#295 – 🗞️ NeoNews: Vaccine Schedule, Birthright, Trust in our Doctors, and more…
- Mickael Guigui
- Mar 30
- 40 min read
Updated: Apr 4
Hello Friends 👋
In this packed episode of Neo News, Eli, Ben, and Daphna dive into the headlines impacting neonatology and public health. The trio starts with the controversial confirmation of Robert F. Kennedy Jr. as head of HHS, analyzing his actions around the CDC, NIH, vaccine policy, and the implications of promoting “informed consent” messaging in place of public health advocacy. Drawing from reporting by The New York Times, STAT News, and Science Magazine, the team unpacks how these shifts could affect vaccine uptake in the NICU.
Next, they examine the threat to birthright citizenship in the U.S., based on analysis from The New York Times, and how immigration policy may directly impact NICU families’ access to care and trust in healthcare systems.
They also discuss a Wall Street Journal article detailing the erosion of trust in physicians post-pandemic and the fallout from a recent JAMA Pediatrics study on therapeutic hypothermia in late preterms, which raised questions about research transparency.
Other highlights include studies from Scientific Reports, JAMA Network Open, and The New York Times on air pollution, paternity leave, language-concordant care, and breastfeeding. The show ends with a call to action from Dr. Shadel Shah’s op-ed advocating for the continuation of the PREEMIE Act.
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The articles covered on today’s episode of the podcast can be found here 👇
RFK Jr.’s dangerous misuse of ‘informed consent’ on vaccines
The Vaccine Schedule Is Under Fire. What’s the Evidence for It?
Kennedy says panel will examine childhood vaccine schedule after promising not to change it
Birthright Citizenship Defined America. Trump Wants to Redefine It.
Americans' Ratings of U.S. Professions Stay Historically Low
Why We Don’t Trust Doctors Like We Used To
Whole-Body Hypothermia for Neonatal Encephalopathy in Preterm Infants 33 to 35 Weeks’ Gestation
Air pollution in late pregnancy linked to higher NICU admissions for newborns
When dads take leave, moms breastfeed longer
Implementation of a Language-Concordant, Culturally Tailored Inpatient Lactation Program
Supporting premature babies should be a bipartisan issue
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The transcript of today's episode can be found below 👇
Eli Cahan (00:03.509)
Hey everybody. Welcome back to Neo News, our segment devoted to promoting the doctor-patient relationship by keeping you up to date with what's buzzing in the news today. Today is Friday, March 14th, and I am in kind of a state of delirium. To be honest guys, I've been doing a lot of travel. I think my liver is somewhere over the Atlantic Ocean. Anyway, heck of a moment in global health. So I've been trying to keep my eyes on it. How are you guys doing?
Daphna Barbeau (00:31.855)
We're good, we're good, we're glad that you got to get away. Good for you. Everybody needs to do that every once in a while. We got a lot to talk about, don't we?
Ben Courchia (00:42.57)
I'm doing great. Lots of things going on and we have a packed episode of Neo News today. So let's not waste too much time and let's get right into it.
Eli Cahan (00:53.289)
Totally packed. I feel like every episode we get better at selecting things and maybe that's just because we select more things and more complicated things. So, with no further ado, let's get into it. I think it's relevant to say, before we get to this first piece, that we at Neo News are not a political show. However, politics is happening all around us. It is happening, whether or not we talk about it, and it is impacting our patients. I, for one, have increasingly heard of people referring to politics as, if not the social determinant of health, to the extent that politics plays an important role in all the things that intensify or ameliorate social determinants of health. Therefore, we at Neo News have decided that we are committed to covering politics, with a little “p,” on our show, when it's relevant to our Neo community and for the patients that we care for. what that means is that we're covering politics, day in and day out, in the legislative and regulatory sense of the changes that impact all of us. We want to be C-SPAN. We don't want to be Fox. We don't want to be CNN.
Along those lines, guys, let's talk about C-SPAN, particularly as it relates to the confirmation hearings of Robert F. Kennedy. As you guys remember towards the end of the hearings, RFK's confirmation seemed to increasingly hinge on the vote of one man, Senator Bill Cassidy of Louisiana, who himself is a physician. Cassidy, whose medical work has included public-private partnerships to provide free hepatitis B vaccines to thousands of children's in Baton Rouge, asked a number of direct questions during the confirmation hearings. For example, on day two of the hearings, he asked RFK, “Will you reassure mothers unequivocally and without qualification that measles and hepatitis B vaccines vaccines do not cause autism? What concerns me is that you've cast doubt on some of these vaccines recently…your bully pulpit is incredible.” In response to those questions at the time, RFK said, “Not only will I do that,” – meaning I will reassure and not cast out on the vaccines, “but I will also apologize for any statements that misled people otherwise.” Ultimately, as time would tell, Cassidy voted in favor of RFK, after a number of offline conversations that led him to feel that he would have a quote great working relationship to make America healthy again.
However, in the weeks following the confirmation, RFK has taken a number of actions as the lead of the Department of Health and Human Services. He's inaugurated a committee to reevaluate the child immunization schedule. He's reconfiguring the CDC's Advisory Committee on Immunization Practices (ACIP) due to allegations that the committee's members had conflicts of interest with pharma. ACIP members have since published their COIs online, and an analysis by Science magazine showed that payments by pharma to 8 of the 13 positions on the committee were $3,000 less than the average payment to MDs in the U S. RFK has also canceled the upcoming ACIP meetings. He's canceled the CDC's influenza vaccine ad campaigns, he's canceled NIH grants focused on vaccine hesitancy, and he's launched a CDC study looking into the links between vaccines and autism, which critics say is lending credence to a relationship that people say has been repeatedly and definitively debunked. Ben, Daphna, a lot of news related to all of this. What do you make of everything that has transpired as it relates to RFK and vaccines?
Ben Courchia (04:44.654)
Thank you, Eli. I think opening and talking about the fact that we are not a political show was excellent. I think that this is a subject that is interesting, because if you are like me, I don't consider myself to be politically engaged. I feel like I'm watching this from the periphery. But this is something that's going to definitely impact care at the bedside, whether we like it or not. The reason is, we already know that it is difficult to vaccinate our babies in the NICU based on the schedule outlined by the CDC. Daphna and I reviewed some articles not too long ago in Journal Club that shows that only about 50% of NICU babies are actually vaccinated coming out of the NICU. So the topic of vaccination, whether we realize it or not, is something that we discuss in the NICU on a day-to-day basis. When one of the highest officers in the land is casting doubt on the vaccine schedule, I think we have to be prepared to meet more questions from the parents.
In New York Times article, there's a lot of discussion about the intention of RFK. At some point in the article, it talks about the fact that he was really claiming not to be an anti-vaccine advocate. Again, people from the field, Dr. Paul Offit, who we've had on the show, an infectious disease specialist at Children's Hospital of Philadelphia, did not really believe that to be true. He said, I think he will do everything he can to make vaccines less available, less affordable, because he's an anti-vaccine activist. RFK in and of himself is a polarizing individual when it comes to this specific issue. There's a lot of different articles that have been written about this specific subject. There's a great paper published in Stat News.
To me, where this is beginning, is that right now RFK wants future vaccine communications to focus on what is known as “informed consent,” by which he means that he's giving people information about the adverse events associated with vaccines. I think that it's a very important issue, because while it could sound good to say, that's great that people are informed and that they give consent, we have to understand that it may not be the best thing to promote when it comes to vaccination, specifically, for babies and parents who are dealing with that in the NICU. In this Stat piece, they, they give a lot of different examples, which I thought were quite funny and interesting, but they said mere information, especially about frightening possibilities, tends not to make us better informed. Instead, it leads us to predictable irrationality. When we hear about the shark attack on the news or watch Jaws, we get nervous about swimming in the ocean, though the odds of an attack are infinitesimally small. I think that's really what I'm concerned about, is that we're going to have to go through the list of potential side effects. I think this is going to turn off patients and parents to proceed with vaccination. This might lead to, again only being an advocate for our NICU population here, it's going to lead to a population that is extremely fragile to be at a higher risk of developing some lethal conditions. I think that it's important for us to rethink our vaccine talk and think about what we want to convey to families, so that we can reassure them about the benefits and also discuss the risks. For some of us, we've not been asked about the risks ever, and it's like, I have to go and read that again. I really like this Stat news piece. They talk about, “Replacing persuasive public health messaging with dry disclosure of risks, even if they're technically accurate, is not merely a policy shift. It's a symptom of a broader ethical misunderstanding about the nature of informed consent and the demands of public health. If we want Americans to grasp that public health cannot always defer to individual autonomy, we need new bioethics revolution, one that engages with healthcare needs beyond the exam room and moves into the public square.” I think irrespective of where you stand, this is coming to the bedside, and you better be prepared.
Daphna Barbeau (09:10.796)
I agree with everything you said. I think you guys have outlined the situation very well. When [RFK] agreed to look at the science again, which anybody could look at it they want to, I think the public sees that as a reason for concern. I think people who weren't previously anti-vaxxers, who weren't vaccine hesitant, will become hesitant. I think my takeaway, being introspective about this situation, is I needed to learn more about the vaccines myself, because I think parents are going to ask us these questions. We always like to leave people with resources. I've been spending a lot of time [looking at] the CHOP Vaccine Education Center. There's another resource, Immunize British Columbia out of Canada that has really great resources, with the exact questions that people are going to ask. I agree with you, that this especially impacts our population, one, because of vaccine hesitancy, and two, losing this cocooning effect that we used to have as a society for babies who weren't completely immunized. We're going to talk about measles a little bit later, but it's coming and we're going to start to see those things. I think that's concerning.
In regard to the ACIP members and canceling the ACIP meetings, I think if you were really worried about the impact of vaccines, you would continue to hold the routine meetings to evaluate them, discuss them, and plan for the future. I think we always have to be careful about conflicts of interest. I think it shows how little the lay public understands about science. I mean, these people are the experts in vaccines. So yeah, we would want them consulting and informing the industry. It makes sense that the people involved in the research are also part of our advisory committees. It's complicated because we need their expertise, so certainly I don't have any problems with knowing more about their conflicts of interest and learning those statements. I think it was great that they put all those out. Furthermore, as the government support of research wanes, we will be even more beholden to industry to study and create these critical resources, like vaccines. It's further complicating the situation by removing some of those government resources and committees and things like that. So those are the things that I'm worried about.
Ben Courchia (11:40.694)
The New York Times had a very nice piece called “The Vaccine Schedule Is Under Fire. What's the Evidence For It?” It's a very good piece and a cursory review of why the schedule is the way it is. What is the evidence behind it? I thought it was kind of a great refresher and a good starting point. If you're planning on reading more about this, there's tons of interesting books. The Vaccine Race is a great book. There's a lot of great books that have been written about vaccines. It's scientifically a super interesting historical part of our field and of medicine in general. So I highly recommend that.
Daphna Barbeau (12:16.126)
I think the other risk, in all of this discussion, brings us to our next topic, which is undermining the scientific community and doctor expertise altogether. If families don't trust us about vaccines and don't trust us to come talk to us about vaccines, why should they trust us about any of the other interventions that we offer to their kids? It further complicates our jobs.
Eli Cahan (12:46.655)
Yeah, it does seem that our episodes take on themes, in a sense. Our theme of today seems to be trust and distrust. I am so grateful for what you guys mentioned about expertise. One of the things that has struck me about many of the actions taken by the current administration is that they seem to be deliberately targeting expertise, as if expertise is a bad thing, as if expertise has ulterior motives, as if expertise is manipulative, and [as if there are] bad intentions for people who lack expertise. But in science, since the dawn of time, we've relied on experts. We rely on experts when your plumbing is broken, we rely on experts when you need your Amazon delivery. I think the idea that there's something innately insidious about healthcare expertise is a worrisome one, because of what we know about health literacy. People are not numerate for any number of reasons; numeracy levels are incredibly poor in the US. Science probably owns some of that. We could do a better job communicating with people, which obviously is part of what we're trying to do on the show.
The idea that we're gonna pull out all the guard rails, do away with all the experts, provide all the information overnight to everybody, and expect them to make good decisions. I don't know how well that's gonna turn out. I think it does get to that idea of informed consent. What is informed consent, really? For me, it means two things: it means people have all the information they need, and that they can understand all the information that they have. If you are selectively providing bad information, then as Daphna said, prospect theory says that if you only provide people information on things that will hurt them, then they are going to be scared and they're going to tend towards making decisions that try to cause the least pain. People actually respond more profoundly to threatening decisions than they do to potentially beneficial decisions. On the other hand, if you withhold all the other information, if you provide only the bad information and you withhold the other information (because you're canceling committees whose roles are to disseminate objective information, as well as doing away with all the campaigns that are aimed at providing additional education), then I don't think that's informed consent. I think that's biasing the directionality of thinking of people, because you're just selectively providing a set of information. I'm not sure that that ends well for people.
I am thinking about a broader reflection on, is vaccine hesitancy inherently a bad thing? We want people to think twice about what we're recommending. We want them to engage and be activated when it comes to their health. I don't see anything wrong with vaccine hesitancy in the same way that if we recommend intubation of a baby, oftentimes people may say, hey, I need to think about this a little bit (if we have the time to think about whether or not we need to re-intubate a baby or do some other intervention for the child). But the question is, do we pair that hesitancy with the information that allows them to make a good decision? I wonder where that's going with all this action.
Ben Courchia (16:41.432)
That's a great point. Yeah, that's a great point.
Daphna Barbeau (16:41.654)
I love what you said. I was just thinking about that. What I'm going away with this is arming myself with new vaccine information as another opportunity to align with parents. They're nervous about all of the things we're doing for the babies, even in the newborn nursery, right? I think that's an opportunity to say, gosh, being a parent is so hard and there's so much information for you to try to digest. Let's work as a team together and come up with a decision that's right for your family. I do think vaccines are polarizing. They've always been polarizing; it's not new. We can really alienate patients by saying, this is just the way and the science is there. Or we can say, let's sit down and talk about it, let's look at the information, what are you really worried about? I think a lot of parents will say, I don't know what I'm worried about, but it seems like people are worried about it. If we have the information, we can share some really good resources, and I think we can level up and trust. By taking those one-on-one opportunities with families and saying your questions are valid. I love when parents have good questions. We can use a nurse statement by congratulating parents on how good they are at being parents. That's what they want – to be recognized as parents. I can tell like you're advocating for your baby, you want to make the right choice for your baby, let me help you do that. I think it's an opportunity where we can really connect with families to flip this whole situation on its head. I'm looking forward to that in the coming months.
Eli Cahan (18:32.179)
So much to discuss there. We'll see how it evolves. These will be ongoing conversations with our families. If there was ever an important time to talk to families about this stuff, in an era where maybe they're receiving less information from experts than ever before, it feels like now is the moment to really engage with those families and answer any and all questions they may have, if those questions are proliferating.
Let's move on to the next piece, which is also not for the political faint of heart. Let's talk for a second about birthright citizenship. There's a long history to birthright citizenship. There was this great analysis, an article in the New York Times about how birthright citizen[ship] defined America. It is really something that has shaped the way that the country has evolved since its initial inauguration way back when. There's a discussion in this article about two strains of nationalism that have run through the core of the United States since the dawn of time. The first is what Gary Gerstle, a historian at the University of Cambridge, calls civic nationalism, which imagines America as a country open to everyone, regardless of faith, color, or creed. The second, Gerstle writes in his book, which is called American Crucible, imagines America as a place where white people are better suited for self-government, and where non-white people could never be fully accepted as full-fledged members. Now the role of “othering” in US society and the patterns of migration have changed since the earliest stages, and since Southern and Eastern Americas were the ones who were being othered, but agnostic of the character and the nature of the people who are being othered. A 2015 report by the National Academy of Sciences found that “birthright citizenship is one of the most powerful mechanisms of formal political and civic inclusion in the United States,” and that such formal political and civic exclusion has a variety of impacts on US society, including all sorts of things that we all want that benefit our communities economically, culturally. That sort of inclusion leads to increased health. Interestingly, one of the key outcomes that this National Academy study cited was decreased infant mortality alongside decreased chronic health conditions and substance use, which we also know are issues that impact mothers and babies. The concern really with some of these changes and threats to birthright citizenship seems twofold. On the one hand, it risks late presentation to care in the prenatal, perinatal, and postnatal windows. Getting back to the theme of trust, it risks, in a moment where we're punishing or potentially criminalizing immigration, it also risks family trust in healthcare institutions and in doctors. So Daphna, Ben, what did you think of this discussion of birthright citizenship and what do you see as the impacts that it'll have on the patients we care for?
Daphna Barbeau (22:31.468)
To highlight that just even more, so just on Thursday, this has gone further up the chain. The administration has requested that the Supreme Court limit the scope of these rulings. This is moving, plugging right along. When this airs on March 30th, we'll see where we're at. Ben and I live and work in South Florida. This is very real to us. In our NICUs, we have families that have birthright citizenship, who have a vast array of immigration statuses, and they are terrified. For me, I recognize [why] we talk about trauma-informed care. [These families] have so much going on – they have a sick baby, they’re sick themselves. What these families are having to go through is just like a mountain. And then we ask, why don't the parents come in? I think some of the parents aren’t coming in because they're afraid to be at the bedside. They're afraid that their status is going to impact their baby's care, or that they may be caught in such a way that they won't be there to care for their babies. It really impacts some units more than others, but in states like ours, especially in South Florida, I think our families are feeling it for sure.
Ben Courchia (24:05.986)
Yeah, I think this was a very interesting article and the idea of the “right of soil” is something that is not just an issue in the US or in Canada. I think this is something that a lot of other countries are looking at. I'm talking about this because in France we also have the right of soil, and there's been a lot of conversations about exactly what the executive order from Donald Trump did, about should we take away the right of soil or not. France has a less straightforward path where being born in the country gives you citizenship if you are still in the country by the age of 13, I believe it is, it's not even 18. So there is some caveat that has to be requirement has to be satisfied.
It's interesting because it's an issue that really splits the population apart. When I was looking at some of the polls about this specific issue, it's really 50-50 and tends to fall along partisan line. People who are leaning left tend to favor it, people who leaning right tend to be for the revoking of the right of soil. I don't know what the answer is. Unfortunately, in politics as usual, I think we're trying to summarize a very complex problem with a very inadequate solution; that is, should it be there or not to be there? But I think it's much more complex than that. I think that there's probably mechanisms in which the right of soil can remain in effect. I think there's mechanisms in which the right of soil should not apply. I'm only saying this because of the fact that I've seen how in France we've been dealing with this for about 10-15 years, and we still haven't come to an appropriate solution. Even the one that I was just giving about reaching citizenship at the age of 13 is something that people are arguing. Some people are saying it should be sooner, some people should be later. The article mentions Germany, where the immigration status of the parents matters tremendously. To me, I see this as a very complex issue, because if you are here on a student visa and you're having a kid, then you're here legally, you're doing everything right. I don't see why the right of soil should not apply. I think if you are here illegally, then maybe we can look at whether the right of soil applies. All these things should be looked at. I think the idea of just removing it altogether sounds like a very simplistic approach that I don't particularly favor. Like Daphna said, I think that for babies in the NICU, because that's really the point of our discussion here, it’s one of the few things that used to bring solace to the families – like, I don't exactly know if we're going to get deported not, but at least my kid is going to have access to whatever they need to get cared for. But that now may become no longer be there. That can bring about a tremendous amount of stress.
I have worked in NICU in South Florida. They mentioned in the article this concept of anchor babies, where parents would come to deliver in this country. I worked in a hospital, I'm not going to say anything, but I worked in a hospital where people would come from abroad with specific packages to deliver a baby in the US. They would deliver and pay everything out of pocket. Whatever people think about this particular practice, that's not really the point of my bringing it up. But what was interesting is that it gave me a little bit of a peek into, what does it look like when all systems break down behind you? Sometimes babies would be born and we would identify something that was not diagnosed prenatally. For example, a baby comes out and has Down syndrome. I would say, hey, I need to do an echo and I need to do some thyroid function testing. First question of the parents, beyond the question of what does that mean for my baby to have Down syndrome, is, how much is that going to cost? They would tell me [their] package only includes a two day stay. I'm like, oh my God, your baby gets whatever your baby gets – we're going to do the right thing for your child. But you can see that for some parents, they had spent all their savings to try to come to the US to give birth to a baby, and then have the potential path to citizenship through that child. It's definitely going to impact families in the NICU. I would have hoped that maybe if this issue was brought back to the table, then we can look at it in a more comprehensive manner.
Eli Cahan (28:39.455)
I think so much of what you guys have said are things that I've been thinking about and are just so important. You know, I've been thinking a lot about this in the context of what we know about patient engagement and what we know about patient self-advocacy and what we know about patient activation. Ben, I agree with you that there's a world in which there are alternatives to birthright citizenship as it's currently written into law that still maybe permit some of those things, that still permit inclusion pathways to citizenship or alternative forms of engagement in American society. This allows our patients to feel like they can stay and receive all of the care that their children need, that they can stay and receive all the education that we need them to have before they go home, and that they can participate with the health care system on an ongoing basis. The question is, with the executive order as is currently written, and some of the other actions to take away pathways for citizenship, whether there's anything we can salvage at the bedside to try to keep these families engaged and to try to reassure them that they're in a position to learn and continue to receive care with us.
Ben Courchia (30:15.278)
It's going to be very hard, I feel like. To be honest with you, I went through the immigration process. It is not pleasant. And I did everything legally. I never overstayed a visa. I did everything by the book. I'm telling you, every time you have to engage with anybody in the US from immigration…anybody who's listening from abroad who has gone through airport security will tell you that it's terrifying.
Daphna Barbeau (30:29.942)
It's terrifying. Even after you become a citizen, it's still terrifying.
Ben Courchia (30:41.358)
I had this awakening after I got my citizenship where I was like, fuck that shit. You can’t treat people like that. I remember that when I became a citizen, then my parents who came to the US after me somehow, ended up going through their citizenship stuff. I'm like, hey, don't let them talk to you like that, you have rights. But this attitude only came to me once I got my passport. But until then, you're like, my God, they can send me out of the country. I’ve seen friends of mine who have been turned away at the airport. It's a very ruthless process. Immigration officers are not always the most friendly, I must say.
Eli Cahan (31:27.327)
Well, sounds like you instantaneously became an American with your four letter words, upon receipt of your –
Ben Courchia (31:32.718)
I came with my Diet Coke and I was like, you will not talk to us this way!
Eli Cahan (31:56.553)
Diet coke and a pack of Takis. You were like, let's do it, let’s stand up to the TSA.
The only other thing that I'll say is this reminds me a lot also of some of the executive action around public charge back in the first Trump administration. For those who don't remember those policies, it was basically a threat that wasn't totally well-defined, but basically stated that if you use any kind of public benefits or you find yourself on the reels for using any entitlement program under the federal government, and you were up for immigration in any capacity, that utilization would be accumulated and tallied, and somehow count against you. Even though this public charge program was really not well formulated, the chilling effect it had on care was unbelievable. There is just mountains upon mountains of research on how profound the mere threat against people's citizenship had on their utilization of healthcare. I hope that is not the case with this executive order too, but I think the history books will show that the mere threat that (A) people's children would not be entitled to citizenship in the pathway that has been since the amendment was enacted to say whether there was an alternative pathway for them. I can't help but think that combined with already seeing ICE enforcement taking place in settings that we have not seen, ICE (Immigration and Customs Enforcement) taking action in hospitals, that those two threats may have a really severe effects on our families. I just can't help but feel that this again reemphasizes our need to be present at the bedside as much as we can to really build connective tissue with our patients, as well as potentially going to the places they live and they thrive, to try to engage with the community outside the hospital, if the hospital is no longer a place that people feel safe going to.
Ben Courchia (34:00.396)
I would say, again, try to look elsewhere for maybe potential solutions. Like I said, in France, for example, we've been we've been looking at this issue for many, many, many years. There are several concepts that have come about, [including] right of soil or the right of blood. How do we combine sometimes these two to come to something that's more comprehensive? How do we add to that the idea of family reunion? If a member of a family has citizenship, is it fair to them to say, you can either be with your family outside the boundaries of our country, or can we allow some family reunion, where you can say if mom is in this country, let her kids come in and give them citizenship. I'm not saying that there are solutions, but people are looking at this and other countries are actively thinking about this process. Let's try to maybe take the best of other places and see what works for the US. I don't think it should be an all or none discussion.
Daphna Barbeau (34:56.654)
I think wherever you fall on this issue, just like the last issue, I mean, it's going to impact our families. I highlight what's going on in the NICU, but I think Eli, you were totally right. This is really going to impact prenatal care. Are we going to get more postnatal diagnoses, more preterm birth? In Florida, the preterm birth rate is extraordinarily high. I think that this will impact our day-to-day work for sure.
Eli Cahan (35:26.387)
As I look towards the beginning of fellowship with trepidation, I can't help but feel the number of surprise cardiac babies or surprise VACTERLs that I'm gonna see in the delivery room will be higher. I guess we'll just have to be ready for that. Ben, maybe there is a harm-reduction approach to politics. Maybe we can meet somewhere in between rather than saying, we need this to be exactly as it always has been.
Ben Courchia (35:59.222)
It's never popular for a politician to go on stage and say, this is a complicated issue and there's some nuanced problem that we need to address. It's always better to say, everybody do this or do that. It's just a shame.
Eli Cahan (36:12.927)
This is another thing that we could talk about forever, but full slate. Let's keep moving.
Let's move on to our next segment, which we call Research in the News. Along with today's theme in keeping with the theme of loss of trust, there was a really interesting article in the Wall Street Journal featuring some research out of Gallup that described changes in trust over time among various professions, including doctors. This study found that the trust in doctors has fallen, from a high of 77% of survey respondents who said they have high or very high trust of doctors in 2020, to now 53% in the most recent data. That 53% is below the pre-pandemic levels of trust, which were at 65%. So we've seen a decline that is really historic in measure and is outpacing even what we saw before the pandemic. The article in the Wall Street Journal goes on to feature one patient in particular, a patient named Sylvia O'Brien, a 74-year-old whose husband struggled with behavioral dysregulation and cognitive issues. For many years before, he ultimately received a diagnosis of dementia. Those many years, based on Ms. O'Brien's account, included lots of pain due to combativeness, behavioral dysregulation, all the kinds of things that I think any of us who have dealt with an aging individual in our lives who has struggled with dementia, or some version of cognitive impairment, may know too well. During that time, Ms. O'Brien not only struggled to care for her husband during these episodes, but also she churned through providers, medications were denied by insurance, she felt blamed at various points by doctors for everything that was happening. She said, “While I understand the medical field is overburdened, I feel like I'm working equally hard to stay on top of rotating doctors who often do not seem to understand and can be dismissive.”
Ben Courchia (38:29.326)
Love that quote. How relevant was that for the NICU as well?
Eli Cahan (38:39.603)
Yeah, absolutely. What did you guys think of the poll this article?
Daphna Barbeau (38:47.902)
One, I think we're all feeling this in the NICU. Two, I think we must admit that I think we're still a little bit insulated in the intensive care sphere from some of this, because there's not a lot of choice for families and the babies are critically ill. So I really can only imagine the burden that this is happening to like our outpatient colleagues. I do think we're not seeing the brunt of this, but I think there will be a kind of a long-term trickle-down effect. I mean, look, there are a number of reasons this system has interfered with patient-physician trust. The system expects that everyone will see more people and less time. This still does impact us in the ICU. Staffing ratios are down, support people are down. The system wants higher revenues with less cost. So what that means is there's just less people to go around. There's less time to sit with families and patients, one, just on the topic of diagnosis, two, on explaining and helping people understand and engage with the medical system. We're just at the diagnostic rung, right? Just diagnostic treatment, these associated things that helping families understand what's happening, sitting with them, going over all the questions…you really have to take the time, to make the time, or do it for free. Unfortunately, the system is just not allowing the Daphna way. Even yesterday I [thought], there were two parents I should have spoken to today and I didn't get to have been beating myself up about it, but the system is just not supporting this type of interaction. Unfortunately, our whole healthcare system has found a way to pit patients against physicians so that like we all don't recognize what's happening here. It really should be like physicians and patients working together to repair the system. But I think there are just so many people, not patients or physicians, that are benefiting from the system that they won't let that happen.
So, I've rambled on. All of that is to say, like, we just have to take the time in the day and say, this is hard. This system is nuts. Let's help you understand what's going on with your baby. Unfortunately, we can do this on an individual basis, but we really have to reevaluate what our healthcare system looks like to regain trust across the board.
Ben Courchia (41:30.956)
I really enjoy this article because it indicated so many things that we've been talking about and that I've been saying on the podcast before. We can look at some of the reasons why the trust is breaking down between patients and doctors. There are things that to me are falling directly under our purview. Number one, the system, as Daphna said, will reward you for utilizing some specialty care. So it's good if you can actually refer to cardiology, if you can refer to GI, and you end up using these subspecialty services, but guess what? For patients, it's much more difficult for them. I think that sometimes, is it that much of an issue that if you have a benign murmur on the baby, or on the child in the office, in the outpatient setting, do you really need to send to the cardiologist for an echo that will find a PFO, that will be followed up in a month? This is what people are struggling with. They have to deal with the bills and so on and so forth. Like you said, Eli, like one of the points that is mentioned is that they go to multiple doctors, and they have to repeat [their] story over and over again. That was the promise of the EMR. The EMR was like, hey, you're going to do all this documentation, but it's going to go across. Then you won't have to ask those questions. Guess what? It’s just a billing system. It's not meant to carry information over. The patients would probably be better served if they printed their EMR notes and showed up at the doctor in person. So I think this goes back to show that, we should not prioritize documentation as much as they pretend [it’s important], because again, when people go to another physician, they rarely have access to these other notes, and they have to go over the system again.
The other thing that this article mentioned, which by the way, I was not familiar with, this idea of professional advocates and coordinators of care. Like I didn't know that you could hire someone to coordinate care for you and do all the appointments. Again, that is something that is kind of crazy in and of itself. The fact that this profession has emerged just shows you how ridiculous the system has gone.
Daphna Barbeau (43:29.26)
And then these new professions are invested in keeping the system the way it is!
Ben Courchia (43:34.572)
Not yet, because right now it's working great, but they're not going to be aligned with simplification of healthcare delivery and access. So we'll see what happens. Very, very interesting article. A lot of things for us to take home and potentially improve on to repair that broken trust.
Eli Cahan (43:53.171)
One of the things that also stuck out to me in the article is that a theme [that I have heard] over and over in conversations about distrust of healthcare workers and doctors is dismissiveness (or gaslighting in Gen Z terminology). There's droves of research on trustworthiness. The research on trustworthiness states that really trust is but an outcome measure. The process towards building trust is an effort in accumulating basically trustworthiness credits until you hit some threshold where people trust you. The research on trustworthiness says so much about obviously just what maybe you could call skin to skin time, just being present with patients and hearing them out. In the same way we think about in our relationships in any other aspects of our lives, [it is important to] provide affirmations and validating concerns and addressing all sides of the issue, even when we think those concerns are not things that are founded in science or otherwise that we understand based on our reviews and the literature. So I don't know when I read this kind of article and I see the stats that show that, you know, the numbers are worse post-pandemic than they were pre-pandemic. On one hand, it tells you that people endured so much trauma with the healthcare system during the pandemic that maybe part of this is just an aversion to a system that really people have such bad memories of. Then I wonder, especially during the pandemic, how many of those conversations didn't happen. [Maybe we are now] carrying the garbage bag of those losses now.
Daphna Barbeau (46:06.67)
I think we have to remember how much trauma was injured by the healthcare system too. I think some people are just now getting their feet back under them, just now re-enjoying the practice of medicine. I hope that we can build back some of that trust. I did want to mention one other quote, which I think is kind of like my personal call to action to our community, “social media saved my life when the medical system failed me.” We've been talking about this a lot. If physicians are not active on social media, there is a vacuum of information and patients will find information that that aligns with their views and their values. If you're not there to provide some of that useful information, I think that's a mistake. This is happening. I know people are changing where they go on social media and where they want to be. But I think we have an obligation to be present across multiple platforms where our expertise is valuable, because that's where patients are looking for information.
Eli Cahan (47:18.025)
If parents have a question, they're not going to sit in the room until we privilege them with our presence. They're just going to Google it, they're just going to look it up, and maybe it'll pop up on their TikTok feed, certainly if they've been talking about it and their phone's been listening to them. Totally agree. People will find information when they have questions, whether or not we are the source of the information.
I want to highlight on this conversation of trust that this actually came up in a really interesting way in our fields recently. It came up with regards to a study that broke in the past few weeks in JAMA Pediatrics that studied the effects of therapeutic hypothermia (THT) in 33-35 weekers. The study showed no beneficial effect of cooling patients in this cohort. If anything, it actually showed non-statistically significant increases in the primary outcome, which was death or disability in this cohort. I think what was the most interesting about this study was not even the findings. Certainly the findings were interesting and we need additional studies to look at if there was a reason that THT did not show effectiveness for this cohort, can we understand why not, and are there certain patients in this cohort who could benefit? But what was really interesting about this is the conversation that followed. In one breakdown of the study, there was a tweet response by the patient group, Hope for HIE. In part of that response, the administrator for the group wrote that parents of enrollees as of today have not been notified of the results of the trial, including interim analysis at PAS 2023. That was all over social media, and the full study was published yesterday. That's unethical. Optics are not good. The group considered slipping on the shoes of the loss parents from the cooling group, a tough pill to swallow, seeing more babies with statistical significance die in the cooling group will likely lead to a lot of “what ifs” about participating in the trial. “Would my baby be alive if we didn’t do this trial?” is maybe that's one question parents have. It doesn't matter if there was a higher mortality rate anyway, it's higher in the cooling group. The author of this post of the Hope for HIE group concludes the post by saying “the fact that communication engagement was so poor with families enrolled in this trial is even more upsetting today after a good night's sleep. This hurts research and neonatal trials. Perception of our healthcare system, birth, etc., is at an all-time low. We need to work together to improve this.” So this seems to me a capsule in really how we screwed up in terms of communicating with patients and keeping patients involved in the research process, in addition to the clinical care we provided. I wonder, Daphna and Ben, what are your reflections on this study and the conversation that followed from patients saying that, if anything, everything involved in this research further defrayed their trust in the healthcare system?
Daphna Barbeau (50:49.912)
Well, we're going to review the whole article on Journal Club. But I think just talking about this issue of trust in research…again, as a medical community, we've been stacking the decks against ourselves by some of the mistakes we've made in research and informed consent and things like that. I think this is a perfect place to talk about informed consent. Those things needed to be discussed. Betsy Pilon is such a patient and family advocate with Hope for HIE, and those families are creating positive change across the lifespan for these children and their families. Parent groups have always pushed medicine forward faster than physicians and scientists have done alone. But it was such an important topic. What is our obligation to share with families before studies come out? Is anybody doing that? I was really eye-opening for me. I'm not a primary researcher, but I really felt her frustration and her sadness in her post. I think it brings up a really good topic for the community to discuss. People are weighing in about it. As we're bringing parents into research from the ground level, I think this is a great place to start about how we communicate results of the trials to families. I don't have the answer, but it's definitely something we need.
Ben Courchia (52:47.33)
Betsy Pilon is a great advocate. She is doing amazing work with Hope for HIE and she was one of the first guests on the podcast, I think she was on the eighth episode of the podcast. That was very cool. I don't have much to add, but we talk about how we have to involve families in research and outcome driven research and so on, but the bare minimum is to communicate the outcomes of the study to the families and to the participants. The fact that they were kept out of the loop is such a low-hanging fruit. We have a lot of work to do.
Eli Cahan (53:29.483)
I'd be curious to speak with Betsy about what we can learn from inclusion of families from how this study played out. There are procedures that we could take in the IRB process and in the research process that could formalize and standardize the way in which we communicate and which we follow up on results with families.
Ben Courchia (53:55.902)
That should be almost part of the protocol. If you submit for grants, [you need to agree that] the families will be made aware. They really take a chance [with your study] when they give informed consent. They give a lot of trust to the investigators. The least we can do is say, here's [the results], especially after the study has closed though maybe not before.
Eli Cahan (54:14.665)
I know that submitting IRB protocols is below the two of your pay grades. As someone who's working on an IRB protocol right now, the idea of adding another field to it, gives me heart palpitations, but it feels like it could be really important and actually pretty low-hanging fruit.
Ben Courchia (54:31.606)
I think it should be optional and it should be something that gives you more points when you're applying.
Daphna Barbeau (54:37.646)
That's one way to incentivize. It's kind of mind blowing that this has not come up before. Maybe it has come up, but that we don't have a system for this. It's mind blowing.
Eli Cahan (54:55.851)
All you have to say is points and gold stars and I'll do it.
Next article. There was a study that came out in Scientific Reports that showed a really interesting relationship between air pollution exposure in the third trimester and NICU admissions. Among the outcomes, this study showed one of them is that higher ambient levels of nitrogen dioxide and fine particulate matter less than 2.5 microns, better known as PM 2.5, increased the likelihood of NICU emission 30-35 % for NO2 exposure and 11-22 % for PM 2.5 exposure, even after adjusting for parental characteristics. It's worth noting these are not antigens that you are only exposed to if you're in a wildfire zone or if you're in some exigent environmental crisis. These are antigens that you're exposed to if you stand outside by the street and there's traffic driving by you. The author of the study described that these antigens are ubiquitous in higher traffic zones. They don't discuss it in the study, but certainly we know the history of urban planning in the United States and of redlining in the United States that it is non-accidental the groups that are exposed at higher rates to higher traffic zones like freeways, highways, and things like that. Daphna, I think you picked this study. What were your reflections on the outcomes that we saw in here?
Daphna Barbeau (56:50.382)
We should know what's going on. Obviously, we know there are environmental links. We're all learning about how our environment impacts our overall health. I think it's an uphill battle. I think we are not investing in good environmental - that's not a political statement either - awareness and safety and health. It's impacting our health, whether we pay attention to it or not. Certainly some of our families are more at risk than others, and it definitely impacts the NICU population. I think we're going to see more environmental studies. I just thought it was interesting to know what's going on and to hear about it. I think really astute parents are going to say, how's that going to impact my baby when they leave the NICU? I don't think we have that information yet, but I think we are starting to recognize that it will.
Ben Courchia (57:50.582)
I agree with everything you said. This is a topic that has been very near and dear to our heart. We actually invited to the Delphi conference Dr. Bruce Becker from California. He had written a very interesting article in JAMA called “Association of Air Pollution and Heat Exposure with Preterm Birth, Low Birth Weight and Stillbirth in the US.” He gave a TEDx talk that was called “The Climate Crisis: it's not your fault, but it is your problem.” It was phenomenal. It's actually gone viral, it's got 64,000 views. So it's definitely something that is compelling to a lot of people and something that matters to us tremendously. So yeah, I agree with everything you guys said. I don't have anything to add. If anything, just go check out Bruce's TEDx talk. You can find it on the TEDx YouTube channel.
Eli Cahan (58:41.641)
I'm glad to see more and more research on air pollution, other forms of pollution, and the implications on mothers and babies. I mean, there has been lots of interest and increasing interest in these kinds of studies, especially since the wildfire season in various parts of the US has been getting so bad. I think thus far, as tends to happen with research, a lot of these studies have not focused on mothers and birthing people and infants. I’m glad to see this start to emerge and I hope we'll learn more to inform potentially some action, at least in high-risk regions.
So let's move to our final segments here in Neo News called, “You May Have Heard.” Let's just run through some other things that caught our eye since last episode. The first study that we want to highlight is the study that looked on the role of paternity leave on breastfeeding. For context, only about 47% of infants are exclusively breastfed through three months. Of course, the recommendation is exclusive breastfeeding through six months, with ongoing breastfeeding potentially through two years of age. But less than half of infants are exclusively breastfed for half the time that it's recommended. Concurrently, this study takes for context the fact that only about one in eight employers offered paid paternity leave to their male employees, and that most fathers, in this 2022 study that, found that most fathers who participate in that study only took about a week or less of paid leave. So this study looked at the impact of fathers who took more than two weeks of paid leave. It found that fathers who took two or more weeks of leave were 31% more likely to report their infant being breastfed at eight weeks compared to those who took less than two weeks. Unsurprisingly, the study found pretty significant disparities in access to paid leave, with fathers who were self-identifying as white being more likely to receive paid leave than fathers from other racial and ethnic groups. They did other stratified analysis that showed that access to paid leave was associated with socioeconomic opportunity as we traditionally think about it. Ben, Daphna, what did you guys think of this study and the role of father involvement and paternity leave in breastfeeding?
Ben Courchia (01:01:52.076)
It's like, are you serious? This is a no-brainer. Of course if the spouse is able to be available to support the mother during the first few weeks after birth, then obviously it's going to make breastfeeding easier. Breastfeeding is extremely taxing. It's a big ordeal for parents to actually adhere to. One of the things that was interesting is that it's up to us to make sure that we include fathers in the conversation. At some point in the article, it says “A turning point came when his pediatrician gave him tips on supporting his wife with breastfeeding…’It made me feel part of the team,’ he said. ‘Now I do the same for the dads I work with.’” So yeah, crucial.
Daphna Barbeau (01:02:37.998)
You took the words right out of my mouth. No one talked about involving dads and to credit dads, shout-out to good dads. Dads are more involved than ever, and this is a good thing for kids and babies, especially medically complex kids coming out of the NICU. Obviously if we really care about investing in children, then we would invest in universal paid parental leave that includes all the parents. So that's all I to say.
Eli Cahan (01:03:13.375)
As obvious it is, the magnitude of the effect was interesting to me. We may say it's a no-brainer that if there are two parents it's more likely that the breastfeeding partner can participate in ongoing breastfeeding. But the question is how much is it? And I guess the folks who were doing the high-level cost-effectiveness and economic studies are the ones who will ask, is it worthwhile? So, you know, it'll be interesting to follow those studies as well.
Next study here that you may have heard, was a study in JAMA Network Open that showed that participation in a language-concordant culturally-tailored breastfeeding program showed statistically significant increases in breastfeeding, prior to and at six weeks postpartum. It did not show statistically significant increases in exclusive breastfeeding at the six-week follow-up. Given what we know about health literacy, language concordance, culturally tailored care, I think it was interesting that this was a really rigorously conducted study to look at the potential impacts of a program designed with those methods in mind and the impact that it had on breastfeeding. Ben, Daphna, any thoughts on this one?
Daphna Barbeau (01:04:50.126)
I think this is another a duh with a capital D! Language, obviously, this is the bare minimum. I will admit I still see this happening in my hospital where we are not playing fairly. People should have information in their language every single time they come to the bedside and every single time we call them on the phone. This sets a baby up for their entire lifetime. Breastfeeding support should be done in their primary language. But I think it also underscores cultural competency, and that I think is a harder target to hit. I think we don't recognize some of the cultural components of breastfeeding. I think all of us can learn a little bit more about that. So that's my takeaway – how can I include more cultural competency in my discussions at the bedside about breastfeeding?
Eli Cahan (01:05:51.209)
Our last piece for today that you may have seen was an op-ed by a known entity to the podcast and to the neonatology community. This is Dr. Shetal Shah, a wonderful advocate and neonatologist, from Westchester, New York. Dr. Shah has been an amazing mentor to me and a friend and mentor and coach to many people in our community. Dr. Shah published a really interesting op-ed on the PREEMIE (Prematurity Research Expansion and Education for Mothers who deliver Infants Early) Act, which none of the three of us knew about before we read this. For shame!
Daphna Barbeau (01:06:30.702)
Don't tell Shetal – he'll be so mad at us that we didn't know.
Ben Courchia (01:06:37.568)
Every time Shetal reaches out to us to talk about something, he says, hey, did you guys hear that? I’m like, I don't know what you're talking about.
Eli Cahan (01:06:44.875)
You're like “Of course I heard!” then I have to go back and read it.
Anyway. So the PREEMIE Act may be going away at the end of March. Daphna, I know this op-ed caught your eye. What were your thoughts on the op ed and some of what Dr. Shah shares?
Daphna Barbeau (01:07:04.79)
This underscores for me how much we need neonatologists as advocates going to the policy level. This impacts our care every single day, and it's really sad what is happening. I'm just going to read this, I thought this was so useful: “The $20 million cost of the PREEMIE Act is a bargain. In 2016, preterm birth cost the U.S. healthcare system $25.2 billion or $64,800 per preterm birth. By 2023, the costs had increased to over $270,000 per patient, with the bill for the most critically ill infants approaching $4 million. A collaborative project among neonatal units funded by the PREEMIE Act reduced infection in high-risk infants by 67% and was associated with $43,000 in savings per baby. And none of this accounts for the emotional and physical toll on families, or the non-medical costs parents bear for transportation, meals and childcare during their newborn’s months-long hospital stay.”
The PREEMIE Act was doing a lot of things for families in finding ways to reduce hardships that these families have going on in their lives, even outside of the NICU. How can we move forward with even less support for these families? So I'm really sad to hear this. I hope that there will be ways for us to advocate for reestablishment of some of these policies and opportunities for families.
Eli Cahan (01:08:43.155)
If you like us were naive, and did not know about this act and want to read more and want to potentially advocate for it, then we will post the link in the show notes and you can stay up to date on that.
Daphna Barbeau (01:08:58.196)
Email Dr. Shah. If you want to get involved, then he's your guy. He’s a great place to start getting your feet wet for advocacy. There are lots of opportunities for neonatologists. The section has a long history of advocacy. We’ve had numerous great interviews with Shetal, some interviews with Lilly Liu, definitely check them out and find other ways to get engaged.
Eli Cahan (01:09:28.029)
Absolutely. Well, that is a good note to end this episode of Neo News.
Ben Courchia (01:09:34.796)
So that means we'll talk about poo milkshake next time.
Eli Cahan (01:09:38.653)
Yes, we are going to talk about poo milkshakes next time. A trailer, a sizzle reel, for next time! Poo milkshakes got left on the cutting room floor today, so tune in next time. You will hear all about it.
Thank you for tuning into this episode of Neo News. We are always eager for your feedback. If you heard things you liked that we should do more of, if you heard things that you didn't like that we should do less of, if you have any other suggestions, reach out to us. We'd love hearing from you. Of course, if you have articles that you think we should be talking about or covering, let us know. Otherwise, Neo News team out for this time. Thanks for listening.
Ben Courchia (01:10:17.646)
See you next time.
Daphna Barbeau (01:10:17.679)
Bye everyone.
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