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#121-124 - Advocacy in the NICU




Hello Friends 👋


This week, we're dedicating a special series of episodes to advocacy in the neonatal intensive care unit. Over the course of four episodes, we'll dive into critical topics such as the newborn screening program, the provision of donor human milk to preterm infants, extending post-partum Medicaid coverage, and addressing the loss of insurance coverage at the end of the COVID public health emergency. We have invited passionate experts and key stakeholders to share their insights, experiences, and perspectives on these pressing issues. Join us on this eye-opening journey as we explore the importance of advocacy in improving neonatal care and supporting families during their most vulnerable moments. We would like to thank Dr. Shetal Shah for being the inspiration and the architect of this series. We hope you enjoy these episodes and the amazing work done by our series of guests this week.


Enjoy!

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Please find below some of the resources mentioned by Dr. Tarini on the podcast:

Viall-How-a-baby-with-classic-galactosemia-was-nearly-missed--When-the-test-succeeds-but-s
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Download • 824KB
Watson-Looking-toward-the-Future--An-Inquiry-into-the-Acceptance-of-a-Hypothetical-Laborat
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Download • 437KB
Grosse-From-Public-Health-Emergency-to-Public-Health-Service--The-Implications-of-Evolving
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Download • 368KB
Kwon--I-m-fine--I-m-just-waiting-for-my-disease--2011-Neurology_1-copy
.pdf
Download PDF • 169KB

You can reach out to Beth Tarini by clicking here.


The transcript of today's episode can be found below 👇

121-dr-beth-tarini-the-newborn-screening-program-advocacy-series_otter_ai
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Download TXT • 59KB

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You can reach out to Rebecka Rosenquist by clicking here.


The transcript of today's episode can be found below 👇

Ben 1:00

Hello, everybody. Welcome back to the incubator podcast. It is now Monday. And we're continuing with our advocacy series Daphna. How's it going?


Daphna 1:09

I hope people are enjoying this week, because, you know, it was a lot of work. But the topics are so important. So relevant, I think, to our practice,


Ben 1:19

yeah, that's no excuse that it was a lot of work for us. It's. But I do think I do think I do think we're have the opportunity on these episodes to speak to leaders and people who are really at the pinnacle of this work and actually address a topic that often doesn't get enough attention. And, like we always say, the podcast is allowing us to fix a lot of things that we're struggling with, especially as PTS is coming up. I mean, I'm in the middle of this, you get the schedule, and you're like, What am I attending? What am I favoring over another? Yeah, and and I'm and so it's nice to be able to not have to decide we can actually address all these topics on the podcast and one after another when we get around to them. So it's kind of nice. We don't have to our admins is anything bad about PS taking it back. It'll link it back. It's great. I


Daphna 2:08

don't think that was bad. There are a lot of options. Right? And you gotta every year to figure out what you're gonna pick, right? Yeah.


Ben 2:18

The easy ones are when you're speaking so you're like, oh,


Daphna 2:20

clearly should be there. Yeah,


Ben 2:21

I have to attend. All right, definitely. Who want to tell us a little bit about Rebecca wasn't Quist today,


Daphna 2:30

my shirt do. Rebecca Rosenquist is the health policy director at Policy Lab at Children's Hospital Philadelphia, and a member of policy labs leadership team. She's responsible for setting and executing the center's policy agenda, aligning policy priorities with research portfolios and utilizing policy labs, research and expertise to address policymakers needs. This Rosenquist oversees the center's relationship with Trump's government affairs team to share policy labs work with policymakers at all levels of government. This Rosenquist has a vast experience working in health policy and advocacy. Most recently served as the Director of State engagement for shatterproof aid Atlas, a quality measurement system for addiction treatment programs. Prior to that she was the Associate Director for Health Policy at the Leonard David Institute of Health Economics at the University of Pennsylvania. She has also worked in global health policy and advocacy with action for global health and the Tom the Thomson Reuters Foundation both in London the UNITED KINGDOM IS RISEN has started her career in state and local politics working for the political action committee Emily's list and Miss Rosenquist holds a master's degree in global politics from the London School of Economics and Political Science and graduated magna cum laude from the college scholars program at the Cornell University. She lives in Narberth with her husband and two children and help us welcome Rebecca Rosenquist.


Ben 3:52

Rebecca Rosenquist, thank you so much for being on the podcast with us this morning.


Unknown Speaker 3:57

Thanks for having me. I'm excited to be here.


Ben 3:59

And we have our recurrent guest and friend, Dr. Shadow Shah, how are you shuttle doing? Well,


Speaker 3 4:05

I'm doing well. Like I said, I'm just excited that I got to see Daphna in person in Arizona. And I'm looking forward to seeing Ben at the Eastern society for pediatric research meeting in a couple of weeks in Philadelphia, the Child Policy Lab.


Ben 4:18

Well, you know, what gets me excited about coming to Philly is a museum called the bounce the Barnes Foundation if you guys are not, and it's been like I've visited feeling many times, and it used to be a small house outside of failure was so hard to get access to. And eventually it moved into this museum, which makes it super convenient to visit. But there's a great documentary about how this was not the founders wishes to transfer the collection into the city. So it's I think the documentary is called The Art of the steal. And I highly recommend it because it has a density of masterpieces that is probably just as high as the met in New York and some other countries in Europe. So very much looking forward to any visit in Philly just so that I can go visit the barns. So


Daphna 5:05

then always teaches us something new every


Unknown Speaker 5:08

state has a great tourism. And that's a great film. So highly recommend.


Ben 5:16

So, Rebecca, we are very happy to have you on. You work in the Director of the Health Policy Lab. And the discussion that we wanted to have was about Medicaid coverage in during pregnancy after pregnancy. And I guess the first thing we wanted to talk about and shadow feel free to chime in is why why is this an important topic for us, as physicians neonatologists, and people in the health care area?


Speaker 4 5:49

Sure, I mean, I think I think there's a number of reasons this is an important topic. I mean, first and foremost is that, you know, we really are having a crisis of maternal and infant health outcomes in this country. And in comparison to other wealthy countries, we have the worst outcomes of any other wealthy countries, and then with huge racial disparities in those outcomes. And I also know that probably, you know, listeners this podcast, hopefully know and recognize this, our maternal health outcomes, infant health outcomes are intricately related. So I mean, I think that that is the moment where and I think we've been in that moment for some time, but there's also just, thankfully, a growing recognition to some extent of that crisis of maternal and infant health outcomes. And then I think, with that, and that national conversation becomes the political will to try to do something about that, which is really welcome. And we've seen a lot of energy and efforts at the federal level and about addressing this issue. And so people are looking for solutions. And there is one that sort of there, and it's only one of the solutions to a very complicated problem, obviously, to improve maternal and infant health outcomes. And, you know, multifaceted, I would say, but, you know, one part of that solution is ensuring continuous coverage and continuous health insurance coverage in the prenatal period and in the postpartum period. And also kind of redefining, you know, how long that postpartum period is, and that moment of care that people need in that postpartum period. And so health insurance coverage, and I always say this, when we talk about health insurance coverage, and I'm a huge fan, I'm a huge fan of, I wish we could achieve universal health insurance coverage. And for listeners outside the United States, you know, it'd be so shocking to people that we still have so many uninsured people in this country, but it's only a part of the solution. You know, some people refer to it as kind of the ticket to our system, like you need coverage, you know, in order to access the health care system in the United States in order to ensure you can afford to do so and access services, but it's only one piece of access. But a very important one. I'd say, you know, and so what, you know, just go back to your question, Medicaid, in this country is a huge payer for, you know, actually right now just say, for children, it's ensuring more than half of the children, it pays, it's the single largest payer for pregnancy related services. So it actually pays for about four and 10 births in this country. And then actually, with huge variation, so that number is even higher, in some places. And so it's in thinking about the levers we have available to us to think about improving maternal health outcomes. Obviously, anything that we can do in the Medicaid program, which is so huge and reaches so many people, has huge potential for us. So, you know, as I said, we have the political will, we have this huge program. And so, you know, with the recognition of all the work we have to do, there's been great movement, on thinking of using the Medicaid program, expanding the time that people have access to it in the postpartum period, and the eligibility levels for that access in the postpartum period, to have it be part of our solution and trying to improve maternal and infant health outcomes.


Ben 9:12

And we'll talk and we'll talk about many of these, of these opportunities that are coming up for for extending extending these benefits. But Shall we were talking off air about some of what the neonatologists and the providers can do. And so I was wondering, maybe you can you can share what you were telling us a little bit before we started recording. Sure. So


Speaker 3 9:34

just to build a little bit on on what Rebecca said, you know, she had mentioned that foreign 10 births are taking place right now in in Medicaid, and that number is an overall number of births, right? But when you look at the birds that we primarily as neonatologist concern ourselves with right the VLBW W births, or the births that occurred to some degree before 28 to 30 weeks or before gestation. Right, we're already 50 85% of those births are covered by Medicaid. So, you know, as we were talking about a little earlier, right, most neonatologist now are employees and they work in larger healthcare systems. And that makes them farther and farther are progressively disconnected from all of these social forces that impact the care that we deliver. And the care that we provide once someone's in the NICU, you know, we Yes, there's there are disparities that people are looking at, but we tend to treat everyone as best we can equally. But we don't really are sometimes don't fully appreciate the differences in the forces or just the scope of how changes in Medicaid policy impact the health of mothers, and babies and, and to some degree, the reimbursement or the payment that we that we collect. I also just want to talk a little bit about because I, I think all neonatologists know intrinsically what Rebecca said, which is that, you know, we are the worst in the industrialized world when it comes to maternal mortality. But and I think actually most neonatologist, just because of the literature we read are aware of that. But I don't think they understand exactly how bad things are here, relative to other countries. So as Rebecca said, We're last, but we are last by a mile. So we are 17 per 100,000. All right, that's the US maternal mortality rate 17 in 100,000. All right, that's 700 deaths per year. Okay, the person who's second to last and and Ben's going to look up when I say this is France. Right? And they are only seven per 100,000. Yeah, so we are behind but we are more than double. Yeah, behind. If this were a race the other countries would have complete would have crossed the finish line. showered have sack Yeah, and gone home. Before we even got there.


Speaker 4 12:05

And shuttle if I can just I mean, I mentioned like and we all hopefully, you know, this has been apparent to people to like the racial disparities and those figures, but just to put a finer point in it that black American Indian and Alaskan Native women are two or three times more likely to die in childbirth than white women. And so, you know, to that point of shuttle's very stark statistic that's even worse. For racial minorities in this


Daphna 12:30

country, somehow we've gotten to a place in American medicine where we just like, say, like, yeah, that's a problem. But we're, I guess we're just this what we're dealing with when there are things we can do about it. Certainly with our, with our voting we can do about it. That's a whole separate issue, right? Most physicians still, even pediatricians aren't voting. So that's a problem. But it's just interesting, right? We spend, like, you know, hours a day deciding Do we go up by 10 or 20 per kilo on feeds do we estimate today or tomorrow when we know that, like, you know, the bulk of infant health is happening outside of the NICU, and that healthy moms make healthy babies. And more importantly, we get repeat families in the unit, right. And so actually, that window of postpartum health, when we talk about preventing premature birth, like that is a place where we can prevent the next you know, preterm birth. So it just seems, it seems obvious like this is a place where we should be spending resources and effort,


Speaker 4 13:36

we actually had a researcher pass it on name, Emily Gregory did some interesting had some research come out recently and start talking, you know, we talked about a lot, it's a postpartum period and the need for access to care in that postpartum period, which it is and you know, not just a fiscal care, but certainly for behavioral health issues that come up in the postpartum period, with, you know, postpartum depression, but also substance use disorder and the need for care in that period, but also thinking about more, as you said, deafness and inter conception care period, and the opportunity then to you know, to prevent, and their findings showed specifically around, you know, access preventive services related to like hypertension, thinking about subsequent pregnancies, and how much you know, improving those outcomes if we properly care, you know, and get help people get access to care in that in a period before the next pregnancy.


Speaker 3 14:24

Yeah, Rebecca also mentioned that Medicaid, you know, health insurance is the ticket is the ticket to the system, right? And when we talk about sort of policy levers, right, extending postpartum coverage and making sure women are insured through all aspects of pregnancy, right, so inter conception care, prenatal care, delivery and postpartum care, you know, really is one of the strongest policy levers that we can provide. And, and the reason I say that is that you know, when we look at just us maternal mortality, right, which is to not to talk about yet at any of the other benefits that Rebecca touched on about, you know, smoking cessation, postpartum depression screening, cardiovascular risk, risk factor stratification, all hypertension treatment, all of the other chronic conditions, right? That we uncovered during pregnancy, and then people lose their care. And we just sort of disconnect them from that care. But if we just focus on on life and death, right, four in five of those maternal deaths are considered preventable, according to the CDC. So if they're going to be preventable, and we need to prevent them, the only way they can be prevented is if people have a ticket to the system, right. That's the step. That's the the initial step. And I think that's why people are, that's why a lot of states are are doing this. That's why states are considering this. And that's why it's such a strong policy lever. When we talk about the health of mothers and babies,


Ben 15:57

I wanted to go back to some of the statistics you mentioned and some of the disparities we brought up in the US specifically and actually chattel, the fact that you mentioned France is a great example, because I think, in France, we do have universal health care coverage. But we're still very much struggling with what we call in French as these medical deserts where basically you are living in an area where having access to a clinic or a physician is actually just difficult meaning if you were to be close to a physician, you could get access for free. But otherwise, the situation is such that you would have to drive to three hours to get to the nearest hospital. And a lot of the of the negative outcomes that we see in France are related to that. Because if you are in Paris, for example, where the density of hospitals and physicians is quite high, then it's not so hard when your blood pressure spikes during the tail end of your pregnancy to actually get checked and so on. But if you are in a rural area, that it becomes much more difficult. And I am wondering if in the US, we are in a position where there are areas that are showing sort of hope, from the standpoint of, well, if we have these certain things in place, we see that the outcomes are better, or is this more of a systemic issue where it I'm thinking, for example, in a place like New York, where there's there's a there's technically a lot of there's a lot of hospitals, and there's a lot of way to get to care compared to areas that are a bit more like deserted from a medical standpoint. Are we seeing something similar? Or is this really a systemic issue that that affects every state equally?


Speaker 4 17:30

I think there are a couple answers to that question. I think it's certainly not. And again, I think it is just important to say that health coverage, again, is that first step to a system. But if the system itself is broken, if it doesn't, as you said, you know, you still don't have access to the care that you need, then you know, you kind of are stuck at that first step. And there definitely is like, just to be clear that definitely, you know, the rural maternal health, there's a rural maternal health crisis in this country, that sort of layers onto all these other issues we're talking about, because there's a closure of maternity care units in rural area. So it's certainly worse there. But then I would say, you know, and maybe issues specific to that rural access question that isn't just obviously about, you know, perinatal health care, but, you know, for all types of health care, but, you know, we even we know, even in cities where there's no shortage of, you know, a number of providers, there's only, you know, there's limits to the number of providers that accept Medicaid patients, for instance, and there are just other, you know, access issues as sort of standards, barriers to people getting the care that they need. So I mean, I think it's, it's multi layered. I mean, just one thing I, that always resonates with me when we talk about the maternal health crisis in this country is that it kind of reflects back on us as a society of like a broken system. So you see, in this crisis, so many systemic problems, you see the problems of racism, you see gender inequities. And so I think it's kind of the amalgamation of all these other, you know, system failures. And it kind of comes to a head in this in this issue. And, you know, some of system failures are more broadly, you know, to the healthcare system. And these, you know, as you said, rural rural access or, or just, you know, limited access in some parts of the country, even if people have the health coverage that


Ben 19:25

they need. And I think that's so important to discuss, because sometimes you could think, well, if we have a prototype that could potentially be exportable to other areas of the country, then maybe that's that's the place to look. But if if there's if that's not the case, then we do need to look at all the different parameters you mentioned. I I wanted to talk a little bit about the postpartum Medicaid coverage that we've been referring to. And for people who are listening both in the US and outside the US, I think it's important for us to understand that right in correct me if I'm wrong. Medicaid will Cover pregnancy related matters during the course of a pregnancy, and postpartum, this coverage will sort of stop at the 60 day mark, which is kind of funny, right? Definitely, because we just reviewed hypertension, disease and pregnancy. And we just said those issues can last for like 12 weeks after delivery, and so


Daphna 20:22

may not diagnosed until that time. Right. So


Ben 20:25

that's right. MC related. And so pregnancy related issues may not even they may not, they may not follow this, this timetable. And so and so right. There's there's a, there's there are changes happening, that are looking to extend this this coverage for pregnant individuals beyond that postpartum 60 day mark to make it for one year postpartum. And can you tell us a little bit more about that?


Speaker 4 20:57

Absolutely, I mean, they're really exciting changes underway, which I know is why we're here talking about this. But it's exciting time on these issues. I mean, a couple just sort of level setting we already mentioned, like the scale of Medicaid as a program in this country, and the amount of births that it covers, I think the important thing, other important thing that's, you know, point to understand for the conversation is Medicaid is an income eligibility program. Right. So you know, and those income eligibility levels are different in different states. That's another kind of core thing to understand about the Medicaid program is that one state's Medicaid program is one state's Medicaid program, it looks entirely different than other states, because states have they administer these programs. And so you see a lot of variation between Medicaid programs, which is important for this conversation, I think we'll get to some of what states have been doing. But then on that eligibility, the thing you know, to your point, Ben, is that the eligibility level for pregnancy services and Medicaid, and for a pregnant person, you basically qualify at a higher level. So you can be earning a bit more money. And during your pregnancy, you then qualify for Medicaid. And then as you said, the as it has been, then then that eligibility level cuts off at 60 days postpartum. So what you would see was a lot of people who then earned slightly above what is the sort of regular Medicaid income eligibility level, which is then lower, would lose their coverage at that 60 days postpartum. And they'd have in this critical period for all the reasons we have been talking about, and we'll talk about, you know, will will suddenly have a gap in their health insurance coverage. I mean, I have two children and 60 days postpartum, I could tell you, I was not capable of thinking of getting new health insurance had I lost it, I thought it wasn't capable of much, you know, it's a really difficult time to boot someone off of their health insurance and then not have access to, you know, the services actually,


Daphna 22:50

especially for parents in the NICU, right. I mean, they're just making it really from one day to the next, you know, and to think about having to sit on the phone for de potential.


Speaker 4 23:01

So then what has happened is a sort of growing recognition that this is, you know, not good policy, that a lot of people were losing health insurance coverage, two months after delivery, and then essentially, less people were coming back on to the program, it's just that they lost coverage. And it's called, it's called insurance churning. You know, and so that's very expensive. It's not, it's not great policy. So we've had this recognition of the importance of, you know, access to keeping that higher income eligibility for Medicaid people peeking people on their sort of pregnancy, Medicaid through a year postpartum. And so we had under the American rescue plan, and 2021, basically, the option was given to states because, again, Medicaid is a state run program, to say, in a much simpler way, you know, to basically do this in a way that was much more accessible for states to opt in, and say, like, yes, we want our Medicaid eligibility for pregnancy to extend to 12 months postpartum. And we've seen, you know, majority of states have now taken that up. And that's just been a really exciting policy change across the country.


Speaker 3 24:10

So just so people understand the income limits, because, you know, we talk about percent of the federal poverty level, and all the time when we talk about income eligibility programs, like Medicaid, which is Rebecca, Rebecca was referring to, but we're talking about $43,000. For a family of four, that's about 140% of the federal poverty levels. So if you are a family of four and you earn $43,000, you're just above the Medicaid threshold for a lot of states. So you're uninsured unless you buy health insurance. either. You get it through your employer or you get it from one of the ACA market, the Affordable Care Act market plan and plans are someplace else. So there's a good chance that you're going to be uninsured because even with the affordability things, the affordability protections that are built in it just might be simply too expensive. Then you get pregnant And now that income eligibility goes up. So now you're insured. And I'm speaking about this sort of very longitudinally, just because that's kind of, I think the way neonatologist think in terms of like, what was going on during a pregnancy, right. So now suddenly, the income eligibility threshold for your state might be 200, or even 300% of the federal poverty level. So now your Medicaid eligible, and your Medicaid eligible from the time you know that you're pregnant until you deliver. Right. And you guys know, this, Ben and Daphna and and most of the neonatologist, it's kind of a no brainer for a lot of mothers who are otherwise young and healthy. Pregnancy is the first time they really get good, solid, not just prenatal care, but good solid health care in general, right, they get screened for diabetes, they get screened for hyperlipidemia, they get screened for high blood pressure, they get screened for thyroid disease, right? Then they deliver and this is the churn that Rebecca was referring to. And 60 days later, they go back, you know, they're no longer eligible for that elevated income threshold for that covered them during the pregnancy. And, and this is the part that I still have to wrap my head around every once in a while, right? We spent all this time effort and money to diagnose these problems, these chronic medical conditions, we know that those chronic medical conditions respond to treatment, and then we disconnect them from their ticket to access healthcare, two months after they've delivered. And I think that's what Rebecca is alluding to, which is that if you give people the year, you really have the opportunity to one potentially save some money because you're not spending the money, dis unrolling them and then re enrolling them and re verifying everything. But you also have the opportunity to save money in the long term by providing chronic treatment for these conditions that you uncovered during the pregnancy. And I think that's why states for the most part, are making this something that they want it to add to their sort of umbrella of coverage. You're saying


Daphna 27:14

we're not doing it because it's a nice thing to do. They're doing it because they can also save money.


Speaker 3 27:20

Right. But at the same time, it's that's that's the argument that's preventative and ecologist. Right. Right. But that's the argument that we as neonatologist need to be making right, obstetricians, neonatologists are really within the sort of universe of medicine, the most ideal people to speak to policymakers and to legislators about the importance of making sure that this postpartum coverage is there, not just for mothers, but also as we can talk about right all the spillover health benefits to the babies, much of which has been elucidated and discovered through research from the Policy Lab. If I'm sounding a little bit like Rebecca, it's because most of what I did to prepare for this was read all the stuff she wrote.


Speaker 4 28:02

Well, I want to, I mean, I think the other thing it does is align that 12, that 12 month, you know, allowing people giving birth 12 months of continuous coverage, following that birth, it also aligns their Medicaid eligibility and re enrollment process with that of their infant. And so then you have in that 12 month following birth, you have a, you know, Parent Infant pair on Medicaid, which we you know, for those of us, you know, we'd like to think about things like dyadic, care models, intergenerational health services, those things those they have to be paid for. And you just have a lot more options. When you have this parent and child both in the state Medicaid program, there are a lot of really exciting things states are doing to then take off flexibilities of, you know, brief interventions that serve the parents in the pediatric setting, for instance. So it really allows a lot of that opportunity as well by you know, keeping keeping that approving person on on Medicaid in that year postpartum.


Ben 29:03

And so the the state plan amendment that we've been referring to which basically, and correct me if I'm wrong, I am very illiterate when it comes to that. But federally, there's it creates an opportunity for each state to take this on and say, Hey, we would like to extend coverage past 60 Days to a year will become effective.


Speaker 4 29:23

Yeah, so the federal requirement has always been that states have to cover pregnancy, you know, the pregnant, a pregnant person, 60 days postpartum, and then it cuts off. And before the American rescue plan, act and 2021 states were able to go to the federal government and try to request an extension of that it was just a much more complicated process. It was through a Medicaid waiver. These are big, complicated things. And so what the American rescue plan Act did was say, Well, we're making it much easier for states to take up an option and extend Medicaid to 12 months postpartum by something called a Medicaid state plan and amendment and every state has a Medicaid State Plan, and it's just a simpler process to amend it to change it, and basically take up that option. And so we've seen, obviously that, you know, we've seen a lot of action and states, we're ready to take this up. You know, it's, it's moving quickly. So I don't want to date ourselves in this podcast. But uh, right now, about 35 states have either taken off that option or are, you know, in the process of getting there amendment approved by the federal government. So it's been exciting. And I think another important point was this, when this was first initially changed by the federal government, it was basically at a five year sunset, like it was going to end, after five years that states had this option. And so we saw some additional exciting, you know, moves from Congress on this at the end of last year in the omnibus spending package that they basically made this option for states permanent, what we would love to see have seen is that they made it mandatory, like this wasn't a state option. But that, you know, all states were required to accept, this just became part of the federal guidance for the Medicaid program. That's not what we saw, unfortunately. So I mean, we do know that the states that haven't moved on this are predominantly more conservative. A number of them are states that haven't taken up the Medicaid expansion afforded to them under the Affordable Care Act, and so have lower income eligibility for Medicaid overall. So, you know, it would be great if this was, if this was mandatory for states, and we saw it across the country, but at least now, it has this permanent nature, rather than, you know, we were, we were worried is gonna disappear after 500 As a research center, we were ready to hit the ground running and show how important it was. And now


Ben 31:49

I'm curious to pull the room about this, because I read about this. And I was a bit ambivalent, because I was thinking, well, on the one hand, if it did have an expiration date, then then sort of, we have a deadline. And we can, we can channel our efforts. But now that the deadline of basically states, what you were describing was that states had five years to make this change happen. But now without the with the extending this permanently, then I'm thinking, well, could people just drag their feet and definitely could and then could people lose? lose momentum? I'm just curious how you guys feel about Is this good or bad


Daphna 32:23

with the with the voting cycle, right? So you may get somebody else in office who may be willing to accept the funding, right? I think Ben is right now, but may may in the


Speaker 3 32:34

future. It's a blessing and a curse. So I can speak because I was involved with New York's decision to extend to extend postpartum Medicaid coverage, which I actually was surprised we didn't have until the American rescue plan really made it an option. That deadline certainly creates a sense of urgency to act, which I think is what a lot of the states that were inclined to do this. inclined in terms of, you know, philosophically inclined to do this, but still had a little hesitancy about the potential price tag, the deadline really lit a fire under them and said, we have to do this now. Because we might not have another opportunity. And we'll figure out the pay fors a little bit later. The other states that weren't so philosophically inclined to act, I think it does give them a little bit of time to drag their feet. So that that brings up two options, right. One is that it creates an enduring advocacy opportunity for pediatricians, neonatologists and obstetricians, right, this is the type of thing that they can go to their state houses now, every single year until it gets past. The other thing is that when the American rescue plan, and then the the FY 23 omnibus plan that Rebecca has that Rebecca noted, past, they didn't just say you can make it easier through the state plan amendment. They also said, if you're going to do it, the amount of extra money you're going to spend to do it can be split with the federal government based on whatever the matching rate that that state happens to have for their Medicaid program. So in New York, for example, we have a 5050 match. So every dollar that we put in as a state, the federal government puts in as well. So if it's going to cost you X amount of dollars, to increase that postpartum coverage, the state in New York is only spending half of that total amount, because the federal government is putting in the other half. That was something that was never done before, in terms of incentivizing states to do this. When states wanted to do this earlier, because they thought it was the right thing to do. They had to fill out their Medicaid waiver to so this so the federal government can say yeah, this is great, but then they were still bearing the costs of doing that. It wasn't split at this cost share with the federal government. So it's You know what I what I tell people who are sometimes going to their legislators in different states, and that are just kind of preparing for these meetings, you know, what should I say? What should I say I go, you should hammer home three points, right? It's we've never had more knowledge about how powerful this is in terms of protecting mothers and babies. And we've never had a time where providing so much coverage to benefit, mothers and babies will be this cost effective. So there are lots of states that are watching their bottom lines, there are lots of states that have amendments that mean their state budgets have to be balanced. So if they're going to be spending this money, they have to find cuts or revenue someplace else. So your job isn't to be the accountant for the state. But you you can mention that it's never going to get better than this in terms of the financial environment to pay for this extra coverage.


Ben 35:53

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Daphna 36:11

In the states that have done the expanded coverage, or are doing the expanded coverage, and I'm sure this is happening, but data on outcomes changing, is that available, something that we can take with us when we go to speak about the benefits?


Speaker 4 36:32

Yeah, I mean, I can speak from the perspective. So I said in Pennsylvania, Pennsylvania, has also taken out, you know, has also submitted a C plan amendment has taken up the Medicaid postpartum extension, which we're thrilled about. And you know, that's you're really a credit to state leadership on this issue. And there's a lot of discussion with with the policymakers about how to look at the impact of this, how to ensure you know, that we're, we're evaluating it, I think that it does the pressures a little bit off on after this five, this five year window sunset that we've spoken about disappears, it really felt like and researchers know it takes a while to get data takes a while to do the research. So suddenly, five years was not very long to be able to at the end of it really wanted to be able to defend this policy, and show its important impact. But I think there are a lot of lines. I know, I mean, I can only speak to what's happening in Pennsylvania, that there's there are a lot of discussions between the state government and the research community about, you know, how to do exactly what you're saying, definitely, to really look at the impact, there's a lot of also really great national work happening that will look across states, and I'm sure compare the states that do take up this extension versus those that don't, unfortunately, state Medicaid data is sometimes very hard to access, very delayed to get access to and, you know, varies a lot by state. So it's very different than working with like Medicare data, which serves the elderly population, for those less familiar. And you know, that that's a big national dataset. And state Medicaid data is by its nature, you know, very messy and very variable. And so I'm hoping that we get some great, and again, great researchers in this space nationally, who are looking to compare across states and see what we can make up the impact. I mean, these things take a while to show as well, as we all know, I mean, I think, and things have been complicated in this extension of it coming out during, you know, the COVID-19 public health emergency. And so, you know, thinking of, you know, how we evaluate what the baseline of this looks like, sort of with when this policy started, I think will be complicated questions to answer. And I think it will take some time to really show this impact my hope we give it its time, you know, give it its time to really show what it can do for maternal and infant health outcomes. But that will take some time to evaluate.


Speaker 3 38:57

Yep. That said, though, there are some, you know, there are, as Rebecca alluded to, there are some states that decided to do this, on their own, even before the American rescue plan made this, you know, provided the first time limited window to do that. And we know, do know that, at least from states that have studied the data themselves, and once they made this option available, that health outcomes have gotten better for a lot of the things that neonatologists pediatricians and obstetricians, you know, care about. So there was a study that looked at Medicaid data files from 2006 to 2017. That saw that providing this postpartum extension of coverage reduced maternal mortality by seven per 100,000. So, I mean, obviously, there are variations and we talked about the racial and ethnic variations, but if we're just looking at we're walking into this was the 17 per 100,000 rates, we still would be last but we'd only be three per 100,000. Behind France at that point. When you look at outcomes for things like postpartum depression, right If you look at how many mothers get treatment for postpartum depression, right, it's about 50% of uninsured, women will get at least some health care encounter that doesn't really have to be. Doesn't have to be mental health services. But it could be even primary care services where the focus of the visit was mental health, that number jumps up to two thirds, when they were insured by Medicaid. Now, it should be 100%. And there are other issues to talk about related to access and mental health providers taking Medicaid. But that's certainly a benefit compared to what the baseline rate is, if they were uninsured, right. And they had their coverage terminated, or their insurance coverage lost after the after that two month period, which is the way it is in, in a lot of states. And then there's also some data to say that if you smoke, and you wind up having an extended period of postpartum coverage, about 10% of those women report receiving more cessation services, you know, help with quitting smoking, which is great for the moms. But as you know, as we all know, right? When we talk about the benefit to babies, whether those are otherwise full term healthy babies, but especially the premature babies, right? You know, there's obviously the risk to the mother and pregnancies of preterm birth, low birth weight, small for gestational age, but the baby themselves, right, RSV, ear infections, multiple other worse health outcomes that are associated with growing up and developing in a household where someone smokes. So while we always are going to need more data, because these are states that by definition are different, right? Because they automatically decided to do this. What we do know, is been positive. And I think that's really important for people to walk away from this podcast hearing, because there are some times where we think things are good ideas, and we don't necessarily feel like we have strong data, but we have strong data from states that have done this, you know, as early as the early 2000s, or mid tooth. And those outcomes have been beneficial to both mother and baby. Yeah,


Speaker 4 42:07

that's yeah, into shuttles point. I mean, we know that continuous, like continuous enrollment, as it's called, or continuous coverage is so hugely important, there's a whole body of literature around that, and how gaps in coverage which this, you know, this policy change should get at are detrimental to access to health care services, access preventive services, in particular. So I mean, I mean, I know, we all I think, you know, as we've talked about several times, like we have these awful maternal mortality statistics. And hopefully, this is, you know, a step in that, you know, in addressing that crisis. But even more broadly, a shadow was talking about, I think this broader, you know, broader issues of maternal morbidity and other issues that come up in that postpartum period. And I'm I'm, you know, positive, we'll be seeing some really good, you know, looks at the impact related to everything you know, about behavior, access behavioral health services, including substance use disorder treatment, and that postpartum period, which you know, is a major driver to actually, you know, postpartum deaths is the is overdoses in that period. So, I think it's just really exciting from all these different, you know, care utilization and what that might mean for outcomes that we'll be able to see.


Daphna 43:18

Yeah, I think as a neonatologist, I think that's plenty of data, right? I mean, when we when we all are, our parents in the NICU are at greater risk of all of those things, right than the general population of postpartum people. And when we talk about long term outcomes for our neonates, right that we just are pouring resources into during the NICU admission. And when we know that parental mental health impacts their long term neurodevelopmental outcome more than sway a lot of the things we do in the NICU, it seems like you're right, that will perfectly poised to be ones to advocate for, for the need in our states. So we're Where do people go to find out the status of their state? And who do they need to talk to about it?


Speaker 4 44:14

For folks who want to know where their state is, after the Kaiser Family Foundation runs, tracker, and you can just Google it for Kaiser Family Foundation postpartum Medicaid, and it does a great job of you know, it's up to date and will tell you exactly where your state is on having taken up either state plan amendment option or pursuing this through other means and whether that's been approved. So definitely, definitely look there.


Daphna 44:38

And, you know, our is our local or state AP chapter. The right way to do that are our AP section on neonatal perinatal medicine. Divisions. Are we doing that anything as a group so maybe somebody who's feeling like yeah, I want to help but I want to go with The buddy to do this.


Speaker 3 45:02

Sure, there are a lot of people who want to help but just don't know how right. And I think the way to do that is to go to your state AP chapter. And then ask them what they're doing on this issue. Because there are a lot of things in different states that kids need. And sometimes, postpartum Medicaid coverage for mothers isn't necessarily number one on that list, not that it's something they don't care about. It's just their limited resources. And there, there's potentially lower hanging fruit. And there's a lot of things that need to be done for children. So I would start there. And if it's not on their radar, try and get it on their radar. And the other thing that we found really successful, at least here in New York, in terms of putting a coalition together, is the, you know, our ACOG colleagues are all over this as you might, as you might imagine, and many, many ACOG chapters already whether they come from their national American College of Obstetricians and Gynecologists, or, or their resources that they themselves have created, have a lot of state specific resources. And I have yet as a neonatologist, well that's not true. There have been times but most of the time when I walk in as a neonatologist, and I want to talk about a maternal health related outcome. And I also can lend the voice of the baby, most ACOG people will welcome you with open arms. And if it's not, you know, priority a number one on your state APS advocacy agenda, that's okay. But it might be the time for you to consider working with ACOG. And saying, you know, what, I understand that we've got other things going on. But this is the number one priority for me as an advocate. And I'm going to potentially work with ACOG closely on on this issue. And I'll obviously let you guys you know, let the AP chapter know what, what can be done. Because the ACOG people, like I said, are I don't want to say they're ahead of us, but they've just they've been paying attention to this issue for, you know, decades. So they have a bit of a head start.


Speaker 4 47:11

There has been a really exciting coalition around this issue in Pennsylvania. So again, I'm just speaking from that perspective, but I think it's probably true in other states as well. And it's been a really great opportunity, I think, to talk about, you know, we've been working closely with you, we're obviously part of Children's Hospital Philadelphia, where pediatric focus, we're thinking about that, in that dyadic, sort of intergenerational health piece, and the how, you know, mother's health is baby's health. But you know, it's been a great opportunity to work with the maternal, maternal health advocates, and, and lots of advocates in this space and continuing to bring that pediatric piece forward. And I think it's been really welcome. You know, I think as chattel said, ACOG, and other folks who've been thinking more about this as maternal health issue have kind of being a drum for years. And then with the growing opportunities here, I think it's just a great opportunity for coalition's that bring in lots of different perspectives, including the important benefit of a policy change like this for infants and children, and for, you know, thinking of families that have family centered care, and the importance of keeping the whole family on on continue, you know, and continuously on health insurance coverage.


Daphna 48:21

And if we wanted to speak to our legislators directly, and any tips about doing that.


Speaker 4 48:30

We have we have worked with legislators on this issue. I want to go back, we had a discussion briefly earlier about the cost of this, that was a bit you know, that's always a big part of the conversation on any state policy change federal mentioned, and I just always thinks, and I'm a policy person, so I'm wonky, to say that states have to balance their budgets, and it's a little bit different for folks who maybe hear about, you know, our federal budget and our debt ceiling, and all this states have to balance their budget. So, you know, a lot of the question here was, you know, how much this would cost? If there have been these federal incentives a shuttle mentioned. So there's this matching with the federal government. So, you know, generally coverage expansions when they come down from the federal government, like that are a good deal for state governments, because they are sort of otherwise leaving money on the table, if they don't take it up. But you know, legislators have been interested in the cost, we actually did a cost estimator tool, as Policy Lab, which I think, you know, especially a specific moment in this conversation a while ago was very helpful, and it helped us think about, you know, where, where this policy change offered savings, I'll just caution it certainly does offer saving certainly, things like the the insurance churning that we talked about is administratively expensive for state Medicaid agencies. So there's a savings there and not having that churn and just keeping people on keeping people on the program rather than having them come on and off. Some of the other savings that we know were there and I think we can talk through and you know, conceptually, we know there are long term savings, they're a little bit harder to estimate. So I just want want to make that point, I just want people to be aware of that. We know they're there. But they're also pretty long term. That's not how state budget cycles work. And so it's hard to really make the case that they will sort of accrue in the budget window at which they have to kind of do their estimate and show that they can balance their books. So that that's a hard piece of this conversation, that you know, that there certainly are some savings and generally some very good financial a very good deal for states and not that expensive for a lot of gain. But some of those real savings can be hard to, to pinpoint. But definitely your point, I think, in speaking to legislators, you know, I think shadow mentioned some of this, that this is really a good deal for the states, you know, really, I think making that case, and not only is that the right thing to do, you know, and most even at the state level states are becoming much more aware of their very, you know, their state specific maternal mortality statistics. So there are a growing number of what's called maternal mortality review committees, Pennsylvania, has one and so you know, those, those data are stark, and they have, you know, made ways in states. So I think there will be an awareness there of the scale of the issue. And I think certainly speaking to legislators, you're going to want to put it in to the context of those those statistics in your own state. But I think also that, again, not only is the right thing to do, we know it's going to have positive outcomes, but also it's a good deal financially, for states with this recent federal flexibilities have been put in place.


Speaker 3 51:37

That's kind of the one. The one thing I would say definitely. And Ben, and we've talked a little bit about this in other episodes, and Rebecca is obviously a policy, person neonatologists tend to be more interested in in data and in outcomes, because that's who we are. And not only that, not only is that who we are, but it's also how we were raised, right? When you go through fellowship, and you go through residency and your career. But we also need to deprogram ourselves a little. And I actually find this the hardest part of doing any sort of advocacy work personally, is marrying the data with stories. Because when you meet with a legislator, the data will be on that one page leave behind summary sheet that you give them. And yes, you want to talk about it. But you really want to remind them who you are and where you come from. And every neonatologist. I mean, you guys know this, right? If if we're if we're in a national meeting, every neonatologist knows what it's like, when the baby survives, and the mother does not. Every neonatologist knows that for the rest of the time, that baby's in the unit. He's the kid whose mother passed away, we've all had to go into rooms, and tell families with the obstetrician, that the baby is stable, but the mother has passed away. And we've all seen grandmother's cry, because they suddenly have lost their daughters. And we've seen husbands cry, because they're simultaneously overjoyed that they have a new son or daughter, but are incredibly fearful about the fact that they're now going to be raising that child alone. No one else bears have witness to that type of tragedy, more than obstetricians and neonatologists. And we need to make sure that people understand what that situation is like, and make the policymakers realize that this is what we're experiencing, we want you to experience it for a little while. And we want you to be able to prevent it. And your vote or your support for this type of proposal is what can move us into a better place when it comes to the issues of maternal deaths. And you can also obviously talk about the postpartum depression and the smoking cessation and an increased access to contraception services and better inter conceptional birth spacing and all of the other downstream effects. Right. But one of the things that when I was talking to legislators about is I want them to feel what it's like when we go into that room. Because we all we you know, we we meeting the neonatologist or are not happy but you know, like our baby stable. So we're like, in a better place than usually the the drama that precedes all of this. But then we have to be there when the obstetrician tells them that the mother has passed away, and they do not have that experience. And all of us have at one point in our careers.


Ben 54:42

It's interesting, we're talking about this and getting close to the end of the of the show. I mean, I always enjoy having on the podcast physicians but also people who are not providers. And I wanted to ask you Rebecca, what was the driving force leading, leading you into With his work on advocacy policy, because it feels like a very frustrating endeavor, I'm sorry. But I'm just curious as to as to how you got into this space and what motivates you everyday to to take on the challenge.


Speaker 4 55:17

Yeah, it can be really hard work. And it's slow work. You know, I think right now, what's so exciting in this moment, and what we're here talking about is we've had this kind of a breakthrough, you know, it's not new, that people are talking about all the benefits of this policy that we're talking about today, people have been talking about it for years, and you get these moments and we call policy windows. And that is you sort of break through and all the forces come together of the political will and, you know, people, the people hearing the data points and people getting the right stories out there to everything we're talking about, if people really understand, you know, why we need to make important policy changes, but it's, it can be slow. And you know, I think there, you have to sort of, generally it's more about incremental wins. And I mean, and even this is an incremental witness, as huge and groundbreaking as it is, is it's not going to solve our maternal mortality or morbidity crisis. It's one piece of the puzzle. And I hope we continue to, like push on other levers. And I know, you know, US and other folks in this space, we'll continue to talk about all the other things we need to do to support birthing people in their children. But you know, I'm in this work. I find, I mean, I do I find it hugely important. I'm driven by that. I find it. I'm your policy wonks, I think we work in a certain way. We'd like the strategy of it, we, you know, there's this sort of politics and policy and where they meet up, and that's when usually get changed. So my background is I have works are directly in in politics and more directly in state politics. I've also worked in advocacy, and policy for a number of years on sort of specific background in sexual and reproductive health. I've also worked on substance use disorder, thought about health care financing, and these kinds of questions we're talking about today a lot and related even in a worked globally serving global health issues related to universal health coverage and, and health care financing. So I think it it's it's exciting work, but especially when you get you know, sort of these these winds, and then we can look to see like now now, what do we do now? How do we make sure that the implementation of this policy change is successful? How do we make sure it's evaluated, and we're really looking at its impact? I mean, because that's what's important. That's what's important here. And that's what will make this you know, a moment that people look back on, when we talk about, you know, groundbreaking policy changes in a way we can not look back at the Affordable Care Act and see everything that a change in this country. I wanted to if I can go back for a moment to say, just say, I think, I think neonatologist have a huge, hugely important role in bringing forward their stories. And we were talking earlier about talking to policymakers, so definitely with policymakers, whether it's legislators or other types of policymakers, you know, I think you neonatologist spend so much more time with families and a lot of other providers. And so I think that's incredibly important for that sort of really being able to bring forward the stories of a family's experience and, you know, not just kind of in their darkest moments, potentially, in any of the hard news that you all have to break. But in that period, where families are in the NICU for a long time after delivery. And I'm sure you see the parents that are there and kind of not taking care of themselves at all, because they're so focused on being in the NICU and being with that infant that needs them. And I think that's what we're talking about here today is how to think about in serving the caregiver, how we serve the whole family. So I think they're more broadly, you know, broader than this specific policy change we've been talking about today, there's kind of this and it's something we think about at Policy Lab and are kind of growing our work around or thinking about like a caregiver agenda, it's actually something that Biden administration has talked about a lot. And so thinking about, you know, this health care coverage for the caregiver is certainly one piece of it, but also all the other ways like paid leave policy, you know, supportive childcare, all those ways that we think about how we support caregivers, and both these, you know, parents and informal caregivers, and also sort of, you know, the paid care workforce, and in that way, you know, look to that improve infant and child outcomes. I think we said a couple times, there's all the incredible clinical work you all do in the NICU, but that can only take you so far if we're not thinking more broadly about the health of the family and how the how the parents or caregivers are in good health to you know, to then engage with their family, with their infants and another children for their sort of optimal development through that really those really important interactions. And so I think that's kind of how I think about all of this and I think even at ologists you just have such an important role with the access they have to families that you know, what they see and family Isn't that extended time that some of them are in the NICU?


Ben 1:00:02

Yeah, I mean, this is because I was scouring your Twitter profile and the recent things you posted. I think there was one quote that really resonated with me and what you just said that family caregivers are the backbone of our society, but have long been neglected in terms of supportive public policy. And I think I, I think, for me as a neonatologist, and I think all of us here could not agree with that statement. More sorry, zafra. You weren't, you weren't gonna say?


Daphna 1:00:27

No, I was gonna say basically the same thing. And you know, we, there's something else that develops over NICU admission, and that's really trust, right, our families trust that we are setting them up as well as we can. And I mean, this is one way we can do that. And it's another way where we can advocate for these parents to go get checked out, go do the follow up appointments, you know, because we know that their health, the health of the infant is, relies on the health of the parents. Awesome.


Unknown Speaker 1:01:04

Absolutely. Yeah. Shut up a broader, oh, I


Ben 1:01:07

was just gonna say it's probably gonna have some concluding thoughts. So that's why I'm including,


Speaker 3 1:01:11

all right, there you go. No, it's It's just part of a larger conversation of of us as a subspecialty, realizing that the care the difference between the care we really want to give, which is to make the baby as healthy as possible for the rest of their lives. All right. The care that we actually provide, which is often within the four walls of of our NICUs, right, that the only way we're going to get from the four walls of the NICU to the optimal care we want to provide really requires paying attention to a lot of things that occur outside the four walls of the NICU, right, we need to start paying a lot of attention to social determinants of health to policies that influence social determinants of health, and take a more active role in shaping those policies, if we want our kids to do as well as we want them to do. You know, we always say, you know, you know, the goal of neonatology right is protect the brain, right? Preserve the brain. And it makes no sense for us to do everything we can to do to save that brain, only to release them into a world where policies are going to conspire to not let that child achieve their full potential. So that's great. And I think that's why we're all in this right. I mean, that's why Ben decided to, you know, to go into neonatal fellowship, that's why Daphna that's why every neonatologist, you know, I read hundreds of, of application essays, right. And none of them are like, I want to, I want to go into neonatology. So I can spend more time on the electronic medical record, right? They all say they want to do everything that they can to help babies, right. So


Ben 1:02:48

and it's a logical it's a logical progression of of, of helping one family at a time to saying how can I compound this effect, to potentially have a broader impact on a larger segment of the population? So yeah, I cannot agree with you more. Well, you


Speaker 4 1:03:04

all I mean, you all do amazing work. And there's amazing work that happens in the NICU. But I completely agree with shuttle's point that, you know, there's so much that affects the family's health, as we all know, that happens outside, outside of the walls of a hospital that happens in their home or, you know, even just meeting their most basic needs. I mentioned a few families that, you know, don't have enough to eat and you know, they have other children at home and all those things. And so, yeah, again, I mean, anything again, what we're talking about today, I think, is a piece of this puzzle for sure to ensure that that person has just given birth, you know, that they're getting their own care, and getting what they need to hopefully have better improved health to serve both themselves and their current children and any future pregnancies that they would have.


Ben 1:03:50

Shadow Rebecca, thank you so very much for making the time this morning to talk to us. It's been really a great discussion and very enlightening. We are going to put your information on the episode page for anybody who needs to who would like to reach out to you guys and ask questions, or maybe even potentially collaborate. Thank you very much. Daphna. It's been a pleasure. Thank you, everybody.


Daphna 1:04:14

Thanks, everybody.


Unknown Speaker 1:04:16

Thanks so much for having us. Thank you.


Ben 1:04:19

Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcast, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you so feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot v dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medic advice. If you have any medical concerns, please see your primary care professional. Thank you


Transcribed by https://otter.ai




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Here are some of the papers mentioned by Allison and Emily on the show:

Rose-US-state-policies-for-Medicaid-coverage-of-donor-human-milk-2022-Journal-of-Perinatol
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You can reach out to Allison Rose and Emily Miller by clicking here.


The transcript of today's episode can be found below 👇

Ben 0:54

Hello, everybody. Welcome back to the incubator podcast. We are back with one more episode in our mini series on advocacy. Definitely. How are you? Oh, boy, so I won't, I won't be wasting any more time then. We are very excited to have on with us. Dr. Emily Miller and Dr. Alison rose. I'm going to read your bio guys in alphabetical order. There's no preference. I'm just going to So Emily Miller is a neonatologist at Cincinnati Children's Hospital. She's an Assistant Professor of Pediatrics at the University of Cincinnati. She is a current health policy Scholar through the academic Pediatric Association and directs the perinatal equity team as lead Health Policy and Advocacy faculty for the Cincinnati Children's perinatal Institute. She is dedicated to eliminating racial disparities in infant and maternal health through research and evidence based healthcare policy including the equitable provision of donor human milk to high risk infants. She is a mom of four and I never know how to pronounce Twilley Trisha, I know this was supposed to be the pediatrics hashtag I never can, but she's very active on Twitter and hashtag new Twitter at Emily Miller MD. We will link her social media profile in in the show notes. We also have the pleasure of having on with us Dr. Allison rose, who's a native of Atlanta, Georgia who received her medical education and subsequent training in pediatrics and neonatal perinatal medicine at Emory University. She is an assistant professor of pediatrics and practicing neonatologist with Emory University and Children's Healthcare of Atlanta. She is an assistant Medical Director of the green Memorial Hospital neonatal intensive care unit are academic and advocacy interests include the care of infants with necrotizing enterocolitis, donor human milk, infant mortality and health disparities. Dr. Rose is a member of the Georgia Chapter of the American Academy of Pediatrics, legislative and breastfeeding committees to advocate for the health of Georgia's children. Alison, Emily, thank you so much for being on the show with us today.


Unknown Speaker 2:49

Yeah, it's a pleasure to be here. Thanks


Unknown Speaker 2:50

for having us.


Ben 2:51

Definitely. You were so excited. Go


Speaker 1 2:52

ahead. Well, I think it's tweet attrition, right? It's just Yeah, but it's, you know, yeah, to practice,


Ben 2:58

pediatrician find find.


Daphna 3:02

But we definitely have on I think, the right, the right team to help inform us. But before we really dive into donor milk, which is why we have you guys on today, obviously, your bios, indicate this both passion and expertise in kind of the legislative process. So we always like to know how people got involved. You know, people want to get more involved in this, you know, not just advocacy, but truly the legislative process. Like where's a good place to start?


Speaker 3 3:37

So I, I can take that one first. So, you know, everybody's journey looks completely different, right? There is not a stock answer to this question. And I think that's why we sometimes like, struggle to distill it down into into a brief answer. Because I got into legislative advocacy through this very winding pathway. It was not a straight like, A to B journey. And I joke that the reason I got into legislative advocacy is because I just have a lot of opinions and I want to share those opinions.


Daphna 4:13

I love that somebody should listen to me, my


Speaker 3 4:16

my, my colleagues and my my kids and my husband will back me up on that. But But honestly, I mean, as pediatricians you are already the expert, as a neonatologist, you are ready the medical expert. And I think maybe the bigger thing is about how do you get connected to the folks that are in the positions of power or making decisions or pulling the levers whether it is at your local level and your division, your institution or state, national you want to go big? Because a lot of the work is in educating people and as a pediatrician like that's what We do every day, right? Whether you're a community pediatrician and you're educating parents, you're a neonatologist, you're educating parents, we're educating trainees. And so I think it's learning the landscape of where you are, and what are the barriers that your families are facing? And how can you then take that patient and family experience plus your medical expertise and get those stories out into the spheres of influence? Yeah.


Speaker 4 5:30

And so Emily and I have done several projects together. And we've learned a lot about each other. And in fact, that were quite different. In many ways. She's a night person, I'm a morning person. So we would like pass off papers should send it to me at midnight, I'd start editing at six. And we would go that way. And and we're probably a little bit different in how we approach or sort of how we found our way into advocacy. And like, where we find our comfort zones do as well. I mean, Emily does such an amazing job on social media. And I'm, it's not my strength, I find that I tend to be a more introvert, kind of behind the scenes person. And I think there is still a role for that, and advocacy, as well. So I, I got into advocacy for a lot of the same educational reasons that Emily was talking about, was able to attend, just observe the legislative session in Georgia and just saw how much room for medical education there was in the policies that were being passed. The Georgia like probably many states, our legislators are part time legislators, that means they have regular jobs that they do most of the year. And then they come to Atlanta, the Capitol, and they spend a total of, it's a couple months, but it ultimately is like 40 legislative days. And so while they are trying to maintain whatever their home business may be, they are also working to, you know, create laws and policies that work work here. So they can't be experts on on everything. And that was is pretty apparent. And so I got into this just sort of seeing that and recognizing there's a place for that education. And I have accessed it through the Georgia American Chapter of the American Academy of Pediatrics. So they do a lot of the interfacing with our legislature in in we have a legislative committee of pediatricians that helps to sort of inform inform that works. I think there's, there's tremendous role in advocacy for people of all different passions and approaches to work in sort of approaches to how they want to do this. You don't, you don't have to be frontline, necessarily. There's a lot of work to do behind the scenes to


Ben 7:45

definitely what you have a follow up question, okay. Or?


Unknown Speaker 7:48

No, you can dive in. Okay, so


Ben 7:49

then my, my question that my follow up question with that would have would be that? How do you take on this mentor and feel like, you can make a difference, especially as you are being exposed to this as a training, right? I mean, these are, these are big problems. And sometimes you your, your inner self can say, well just just focus on on on winning the vent, maybe. And then so how, what kind of,


Daphna 8:15

and not just a trainee, right. Like I think there are some people who may have been doing this their entire careers and say, like, I gotta I gotta do something more about the, the predicaments. I see my family's in.


Speaker 3 8:30

Yeah, I mean, I think that's something we all share, like, we are all extremely passionate about something. And I think that you can apply a lot of the concepts and techniques that we use in what we consider traditional research, or traditional academic work or clinical work to advocacy. You build a coalition of like minded individuals, folks who share the same passion as you do. You have to seek out collaborators and funders and resources and put your work out into different venues, publicize your work. And advocacy is a marathon. It is not a sprint. But we can say the same thing about preventing premature birth. Right? Tackling BPD like these are long term, these are not quick fixes. And so the ways in which you find inspiration and motivation for those things applies to advocacy too. And knowing that it's sometimes you're having an off day, sometimes you're focusing on your clinical service week, right? And then there are going to be times where you have more bandwidth to do advocacy. And so having a coalition, like Allison was saying Were we ping pong back and forth, right? Like, how many times have we traded a text where it's like, I do not have the time to work on this right now. So you have to take the lead. And being able to pass the baton back and forth is is really key to keeping it going.


Speaker 4 10:16

As I say, I think advocacy is also interesting and takes a little bit of getting used to because it's kind of like, I don't know if this analogy is going to make sense at all, but because I just thought of it. But it's kind of like taking a randomized controlled trial, where you have the perfect environment, the perfect compliance, the perfect dosing, the perfect blinding, and then you move it into a real world application, where it's not quite so perfect. And working on advocacy can kind of is that real world on some level application where you feel like I mean, you from the medical perspective, feel like you have the evidence, you know, the data, you have the stories, but you're applying that in a political environment that may not align with your goals and objectives in that moment. And there's nothing that you can do, you can't tell your story any better. And you can't give the data anymore. You are, you know, you have to work within this established political framework. And that can definitely cause that kind of overwhelming feeling, Daphne, that you were saying, like, how do you even begin to tackle this, because it's not all in your control the ventilator knobs, you cannot turn on your own, you know, in and that can make it a challenge, but also super rewarding, and a way to see what we're doing and the unit move outside of that, and recognize the impact that you can have on on a broader group of ABS.


Speaker 3 11:58

And ultimately, you know, changing lives, saving lives, improving the patient and family experience, but also making it possible for you to be able to do your job easier and better, because you have the resources that you need. And so I think that's a piece that sometimes we lose sight of that can also help kind of bring it back to the hyperlocal sphere of how can I serve this one baby this one day in the best way possible? If I have these tools at my disposal? And how do I improve my ability to have those or access those? I do have one question,


Daphna 12:38

specifically as it relates to trainees, right, and this documentation of scholarly work. And so this is I mean, this is critical work this is will change outcomes for the babies, we care for the this type of advocacy and legislative work. So how do we convince the powers that be? This is, you know this, there are ways to measure this and and consider it part of your scholarly portfolio, especially for our fellows who are interested, I feel like so many people have this interest, but then they don't get to follow it because nobody's figured out how to have it listed as scholarly work when it is the work, right.


Speaker 4 13:25

Yeah, I think that's a great question. And I actually wonder if the answer for trainees may even be more complex than the answer for faculty. Because I think for faculty, we have a longer horizon, like as we are all part at academic institutions, and we are trying to also build our own sort of an advocacy portfolio in advance that perhaps we have a little bit more flexibility and that we have this sort of timeline in horizon and we can list all of these individual things. Our trainees are required to have a scholarly like a specific scholarly output as sort of a one a one thing that has historically been research based and statistical methods based and as in as, you know, as going to have different requirements than what many advocacy projects might look in likely. And you can't expect a trainee to take on an advocacy issue and successfully pass legislation in three years. I mean, that just isn't going to happen for a lot of us. We're successively implement a policy and I would also say that studying policy implementation or implementation science is also a very, you know, something to go beyond three years. But you know, I think there are ways to document that work, whether it is in you know, opinion pieces aren't going to stand alone for a scholarly project, but you know, there's lots of things opinion pieces, policy pieces, working on, you know, community advocacy, advocacy, projects that are then getting written up to show, you know, their influence or ways that they can do that. And I know, Emily is part of the health policy Scholars Program, so she can probably talk a lot more to that as well.


Speaker 3 15:16

Yeah, I would absolutely agree with everything Alison just said and then kind of add on top of that, that advocacy as an academic activity is growing. More and more institutions are realigning their promotion, metrics to include advocacy activities, like writing an op ed, like giving expert testimony in a legislative session. But there are also advocacy opportunities within what we consider a more traditional academic output. For example, pediatrics, journal now has an advocacy case series as a publication type. The AAP National Conference and Exhibition has added advocacy as an abstract and presentation type, in addition to things like original research, quality improvement. So those are definitely accessible to trainees. And in addition, there are trainings and professional development programs like AAP has the CP TI, Tracker modules. The APA or academic Pediatric Association has the health policy Scholars Program. Advocacy as an academic output as is now where medical education was a decade ago, where they're starting to be this momentum or push to kind of standardize it, legitimize it, and not so much, put up a round peg into a square hole, so to speak, where you're just trying to make these things fit into other metrics. And so I have to mention, a publication by doctors, Abby Nerlinger and Anita Shaw, on the advocacy portfolio, it gives a very nice, clear framework for how to define advocacy activities in ways that I think easily make sense or translate into scholarly output.


Ben 17:37

Definitely you, you've taken over the interview, talking about trainees and stuff and I wanted to talk about the provision of human human milk because I think


Daphna 17:47

I know I'm just saying, you know why, you know why we're pretty busy with the incubator, but like, this is something that I haven't interested in and I can't figure out how to do it. So came to talk about


Ben 18:04

I wanted to talk about, because I am wondering where so you guys have a special interest in in the provision of donor human milk in the NICU? I'm just first question is, when did that interest come about? Because I feel like if you're working in a NICU, and you guys are working in large institutions, if you have access to donor milk, then how does how do you connect the dots? That is, oh, my God, this is an issue somewhere else? Or maybe you guys have access to an American, you're NICUs. But and so where does that? How does that come about?


Speaker 4 18:34

Well, where I, when I in my pediatric residency, which was also here at Emory, we work at two level three NICUs. And then our level four, and our two level three Nikki's are about a mile apart. One is the safety net hospital for our two largest counties in Atlanta, and the other one was a previously a private hospital, but now under Academic, an academic institution, and one had donor milk and one did not. And so the babies really could have been born the exact same baby born a mile apart. And if one, you know, baby was at one institution, and mom did not have sufficient milk, they would receive formula, and then you know, just down the road, just a mile down the road, you know, that other baby would receive donor milk. And it just felt not right. We have relatively high rates of necrotizing enterocolitis. And here in Georgia and general as well as these institutions, and so it felt like it needed to happen now. I will say that, that hospital that did not have access to donor milk. There is another form of advocacy besides legislative and that's within your own institution, and that's doing advocacy with your institution to get therapies that you may need for the baby. So the doctors who were there did that it just took a long time. took a long time to convince the hospital that the the financial commitment was worth it. Because this is a, you know, of safety net hospital. And the data consistently shows that if you're at a safety net hospital, you are less likely to receive donor milk because it is more expensive than the alternative, which is formula feeds. So that's sort of where that's how I saw it and how I sort of got it invested in it. How about you, Emily?


Speaker 3 20:28

I had a similar kind of experience in that I did my residency and fellowship in Kentucky. I'm now in Ohio, but kind of the, the underlying factor is that everywhere I practiced was on a state line. And so we would get babies from, you know, two states or three states, because we were at this kind of intersection of the state borders. And depending on on what state you are caring for a baby in, or what type of state insurance they had. They also may have differential access to different therapies. That's true. And so I and you can apply that to different types of therapies that we use in the NICU. But in residency and fellowship, I actually never gave a second thought to access to donor milk because the history in Kentucky is that 10 years ago, a legislator had premature twins. At that point, donor milk was not a therapy that was accessible in the NICU. And that was the perfect champion to pass a state law. So that now all babies in the state of Kentucky have access to


Ben 21:41

dinner for the people. Oh, sorry. Go ahead.


Speaker 3 21:44

No, and so it's just like that Right place, right time, right story, you know, where the political will had not aligned in these other states yet. So when I joined a different institution as faculty, it was a different landscape. And that was a much different experience. And so similar to Allison, it was just like, what do we do like this? This can't continue them.


Ben 22:10

donor milk is an interesting concept for me, because it goes back to the roots of newborn care. Like if you're thinking of a witness, like this is something that has been practiced for centuries. And yet, today, we're talking about some of the things that we're done in the Middle Ages, and yet we're talking about how can we access but for people who and there are many ways that babies can receive donor milk, whether it is through wetness, or whether it is through like a community, I was working in a hospital where the community would share the breast milk be before so parents would come in with milk, but you didn't really know if they had obtained it from their community blood bank, or the milk bank, I'm sorry, or or if it was theirs. I mean, if you saw a mother on day to come in with like three bottles of white white milk, you knew that there probably was not, was not hers. But so but there's many ways that donor milk a donor milk comes in many forms. So for the people who are confused about what we're talking about, what exactly is donor milk in the US and when you're talking about provision of donor milk to preterm infants? What are we talking about that we talk because I think the concept of milk bank is something that not everybody may be familiar with.


Speaker 4 23:20

Yeah. And so it's a great question, and it's a confusing landscape. So specifically, what Emily and I are talking about is what's called pasteurized donor human milk. So this is milk that has been donated by healthy lactating moms. They have undergone screening medical screening and have been cleared by their physician, as well as the baby's physician to donate excessive amount. And moms could choose to donate for a variety of reasons they could have excess milk. As we all know, there's very rare conditions in which babies can't have breast milk. And then as well we have and bereaved families and bereaved moms who donate is a way to honor their child. So the milk that's where it comes from, and it's donated to a milk bank for the most part when most of what Emily I've been looking at is milk that has been donated to non not for profit, human milk banks, and so the donors are not paid and as a true donation, that milk isn't screened. It is pasteurized it is you know screen for viruses and bacteria in deemed safe and then sent to primarily to hospitals and to serve pre midterm preterm babies. There are other forms of what people may think donor milk there are other methods to create other products, what people may refer to as shelf stable milk or sterilized milk. This is Not just so that everyone is really clear, this is not the type of donor milk that we're discussing. And it is not the milk that has been used and the randomised trials that show improvement in necrotizing enterocolitis are the primary evidence behind the use of donor human milk and very preterm events is to reduce the risk of necrotizing enterocolitis. And that's with pasteurized donor human milk.


Ben 25:26

And so only then I can I can I can give give you this question, what are what does the evidence look like? You're talking about reduction. If somebody is not using donor milk, they say, Well, is it really critical for us to get donor milk, what what has the evidence shown in terms of reducing those rates of neck.


Speaker 3 25:43

So really, what we're talking about is for the highest risk, infants highest risk being for necrotizing enterocolitis. So these are very preterm infants less than 32 weeks, very low birth weight less than 1500 grams, when you compare these infants being fed formula, versus mom's own mill, or in this case, what we're talking about is donor milk, but still human melt, that the risk of necrotizing enterocolitis is more than double in the group that's being fed formula. And there are some other outcomes that there are signals that also improve with the use of donor milk. So it would make sense that if you have less risk of necrotizing, enterocolitis, you also have less risk of bloodstream infections, you have less dependence on TPN, you have lower central line days, you have shorter length of hospital stay, you have lower health care costs, in general, because a case of surgical neck can cost over $300,000. And so when you really start to I think, you know, people are very familiar with the improvements in necrotizing enterocolitis. And that is what we talk about with our families a lot. But there are a lot of other benefits that that come along with how we feed babies. And so those are some things to think about too, especially when you're trying to make the case maybe at your institutional level, like what are the benefits we're going to see for our population, where the cost savings is going to come in. Because it does come in, there's a huge cost savings. And we would be remiss not to mention that because I wish at the end of the day that saving babies lives, like was the one thing that like changed everybody's hearts in mind. But when you attach $1 sign to it. That is just one more


Daphna 27:41

thing. So I guess that's my question, right? Like, seemed like the right ethical thing to do, obviously. But it seems like it would save money in the long run. So what is the argument against not providing?


Speaker 4 27:57

I mean, I think I think in the high risk population, so as Emily mentioned, the less than 32 weeks, so less than 1500 grams. I mean, the evidence is there, that we should be using it I should say, it's also really important that donor milk is not the same as mom's milk. And it is absolutely crucial to provide these babies with donor human milk but it has to be in the context of full lactation support for moms because I Deeley, we get them mom's homes and milk because there are alterations to the donor milk, it's not the same it has to be pumped and stored and frozen and shipped and thawed and pasteurized and reefers and reshaped and transferred from container to container. So it's gonna be altered no matter what. So we get them mom's milk. But I think in the low risk in the high risk population, this low birth weight babies less than 32 weeks. If you do not have sufficient mom's milk, this is, you know, the recommendations from the AAP. You know as your alternative. There's other high risk populations, like babies who have congenital heart disease, specifically left sided and cyanotic congenital heart diseases, as well as abdominal anomalies such as gastroschisis, in atresia as in which we don't have the same degree of randomized controlled trial data, but it certainly building in as another sort of population in which, you know, it's important to think about donor milk.


Speaker 3 29:30

And I think in speaking with some of the, you know, we've really kind of gone on a roadshow so to speak, I think in trying to, to hear from folks what their experiences either implementing, you know, gender milk in their unit or what have been the barriers and just hearing as many stories as we can and we have heard from some folks that there are staffing barriers, space barriers, just implementation barriers because if you You work in a unit that has donor milk available, you know that there is often a dedicated freezer, a meal crew, maybe you have a milk tech, and somebody has to order the milk, somebody has to be there to receive the milk which comes frozen, right? You don't want you can't leave it in the in the shipping dock. Somebody has to bill for it. Somebody has to you know, there's just all of this kind of administrative and administrative and logistical background that goes into it too. And so for many hospitals, and particularly smaller volume hospitals may be serving what they perceive as a lower risk population. Or, importantly, safety net hospitals, hospitals that are serving a larger percentage of infants with Medicaid. Those are the hospitals that kind of across the board we see less donor milk use in and Mandy Balfour and Meg Parker has done some really nice work in quantifying what that use looks like and and saw that, you know, hospitals that have a larger percentage of black babies and brown babies in their units, along with that safety net piece, often have less access to donor milk as a therapy. And that just means that those babies differentially bear the burden of neck.


Ben 31:27

This episode is so proudly sponsored by Reckitt Mead Johnson recognized Johnson is dedicated to the research and development of nutrition products that help support baby development at every stage, including an extensive and female portfolio for premature and low birth weight infants learn more at HCP dot meet johnson.com. And so how are how is the distribution of donor milk organized? Is this something that is regulated by local municipalities? Is it is it done at the state level? Is there any federal regulation or are these private milk banks?


Speaker 3 32:02

So I think the thing that's going to be most available to most folks just because of the geographic spread, and the volume of distribution is him BANA are the human milk Banking Association of North America, those milk banks because they are across the United States and Canada. They have over 30 active milk banks and more in the works. And they distribute nationally. And so those are the not for profit milk banks that we were referencing. And so for many folks, there is a milk bank in your state, or adjacent right next to your state. So in Ohio, for example, we have a milk bank, it is affiliated with one of our academic institutions. And that is where the majority of our supply in Ohio comes from his from that milk bank. And so we have a relationship with them as far as the ordering process and our supply. But that nope bank because we have a surplus of milk donors in Ohio, that milk bank is also able to supply other states. And so I know that we also shipped some excess out to adjacent states that may not have a milk bank.


Speaker 4 33:16

So it's it's an individual relationship between the hospital and the mount like in Georgia, for example, we actually don't have a local donor human milk bank. So all of our donor human milk comes from other milk banks from Austin and North Carolina, and kind of all over and even occasionally from Ohio as well. So it is it is an individual relationship, milk banks, some also do serve an outpatient population. So that's a group of kids that we haven't talked about too much. And that ability is also really fraught because it's very rarely covered by insurance and donor human milk you know is in the four to $5 per ounce cost range, which is not insignificant if you would think about having to provide that for say like a large term infant who may be drinking you know, large false term infant bottles, which is very different than you know a kilo infant. And so, but those relationships are frequently between the outpatient family you know, directly with with the milk bank as well, but they are individual institute you know, they are individual entities that are accredited by Havana, and they they work out relationships directly with with the hospitals for supplies, as well as for milk donations, so hospitals can serve as milk depots where parents, moms, who have been screened appropriately and if unclear to donate, can drop off and donate.


Daphna 34:54

So you've we've talked a lot about the individual hospital variation and Um, but obviously, we have regional and state variation. And you guys have alluded a little bit to that about the states that have taken a legislative approach to the availability of donor milk. And I think we would be remiss if we didn't discuss your recent articles, I'll just mention that here. And then you guys can tell us about some of those, the legislative challenges. So this is a new article, and this month in journal Perinatology, US state policies for Medicaid coverage of donor human milk with a truly an all star team of writers of authors. So tell us a little bit about the state variation and disparity in Mill?


Speaker 3 35:45

Well, Alison and I are both laughing because we're just recalling how many late night phone calls and early morning text messages trying to like, follow the path down this rabbit hole that we found ourselves in, which is why we wrote about it, because we, you know, we've talked about organically how our interest in this area grew and why we were pursuing it. But we were like, Okay, well, let's just like do a little research, we'll do a little lit review, we'll figure out what the landscape is and easy. What we found is that we didn't even know how to answer the question.


Unknown Speaker 36:27

Yeah, or what the question was, yes.


Speaker 3 36:30

We realized that like there is, you know, we were like, how do I even find out what the law is in my state, it is just wild to try to track down the actual language of a law. And all the I'm sure that all the revisions are with all the iterations who had their hand on it, how you ended up with that. And then each state, we found out often has multiple versions of how that law is applied inpatient, outpatient, Medicaid, commercial insurance, you know, interest with the military. There's different medical criteria, there's different time limitations, there's just so many iterations. And so we were very fortunate to partner with one of our co authors and our collaborators, who was a lawyer who was intimately familiar with the legal databases, because we were way over our heads and trying to figure that out and, and helped us search the legal databases and summarize the landscape of US state policies on general milk coverage. And the spoiler alert, like the the punchline is that every single state has one or more, you know, laws or around donor milk or iterations of that same law. And no two states are the same. And so that makes it incredibly challenging for folks who want to take up this cause in their state to even understand where to start, which is why we decided to write it up.


Speaker 4 38:15

And I would say that even our paper now is even out of date, because state policy changes so quickly. So Georgia wasn't on there. And now we do have some funding that we went through, not through a legislative process, but through a regulatory process directly with Medicaid to get coverage. So so that's another really interesting piece of this puzzle that was really hard. Not everything is addressed as a, as a legislative issue, like a law that you can pass, all of the states have governmental agencies that have control of money as well. So you're for us, the Department of Community Health, here in Georgia, you know, is in control of the Medicaid budget. So we actually ended up going in working directly with them to get a line item in the budget to cover this. And so that also complicates the picture, because you're not going to find that in a legal database. So then trying to understand where everything is, is. It was a bit of a challenge.


Speaker 3 39:19

But we're really excited to say that it's out of Yeah, right. Yes, yes, that's good news. Yeah, just in the year since we wrote it. At that point, it was 14 states in DC, and we're now over 20 states that have laws on the books. And so that means that 25% of that work has been done in the last year alone. Well, not the work, right, because the work takes years. It's an investment by a team. But that change, it's exponential. And I think that's why it's so important to be talking about this now because soon your state is going to be in the minority. Right? If you're not if you're not covering general milk and No, we are glad that we had the opportunity to put out this resource for folks so that you can pick up the charge


Unknown Speaker 40:07

Emily, maybe we should write an update


Ben 40:12

you text back. I don't want to miss ability in the in the shuffle that this will cause in your personal lives. Are there any ethical like, you know how when we give when we I'm thinking about it from the standpoint of blood transfusion, you know how we, when we take a blood transfusion, we have to mention certain things like either Still, despite the fact that we check the blood, there's still a risk, perhaps like point 1% points, one in a million? Are there any risks associated with donor human milk despite how the milk is checked and processed? And how do you navigate this component of the intervention when you're dealing with legislature? So also not to scare off people? Because, I mean, we've all had the patients who say, What do you mean, they could still be in fact, like, you know, even though the benefits clearly outweigh the minute, the minute the miniscule risk that is associated? I'm just curious, how do you how do you deal with that?


Speaker 4 41:07

Yeah, so actually, that's a timely question. Just we here in Georgia, we just have we just had our perinatal quality, collaborative, sort of annual meeting and had really the pleasure of speaking to one of the medical directors of the Austin vote bank, Kim Updegrove. He's just a phenomenal resource on donor human milk. And she again, and I knew this to be true. And she emphasized it, there have been zero documented cases of infection transmitted through donor human milk. So zero, it is phenomenally safe, pasteurized donor human milk from the Havana milk banks is phenomenally safe from a infection transmission risk. So that is just not from that perspective, it's not really something to be concerned about from infection. And I do think there are people looking at growth on donor human milk. And there's been conflicting data about about whether or not it impacts weight gain and growth and and that has gone back and forth a little bit. And we probably all have anecdotal data. I will I mean, I don't know if I'm appropriately like, feel like there's so idioms are always low, you're adding some supplements like, so I think we have all of all of those things that are happening that we're seeing on a day to day to day basis, but from certainly from an infection perspective, it is very safe.


Speaker 3 42:35

And I think we've, you know, all individually and institutionally, you know, decided to continue using donor milk because we feel like those benefits outweigh those risks. Right. You know, we, we know that we may need to use certain supplementation, or we know that we may need to look at the calories and the fat, right. But at the end of the day, like the balance favors the use of donor milk. I will add that one other thing, one other question we get asked sometimes is about availability of donor mil and as use is spreading, and the volumes are increasing, or we're advocating for additional populations, like babies with gastroschisis, are heart disease, like, is the milk gonna run out? And so the Habana volume distribution has continued to increase exponentially. And in our communications with different folks and different organizations have always been reassured that the supply is there. Do not let a concern about supply keep you from advocating for this using this pushing for this. And so I just want to that's a question that comes up sometimes that we don't think about maybe as a as a risk, like, what if it runs out? And I don't think that should keep us from from using it.


Daphna 44:02

In terms of, you know, talking to about, you know, misperceptions. I don't believe this to be true. I think our shared decision making with families is so critically important. But I've heard the argument that if we have good availability of donor milk that in our units, the the provision of mom's own milk is likely to decline like this perception that if if there's a safety net for families, and then maybe they'll stop pumping,


Speaker 4 44:34

I feel like so the evidence isn't there to support that. There is evidence that shows that units and implemented donor human milk program have if not increased, at least stable rates of moms and milk feeding. And I think it does. I wonder where that comes from. I have to try to think back to you know, what are elicit biases that if you know a population who may or may not likely be provide mom's milk, are we making assumptions that they will somehow do something different? If if donor human milk is available, because it hasn't been, it hasn't been borne out. As well, having a donor female policy in your unit really emphasizes the importance of human milk, it brings all staff, you know, it brings your your nursing staff, it brings your lactation staff, it brings your residential teaching, I mean, they have to learn how to consent for that they have to learn the importance of it. You know, it brings everyone onto the same page that the provision of human milk is paramount to these babies. And in sort of, like I said, earlier, donor human milk shouldn't be presented as the nutrition for the baby in an eye, what we should be presenting it, as you know, is a bridge to mom's milk coming in, or something that we can use to augment mom's milk. And they're absolutely cases where we can't get any and we get that and in those cases, but hopefully, the I mean, ideally, we're all striving to make that is rare as possible that we're getting as much mom's milk as possible. We all know that that is that is definitely challenging.


Speaker 3 46:20

And I, I hope that we've made this very clear, but our families are doing hard things, especially right in the NICU, they are choosing to do hard things, they are not choosing to take the easy way out. So this concept that this is like a you know, oh, I just don't have to show up today, because you know, my baby's gonna have donor milk. Just to be very clear, right. That's not what's happening. What is happening is that there are so many barriers to parents being able to provide milk to their babies. And Alison mentioned this and just to, to say further that when you have a culture of lactation support in your unit and family support and your unit, you start to think about things like transportation to the NICU, how hard is it for these families to get to the NICU, and child care barriers and employment barriers that this family has to make a choice between losing their job and coming to see their baby, maybe they're an hourly worker, and their employer doesn't provide paid lactation breaks or a place to pump? Right. And weekend, that's a whole nother podcast about those things. But I think it's really important to say that if you're a unit that uses donor milk, you like Allison said, We'll see stable to increased provision of a parent's own milk. And it opens up the conversation to start talking about what are the other barriers? How can we better support our families? How can we start to address some of these other things?


Daphna 48:05

Yeah, certainly, in my experience, I've only seen it help. Right, it encourages moms who are pumping that they'll get there. And we have this in the interim until until they get there has, you know, the work in individual states or around the provision of donor milk allowed for expansion of lactation coverage and services? Like in the same vein, like is anybody trying to scoop them in all together?


Speaker 4 48:38

That's a great I. I don't I don't actually know the specific answer to that question, to the same degree of detail that we could talk to you about state policies on donor milk. Although, I know in Georgia, we've got lots of people actively advocating for good lactation support through both, you know, reimbursement for lactation work and consultants, as well as things like making sure moms have access to appropriate pumps, you know, dual electric pumps and things like that. So that's like a whole nother topic of advocacy is in place. That's really, really important.


Speaker 3 49:18

Yeah, similarly, in Ohio, it often is, you can look at the granular level and look at these very specific provisions about how to get reimbursed as a lactation consultant, and what legislative, you know, capacity has to be in place for that to happen in your state. And then you can take a step back and look at what are often these kind of maternal infant health packages, legislative packages. So in Ohio, for example, we're in an maternal and infant mortality crisis. Right now we have some of the highest rates of maternal and infant mortality in the country. And there's a lot of work being done by a lot of different people, and so legislators tend to kind of group these things together into packages of bills that are for moms and babies, right? Everybody loves moms and babies. So the donor milk work gets included in doula services, you know, reimbursement for doulas, and expansion of postpartum Medicaid. There was a lot of work last year in the formula shortage crisis around WIC, and access to infant feeding. And so yes, there are some states that are specifically, you know, looking at lactation consultants and lactation support and breast pumps and things. And then additionally, states are kind of putting it into that larger bucket of maternal and infant health.


Daphna 50:52

And so how do people find out I didn't on your paper? What's going on in there an individual state? And when they find out that maybe it's not covered? How do they how do they join? How do they join the fight, I guess, to to get more breast milk in their state?


Speaker 4 51:14

Absolutely, first of all, absolutely. Like feel free to reach out to Emily and I, anytime, that's definitely a number one. And because that was so helpful in our process here in Georgia, when so, so first of all like is, besides my cell phone, number of other things they could do? I, I here, cannot speak more highly of our local Georgia AP chapter. So your local state AP chapter is a phenomenal place to start. If they don't have a legislative committee, which I can't imagine they do not there's going to be a committee on the fetus newborn, you know, there is or a committee on breastfeeding. So there is going to be a local group of people there, who, if they are not actively advocating for this could easily pick up the mantle and do so and or direct you to the legislative context that would allow this to happen. The other thing I would say is talk to your neighboring states. So when we first started this process in Georgia, you know, it was the crew in New York who had successfully done this that we were sort of initially having phone calls with about their process. And the very first thing that our Georgia AP person said was like, Georgia legislators want to know the thing about New York, they do not care about you New York, they want to know what Florida is doing. And what South Carolina doing and what is Alabama doing that too. They care about what's Mississippi doing? Right, they don't care will really care about Florida, but they don't care about New York. So don't don't even tell us anything more about New York. So So I think that's also really important is knowing as you start to do this, identify what states who either may be geographically near you and or politically, similar to your state may be doing because in


Unknown Speaker 53:07

Florida, it's really,


Speaker 4 53:09

really good what's going on in Georgia, for the crew in Florida, and vice versa.


Speaker 3 53:17

Yeah, and I will, I will just quickly add to that, that key partners in Ohio, we've worked with our milk bank, we have worked with patient and family advocates, families that have been affected by necrotizing enterocolitis. There are other organizations like the next society that are doing critical work around this issue. Other neonatologist in your state, figuring out what different units are doing. So I've talked, you know, to colleagues at at different hospitals across the state. And then through the section through the section on neonatal and Perinatal medicine. We've developed this network of advocates and so if you're not sure where to start, the you know the joke about calling Allison right, but but we're serious and that sometimes what we get is an email from somebody in another state that's like, you know, I don't even know where to start. And so we can brainstorm and we can help you try to figure out what the landscape is like or what some barriers might be, or is there somebody already doing the work that we can connect you with? So there's a there's a whole host of opportunity that's out there.


Ben 54:31

As we're getting close to the end of the episode, I wanted to ask one last question and for people like you who have been in this in this space for some time and who have been successful, can you tell us a story of like what successful day looks like when you when you finally get I don't know I'm actually not even sure but like a story that happened on your journey to try to effectuate change and what that looked like if you have a if you have a story.


Speaker 4 54:56

Well, it may connection, the crew that was held Let me work on this at the Georgia AP. I remember just getting the text and it was like, and all she told me was listen to Department of Community Health Committee hearing at this time, like they were just doing their business update meeting, like scroll to minute for, you know, in this recorded hearing, and I was at home, and I did and I scrolled and I heard that they were going to be including this in the budget. And it was awesome. And I screen captured it. And I sent it to my colleague, Ravi Patel, who was also working on this with me. And we, you know, celebrated via text, yay, congratulations. But it just it felt it felt good. And but it was interesting. Like I actually, we didn't know it was coming. Like, we've been talking to them talking to them, do this, please do this. We want this. And then all of a sudden, like, there it is. They're doing it. And it was it was really great. Unusual, I would say probably unusual for it to happen like that, but really fun. So I watched an online committee.


Speaker 3 56:02

Well, similarly, I, I was at PHS conference last year, I walked into pre programmed session that I had for my health policy Scholars Program. And I had not gotten two feet inside the door. When shuttle Shaw, who is my national mentor and collaborator, one of my co authors, one of our co authors on this piece. Almost tackled me to say, did you hear Did you hear last night, you know, this state approved this law. And now all these babies in this state have access to donor milk. And it is just like Allison said, you know, it's not my state. But that doesn't matter. It's, it's, we're all fighting for the same thing. And all the babies deserve to have this. And so that is the fire. That is the reason. I think that keeps us going when there are hard days when it feels like nobody is gonna listen to you. And you're just banging your head against the wall. Yeah.


Ben 57:05

I mean, I almost don't want to say anything, cuz it's like, so such good ending to the episode. But the scale on which you're having an effect is just mind blowing. So that's awesome. Emily, Allison, thank you so much for making time to speak with us today. This was a phenomenal interview, we're going to put the article that we referenced in the episode page and will leave your email addresses on the episode page as well. So that's when when trainees and other


Daphna 57:34

email is great. But also, thank you for the work that you guys are doing and continue to do on the behalf of


Speaker 4 57:45

thank you and thank ya as well for doing these podcasts. And I think bringing our neonatology community together in a very special and wonderful way.


Ben 57:58

Thank you so much. Thank you so much. Thank you for having us. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcast, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU podcast@gmail.com. You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot the dash incubator.org. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you


Transcribed by https://otter.ai



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The transcript of today's episode can be found below 👇

Ben 1:02

Hello, everybody, welcome back to the incubator podcast. It is Wednesday. It is the last episode of the mega series that we're doing on bigger series seems so heavy so heavy turned Omega series. It's like a mini series on mini series. The intention is mega

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