antibodies, and the rising use of polygenic risk scoring in IVF. The team reflects on the ethical tension between innovation and eugenics concerns, and how neonatal providers can prepare for these conversations. Finally, the deep dive explores Sherri Fink’s powerful reporting on trisomy 18, variability in care across institutions, and the growing emphasis on transparent, value-driven shared decision-making with families.
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The articles covered on today’s episode of the podcast can be found here 👇
MMWR: Still really sucky nirsivemab coverage
MMWR: New RSV iz on the block – clesrovimab
MMWR: Last flu season
Discharge transitions in parents with disabilities
Pediatrics: Co-ED use in maternal-infant dyads
Pediatrics: Perspectives of MOC with CCI post-d/c
MMWR: Missed opportunities with RPR testing
Research in the news
Fertility
WaPo: superbabies
CNN: DJT IVF events (including TrumpRx)
19th: ICE and fears of seeking healthcare (including antepartum)
NYT: OpenEvidence raises $200m
NYT: Food stamps in rough waters
Deep dive
TNY: T13/18
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The transcript of today's episode can be found below 👇
Eli (00:01.926)
Hey, we're back. It's Neo News. We're excited. I'm excited. We're all excited. We're equally excited. I'm not more excited than everybody. You're excited. Who's excited. All right. We're back as Neo News. It is Tuesday, November 4th. We had a little bit of a summer break that may have turned into a sabbatical. I don't know how you define a sabbatical, but we've, you know, we've been away. People have been busy anyway. How was, how's your guys' summer?
Ben Courchia (00:05.762)
Welcome back, everybody.
Ben Courchia (00:28.078)
Yeah, I was going to say, you call this a sabbatical, but you've certainly not been off. Our summers have been great. As we were discussing off air, Daphna and I are working very hard on the podcast. We're working very hard on the planning of the upcoming Delphi conference, which promises to be quite phenomenal. And then we're strategizing for 2026. There's lots of very cool stuff coming down the pike for The Incubator. A lot of stuff based on the feedback that we've received. So we're very excited about January 1 coming up soon. All right, Daphna, did I forget anything?
Daphna Yasova Barbeau (01:03.033)
You didn't forget anything. Just don't rush away the rest of our year.
Ben Courchia (01:07.178)
No, what about it? It feels like it's, I mean, to be honest with you, it felt like February 2025 was like yesterday. And now I'm looking and it's like, it's almost the end. November is going to come to an end and it's wild. How about you, Eli? How was beginning of fellowship? How was the transition from East to West coast?
Daphna Yasova Barbeau (01:16.835)
It's wild, it's wild. Yeah, you've been so busy.
Eli (01:26.546)
You know, I'll say to you guys what I've said to all of my attendings, which is I'm glad this training program is three years because I don't know how to do half the stuff, but I'm learning. And, uh, yeah, unit's been busy. It's been an amazing opportunity to learn a little bit in the fire, but, uh, you know, we've had a, you know, a few ECMO (extracorporeal membrane oxygenation) kids. We've had lots of kids on ventilators, lots of kids with mysterious, recurrent fevers that we have no idea why they're happening. So anyway, to say nothing of learning how to do arterial lines at three in the morning. So it's been really instructive. Exactly. Well, listen, it's been fun. Not once have I said, this is what I tell my therapist is, you know, it's type two fun. I have not hated going in once. I have been tired a lot and that is okay.
Daphna Yasova Barbeau (02:07.715)
Sounds like there's been lots of good learning.
Ben Courchia (02:08.12)
Welcome to the profession.
Eli (02:26.02)
Anyway, so speaking of feedback, we have listened to some feedback we've gotten, and we're going to try something different this episode. What we're going to do is we're going to invert the structure here. So for long time listeners, I know you're out there, you may recall that the way we've been doing Neo News previously was to start with a deep dive, go really deep on one story, sort of broaden out, sort of... increase the pace later in the episode such that, you know, by the end of the episode, we were getting to a few research studies. We sort of got the feedback that, you know, for some folks, it would make more sense to start with the quicker hitting things. And then for folks who potentially want to stay on and listen longer to do the deep dive at the back end of the episode. So we're going to try that today. See how it goes. Obviously, as always, we are super keen for your feedback. Let us know what is working, what is not working, what we can do more of, what we can do less of. And anyway, with no further ado, let's move into our first segment. This segment is what we're calling and what we've always called "You May Have Heard." We'll touch on a few different research studies that we thought are worth highlighting, things that have been newsworthy. Because again, the mission here is to help you know what's in the news because your patients are thinking about it and hopefully you can talk about it with them now more than ever. And so no topic worth talking about quite like vaccines. Obviously, in the months that we have not been on the air, lots of different sort of conversations around vaccines. We are now entering, I don't know if you guys got your email from the hospital, but we got our email saying, you know, nirsevimab is back, RSV (respiratory syncytial virus) vaccines are back in stock. Don't forget to give them to your patients. And I think the first study that we're going to cover here is from MMWR (Morbidity and Mortality Weekly Report), which is the CDC's (Centers for Disease Control and Prevention)... outlet that is still publishing, publishing less, but still publishing. You know, this study found that across 33 states and the District of Columbia, an estimated 29% of infants were immunized during the 23 to 24 respiratory virus season with nirsevimab and that the average sort of number really varied between states. In some states, 11% of babies were covered for RSV immunity, either through maternal vaccination or through vaccination of the infants themselves. And in other states, up to 53% of the infants had coverage. I think one sort of top line thing to highlight here is that this study had pretty different data than what's been out there. I mean, other research suggested that sort of, you know, somewhere on the order of six out of 10 infants, you know, are covered in terms of RSV immunity. But this MMWR study was saying it's actually closer to 29%, so about half of what those other studies were saying. Ben, Daphna, what did you guys think of this study and what do you make of this additional data coming out compared to what we've seen out there so far?
Daphna Yasova Barbeau (06:04.522)
What I was really interested in actually is this included either babies, infants who were vaccinated or I mean their mothers prenatally. So we would have hoped that would have captured more people. And I mean, I think it's capturing less, which I think is really unfortunate, really problematic. But it just is still echoes of how difficult I think it is for people to make decisions during pregnancy, especially in this vaccine confusion climate. And I think that a lot of people still don't understand how scary RSV can be. And so many of our babies... need RSV coverage and if they had gotten it during pregnancy, we'd be ahead of the game. So I think that was my big disappointment that now we have this opportunity to vaccinate mothers during pregnancy to protect against RSV in the first six months and the uptake has not been as good as we had hoped. I'm not surprised, but disappointed.
Ben Courchia (07:19.45)
I agree with you, Daphna. It's not really surprising. I think it underscores a little bit, and the discussion alludes to that, of the factors that are really preventing the uptake of vaccination, specifically with these newer agents, since their distribution, since their rollout. I think that, number one, we know that there's been supply issues. So I think that this is definitely something that is probably an inherent limitation. And we'll see as the supply issues get sorted out... how does the data evolve? I think the areas that are interesting are the possibility that lack of familiarity with this new agent, or as you said, in this vaccine confusion sort of context, people are saying, I do not want this new vaccine because of all the things I've heard on TV. And it's quite scary to have to deal with this. But I think that also what's interesting about that is that... this lack of familiarity, I would want to know more about that. Because obviously, until very recently, Synagis or palivizumab was available, and it no longer is. So it'd be interesting to see when Synagis now goes away. For those of you who are not aware, Synagis is being discontinued. And basically, nirsevimab is going to become the main player and probably the only alternative that's going to be readily available. It will be interesting to see how that changes. The other thing that's quite interesting as well, which I was not familiar with, is the fact that private health insurance really don't really have to cover for the vaccine until about one year after it's released. So they have like a one year grace period where the insurance can say we're not paying for this. And that's appalling. So I'm very interested actually... Not so much about the data that was presented. I think it's very interesting to see where we stand so quickly after the distribution of the vaccine. I think that the variability between states is not surprising, but I'm very curious about what is the next set of numbers going to look like.
Daphna Yasova Barbeau (09:33.996)
Hopefully better.
Ben Courchia (09:35.116)
Hopefully better, I agree, right?
Daphna Yasova Barbeau (09:36.888)
Yeah.
Eli (09:37.49)
Hopefully better and hopefully better because I agree with you guys. I mean, it seems like there are a lot of missed opportunities here. Just to highlight a little bit more data from the study, you know, specifically, of the 29% that this study found of infants who were covered, 19%, so two thirds about of those infants, had received nirsevimab themselves. 10%, about one third, got it through maternal RSV vaccination, which tells me... You know, I don't know what the nature of these conversations have been for you guys, but oftentimes the conversation is, well, you know, I haven't seen enough data, which it's true. There is a paucity of data. This is a new agent. There's always going to be a paucity of data when there's a new agent. And my baby is too young. My baby is too small. My baby, you know, for whatever reason, is too sick or was recently too sick, whatever reason it is that folks are hesitant to get the vaccine.
You know, the maternal coverage angle suggests to me that potentially there's an opportunity really to work arm in arm with our OB (obstetrics) colleagues, especially when we're doing these very early consults. You know, if we get someone in who maybe they're not even one of these patients we're worried is going to deliver, but we're seeing them at 23 weeks. Maybe that is one more opportunity to start introducing the idea that this is something that people should think about.
Ben Courchia (11:03.278)
I think it's very interesting from the standpoint of where we are in the vaccine cycle. I think that to me, one of the things that has been very frustrating with the vaccine hesitancy is that if you've read about the disease that we're trying to prevent, there is no way people should be aversive to these vaccines.
Daphna Yasova Barbeau (11:18.658)
Yeah.
Ben Courchia (11:29.354)
As I'm reading a bunch of books, right? When you read about the welcoming that the polio vaccine received, because people faced the disease, right? And it's like, oh my God, we have a vaccine for this. And so while it's becoming a challenge to vaccinate any baby, especially in our neck of the woods in South Florida, what's interesting with the RSV is that it's not a disease that has disappeared. And so what I found is that there's a lot of parents, if they've had other children, they're like, oh my God...
Daphna Yasova Barbeau (11:53.261)
Mm-hmm. Yeah, I'm not sure about the others, but I'll take the RSV. Yeah. 100%.
Ben Courchia (11:59.148)
Yes, please sign me up. Because they've experienced bronchiolitis in their other kid and they were frightened to death. And so then, year round. Yeah. And so to me, it's very interesting that like, yeah, when parents have experienced what bronchiolitis can look like in a small child, they're like, if there is something for this, I want it. And which is now so different from the other vaccines that deal with diseases that thankfully are almost eradicated...
Daphna Yasova Barbeau (12:08.32)
Especially in Florida where the season is like basically all year round. Yeah.
Ben Courchia (12:27.724)
and are now coming back, but parents have no clue what it means to have polio or to have measles. And they just say like, no, no, it's fine. So to me, that's very interesting. At least we get the benefit of that.
Daphna Yasova Barbeau (12:39.7)
Yeah, for sure.
Eli (12:40.014)
Yeah. Yeah. I feel like the vaccine story is, you know, has definitely been a victim of our own success story that by definition, you know, prevention is invisible, right? Like prevention is invisible. And so, you know, I was just, yeah, listen, I was...
Daphna Yasova Barbeau (12:45.292)
That's exactly right, yeah.
Ben Courchia (12:50.614)
And maybe down the road as RSV is eradicated, people are gonna be like, well, I don't want this vaccine because I don't know what you guys are talking about.
Daphna Yasova Barbeau (12:58.924)
We don't need it. Yeah.
Eli (13:00.996)
I listen, I'm a humanist, but I was just, I was just in Texas reporting on measles. I was in India reporting on polio. Like this stuff is, I'm going to Nepal to report on leprosy. Like these things exist and we just forget about them. And now we're starting to see them again. I think it's an interesting point on supply chain and availability of these vaccines, because what we know is that, you know, there certainly have been lots of supply chain issues with the RSV... really ever since they started to be rolled out. And that highlights to me the real importance of like, when we have someone in house, not punting that decision. Because who knows when that patient, that infant may be in a position to get the RSV vaccine in the future, either because they are somebody with difficulty accessing healthcare and they can't get to a healthcare institution before it's too late to vaccinate the child or... Because the healthcare institutions they go to, these clinics, these hospitals are no longer paying for the vaccines and no longer having big supply rooms of vaccines. Because by the way, the Vaccines for Children program is in huge flux. And so the actual just upfront costs, the capital structure problem of paying for all these vaccines upfront that you don't know if people are ever going to get means that we're already seeing health... you know, organizations not stocking these things. And it expresses another opportunity for me to say, hey, let's work with our OB colleagues. Let's try to get this done in a place where we know they're going to have access to the vaccine. We saw that younger kids less than one month were less likely to get vaccinated, or sorry, kids older than one month were less likely to vaccinate. So we can say, oh my God, we know This is a population at risk of going unvaccinated. We know that later in the respiratory viral season in places where there is a respiratory season, kids were less likely to get vaccinated. So all of this information can inform us to say, hey, if I punt this one off or if I say, you know, someone else is going to do this when I'm off service, it just may never happen.
Ben Courchia (15:03.189)
Mm-hmm. Very true.
Daphna Yasova Barbeau (15:03.96)
And I mean, my takeaway to your point, Eli, is, you know, I think the pediatrician is still, that data keeps coming out, is still the most trusted source of vaccine information. But the neonatologist, the neonatal community, where these parents have been coming day in, day out, you know, really trusting us with their child's lives, we just have better rapport and this opportunity to partner with parents than I think... the general pediatrician will at the two month visit and at the four month visit because, well, and no shade to our pediatrics colleagues. The system is just not set up anymore for them to have those types of relationships with families. The pediatricians who are able to do that are really going above and beyond because it's so difficult. But we already have that, you know? And so I think for me, the opportunity is in saying to them, you don't have to wait till your baby's... you know, four months to get those two month vaccines. Like let's do them now. And even these babies that are there for six weeks, like let's really start having those conversations about the importance of vaccines before they leave the unit. So they're primed when they're offered at that two month visit.
Eli (16:17.37)
Yeah. And we should keep moving. Cause, you know, we could spend a whole episode talking about just vaccines. I certainly agree with you, Daphna. It's not only that we're more charming and better looking than our general pediatrician colleagues, but also, but also, okay, well, you know, I just, I saw it in those eyes anyway. It's not just that that's true, but it's also that we have a precious resource, which is time. We certainly have patients' time, right? I mean, we get to know these families day in, day out for ages. Even on a busy shift, there's always 15 minutes to go check in on somebody to have a chat with somebody, even though it doesn't feel like it. My experience has been that there's always 15 minutes to spend with a family at some point in the shift. And so maybe in a world where it's never been harder to develop trusting relationships with patients, it's never been harder to get people vaccines and other healthcare resources. We're really well positioned to maybe be able to do that. Just to move on, you know, the two other studies that... that I wanted to raise in this section. The first is about a new RSV vaccine called clesrovimab, which was approved in June. Interestingly, amidst kind of everything we're hearing from the federal agencies, this was approved by the FDA (Food and Drug Administration) in June. Showed really great efficacy, showed really good cost effectiveness. If you get this thing, you save, you know, hundreds of thousands of dollars in healthcare costs down the road. Sort of good for all the things. You know, it does strike me that whenever we launch one of these new ones, we're a little bit in, I think a bind as, as Ben you were alluding to, like on the one hand, here's a new vaccine, a new medication without the emotional weight of the thing that people used to do that maybe they had opinions about. So maybe it's a blank slate for us to reset people's relationship to vaccines or to the RSV vaccine. On the other hand, it's a little bit like, you know, Flovent, right? Like the one that people knew about went off the market and then we just can't get people to take the new one because you know, either they can't get it, it's hard to get, there's supply chain problems or there's the process of forming an opinion. You guys, any thoughts on, you know, the availability of a new vaccine, even as we're struggling to get people to take the historical ones?
Ben Courchia (18:39.672)
Go ahead Daphna.
Daphna Yasova Barbeau (18:42.047)
No, I was going to say, I mean, I think it's an uphill battle. I think it's a tough time to roll out a new vaccine. I think in my opinion, if I was in charge of anything, we should just focus on what we have right now, unless it's much more efficacious or it's much less expensive or it's easier to give. I think we should just try to focus on what we already struggle to give. But it's nice to have new things. Competition's always good in our society.
Eli (19:08.23)
We like new things. We deserve new things. We deserve nice things.
Ben Courchia (19:08.814)
Yeah, we'll see if that really makes a difference when it comes to supply chain. But I agree with Daphna. It's already difficult as it is. It'd be easier if there was only one agent. But we'll see what happens.
Eli (19:25.606)
Yeah. Yeah. Well, for sure, for sure. Maybe an opportunity and perhaps challenges with the opportunity, but an opportunity. And the last, our last sort of study in the vaccine trifecta here is a study again out of MMWR about last flu season, which I think we all had the sense that it was pretty bad. Like I saw a lot of kids with flu and kids with severe flu. I didn't realize it was this bad. I mean, this research shows that the influenza associated hospitalization rate was the highest since 2010 to 2011. The number of hospitalizations was 127 per 100,000, which if you are like me, you don't know what the heck that statistic means. So let me just compare it to a couple of things for you. 127 per 100,000. That is about the same risk of dying as in a car crash. Right? So this is like not an implausible thing. This is something that really happens all the time. That level of risk is also 18 times more likely than dying in a firearm homicide, something that bears a lot of emotional weight for people. And yet, when they think about firearm homicides versus, you know, flu associated hospitalizations, I think firearms definitely weigh heavier on the consciousness. It's about 120 times more likely than dying in a house fire. It's 2,500 times more likely than getting bitten by a venomous snake. And it's 1.2 million times more likely than being in a shark attack. So anyway, getting the flu and getting hospitalized for it last season was really common and way more common than I think people maybe believe at baseline. You guys, any thoughts on the statistics here and what it can tell us again about trying to tamp this number down a little bit?
Ben Courchia (21:28.974)
Yeah, I think that the data is quite dense and it includes people from the age of zero to the age of 60 plus. So I think that people might look at the data with maybe selective eyes if you want to focus on your population of interest. I think that one of the things that I am taking away is that in our population, specifically children under the age of four... What's interesting is that having an underlying medical condition, specifically a respiratory underlying medical condition, really skyrockets the effects of influenza on these children and on their risk of actually being hospitalized or being in the intensive care unit. And obviously the one comorbidity that is mentioned here is asthma, which if asthma is one of them, then you definitely can be sure that chronic lung disease or BPD (bronchopulmonary dysplasia) is also one of them. So I think that... It was quite interesting to look at this data and to understand that the risk for children, specifically former NICU graduates, is not insignificant. I believe that the numbers were about 14% who were hospitalized with comorbidities. So it's definitely something that needs prevention. And as we were talking about vaccines... I think that one of the big hurdles of vaccination when it comes to the flu is, again, this recommendation that if you are being vaccinated during your first flu season, you need actually two flu vaccines to actually build that immunity. And I think that there's a big drop off. This paper did not really mention this, but looking at these numbers talking about 10 to 25%, these are not negligible. And so, yeah, it's quite scary.
Daphna Yasova Barbeau (23:20.119)
Yeah, I mean, I don't have much to add. They did highlight that during the 2024-2025 season, 32% of patients had received an influenza vaccine, but that's pretty similar to past seasons. I was actually surprised. I thought it would be lower. But then in addition, 84% of patients received influenza antiviral treatment. So it's just interesting that, you know... Not everybody's willing to get vaccinated, but they sure are willing to take this antiviral when they're feeling so sick. So I mean, it's just interesting. And unfortunately for our patients, what I've had to express to families is this system of cocooning that used to potentially exist for neonates. I mean, it's really going away with the decrease in community vaccination and making those babies... who maybe in the past were not so high risk because everybody else had higher vaccination at higher risk.
Eli (24:27.91)
Yeah. Yeah, absolutely. Well, again, lots of potential opportunity here to start these conversations with all of our patients and to try to get, you know, some of our long time friends vaccinated when they come of age. So let's go to the next study, which again, is looking at some opportunities that potentially we have for improvement here. This is CDC data in MMWR again... very MMWR heavy. We're big MMWR fans here at The Incubator. So if you're listening, MMWR, thank you. MMWR data on congenital syphilis and in particular, looking at the nature of, you know, how birthing people whose infants ended up developing congenital syphilis, what their interaction was with the healthcare system, sort of in the prenatal period. And interestingly, the data found that prenatal care was accessed by 43% of people who had an infant with congenital syphilis. So this is not all people who just show up on the day of delivery and we don't know anything. And then, you know, there's this whole diagnostic dilemma and medical mystery to diagnose the kid with snuffles. Like these are people that we are seeing in our prenatal clinics with fair frequency. And I think it's also worth noting that a lot of these people are just not getting tested. I mean, about 60% of the folks who had prenatal care greater than a month before delivery, meaning potentially we could have given these people treatment courses that would have really reduced the risks of passing along congenital syphilis. And yet, many of those people, six...Of that population who were seen, you know, greater than 30 days before delivery had never been tested for syphilis, like somewhere between 16 and 70% of patients ever were syphilis tested. So, you know, again, potentially a huge opportunity for just starting these conversations and engaging these people in conversations that maybe other parts of the healthcare system just may not have capacity to have these conversations right now. And because of those... shortcomings in healthcare system capacity, we're seeing babies who are having things they don't need to have. Guys, what did you think of this one?
Daphna Yasova Barbeau (27:02.655)
Well, I'll tell you what, we see a lot of syphilis. We've been seeing a lot of syphilis in the last year in Florida for sure. We test everybody on admission, moms and babies now because it's been such a problem. I will say for our population, which is kind of mixed, we have probably about a 50%... Medicaid population, right, adjacent to a pretty moderately affluent community. But our docs are pretty good at getting the testing. It's not been, I mean, in our small community, a problem that people aren't getting tested. And we're seeing a lot of syphilis. A lot of moms are getting treated. So I'm really pleased to see that and I recognize that's not what's happening around the rest of the country. I thought it was interesting. What are some solutions? How can we help? I mean, obviously better access to prenatal care is number one, underscore, underscore, underscore, which we know that we have a ton of maternity deserts. We've covered that before and they're getting worse, not better. So, I mean, that's the biggest deal. But I thought that it was an interesting highlight. Could we be reaching out to our ER colleagues saying, you know, sometimes these moms aren't coming in for prenatal visits for whatever reason, but they are presenting to the ER and should they, if they're there and they're getting tested for other things, go ahead and get the syphilis testing done and out of the way. And I think that's a neat opportunity. And we say, okay, we're neonatologists, not ER physicians, but we work in healthcare systems. And so, you know, talking to the people... around us about what we're seeing, I think, is valuable for those patients.
Ben Courchia (29:02.498)
Yeah, I agree with you. And I think that this paper, which looked at data from a specific county, I believe in Nevada, highlights something very interesting about making sure that we can preserve access to prenatal care during pregnancy. And I feel like this has been a big obstacle these days. I think there's, like Daphna said, we have a very mixed population where we work. And there's a lot of concerns about people actually seeking prenatal care because of potential immigration status and things like that. I think that's a huge concern. And people who are not seeking prenatal care, I think there's this very selfish thing for us as neonatologists to say, oh my God, like I might have to deal with a patient who might need treatment and or who might need testing. But it's also all the spreading that could continue to happen if potentially between the moment that a disease could have been diagnosed and treated and the moment it is actually picked up around the time of delivery. So I think that the... burden on the healthcare system is potentially quite high, and finding pathways to make sure that prenatal care, and specifically basic prenatal care, prevention and treatment of sexually transmitted disease, can have huge cost-saving abilities when we're looking at both the burden of disease potentially on neonates, but also on the cost of this hospitalization where we treat babies with...potential risk for infection that stay for 10 days. And that's a huge bill for the system to foot when this could have been potentially dealt with by a few prenatal outpatient visits. So yeah, if this data from 2022 and from 2017 to 2022 from Clark County, Nevada is representative of anything happening around the country, there's definitely an opportunity to do something better here.
Eli (31:01.873)
Yeah. And I think the cost saving element is interesting because we feel like we try not to talk about it because we think we should do these things because they are the right thing to do, quote unquote. But you know, in the state of the country where people have very different value systems, very different moral sort of frameworks and, you know, prioritization, like how people are triaging what's important right now, really differs. I think it's important to keep in mind that, you know, the reason to ensure people get prenatal testing for syphilis will vary tremendously across the country. And so even just having a different set of language in your tool set, including, you know, the cost of care language, which is really important in an era where states are going to be more and more desperate to cut healthcare funds because it is... exploding all of their budgets. I think potentially viewing this through the framework or at least knowing that a conversation around cost savings is another way to advocate for our patients is an important thing to keep in mind. So let's keep moving here. Let's move on to our next section. This is "Research in the News." The sort of major topic I want to highlight here is fertility. You know, fertility has been in the news a lot. And, you know, in particular, I sent around this really interesting Washington Post set of reporting, including a podcast on one company in particular called Orchid, which is, sort of the product or the idea is using polygenic risk scores to... both assess sort of Mendelian genetics and whether any child is going to have some, you know, devastating sort of aneuploidy or something else that could be very obvious when couples are going through the process of in vitro fertilization, but also to do sort of whole genome sequencing and to try to make predictions about what diseases or what other phenotypic characteristics a child may be at risk of in the future. This is also close to home. It's of course happening in Silicon Valley. Lots of people in support of it saying why would we potentially bear children who could be saddled with really devastating diseases if we could select away from that. Lots of controversy of people saying this is bordering on eugenics. So anyway, I'm curious, guys, when you listen to the reporting, when you started learning a little bit about this company, what came to mind for you?
Ben Courchia (33:59.97)
I mean, ethically, it's very difficult. I felt very conflicted because, as you said, it can be viewed from the lens of, can we just minimize the risk for these families? And can we minimize the risk for these children? But again, this sort of fetal selection really borders on eugenics. I don't know. I don't know how I feel. It feels a little bit still too new and I'm not accustomed to it, so it feels a little bit itchy. But we do recommend sometimes pregnancy termination when there's some very critical diagnoses. So I don't see how that's much different. So I don't know yet how I feel. And my takeaway was that I feel like I'm uncomfortable with this at this moment, but that eventually I'll be OK with it somehow. And I don't know if that's good or bad, But this is where I landed.
Daphna Yasova Barbeau (35:02.326)
Yeah, I tend to agree with you. When you open it up, you're like, oh, I don't know about this. And is it that different than what embryos are already screened and selected for and pregnancies are screened and selected for? I mean, I'd say no. I guess some of the differences, I guess some of these embryo testing, they can even go so far as to say they have here a propensity for heart disease score, schizophrenia score. So I mean, estimating, which is a little different than having a diagnosis, but estimating risk for potential medical problems in the future, which may never arise. So I think that's the potential difference than what we already do. And I think that is a different bucket altogether. But the future is always along the lines of innovation and I mean that it's moving.
Ben Courchia (36:07.534)
I just feel very uncomfortable with the idea that like, where are we going to draw the line? Right? I feel like if you have Trisomy 18, right, which is very much a lethal condition where your lifespan is quite short and if you're in the wrong...
Daphna Yasova Barbeau (36:13.792)
Yeah, no, I agree.
Daphna Yasova Barbeau (36:23.434)
Well, we're going to talk about that at the end of the show.
Ben Courchia (36:26.03)
That's right. I'm saying that's right and that's why I'm referring to that. Like if you have lots of comorbidities, it could be quite devastating. It's one thing to have that conversation, but are we going to then start saying, oh, Trisomy 21? No. And it's like all the people that are on this earth and who have Trisomy 21, what they bring to the world is a lot of positive energy and they have something to offer our society. Are we going to just start cutting this population outright? Like that feels like this particular line could move to an extent where who are we going to cut out of our society in this particular fashion? That's very scary.
Eli (37:20.115)
I think you guys both make such good points. You know, the idea that on the one hand, first of all, there's a question about whether polygenic risk scoring even works. There was an article in the European Journal of Human Genetics that says this doesn't work. So like, first of all, are we back to Silicon Valley selling some medical product that doesn't work? Are we like back in the Theranos era with this one? I don't... know. I have to talk to my patients more about it. For sure we know that people are spending tens of thousands of dollars on IVF (in vitro fertilization), lots of just incredible devotion and suffering associated with going through the process of IVF that, you know, on the other hand, I'm like, well, if people want to optimize their chances for success, most people are going to IVF after lots of years of struggling, you know, who are we to tell them... you know, now that you have finally potentially fertilized an embryo, like you can't make sure that that embryo, you know, makes it through the end of gestation or something like that. You know, that's something that I think is along the lines of an argument that we saw in Human Reproduction, which is a different journal and talks about what they call procreative beneficence, which says that, you know... basically prospective parents have the right, if not the obligation to pursue information to minimize suffering of their children, which is a really interesting ethical standpoint. And again, sort of the counter argument would be, well, you're just going to select for the kids with blue eyes and big muscles. Like, so I think it's sort of a brave new world on this one and we will stay tuned.
Ben Courchia (39:03.009)
Exactly.
Eli (39:08.389)
Especially in an era that I don't think we need to go deep on this, but certainly the federal administration keeps talking about the availability of IVF. And I don't know if anyone's been following, so-called Trump RX, which is this platform offering people medications at a lower cost, but, you know, IVF medications made by a couple companies, including one that is owned by Merck, could... be less expensive. So we may see this more and more if in fact people start having access to IVF. Anyway, all that's left to talk about. One other piece of news that I'll highlight before we get into our deep dive is OpenEvidence. OpenEvidence, I love OpenEvidence. I used it, it's on two separate slides in a new conference that I'm giving on Friday. My attendings hate that I love OpenEvidence because they feel like I'm fact checking them. But...
Ben Courchia (40:04.169)
Hahaha
Eli (40:08.025)
Anyway, love it or hate it, OpenEvidence is here. It's here to stay. New York Times reported it just raised $200 million at a $6 billion valuation. And one partner investor in the company said, quote, "OpenEvidence is reaching verb-like status." And that it will be hard for other companies to replicate OpenEvidence, even though the underlying technology is not that hard. If only because there's already so much uptake in OpenEvidence, classic sort of, you know, network effects model. But basically the founder of OpenEvidence says no one else in the world has the data that they already have to continue training their models. Anyway, OpenEvidence here to stay, guys. Any thoughts on, you know, the technology and kind of where it might go?
Ben Courchia (41:01.602)
Yeah, I absolutely love OpenEvidence. And I think that the model that they've used to actually grow their company is quite clever, making sure that they have strategic partnerships with very reliable data sources like the New England Journal of Medicine, like the Journal of the American Medical Association. And I think that doing this carefully, right? I mean, I think that the growth of OpenEvidence has been quite rapid and staggering, but they've been doing things slowly and carefully when you compare it to the speed at which other AI companies have sort of rolled out what they describe as a final product when in truth it's just basically a beta. I think OpenEvidence has been very careful about making strategic relationships, slowly broadening the scope of what their AI can deliver. And I think that the team that they've assembled is quite exceptional. And just to give a little bit of a behind the scenes here, I mean, I'm actively talking to people at OpenEvidence to actually be present at Delphi to talk a little bit about the work that they do on the TEDx stage. So stay tuned for that. But yeah, I'm a big fan of the work that they're doing.
Eli (42:10.566)
All right. Love it. We love learning and thinking about OpenEvidence. Anyway, certainly a new tool. And so let's move on to our last segment, our deep dive segment. You know, cause we haven't gone deep on anything. This has been all surface level conversation so far. So let's dive into something. It feels like we're diving into like a four foot pool. You know, on another day maybe this is an eight foot pool, but we've got nine minutes left on the clock here. So we're going to dive into the deep end of a four foot pool. The article that we're going to talk about today is called "Noah is Still Here" in the New York Times Magazine. The subhead of the story is "Trisomy 18 is normally fatal within weeks of birth, but some parents are getting more time with surgeries, luck, and an incredible amount of effort." This really unbelievable investigation by Sheri Fink who, full disclosure, I have been fanboying since 2009 when she first wrote, I think it was 2009 when she wrote in ProPublica about this hospital after Hurricane Katrina. Anyway, unbelievable investigation by Dr. Fink about kind of the landscape of care for children with trisomies, including, and in this case, especially Trisomy 18... the opportunities these children have in terms of being able to access cardiac surgery, for example, at some facilities versus other facilities saying as a rule, this is a life limiting condition. And so we're ethically, we don't feel like we're going to offer cardiac surgery as well as the opportunity for these children to have potentially very full lives, full of smiles and joy and... in their way, but certainly emotionally full for their families. Guys, what did you make of this article and what did you make of the evolving landscape around what families with Trisomy 18 can and can't have access to?
Daphna Yasova Barbeau (44:23.978)
Yeah, well, I mean, I'll disclose that I think we're reasonably aggressive in our unit. We've had a number of babies come through, get some procedures, go home to discharge. And that's not to say they don't have medical complexity and their lives are not complicated. And I think that this article actually shared quite a bit of how complicated their lives were, but like most children with disability, I mean, this quote said it, "even as raising children with the condition could be overwhelming, family members tended to describe them in surveys as happy and friendly with lives that had a positive effect on others and believed that their quality of life improved after receiving surgeries." And so, I mean, I think that's who we have to trust. I mean, we have to trust the families that are taking care of their babies. And we have all kinds of babies and we have all kinds of families and I'm a mom. And I think that if I had the opportunity to spend a few months or a few years with a child, then I might take that choice. And obviously I think what complicates the trisomies is that the presentations are also on quite a spectrum and we don't always know prenatally what that will look like. Obviously, the biggest risk factor is complex congenital heart disease. Frequently, we can know that ahead of time, but otherwise, we don't know what babies will do what. And I think that complicates our counseling. At Delphi 2024, Natalia Henner gave a great talk on Trisomy 13 and 18. She entitled it, "Trisomy 13 and 18, Wins and Losses," and really talking about the changing landscape. So she's definitely an expert in that area. I'd love for people to take a look at her talk. I think a lot of people in the audience left with a changed state of mind. I think lots of people will after reading this article also. I don't think that means we should take some of these options away from families, but I think potentially we should be opening up more opportunities for these families where we can make shared decision-making with them like we do in so many other cases. Ben?
Ben Courchia (47:04.738)
Yeah, I agree with you. I think that it made me think of a lot of the things that we discussed at Delphi this year. And you mentioned Natalia Henner. And to me, it made me think as well of the talk that Annie Janvier gave. I recommend you go on the TEDx YouTube channel and look for her TED Talk. It was really phenomenal because she really shows you the perspective of parents and the perspective of the meaningfulness of the time that is spent with a child, even though the baby may have a limiting condition. I think that, like Daphna said, I think that shared decision making is truly the key and probably not establishing clear guidelines on like, we do not touch a baby with Trisomy 18. That really should not be the case. We've taken care of many patients and sometimes you're dealing with a baby with Trisomy who doesn't have a terrible congenital heart disease, maybe just a VSD (ventricular septal defect) and it's really giving them trouble and it's really impacting their respiratory system. And with a VSD repair and a G-tube, they could potentially go home. Does that mean we should not give that family that opportunity to spend time? That to me doesn't feel right. And so the opportunity to discuss with families the risks and benefits and to potentially strategize altogether is really a blessing and something that centers should embrace. And by the way, if you're a center that does not look at this favorably, just know that these families are finding more and more institutions that will accommodate their life goals. And so it's one of these things where basically you will fall behind.
Daphna Yasova Barbeau (48:47.186)
Yeah, and I think to exactly what you said, Ben, I think you're gonna have to be honest with families. Like we don't do that here, but there are institutions that will, because you don't wanna be caught in a place where you say nobody does that when in fact places do. And obviously that's still on a continuum. Obviously there still appears to be a line in the sand, for example, for those babies with really complex congenital heart disease.
Ben Courchia (49:01.421)
Yeah.
Daphna Yasova Barbeau (49:16.47)
But I imagine that will be moving also in the next decade.
Ben Courchia (49:22.242)
Yeah, I agree.
Eli (49:24.71)
Yeah. And that, you know, maybe you're falling behind, but also maybe, you know, your institution just feels strongly about some of this stuff. And it's a set of values that are not necessarily aligned with all of your patients. And that's okay. But in those situations, I think, you know, there's an opportunity. While it may mean, you know, work associated with a... complicated transfer of potentially a child who's been on the unit for a little while or, you know, losing some RVUs (relative value units) in a time where, you know, hospitals are under a lot of financial pressure around the country, to reclaim sort of overall trust in the healthcare system by partnering with these families to say, we don't offer this, but here's a center that does, and here's an opportunity to go to those places. It reminds me of the first article that we discussed ever on Neo News, which was on, you know, hospitals resuscitating 22 weekers. And that there's an opportunity to say we don't do it. There's an opportunity to say we don't do it. And here's the place that does. And so I wonder if that is part of potentially the conversation as clearly variability in care is becoming rapidly the norm across the U.S.
Daphna Yasova Barbeau (50:44.361)
Yeah, and I mean, we've had some cases where we've set a family up to have a discussion with a higher level of cardiac surgery. And then after hearing it, after speaking with the cardiac surgeon or the neurosurgeon or the nephrologist, whatever the anomaly might be, that they've chosen not to do those things.
But I think having that opportunity to know what all the options are and then to have made a decision still is useful for families. We've covered that as well, that they want to know what their options are and they want to be able to make that decision for themselves.
Ben Courchia (51:31.884)
I just think that maybe my earlier opinion reflected some of my personal views, but the bottom line is I think that it is very important that people understand that having that conversation, that request from family is not an unreasonable request. It is not something that is unreasonable. And I think that if there is concern, it's a great setup... to set up an ethics committee and just have shared decisions between groups of people on an ethics committee that involve physicians, involve laypeople and all the other professions that are supposed to compose an ethics committee. So yeah, it's very interesting. There's lots of strong views on this.
Eli (52:20.276)
And, you know, I think the fact that we do on this podcast say out loud, maybe this is a reflection of our values. I wonder if there isn't a real opportunity for us to like have open, transparent conversations with families about that, because I feel like every time that I have been a part of a, you know, conversation around compassionate extubation or something like that in the unit, you know, so much of it says... here are the values that some of our families have. Here are the values that other of our families have. Sort of, all users are welcome here, but here's the buffet of options. And I think families might appreciate the transparency of, you know, we're not offering this cardiac surgery because X, Y, Z, and there are other people who maybe can do it. I wonder if that level of authenticity and humanity of, you know, doctors as people and healthcare institutions as composed of people on ethics committees that make these decisions might not be the first road to saying to patients, not we're denying you healthcare, but you know, here are the reasons we do it. And we can offer to set you up with someone who feels differently about that if that is really your value.
Daphna Yasova Barbeau (53:36.31)
Yeah, and I think we're learning more about those patients, right? Because we're seeing more of them. We are offering some procedures, maybe not all procedures, but we know that by offering some procedures, like for example, G-tube, let's say, that, I mean, the life expectancy is changing for the overall population. You know, they cited this study, more than half of children who reached their first birthday, which is still a small percentage... But those who reach their first birthday, more than half would reach their 10th birthday. And then within SOFT, Support Organization for Trisomy, I think, something like that. But it is a community for families. At least 12 people identified by their families as having full Trisomy 18 have lived into their twenties, six into their thirties, and two into their forties, according to the geneticist. So we're learning more about these families and these babies. And I think in the past we just didn't have the experience, but we certainly will.
Eli (54:43.528)
Yeah. And we should probably wrap up pretty soon. I will just read one quote that stuck out to me as pretty profound. It's describing kind of one of the doctors in this story. And it says, you know, the way Hamill feels about it, all people with Trisomy 18 will die, but so too will all people without Trisomy 18 eventually. So what constitutes a worthwhile life? Hamill said, that's the question. And I think that felt to me like the essence of the story and the essence of a lot of our conversations with our patients in cases where there are life limiting conditions. As we have one on the unit right now for sure. And another, a baby who just went on ECMO and I'm sure lots of other listeners have these situations routinely also. Anyway... so much more that we didn't get to in this article, but if you are eager to hear more about this article, you are in luck because we have the opportunity to interview Dr. Sheri Fink, who's the author of this article, a former emergency room doctor, Pulitzer finalist and winner of many other awards on the podcast for a separate interview about this story. So we will be... airing that in your feed. I encourage you to read the article and we'll discuss in more depth then.
Ben Courchia (56:12.396)
Yeah, look out for that episode on The Incubator Podcast channel to be released in the coming weeks following the publication of this particular episode of Neo News.
Eli (56:24.958)
So that's it, that's a wrap. Thank you everybody for listening. As always, we welcome your feedback, get in touch, let us know what we can do more of, less of, let us know if you want us to cover specific things that are in the news. Otherwise, we will try to be back in your feeds with a regular cadence in about a month. And good luck with everything everyone has cooking. Meantime, it's a busy time.
Daphna Yasova Barbeau (56:48.469)
Thanks everybody, have a good one.
Ben Courchia (56:49.538)
Thank you Eli, thank you Daphna, see you guys next time.
Eli (56:52.479)
Thanks guys.