Hello friends 👋

In this episode of The Incubator, hosts Ben and Daphna are joined by Dr. Shetal Shah and Stephanie Glier, Director of Federal Advocacy for the American Academy of Pediatrics, to discuss the critical issue of continuous Medicaid coverage for children. The conversation dives deep into how Medicaid and CHIP (Children's Health Insurance Program) support approximately 50% of all U.S. children, with particular emphasis on how these programs benefit children with complex medical needs, such as those in the NICU. Dr. Shah highlights the importance of reducing coverage "churn," where children lose and regain coverage repeatedly, which can severely impact their care. Stephanie explains the changes in federal and state policies, including the new requirement for states to provide a minimum of 12 months of continuous coverage for children under Medicaid and CHIP. The discussion also touches on the significant advocacy efforts required to protect and expand these programs, with practical advice on how healthcare providers can get involved in their states. This episode emphasizes the critical role Medicaid plays in ensuring continuous, uninterrupted care for the most vulnerable children and encourages neonatologists to advocate for better healthcare coverage on both local and national levels.

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Some of the resources mentioned on today's episode can be accessed here 👇

Medicaid and the Children's Health Insurance Program: Optimization to Promote Equity in Child and Young Adult Health.

Kusma JD, Raphael JL, Perrin JM, Hudak ML; COMMITTEE ON CHILD HEALTH FINANCING.Pediatrics. 2023 Nov 1;152(5):e2023064088. doi: 10.1542/peds.2023-064088.PMID: 37860840

The AAP Advocacy Page

https://www.aap.org/en/community/aap-sections/sonpm/neonatologists/advocacy/?srsltid=AfmBOoq4oUEYsP7YsNpxfCBXHuf6KQmc65M5lmq40riYAqEP0G97ypVf

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Short Bio: Stephanie Glier is a Director of Federal Advocacy for the American Academy of Pediatrics where she leads federal advocacy to promote children’s health care coverage and access to care, as well as effective financing, quality, and delivery of care for children. Prior to joining the Academy, Stephanie led the Consumer-Purchaser Alliance, a coalition of consumer, employer, and labor organizations collaborating to improve the value and outcomes of the health care system. Stephanie previously worked on health care policy in the Office of the Assistant Secretary for Planning and Evaluation at HHS, the Center for Medicare and Medicaid Innovation, and The Commonwealth Fund. She holds a Bachelor of Arts in Human Biology from Stanford University and a Master of Public Health from the George Washington University.

Short Bio: Bio: Dr. Shetal Shah is a practicing neonatologist and researcher, and a Professor of Pediatrics in the Division of Neonatology at New York Medical College, the academic affiliate of Maria Fareri Children's Hospital, a member of the Westchester Medical Center Health Network (WMCHealth). His research focuses on understanding the role of the neonatal intensive care unit in providing public health measures, particularly vaccinations to parents of admitted infants. He also aims to conduct research, which through sustained advocacy, can be translated to policy. Dr. Shah’s work on providing parents influenza and Tdap immunization in the neonatal intensive care unit has resulted in two New York State public health laws. He was the principal advocate for the 2009 Neonatal Influenza Prevention Act and the 2012 Neonatal Pertussis Prevention Act. His work on the cost-effectiveness of donor milk for high risk neonatal infants resulted in co-authorship of a legislative measure mandating New York State Medicaid provide insurance payment for this vital resource. His current work focuses on the safety of administration of live rotavirus vaccine to preterm, NICU-hospitalized infants, bedside adult pneumococcal immunization and point-of-care smoking cessation referral. From a basic science perspective, Dr. Shah’s current work examines the anti-inflammatory properties of stem cells on lung recovery from pulmonary hemorrhage and hyperoxic injury, focusing on cytokine biology and fibrosis. He is a recipient of many honors, including the American Medical Association’s Leadership Award, the National Physician Advocate Award, the New York State L. Stanley James Award for Perinatal Medicine and the March of Dimes Excellence in Advocacy Award.

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

The Incubator (00:00.194)

the cloud, you should get like this little notification, you press okay. And then basically it's a different setup than the Riverside app. So we're now recording and we should be good to go. Is it okay if we begin with everybody? Yep, okay. All right, so three, two, one. Hello everybody. Thank you for being here with us on the Incubator podcast. We are back today with a special interview.

My dear co -host, Daphna, is here with us today. Daphna, how are you? I'm doing great. I'm admittedly looking forward to learning a lot. I wonder if many of our listeners may be feeling the same way, a little confusion about insurance and what does that mean? And what does that mean for our patients? But we're going to figure it out today. Absolutely. We are very excited to...

to do another episode with our good friend, Dr. Shetal Shah. Good morning and thank you for being on with us.

Thank you guys so much for having me. And honestly, thank you guys for keeping this platform going. I really never thought that I'd be getting so much education in my car just on the way. I was talking to Ben about this the other day. was like, people just much like come up to you all the time and just start talking to you as if they know you because it's like, I'm like, Ben has been in my car more often than anyone else.

sometimes Daphna will be on the podcast and I'll just start talking back to her. And I realized that she's not really there. So we're very thankful that you're on with us, Cheryl, once again, and that we are able to do another podcast episode about an issue related to advocacy. And we're so honored today to have on with us Stephanie Glier, who is the Director of Federal Advocacy for the American Academy of Pediatrics.

The Incubator (01:57.036)

Stephanie, so thank you so much for taking the time out of your busy schedule to be on with us. Thanks so much for having me. I'm really excited to be here today. And so I'm going to actually, you know what? I'm going to make my life easy today and I'm going to let Shetal introduce this episode and tell us, Shetal, why you thought it would be a valuable and compelling issue, a compelling issue to discuss here on the podcast with Stephanie.

regarding continuous Medicaid coverage. And can you tell us a little bit about what motivated you to bring this up, I guess, to the community? Sure. First of all, I'm going to tell this at the beginning in case Ben wants to edit it out. at the last PAS meeting, I was just talking about how Ben has to wear and Daphna, you guys have to wear disguises now when you go through airports and stuff so people don't stop you. We're not quite there yet.

Well, so no, because I went to say hi to Ben at the AI session at the beginning of PAS and we were talking and I was like, Ben, like, is this weird for you? Because I could, I just, I could just stand up on this chair and go, my God, it's the hosts of the incubator podcast. And Ben, looks at me, his eyes get wide, his voice gets really low. He's like, Shetal, please don't. And I was like, okay. And I'm thinking the same thing right now.

I honored the request. But the PAS before that, all I did was I tried to have coffee with Ben, but all I did was take pictures of other people and Ben and here's Ben with someone. Here's Ben and Daphna with someone. Here's Daphna with someone. You know, it was awesome. I'm so sorry about that. No, it's fine. I think it just speaks to the popularity of this platform. I think that's part of the reason. Well, that's part of the reason I think Stephanie and I are here, which is that

If you're involved in advocacy, of the way I am, people will come up to you and particularly neonatologists and they say it all the time. They say, I'm really interested in donor milk or I'm really interested in these issues that relate to newborns. But there are other issues that relate to children that sometimes I don't feel like I know about much about.

The Incubator (04:16.534)

Right. And I hear this a lot about things like gun violence, right? We were not the PGR doctors, right? We're not the PICU doctors. We're not the trauma surgeons. And while we sort of know about this as an important concept for children, because we, you know, we were educated people, we're not, we don't live it in our work life experience. So people come up to me all the time and, and they sort of ask, say, how do you build these connections between what we live?

within the four walls of our NICU and a lot of the advocacy stuff that's going on for children that exists outside of sort of the neonatal space. And this topic, right, insurance coverage in general is something that we all have to deal with because it affects everything, right? It affects the care our patients get both in and once they leave the NICU, it affects how much we're paid, which of course we all care about.

Right. Because I tell, I'll tell you what I tell the fellows, whether you like it or not directly or indirectly, we're all paid by Medicaid. Just given how important the insurance program is. So continuous Medicaid coverage is something that's evolving and it really provides a unique overlap point between neonatologists to work with advocacy organizations, AAP chapters, to talk about something that really impacts all of us.

because one of the take home messages I think I'm trying to sort of leave the listeners with is that continuous Medicaid coverage is really important for all children, but it disproportionately benefits our kids, right? Our patients are the ones who asymmetrically benefit from not going through periods of churn where they have insurance coverage and then they lose it. And then they have insurance coverage and they lose it. Because in the first two years and even through early childhood,

our kids are the highest users pound for pound of healthcare services. And I think that's what people really need to understand. So if you care about kids the way we all do or care about babies the way we all do, it's not just, we don't just care about them until they are discharged, right? We have to invest and care about ensuring that they thrive once they leave the NICU and continue on through early childhood.

The Incubator (06:40.13)

So that's the reason I think it was really important to sort of get this message out there. I also think in general, we as a Neonatologists know a lot less about insurance coverage and about all these policies and principles that are general pediatrics and then our outpatient colleagues because more so than other parts of pediatric practice, we tend to be employees. And when you're employees, you get a paycheck. You're not really always thinking about

the upstream sources of where that money comes from. And that's why it's really important for all of us to keep our eye on the Medicaid space and what's going on. And we're lucky in that we you know, we have, you know, guides, experts, teachers like Stephanie, who can sort of walk us through what's going on and why this is so important. Thank you. Thank you, Shetal. And Stephanie, I would like to turn to you and maybe give us an idea of

of the scope of what we're talking about, because if my research serves me right, I was reading that approximately 50 % of all US children are receiving care through Medicaid or CHIP. And so this really affects a significant, if not a majority, of the children in the United States. And so can you walk us through a little bit, how is Medicaid serving

our pediatric population and what is continuous eligibility or prolonged coverage for these children? I'm so thrilled to be talking about Medicaid. It's one of my favorite topics. yes, you're absolutely right. Right now, about half of all children in the United States are covered by Medicaid and its sister program CHIP, the Children's Health Insurance Program. These two programs are sort of foundational to children's health.

They have grown a lot over time. Just to go way back for a minute into the back chapters of history, Medicaid was enacted into law in 1965, along with Medicare. It's better known program. So Medicare is a program designed to serve the elderly population, the seniors, 65 and older, as well as a cohort of a few other populations who are specifically eligible for Medicare.

The Incubator (09:02.072)

folks with end -stage renal disease, folks who are blind, and some other disabled groups. But Medicaid is the sort of like extra champion scrappy program that was designed to sort of serve as a backup for a lot of other populations. It initially was a program designed to support poor children and poor pregnant women and has grown over time both in scope and in who it covers. We saw

that it was doing a pretty good job over the course of the 40 years after, or the 30 years after it was enacted. But in 1996, Congress realized that there were still a lot of children who were uninsured and that was really impacting child health overall across the whole population. And so in 1997, the state children's health insurance program was added as a piggyback program on top of Medicaid. So Medicaid is a state federal partnership where the federal government provides most of the money, but every state gets to run the program the way that they want to.

with a few sort of minimum criteria for how it operates, who it has to cover, what benefits they have to include. And CHIP sits on top of that to provide extra coverage for children whose families make a little bit too much money to qualify for Medicaid and for some pregnant women as well who make a little bit too much money to qualify for Medicaid. And we saw this great decrease in the number of uninsured kids after CHIP was enacted in 1997 up until the Affordable Care Act was passed in 2010.

heading right into the current decade. So the ACA was passed in 2010 and we saw a really important rise in the number of kids with coverage, both through Medicaid and CHIP, through the Medicaid expansion, through some CHIP policies that bolstered that program, as well as through the expansion of commercial insurance, through the health insurance marketplaces, and through the requirement that employers also offer more coverage to their employees.

which included dependent children. Hopefully we are not having employers cover child workers. We're hoping not to have that be the pathway, but we'll make sure that kids are covered however we need to. And we saw a really important rise in the number of kids with coverage right until 2016. We had a historic low where only 4 .7 % of kids in the US were uninsured in 2016. And unfortunately, starting in 2017, we started to see those gains start going the wrong direction where we had

The Incubator (11:25.038)

more kids losing coverage, more kids uninsured because of a number of federal and state policy choices that resulted in families losing coverage, in more kids, more families declining to sign up for programs like Medicaid and CHIP. And we saw that decrease happen right until 2020 when the COVID public health emergency took hold. Congress passed a new policy in 2020, in March of 2020, to

respond to the COVID pandemic. Congress thought to themselves, gosh, it seems like a terrible idea for people to be facing this very horrible illness and not to have insurance. So we want to make sure that Medicaid is available for folks if they get sick, if they get COVID, that they could go ahead and get care and not continue to spread COVID in the community. So Congress said, hey, Medicaid, hey, every state, we're going to give you extra funds for Medicaid to make sure that the program is available to all the people who need it during this pandemic.

But as long as the public health emergency is in place, you cannot disenroll anybody from Medicaid. So you have to make sure that anybody who gets on the Medicaid stays on Medicaid as long as that public health emergency is in place. At the time, this was Congress thinking about like, we're still talking two weeks to stop the spread at this point in 2020. As we all know, that was not in fact the trajectory of that pandemic. And so the continuous eligibility requirement that was in place beginning in March 2020

went on for a lot longer. So as a result of that policy, we saw this really important growth in the number of kids and adults, but especially kids enrolled in Medicaid and CHIP. And from 2020 to 2023, we saw 7 million more kids enroll in Medicaid and CHIP, where we saw a truly historic high. 56 % of all kids were enrolled in Medicaid and CHIP across the US in April, 2023. This is awesome. I mean, this is like really fabulous. It means that kids have

coverage that their families can feel secure knowing that they can get the care that they need without having to bear the financial costs of that. one of the rare positive side effects of We'll take a silver lining wherever we can, right? And so we know that those families were able to get the emergency care that they needed if they did have COVID, if they did have a hospitalization, but they also benefited from lots of other supports that having insurance.

The Incubator (13:48.846)

guarantees you. So kids were able to get well child visits without any barriers. They were able to get acute care when they needed acute care. For kids with medical complexity, those families didn't have to worry as much about being able to afford more complex treatments, about being able to afford technology supports or other or home care or other services that make it easy for those kids to be able to thrive and to meet their best potential. so can you, we've spoken about this on the podcast with Shadow actually, where in 2023,

this protection really ends. And now we go back to a state where while people may have been eligible for Medicaid, they sort of have to renew this eligibility on a year to year basis. And that led to this huge transition. And can you tell us a little bit about what has happened in the past year plus since this happened? Yeah, let me set the stage a little bit by thinking about

where most of us, probably all of your listeners get their insurance through their employer. And if you are getting employer sponsored insurance, you probably signed up for it when you took your job, or you might look at your options with your family every year during open enrollment to say, know, if we are a two adult household, we both have insurance options, which one is going to be the most affordable for us? You might take a look at that every year, but once you enroll in coverage, you get to keep that coverage.

and you don't have to think about it again. You don't have to sign up again unless you choose to during one of those open enrollment times. Medicare is the same kind of way. Once you enroll in Medicare, you're good. You can make a change every year if you want to, to sort of switch plans or to think about what sort of drug prescription, a prescription drug package is going to work best for you. Or if you want to get some of those extra benefits, there's some Medicare programs that have like, you know, like a gym benefit or a other kind of wellness benefit. But once you're in the program you're in, you're all set.

Medicaid and CHIP are not like that. Medicaid and CHIP are programs that require you to prove that you are still eligible on a periodic basis. And how frequent that redetermination of eligibility is depends on the state that you are in. So in some states, states like to, some states like to offer a full year of coverage and say, once you're in, we think you're probably good. We're going to double check every year to make sure that you're still eligible, but we're going to give you coverage and then see how things go.

The Incubator (16:14.828)

Some states like to check more frequently. They are worried about fraud. They are worried about waste. They are particularly concerned that there are people who have lost eligibility who might still be relying on that publicly funded program to get insurance where the state thinks that that enrollee should find themselves another source of coverage. So if you think about the folks, especially who are, there are a lot of people in Medicaid and CHIP whose eligibility is sort of right at the top

threshold of what qualifies for eligibility. So a family who is working, we have one parent who's working a minimum wage job, or two parents who are working minimum wage jobs might be just barely eligible for Medicaid. And if they take an extra shift, they might make enough money one month so that their family no longer qualifies, that they're no longer income eligible for Medicaid. so for that's so interesting.

Yeah, it's really challenging and very frustrating. you have a state that checks on this at a less frequent interval, on the aggregate, it may not make a difference. But if you have a state that checks it very, very frequently, like you said, a single shift may actually tip the balance in the wrong direction and suddenly you lose coverage. That's right. Wow. It's a lot of risk for those families who are right on the threshold, who's

we call it churn. So folks sort of churn in and out of Medicaid and CHIP eligibility where one month they're eligible and the next month they're not eligible and the month after that they might be eligible again. And so they keep enrolling in Medicaid and then getting dropped from the program and then having to re -enroll in Medicaid and then getting dropped from the program. And that is both really administratively costly. It actually costs the state a bunch of money to do the paperwork, to do the eligibility check, to process the paperwork, to terminate somebody or to re -enroll them.

And as you can imagine, it's also really costly for the family, both in terms of sort of emotional, an emotional cost, a financial cost, if they have any healthcare needs that need to get met during that time when they are uncovered. And we know that for a lot of families that churn process really breaks down their trust in the program and they don't believe that it is actually there to support them. So we've seen a bunch of families that even though they become eligible again, will not enroll in the program again, because they just don't think it's worth it. It's worth the hassle of going back through the.

The Incubator (18:33.838)

process. Wow, that's incredibly frustrating. And Stephanie, thank you for taking us through this historical context. this, I think the churn, this topic about the churn is especially important. And I have some more questions actually about eligibility criteria before you take us into the unwinding and continuous coverage. Since we do have a big NICU population listening,

There are some eligibility requirements that are not related to financial status. And I think they affect a lot of our babies in the NICU or their financial end plus. Maybe you can speak a little bit to that in our special population. Yeah, that's a great point. Most people think of Medicaid as requiring income eligibility plus. So in most cases, you have to be poor and poor

and pregnant, poor and elderly, poor and a child. And so all of those are income eligibility where depending on the specific type of category you are, your level of family income, household income has to be below the threshold. For kids, especially for infants, in most states they have the highest income eligibility. So kids up to as much as 400 % of the poverty, kids and families up to 400 % of the poverty line will be eligible for Medicaid, even if their parents are only eligible at 50 % of

poverty line or 133 % of the poverty line. But as you said, there are a few other categories of infants in particular, children who become eligible for Medicaid regardless of income. And in particular, there are some groups who are categorically eligible because of disability status, where if they meet a particular level of disability using the social security disability threshold,

they can qualify regardless of income. In most cases, that is through a waiver program. It is not through the baseline Medicaid program. And that makes it also really challenging for those families to be able to enroll with a lot of security. But that does mean that those folks are able to get coverage through Medicaid to provide the financial security that they need.

The Incubator (20:50.55)

So I guess the topic at hand today is really to talk about this opportunity for more continuous coverage for children. really, can you tell us a little bit about what has changed both federally and on a state level that gives potentially the opportunity to effectuate change there where parents of children may not have to seek, to check on eligibility on such a frequent basis, but may.

be a little bit set back into COVID sort of protection where children should be eligible once and get coverage for a certain number of years, five, six at the most right now, and maybe even longer. But can you tell us how that works right now and where are the opportunities on local and federal level? Yeah, thank you. So there's one major new policy that has taken place that's been implemented that has made a

major change in the way that kids are getting coverage and how frequently they have to go through these redetermination processes. In 2022, at the end of the year, we finally saw Congress take action to require that all Medicaid and CHIP programs will now be offering a minimum of 12 months of coverage to all kids enrolled in Medicaid and CHIP. So this used to be an option that states could choose to take up if they wanted to. Some states, had about half of all the states, 26 states had either taken up

12 months of coverage in Medicaid or 12 months of coverage in CHIP or both. But that meant that half of the states did not. And so they were conducting these eligibility checks more frequently than once a year, which meant that a lot of kids were falling out of the program and then coming back on the program. Before 2022, we saw that about in a typical year pre -COVID, we saw that most kids who got dropped from Medicaid re -enrolled within about 11 months. So that meant that their family really was right on the threshold, that they really were not having major

changes in their family circumstances is just that their family made a little bit too much money and then stopped making too much money and became eligible again for Medicaid. But so again, this administrative process of dropping them from the program and then re -enrolling them in the program cost the state money, cost the family and hurt kids' health. So Congress And we spoke about this on the podcast. It's not like, you just cross the threshold. we've sort of, you now fall back automatically into this program. There's an administrative

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number of hurdles that are facing families that mean that you have to go through all this paperwork. Because again, I think to be fair, if it was a system where, hey, you are at this level, so now you're in this program, then you suddenly we moved you to this program because now your poverty level is X, then that'd be fine. But it's not every single time. It's more paperwork. It's back and forth on families that already have a lot of things to deal with. Exactly.

We saw Congress realize that that was such a waste of government funding, of time resources, and it was also hurting kids and families. And so they took action. now, earlier this year, beginning January 1st, 2024, all states are required to offer 12 months of coverage, regardless of changes in family circumstances, to any kid who enrolls in Medicaid and CHIP. And that means that if you enroll in CHIP on March 1st of 2024,

Even if your family takes an extra shift during the holidays and makes a little bit too much money in December so that your family income is a little bit too high, that kid is guaranteed to stay on chip through the end of February 2025. And then they will go through an eligibility check. And if the family's income has lowered again, then they can stay on. If the family's income has changed, if they have another source of coverage, they can move on to another source of coverage. But this really just reduces the churn and the administrative burdens as well as all of those

really difficult fluctuations for the family. That is great. So we are really thrilled about that. is in effect now. So beginning earlier this year, any kid who enrolls in Medicaid or CHIP has at least a year of coverage. And we also saw that during the pandemic, some of the states realized that this was actually offering a huge benefit that having even longer than one year of coverage was giving the families the security that they needed, was allowing the kids to be able to access the continuous.

care that they were going to benefit from to be able to reinforce the medical home, especially for kids with complex medical needs where they have more challenging needs that require sort of management over time where you really do want to make sure that you have solid care coordination, that you're not going through a lot of disruptions in terms of like what medications they're on, that management, what sort of technology needs they have, especially as they are growing and their technology needs evolve.

The Incubator (25:35.448)

keep that coverage consistent so that the families don't have to go through the jumping through a bunch of hoops just to be able to get the kids what they need. So we saw a couple of states, Oregon in particular was sort of the vanguard on this where they proposed Medicaid waiver. So Medicaid waivers are where a state says, hey, I have this really interesting idea, federal government, what do you think? How about if I try covering either this different population or offering these different services that Medicaid usually covers?

And I think I can do it in a budget neutral way. Like, what do you think? Can I move the money around a little bit differently to be able to try something new? And in this case, Oregon proposed to cover all children until their sixth birthday. So if you enroll in Medicaid or CHIP at any point before you turn six, Oregon will cover that kid until their sixth birthday, guaranteed, regardless of change in the family circumstance. A family, if something changes in the family gets employer sponsored coverage, they can disenroll the kid and say, actually, we don't need this anymore. We've got coverage through

my employer, but if they still need it, then they can rely on that Medicaid or CHIP coverage until the child's sixth birthday. And after that, Oregon is now providing two years of continuous coverage for anybody older than six. So if you enrolled as a newborn, if you enrolled at birth, then you'd be covered through your sixth birthday. And if you're still eligible when you turn six, then you'd be covered until you're eight. And if you're still eligible, then you're covered until you're 10 and all the way up until forever, until you die, as long as you need it.

And that was really, really innovative. We saw a few other states follow suit. Right now we have Oregon, Washington and New Mexico have already implemented multi -year continuous eligibility for kids. So they all have this in place already. And we have a bunch of states who are also in the process of either developing a waiver proposal or have asked for approval for the same kind of a multi -year continuous eligibility program for Medicaid or CHIP or both. And that's California, Colorado.

Minnesota, Illinois, Ohio, Pennsylvania, New York, DC, and North Carolina, just from West to East, not in any particular order of preference or chronology. Shadows cheering. I use cheering because people like this is just, so what I always talk about this whenever I have to do anything with Stephanie Glare, like Stephanie goes really high and talks about all of these amazing, like sort of high level things. But when Glare goes high, I go low, right? Because it just talks about my like specific

The Incubator (28:01.198)

sort of where we work. So just a couple of things for neonatologists to remember about, first of all, that was amazing. 60 something years of Medicaid history that I had to read multiple books and spend way too much time with Google to learn in just a few minutes is amazing. And I think it's important to remember that because when I talk to my fellows, we forget.

When the Affordable Care Act passed, which for me seems like yesterday, right? Cause I remember that vividly, our current fellows were 18 years old and probably not watching as much C -SPAN as I do now. Right? So, you know, they really have never fully understood sort of just how sweeping the ACA was. Right? You know, when, Stephanie talks about 4 .6 % of kids being uninsured in 2016, right? It takes about

five years from the passage of the bill in 2010, until a lot of these things become sort of baked into the cake, right? We just need to pause a second on that. That's the lowest number of uninsured kids ever in the United States. That's such an impressive number. Less than 5 % is insane. Insanely good. Yeah, and that's the lowest number since Eleanor Roosevelt said, you know, we should probably figure out how many kids can't get health insurance, right?

Now, in terms of Medicaid, though, we have to just a couple of other points for us as neonatologists, right? So, know, Stephanie talked about how almost more than 50 % of kids are covered by the Medicaid program, but 40 % of births are covered by Medicaid. But what's interesting is that as you get younger in gestational age, so you start looking at the late pretermers and then the very preterm kids, the percentage of births covered by Medicaid goes up.

So when we talk about our very preterms, our 23 -weekers or 22 -weekers, it's just weird to say 22 -weekers, but 22 -weekers or 25 -weekers, they're now slightly above 50 % of births. We also need to remember, we talk a lot about, and there are many other neonatologists who focus on equity, right? But when we talk about underrepresented minorities, African -American particularly, right? Two thirds of those births are in the Medicaid program and one third,

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compared to one third of people who are sort of non -Hispanic white. So there is a sort of Medicaid is really like a tool that we can use in terms of trying to create some equity within access and payment for healthcare, even if we're not obviously there in terms of the outcomes. And then the other piece that I want to remind people is that

You Medicaid for a lot of our kids is a safety net, even if you get employee sponsored insurance, depending on what state you live in. And Stephanie will look at me and I'm kind of trying to read her eyes in case I say something weird or, but, a lot of people have employee sponsored coverage that really isn't always sufficient, right? We call them the under insured. might have high cost shares, right? high cost shares, high co -pays, high deductibles. And you burn through those pretty quickly in the neonatal intensive care unit, right?

Yeah. So that's where in certain states and certain programs, Medicaid really comes in and really provides that that safety net. So we were talking about children with special health care needs. There's seven hundred thousand of those kids in the United States right now. And for those kids, Medicaid covers things like durable medical equipment. So think about all the kids you send home on nebulizers. Right. That's durable medical equipment that could be covered. Right.

it can cover a disposable medical supply. So when we send home kids who have colostomies, right, and need those colostomy bags and all the different catheters and the tubes and the feeds and all that equipment, right, that needs to go home with them. And then prescription medications, right, we all have had trouble finding prescription medications, especially medications that need to be compounded, that wind up becoming really expensive just because they happen to be in a form that a baby can take, right, concentrated and or compounded.

and they become inordinately more expensive and sometimes not even covered because they'll say, well, we covered the pill. Yeah, because the baby's going to take the pill, right? So, so Medicaid also can, can fill in those little coverage gaps. And those are for people who have employee sponsored insurance, right? So these are people who are not by definition poor or meet the Medicaid eligibility income threshold. These are people that are just like you and I, who just happen to have health insurance.

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that the employee offers that isn't really ideal for babies who have the healthcare needs of premature infants. And I think, know what, Shetal, I think what strikes me as one of the most compelling arguments for the discussion that we're having is that as neonatologists specifically in the NICU, we spend such a long amount of time working on discharge planning, making sure that say, hey, maybe we'll try to minimize

the number of appointments, because we know that there's so many subspecialists to follow up with. are so many, like you said, so many babies go home on medications with DME's and so on and so forth. And the thought that if the administrative stuff doesn't get cleared, that these children could basically have coverage dropped and now suddenly not have insurance and still be faced with the complexity of their medical needs and now have to find funds for this is completely

completely outrageous. so there's no reason why we would try to get, I don't know, to me, the typical example is us trying to get an echo before discharge so that we could say, Hey, maybe we can save them the appointment with a cardiologist. Cause it's like one more appointment. But can you imagine if they just lost coverage? How do you go to the ophthalmologist? How do you go to the GI? How do you go to pediatrician and how do you keep getting care for your baby?

And I think that in Florida, for example, where we're struggling with this, there's so many stories of parents with children and complex medical needs that have just lost coverage. And now they're saying, how are we going to afford the care of our son, of our daughter? And I think that's what's at stake. And so I think as neonatologists who are so concerned about long -term outcomes and a smooth transition home, this is right up our alley. So it's certainly, yeah.

Right. Well, I'll be, go ahead. No, I was going to say one of the other things I think is so kind of earth shattering when we talk about neonatology and our comp, the complex, type of care we're providing and we're sending out to the community is that like, everybody cares about the medical home, but so maybe prescriptions, maybe DME, but these kids are getting bounced in around between even their primary general pediatrician or, or medical home. And I'm wondering if you can maybe.

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quantify what that looks like because especially for these groups of kids that we are sending into the community, mean, that consistency is key to management of their long -term health needs. Yeah. Well, it falls into all of the sort of hidden healthcare that occurs once the kids leave the children's hospital or the NICU, right? If you leave and you have 12 months of coverage, right? Which, you know, we got in the Consolidated Appropriations Act, right? You have 12 months of continuous

Medicaid coverage. You're not going to know and oftentimes families don't even know that they've lost their coverage until their child is, you know, 13, 14, 15 months old and they're trying to renew a prescription and suddenly that prescription cost has gone up dramatically. And then when they find that out, who do they go to? They don't call us, right? They're now sort of somewhat disengaged from the NICU. They call their general pediatrician.

and the general pediatrician now has to work with them. There's a whole sort of opportunity. We were talking about the administrative burden and Ben was sort of talking about the administrative burden on the part of the state, right? The state has to re -verify all of this eligibility. was actually thinking of even both. I think from the parents as well. Absolutely. I'm terrible at filling out forms and I can understand the forms. don't know how, sometimes, I mean, my wife just gave birth. Sometimes I'm like, how do people even...

navigate this, I have medical knowledge and I'm lost. Birth aside, it's complicated for me to even renew my Netflix subscription and that's just pressing a button. mean, the point is that they wind up going to their general pediatricians and the general pediatricians essentially absorb all of this administrative cost, walking these families through re -enrollment, because they can't always do it for the family. Sometimes the family members need to physically be there. And there's a whole...

administrative burden and opportunity costs that's spent as our general pediatric offices essentially become de facto Medicaid re -enrollment centers for a lot of these patients. And this is something that eliminates that burden entirely. In terms of the preemie babies, let's just talk about what we're talking about, which is how much more our kids use these services.

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You we can talk about nebulizers and ostomies and all of that, all, we, all we want. It's also interesting that Ben mentioned Florida. There should be a whole incubator podcast on just Florida as Florida. you're probably right about that. But, there are some papers that say if you're born 23 to 26 weeks gestation, right? In that first year, you will have an average of nine prescriptions and almost 30 non

preventive care. So we're not talking about your general pediatric visits. That's 39, 29 extra visits per year. And if you add all of that up and exclude the index hospitalizations, we're not talking about the care that sort of we give them, right? It's a median of about 75 to $85 ,000 in extra care that's given in that first year. All right.

If you're born older than 26 weeks, it's about six prescriptions per year. And that number does drop dramatically, but still $35 ,000 in extra care in just that year. Right. But we're talking about continuous coverage, right? So let's talk about what happens in the second year, right? In the second year, former preemie babies still have up to two ER visits and one extra hospitalization on average. All right. Through the first two years of life.

All right. And again, like where is that payment coming from if they forgot to re -enroll or couldn't re -enroll or took that extra shift and now are no longer eligible? Right. So you heard me. Well, no one heard me because, but I was jumping up and down when we were talking a little bit about New York because we spent a lot of time on this in New York, talking to our legislators, having parents of premature babies talk.

to legislators about why this was so important and what they lost when their Medicaid coverage expired and they had to spend time re -enrolling. Cause it doesn't happen instantaneously, right? There's a period where they're not covered and what happened, they wound up getting hospitalized or they couldn't get a preventive care visit and then had to use the ER as a, for what would you and I would call urgent care or even modified preventive care. I'll remember in fellowship, had a baby with CHF that dropped coverage and then Lasix

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couldn't be refilled and the patient passed away, arrived in the ER too late. And it's like, this is the reality of when coverage gets dropped. I mean, I'm terrorized by this because when I did the morbidity mortality review, you're like, this, there's no way, right? There's no way that this is the cause of this. But in truth, yeah, the mother was expecting to be re -enrolled anytime and was going to refill the prescription. yeah, yeah, that was too, that's traumatized. I'm still traumatized by this, but this is really what's at stake.

If you're a neonatologist, there's no excuse or there's no reason for us spending so much time, money, energy, technology to resuscitate, let these babies have a chance at life, only to have an administrative wrinkle jeopardize everything six months, two years down the road. I mean, this feels so silly. I say this all the time and Stephanie's heard me say this. I think you guys heard me say this, right? Think about all of the time, effort and manpower. We spend too much time and too much effort.

getting these kids well, not to send them out of the NICU in an environment that is tailored to optimize their health, because that's the whole point. And if we don't consider that part of our responsibility as NICU people, I think the kids are somewhat ill -served. And it's very easy for us to say, let someone else do it. But there was a big difference going to, in my case, Albany, to talk about this.

with parents of former preemie babies, talking about former preemie babies, and going with the general pediatrician who was talking about how much extra time her staff spends helping these kids re -enroll. I was telling someone else that there was nowhere really for the legislator to go. If they wanted to talk about, well, it's too expensive, well, no, it's actually cost savings. well, this isn't the right thing to do. Tell that to the mother of the premature baby. That's not going to happen. well.

you know, it's a really easy re -enrollment. We'll tell that to the general pediatrician who works in, you know, up in upstate New York, who spends 20 % of her staff's administrative time re -enrolling and is now worried about whether she should even take Medicaid at all. Right. And then you lose another point of access to the entire healthcare system. Right. So we give it, we have a unique voice on this issue and we just need to use it more because, go ahead. No, I was going to say then to that end, I was going to ask Stephanie and you.

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So if one of our audience members is listening to this saying, right, how do I go? What is your recommendation Stephanie as to things that can be done at various level to actually maybe effectuate some change at someone's state level? There are so many options for helping make these policies work better. At the most local level, at your hospital, at your institution,

finding out if your institution participates in what's called presumptive eligibility is an incredibly great starting point. Presumptive eligibility is a policy that a state can choose, which allows a hospital and some other provider types, but especially hospitals to be able to say, we think it's most likely that this patient who has just shown up who doesn't have coverage is probably eligible for Medicaid. And we're going to call it presumptive eligibility, which means we're basically going to enroll them in provisional Medicaid while they go through the process of

the full paperwork check. And that means that for any preemie who shows up in your NICU on day one of life, the hospital can de facto enroll them in Medicaid so that that patient starts as a Medicaid enrollee. So that if there is a mother who is not covered, that they can also de facto enroll that mother in Medicaid so that they have wraparound coverage to support them through the rest of that hospitalization. And then to get them set up for that first year of coverage.

There's, in addition to the continuous enrollment for kids, which is in place now, there's also an option for states to provide 12 months of postpartum Medicaid coverage for birthing people who are enrolled in Medicaid at birth. And that is also really important. Before this option, Medicaid only covered the 60 days after birth, which doesn't even get folks through the six week checkup. And we know that that is a huge problem that we have a lot of really poor outcomes for folks in that first year.

post -birth and has a major impact on inter -pregnancy intervals, on inter -pregnancy health, on the health of future pregnancies, as well as on the health of the parent and the infant throughout their lifespan. But Congress made an option for states to be able to provide 12 months of coverage postpartum. And right now, it has seen a huge success. We have 45 states plus the District of Columbia who have all taken up this policy. So if you're in one of those holdout states, you can talk to your state policymakers about trying to get 12 months of postpartum coverage.

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enacted in your state. There also is a lot of opportunity to try to pick up and follow the lead of those other states that have taken up multi -year continuous eligibility. We do have, so far the model has been coverage through age six, which gets kids into kindergarten. So you know that they're getting those first six years of all the well child visits, all the preventive services, all the vaccines, as well as supporting the kids with complex medical needs through those early years of life.

But there are some states who've decided that that's too expensive or too complicated and they're looking at options to do coverage from zero to three. And right now we're at a place where any additional year of coverage, we will take it. So - going to ask why not longer, but I guess not. That's a great question. Right now we're going to take whatever we can to try to get kids and families coverage so that they have that certainty and that they have the ability to get the care that those kids need. The AAP issued our updated

policy statement, our sort of vision for Medicaid and CHIP last fall. And we do actually envision a situation in which we have all kids covered until age 26. So birth to 26, we would like kids to have continuous coverage. We don't think that there is utility in having kids drop on and off coverage, that that just disrupts their care and their ability to grow and thrive. So we're here for longer periods of coverage, but we'll definitely take longer than 12 months for now. How did the, not that I'm

arguing, but how did you come up with 26 years? That seems like an odd number. Yeah, especially here talking to some neonatologists. I'm 26 year old is sure a lot bigger than the 22 -week or 26 weeks and 26 years are pretty different. The Affordable Care Act established 26 is the age when young people are no longer eligible to be dependent on their parents for employer -sponsored insurance. They can no longer be a dependent there. And so we wanted to align so that

there's a consistent age of adulthood. I was thinking of the congenital heart patients, but that's not for that. It actually does. It would help a lot with a bunch of the transition issues where we have more and more people who are surviving with more complex medical needs out of childhood into adulthood. it would be really valuable to have more support for those folks as they age into more adulthood. Thank you for those.

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Well, this whole episode, I think, has been super educational. I especially like your tips about how people can get engaged and talking to their, you know, local state legislators thinking about this when we vote voting with kids in mind. And I wonder if people are not feeling brave enough to kind of get out there solo. How can they how can they get engaged with things that you guys are doing on a group level to

push forward these important goals. We have AAP chapters in every state. If you are not already a member of your state chapter, we would love for you to engage with them. There are really fabulous leaders, both professional staff leaders as well as really motivated pediatrician leaders in every state. And it's really easy to join those groups and be one of a crowd there.

If you want to take on a leadership role, there's an opportunity there and I'm sure Shetal can say more about what that has been like in New York. We also have, there's sort of some easier options with AAP. We have a federal advocacy action page where we will do most of the heavy lifting for you. We'll put together sort of a template letter to your policy makers that you can customize. You can add your name to it, but we'll make sure that it's easy for you to send an email over to your.

members of Congress directly to tell them what you need to have happen. And I think that there is sort of growing momentum with other stakeholders as well, where we have not only other specialty societies, right? We have ACOG, who's really interested in especially the postpartum piece, the family physicians have been a really incredible ally in both the continuous eligibility for kids and in the postpartum coverage section.

And we also have a lot of other groups that are really interested in making sure that this is working well. So anybody else who's engaged in child health, we're thinking about educators, we've been thinking about other community service providers, the child welfare system. We've seen some other really fascinating progress in making sure that coverage is working better for kids where they are engaged in the juvenile justice system. And we're trying to make sure that Medicaid is available to them to help support them as they transition back into the community. So there are...

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A lot of folks who are eager to partner on this, and there probably are lot of ways that you might not even think that you're ready to partner to get engaged.

I will say that the emails that the AAP sort of templates and allow you to send, it's not a click it and forget it kind of proposition, or at least it shouldn't be, right? There should be follow -up. The goal for you is to develop a relationship with your local congressional office, right? So send the letter and then a week later, call the office and say, you know, can we talk about this? Can we set up a time to talk about this or whom?

or who in the office is the point person and then email them and set up a time to talk about this. You don't have to be sort of an expert on Medicaid, right? People are going to listen to this whole episode and they're going to remember Ben talking about his congenital heart disease patient with Lasix. They might remember everything that Stephanie talked about from the unwinding and the postpartum coverage.

for a year or the requirement for 12 months, but they're have to rewind a couple of times to go over that. But they'll remember Ben talking about his patient. They'll remember us talking about all the kids we send home with nebulizers and with ostomy supplies, right? That's our lane, right? That's what we can provide that no one else can provide when we talk to these legislators. It doesn't have to

You don't have to know exactly how many patients are covered by Medicaid or what's going on. All you need to say is I'm an neonatologist. This is what I do. And then my patients have just the fact that they have the possibility to lose coverage is concerning enough for me. And let me tell you why. And I have a couple of patients who leave and are at extremely high risk. And if they lose their ability to get Lasix or their ability to get. Buddhism or their ability to, access an urgent care or.

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They're doomed, right? And that's really important for them to understand. And just so you know, if you are a young career and you're a neonatologist or a trainee, like this could be career defining as well. I mean, this is something that could be your lane, your path. like you said, the activation energy to begin is quite low. So I think that was very helpful.

Shetal - just one quick thing. If the chapter is a little intimidating for you, because I've actually had neonatal - which cracks me up because people hand us kids who aren't breathing every day. But apparently, going into a group of general pediatricians who know a lot more or seemingly might know a lot more about Medicaid stresses NICU people out, which I still don't fully understand. But if that is a barrier, we have our neonatal resources. We have our

are these one page summaries of what's going on. We have our neonatal advocacy committee. You can always learn about this stuff from us in a very NICU sort of focused way. So I just want to plug that out because I've had people come up to me and be like, I'm a little scared of the general pediatricians. I'm like, why? They're nice people, most of them. I'll try to post on the episode website the policy statement from the AP that you mentioned.

and we'll leave other resources for people who are interested. Stephanie, thank you so much for making the time to be on with us. Shetal, thank you again for facilitating these types of episodes. We are so proud to be able to tackle these subjects on the podcast and we're looking forward to more episodes on the subject. Thank you both for making the time to be on with us this morning.