Coverage Counts: Kids, Medicaid & CHIP

Join us to discuss the current state of Medicaid and children's healthcare coverage and how to advocate. Experts Leonardo Cuelllo, JD Research Professor at Georgetown University McCourt School of Public Policy’s Center for Children and Families, and Tamar Haro, former Senior Director of Federal & State Advocacy at the American Academy of Pediatrics, now at Haro Solutions join us. Resources, fact checks & policy watch links on Padlet.

Transcript

Speaker 0:03

Welcome to the Operation Advocacy Podcast. Improving the lives of children through simple conversations, a podcast produced by pediatric surgeons. Participants in this podcast are not speaking on behalf of any organization, society, or institution with which they may be affiliated. Comments and views shared are independently their own.

Dr. Grace Nicksa 0:20

Today's podcast is Coverage Counts: Kids, Medicaid, and CHIP. I'm Dr. Grace Nicksa, and I will be moderating today's podcast. I'm thrilled to be joined by Leonardo Cuello and Tamar Haro Harrow. Leo Cuello is an attorney who is a research professor at Georgetown University, McCourt School of Public Policy, Center for Children and Families. He loves all topics related to Medicaid, and his work has been focused on Medicaid, law, and policy for many decades. Tamar Harrow works at Haro Solutions, a boutique government affairs firm. She has spent more than 22 years working in healthcare policy in Washington, D.C. She has extensive expertise overseeing advocacy on federal and state legislation related to Medicaid. Welcome, Leo and Tamar to Operation Advocacy. I'd like to start by asking you if you can share a little bit about your backgrounds and what led you to pursue the career paths you both did.

Tamar Haro 1:21

Well, great. Well, thank you so much for having me here today, Dr. Nicksa. It's a pleasure to be with you, with your listeners, as well as with Leo. I'm looking forward to the conversation. So this month actually marks my 27th year in Washington, DC. I moved here right after school after spending some time here in the summer as a White House intern and doing presidential advance work to work in the administration and to work at a federal agency and really get to see how a large bureaucracy works. I spent some time there and then I went to Capitol Hill where I spent 10 years working for a couple different senators on some key pieces of health legislation, including the Affordable Care Act and a few other pieces of now law. But honestly, my true passion has always been in maternal and child health. So it was a no-brainer for me to move from Capitol Hill to doing advocacy and policy at the American Academy of Pediatrics, where I spent almost 15 years working with pediatricians, helping them be effective advocates on Capitol Hill and pushing for policies that make children healthier. And in the last year or so, I've transitioned into doing multi-client consulting. So I do a variety of services and work for clients, all centered around health care for low-income individuals.

Leo Cuello 2:38

Yeah, and for me, like Tamar, I want to also thank you for having me and all the work you all do. During uh law school, I worked my summers. That was in Philadelphia, Pennsylvania, and I worked at an organization called the Pennsylvania Health Law Project that represents families being denied Medicaid coverage. And we also did a lot of policy work with the state trying to improve the problems we were seeing the families deal with. So I worked there during law school and I stayed on after law school on a fellowship and ended up staying another six years. Then in 2009, I came to DC to work around the passage and then implementation of the Affordable Care Act. But all the while, my focus has really been the Medicaid side of things. And now I've been doing policy work with the Georgetown Center for Children and Families for the past five years. And at CCF, we have a fantastic team that tracks coverage for kids and their families, and we try to make sure the policy evidence is pushing the system forward, that our coverage programs are designed in ways that work for kids and for families and for their healthcare providers and are consistent with the policy evidence and the clinical evidence when relevant. When I represented families in Pennsylvania, I might have had a family with a child that was being denied some treatment prescribed by their doctor. Could have been a surgery. It was being denied by their Medicaid managed care organization. And I know a lot of physicians are listening. You know, I was that lawyer begging you to write a letter or submit some record or testify by phone at the hearing. And the pediatricians and all of the pediatric specialists, they always showed up. And I know you weren't paid for that. Um, and I know the Medicaid rates weren't great to begin with. So I'm so grateful uh for all of you and that dedication you bring to

Part 1: Children's Healthcare Coverage

Leo Cuello 4:32

these kids.

Dr. Grace Nicksa 4:32

We're really excited. It sounds like you guys are going to give us a lot of information and hopefully actions that we can take to help support our patients. So I would like to start by just saying that this podcast is going to be split in two for our listeners. So the first part is gonna talk a little bit more about Medicaid and the second portion about actions that we can take for our patients. Can you talk a little bit about the important role Medicaid plays, especially in the lives of children?

Leo Cuello 5:02

Yeah, so it's impossible to overstate the importance of Medicaid. Medicaid and chip are covering nearly half of the children in this country and over 40% of the births. Uh, in some states, it's more than half of the births. So if you just think about that, you walk past a playground and you see a bunch of kids playing there, about half of them, their births, their childhood, they have health insurance because of Medicaid and CHIP. And I want to underscore something really important about that that people often overlook. You know, obviously 50% just jumps out at you as a huge statistic. But you also have to remember who those kids are. Um, they are in many cases kids growing up in poverty who have a host of other challenges, right? Lead in their water, malnutrition, maybe they have seen uh gun violence in their community, their guardians may have very low health literacy. So Medicaid isn't just taking care of a randomly selected cohort of 50% of the kids in this country, right? These are often kids that have major life challenges that translate into major developmental or health challenges. And so Medicaid is filling an incredibly challenging void and is very specially designed to do that. The long-term impact of Medicaid and CHIP can be felt in our society as these kids become adults. I don't think I need to explain to most medical providers that if children have health care, they will live healthier. They'll be more likely to overcome developmental delay or have better controlled asthma, better management of behavioral health conditions, higher quality of life. But for kids, what people sometimes forget that also translates into school readiness. With Medicaid, you get higher high school graduation rates. Kids are more likely to graduate on time. They're more likely to enroll in college, more likely to graduate from college. And so that means that we end up with a generation of adults that is fully prepared to be our future doctors and our future engineers and our future leaders. So it's just so, so, so important.

Dr. Grace Nicksa 7:09

And there's a lot of changes that have been occurring, and we are hearing about this bill called HR1. Can you tell our audiences a little bit about what is HR1?

Leo Cuello 7:21

Sure. So HR1 is the legislation that passed in July of last year. It has many names: HR1, the One Big Beautiful Bill Act, the Budget Reconciliation Law. It's all the same thing. It was a broad law that did a lot of things and is incredibly consequential for Medicaid. It makes numerous changes to Medicaid law, some in effect already, others phasing in over the next three to four years. The Congressional Budget Office, CBO, estimated that HR1 will result in a cut of about a trillion dollars to Medicaid. And that is the largest cut in the history of the program and is predicted to result in 10 million people losing health coverage. That's about 7.5 million in Medicaid, 2.5 million in marketplaces, a smaller amount in Medicare. The other major contextual piece that we should overlay on that, which is also playing out right now, is that at the same time, Congress did not extend the enhanced subsidies that were in place for marketplaces. So it's estimated that four to five million more people will drop marketplace coverage for that reason. So a lot of challenges going on right now.

Dr. Grace Nicksa 8:35

Definitely sounds like at this point we're at a crucial turning point. And remind us why this coverage actually matters.

Leo Cuello 8:43

The United States is a coverage-based system for healthcare, right? There are not generally public hospitals in this country. Only extremely wealthy people will willingly choose to self-insure out of their own pocket, right? If you meet a Wall Street lawyer, they have health insurance, right? And there's a reason for that. Without coverage, people have much less access in this coverage. And we can actually see that in the data showing much lower utilization, including for basic preventive care among the uninsured. And of course, worse health comes associated with that. I think the critical fact that we really have to shine a light on and grapple with is that in our system, if we look at the workers that are below 200% of the federal poverty level, less than half of them are eligible for an insurance from their employer. So without these basic programs for kids, half of these kids in these families would have no coverage. And there's no way those families are going to pay for coverage out of pocket. No one does that in this country, much less people who are low who are low income, right? And so those people, if they don't have insurance, then they're stuck trying to find, you know, a public clinic that might do basic primary care on a low fee scale. And of course, they can use the ER when a problem gets totally out of control, but they're not going to have specialty care. They're not going to have, you know, advanced diagnostic testing. They're not going to have durable medical equipment. They're not going to have chronic care management. They're not going to get prescriptions. They're going to avoid the ER until things get really, really bad. And they're certainly not going to get all of the surgeries that they should be getting in the timeframe that they should be getting it. And one last thing that I'll just add is that it also means that uninsured adults who are sick are going to have trouble working. And many are going to run straight into medical debt, right? Either because they have trouble working or because they're uninsured and they can't pay for the care that they get at the ER. And that's the number one cause of bankruptcy in this country, right? This causes huge instability for families and their children. They skip groceries, they skip rent, they lose jobs, they lose housing. And it's a it can create a very challenging, harmful environment to raise a child or to be a child, right? So imagine that low-wage family, if they have Medicaid, they walk out of the ER totally stressed, but without a copay or with a very minimal copay. Without Medicaid, they would have a $30,000 bill for that appendectomy with minor complications, right? That's $30,000. That $30,000 might be more than their entire annual salary, right? So that's an existential difference for that family. And again, we're talking about working families.

Dr. Grace Nicksa 11:38

I mean, that just sounds unsurmountable for those individuals that don't have access to care. And so how are we filling that gap that for the half that don't get coverage currently and then going forward?

Leo Cuello 11:51

Right. So I mean, this is where the public programs become so important, right? And we kind of have a net of public programs, um, and they're covering a lot of people when you add it up, almost half of the people in this country. You've got, you know, the lowest income families being covered by Medicaid. Then you have CHIP, the children's health insurance program, covering a slightly higher tier of families just above the Medicaid cutoffs. And then the families that are above that can go into the marketplace where they can get subsidies if they are low to middle income. And then, of course, we also have the Medicare program providing coverage for seniors. And I just want to flag that even within Medicare, about a fifth of the Medicare population are low-income seniors who rely on Medicaid to actually reduce the cost sharing and premiums associated with their Medicare coverage, right? So that suite of public programs is what is stepping in and really covering half of the people in this country that are are not, we're not able to cover through the employer system.

Dr. Grace Nicksa 12:57

It does sound like it becomes a lot more complex, especially when we're talking about Medicaid. And you had talked a little bit about what it means to have Medicaid being tailored. So what do you mean by that? Like Medicaid is tailored to the needs.

Leo Cuello 13:12

And this is one of the most important things to understand about Medicaid, because it's not just the number of people the program covers, it's what it does for them. So the Medicaid population is low income. In some cases, um, has special needs. So the insurance is doing special things. And in some cases, it's just straight up filling a national void. Probably the most significant financial and structural thing people don't understand is that for many, many people who need institutional level care and can't afford it, that's Medicaid. Seniors in poverty who need nursing homes, people of all ages with intellectual disabilities who need facility-based care, children with behavioral health issues who need facility-based care. Medicaid is our national solution for all of those problems. Medicaid also has, for example, very strict limits on cost sharing for medical services, and premiums are generally not allowed for the obvious reason that if if you have a $300 a month premium or $50 co-pays for services, it's just not going to work for these low-income families. Medicaid also covers transportation, including for non-emergency care, because that is a big barrier for low-income people, right? Most employment insurances don't have that. And a really, really important thing for providers to know about, and specifically pediatric providers, is the Medicaid early periodic screening diagnostic and treatment benefit. It's a long acronym, EPSDT. All of the words actually have a lot of meaning, but you don't have to learn the whole acronym. Maybe we could just talk a little bit about what it

EPSDT (Early and Periodic Screening, Diagnostic, and Treatment)

Leo Cuello 14:44

is.

Dr. Grace Nicksa 14:44

That would be great. So for our listeners, can you remind us a little bit about what this is and what it covers and how it actually plays a role, probably in our daily lives?

Leo Cuello 14:54

So EPSDT is Medicaid's benefit for children. And it's really a gold star standard. Um, it's five-star coverage when it's done right and enforced. So I could talk about EPSDT for hours. It's one of my favorite things to talk about, but I want to just pull out two basic pillars that will give you a good understanding of what it's trying to do. First, from a system point of view, the theory of EPSDT is if we have these kids in poverty with all of these complicating factors, right? There might be malnutrition, there might be housing insecurity, et cetera. We want to be proactive about monitoring them. So there is going to be, there is a periodicity schedule in every state, and we're going to make sure that we check this kid and do screenings at, you know, five days, one month, two months, four months, six months, nine months, et cetera. And we're going to use formal screening tools. And when we get positives on screenings, we are going to refer to diagnostic and we're going to cover that. And when diagnostic comes back telling us there's something here, then treatment is going to be prescribed and happened. And so we're monitoring these kids. And when a kid falls off the expected developmental trajectory, we're going to figure it out quickly. We're going to get them back on track to the best of our ability and their ability, whatever their capacity may be. And so we're going to catch that heart defect early, right? We're going to catch scoliosis. And kids are going to get the diagnostic, they're going to get the treatment that will ultimately lead to the right surgery they might need or whatever. So that's the system level. From the practice point of view, is the second pillar. And this is really important to a medical provider. And it's very, it was very important to me as a lawyer representing families against an insurer or state trying to deny, you know, a surgery you might have prescribed for them. Under APSDT, children must get any medically necessary service within the Medicaid universe. So states have a lot of discretion and flexibility in what Medicaid services they cover for adults. They don't have to cover every service for adults. Sometimes they place caps on services, all kinds of limits on services. For kids, there always, always has to be an exception to get the service if medically necessary. And so what this means is that Medicaid kids truly can get an incredible range of services that might not even be available under fancy employment insurances. And this is particularly true for, say, autism or mental health or topics that are cutting edge or sometimes expensive that other insurances don't want to cover, like hearing loss surgery or implants, things like cleft palate, scoliosis, vision-related corrective surgeries that might be denied as elective for adults. State Medicaid programs are going to be and managed care organizations, they might not want to go there, right? But for kids using EPSDT, we can actually make that happen. Now I want to be clear what I just described is not the actual reality on the ground everywhere, but that is the law everywhere. Those outcomes are possible everywhere. It's a place where advocacy, understanding how you can help patients, understanding systemic advocacy, connections to informed advocates can make a real difference.

Dr. Grace Nicksa 18:28

So some states may cover some of these services, whereas other states have limited them, or they it's just not on the docket to be covered.

Leo Cuello 18:38

So again, for adults, states have to offer a benefits package that reasonably achieves its purpose. That does not mean you have to cover every single service. So for an adult in Medicaid, you might not get every single service. And in particular, for example, right, if the state says for 95% of adults, two of these treatments a year is a reasonable amount. When you're an adult and you need number three, there's nothing to do. If you're a kid and you need number three, as long as the provider is willing to step forward and say, you know what, treatment number three is medically necessary for this child, EPSDT overrides, it trumps, it defeats the normal state limits and discretion to limit services. And so where providers will often run into this is um in the managed care context in Medicaid, where the managed care plan will tell you there is some coverage limit. And so the answer to that is number one, yes, the plan can have a prior authorization process, for example, right? They can do things to try and create system defaults in coverage. But for kids, due to EPSDT, that system default always has to have an override for a service that is in the Medicaid universe of potentially coverable services, right? So this is an incredibly valuable tool, and it's why um some cutting-edge things can happen in Medicaid that don't happen even in private, fancy private coverage.

What is Currently Happening with Medicaid Coverage?

Dr. Grace Nicksa 20:21

We've come a long way so far with discussions on where we are, and I'd love to know a little bit more about what's going on currently in the US. So Medicaid's been in the news a lot, and I'm wondering what's currently happening with the Medicaid coverage for kids and some of the changes that we're seeing.

Leo Cuello 20:39

Yeah, so we are in a very particular moment. I will call it a moment of great uncertainty, a moment of great concern for children's coverage. To be honest, myself and my colleagues, uh, we are very worried. Um, and I'll try and explain how we got to this precarious uh moment that we find ourselves in. If we take a lot of steps back and look at a very macro timeline, we can start with actually some really great news. In the 20 years, from the mid-1990s to the mid-uh 20 teens, so to 2016, we saw incredible and remarkably consistent progress in children's coverage. We went from 15% of kids uninsured in the mid-1990s to dropping below 5% for the first time ever in 2016. Uh, and the graph in that time range is incredible. It's a slow, steady progress every single year without fail. It's the happiest graph you can imagine. Like on a day where I'm sad, I just pull up that graph, right? It's just amazing. Um, and and I want to highlight for everybody, because I think it's really important that those years, um, those take you through Republican presidents and Democratic presidents, and they take you through Democratic Congresses and Republican Congresses, right? This is a national bipartisan success story. We went from 15% to below 5%. And then from 2017 to 2019, you know, for the first time in 20 years, for three years in a row, every year the number went the wrong way to a statistically significant degree. And so we went from below 5% to back up to almost 6%. The pandemic then happened, and we have a lot of instability in the data. So it swings up and down. But we came out of it right here at 6% still. And so the story of what happened in 2017 is not that anyone was targeting children per se, but there was a combination of policies that hurt coverage at the family level. And we know from the data that every time you do that, it impacts the kids. The administration, you know, reduced enrollment windows, we decreased funding for healthcare navigators, we reduced outreach, we put up some extra barriers to enrollment and renewal in all of that stuff added up for families. And the concern we are seeing is that a lot of those things are being done again right now or being proposed again right now. And so we have this concern that coverage is going to move the wrong way for kids. And in fact, I'm quite certain that the uninsurance rate for kids is going to spike in a way we we literally have not seen in the last 35 years. So that's very heartbreaking for us. There's good news too. If you want to do some good news too.

Dr. Grace Nicksa 23:38

So let's talk a little bit how that pandemic impacted coverage and how do we come out of the pandemic?

Leo Cuello 23:44

The chief thing that happened during the pandemic is Congress passed a continuous coverage requirement. Basically saying, you know what, during this pandemic, nobody can be terminated from their public health programs. So all of the kids who at every annual renewal get dumped by the program because there are paperwork problems or documentation problems, et cetera. And that's what terminates a lot of kids. All those kids stayed in the program. And so we saw the rates improve. And then when that continuous coverage period ended, the rates dropped right back down to that six percent place that we're at. You know, the pandemic sort of created this wave up and down of coverage. But I do think we also got a fair amount of you know pent-up demand from the pandemic because there were a lot of kids going through a lot of things. More mental health, behavioral health issues popped up during that time. So I do think we also have sort of a cohort of children that has some more needs.

Dr. Grace Nicksa 24:44

Leo, you mentioned there's some positive um aspects that have come out with the after the pandemic. Can you talk a little bit more about those?

Leo Cuello 24:53

Yeah, so we we did have some silver linings to the pandemic. And the really big one is that in the last few years, we've seen the development of some new policies that might be the keys to future success. As I hinted at earlier, one of the reasons we struggle to get kids on insurance rate to zero, even though we have programs where they should all fit, is that if you think of the program as a bag of grain, right? We're scooping kids into the program, but the bag has a hole in the bottom and kids are leaking out. And we scoop new kids in, but at the same time, current kids are dropping out. And so that bag never fills. We never get all the kids covered. And we know the vast majority of kids who fall out, it's because they get dropped due to excessive renewal policies. For example, imagine a family that one month, uh, say, you know, December holiday season, dad picks up some extra shifts at the um Amazon warehouse or the Walmart warehouse. And in that one month, family income goes up. And so the kid gets dropped from Medicaid just because of that one month. Um and so in 2023, Congress passed a law uh that started in 2024, and and that's what we call continuous eligibility. And what it says is that kids, once they get into Medicaid, their coverage gets locked in for the full year. So that mid-year fluctuation, that random month where income changes, we're not gonna cancel a kid's health insurance because family income changed one month. And we even so so that passed as law. So so that's huge. But we even had upwards of 10 states implement temporary pilot programs to do multi-year continuous eligibility where the kids would get continuous eligibility from birth until age six, age six being sort of when they start school and you can sort of start tracking them through school. And so what that means is that not only are families protected from that, you know, one month where their income goes up, but they also get protected from getting dumped at the annual renewal, which is a major driver of coverage loss. And I think this is really huge. It's the future of kids' coverage, um, it's the way that we actually could get that uninsurance rate down to zero with those kinds of policies. Um right now, the administration has said they're not going to approve any more of those multi-year pilots. Um, and they might let the current ones that are approved expire in the coming years. So we're waiting to see what happens with that. But we can sort of see the path ahead of us for kids' coverage. Um, we're gonna take several steps backward before that step forward. We have storm clouds on the horizon, but I think we also have on the drawing board the idea for how we can really solve kids' coverage.

Part 2: Advocacy & Kid's Healthcare

Dr. Grace Nicksa 27:50

I'm excited to hear more about this. So we're now gonna transition into part two, and we will start off by talking a little bit about what's happening right now and what's coming next, and what has Congress been doing and what's the outlook. Tamar, can you talk a little bit more about um what's going on and some of the implications for both children and providers?

Tamar Haro 28:16

Sure. So Congress passed HR1. We're coming up actually on a year anniversary of its passage. It's HR1, sometimes called the One Big Beautiful Bill Act, a very large piece of legislation with a lot of implications for healthcare, for the economy. At a high level, the bill now law permanently extends the 2017 tax cuts and partially offsets the spending for that by enacting a number of changes that will reduce healthcare spending, it will reduce spending on uh SNAP, the food assistance program, and increases significantly spending on immigration enforcement. For purposes of this conversation, though, I want to focus on the healthcare provisions. And, you know, according to the nonpartisan Congressional Budget Office, they estimate that we will see over a trillion dollars in net Medicaid, chip, and Affordable Care Act marketplace cuts over 10 years, which will increase the number of uninsured individuals by about 10 million over 10 years. One thing to note, although I know I don't think we're going to talk too much about it today, but just to note that the Affordable Care Act, one of the things that the bill did not do, which is partially responsible for some of the increases in the uninsured rate, is that it does not extend the enhanced premium tax credits that were passed as we were coming out of the COVID-19 pandemic. And so that took effect this year, and we are seeing the implications of that throughout the country with uh decreases in enrollment in affordable care act plans throughout the country. But look forward to talking a little bit more about those Medicaid provisions uh in a minute.

Dr. Grace Nicksa 29:57

You mentioned SNAP. Can you tell our listeners what that stands for?

Tamar Haro 29:59

Oh, sure. I know we I just uh violated the rule of no acronyms here. We are in Alphabet Soup here in Washington. It's uh the SNAP program, also known as Food Stamps. It stands for the Supplemental Nutrition Assistance Program. And changes to SNAP in the bill, much like the Medicaid ones, really represent a cost shift from the federal government to state government. So states are already facing really important fiscal implications from HR1 and having to do things like new cost sharing or higher administrative costs for these programs. And so that is partially why we're seeing some of the decisions that states are making right now to fill these budget holes.

Dr. Grace Nicksa 30:43

I know that we've already talked a lot about Congress's agenda, but are there things we have not talked about?

Tamar Haro 30:49

It's an interesting time as we are in a midterm uh election year, and the closer we get to that, the harder it is to pass legislation in Congress. And that's a historical trend. Um, and you layer on top of that the fact that this has been a time where we've seen relatively fewer laws enacted in in our recent history. Um, that trend started in the last Congress, the 118th Congress. We're currently in the 119th Congress. So we've only seen a total of 98 laws passed by Congress in the 119th, and that is on a downward trend, which means it just becomes that much harder to get laws enacted. A reason for that is very tight margins for the majority party in the House and the Senate, uh, which makes it harder to get legislation through. There are a lot of ambitious plans for the remainder of this year, having said all of that. Um, one of the big things that Congress tries to do every year is pass an annual appropriations set of bills. Uh so for the year ahead, it's uh for fiscal year 2027. Uh, work is ongoing in the House right now to move various spending bills. The Senate is a little further behind them on that. Congress needs to do something by September 30th. Otherwise, we'll see a government shutdown if there isn't an extension of current funding levels. We are also hearing talk about a potential third budget reconciliation bill. So uh when I refer to HR1 before, that was uh budget reconciliation 1.0. Congress just enacted 2.0, which uh doesn't have direct implications for healthcare. It's more about spending for immigration enforcement. But budget reconciliation 3.0 is a very real possibility. There's a lot of push, particularly coming from the House of Representatives, to enact another bill that would have implications for healthcare. We don't know the exact uh details of that, but there's a lot of conversation about tackling uh waste, fraud, and abuse in various federal programs, including Medicaid and Medicare. So that is also a possibility this year.

Dr. Grace Nicksa 32:57

Wow. There's a lot on the docket, it sounds like, for them to uh try to get through. Can you give us a little insight on how the states are likely to respond to the cuts in Medicaid at the federal level?

Tamar Haro 33:08

Well, this is a tricky position for states, uh, without question. You know, states, unlike the federal government, have to pass a balanced budget. So they are looking at their spreadsheets and looking at a huge loss of federal revenue coming their way because of HR1. So among the options that advocates for Medicaid and children should be kind of keeping an eye on, are look at cutting or limiting benefits within Medicaid that are considered optional. They can look at cutting provider payment rates, as we've definitely seen states do that in the past. They could think about closing or capping eligibility for Medicaid or imposing kind of red tape types of bureaucratic policies that make it harder for people to enroll or stay enrolled. They can think about increasing out-of-pocket costs for enrollees. And then on the flip side, some states are looking at ways to boost their revenues. This is by no means an easy effort, but I would just note that there are two ballot initiatives very recently that passed in the state of California, most recently in Los Angeles County, to increase the sales tax in order to offset spending, particularly for safety net providers. And then I think the other thing to look at is just how states are going to potentially reduce spending in other parts of the budget or even enact cuts to programs that may be popular and folks who are listening may benefit from. So it's not a lot of great options, I'm gonna admit.

Advocating with Limited Time Even if You Have Just 5 Minutes

Dr. Grace Nicksa 34:42

Can you give our listeners some suggestions on ways they can advocate for their patients, even if they don't have a lot of time?

Tamar Haro 34:49

Sure. Well, this is probably my favorite thing to talk to uh pediatric providers about is thinking about, and and look, and I know you are very busy, and your ability to engage beyond the clinic walls is probably very limited. Um, but I just wanted to give you a few ideas, even if you have very limited time of ways to really harness your power, your voice, your expertise as physicians, as surgeons, as provider, pediatric providers. If you only have a few minutes to engage, if you aren't already receiving, I encourage you to sign up for advocacy auction alerts from professional organizations that you are a member of. I'm thinking about the American Academy of Pediatrics, the American College of Surgeons, the American Medical Association, or their state affiliates where you live, and think about responding to one of those action alerts. Usually those organizations make it very user-friendly and a very quick process to be able to just click on an email, open it up, and then send it directly to your member of Congress on an important issue that's moving. You might think about a story you read recently or a headline that really moved you and what you might do about it. Same goes for thinking about a patient case you had. If you think about, you know, kind of the circumstances that led to that case being in front of you, and think about how that public policy impacted it, whether it's you know product safety or firearms or frankly not having a surgical device that was appropriate for use in a child, and and then think about what organization is doing advocacy around that issue and sign up for their newsletter or get on their uh lister so that you can be become aware of opportunities for advocacy. Uh and then most importantly, you know, because uh we have national elections and local elections that happen throughout the year, uh just make sure you vote kids.

Dr. Grace Nicksa 36:49

And what about contacting our representatives?

Tamar Haro 36:52

Great. Well, if you have a little more time, I think it can be very effective to look into attending your local, state, or federal representatives, town hall meetings, or try to get a meeting with them in their district office. Every member of Congress has a district office or multiple district offices, and um they have they are staffed by staff who are there to meet with constituents, and so that's that's one thing to think it's a lot more local and accessible than coming to Washington, D.C. If you are employed in a hospital, get to know your government relations staff. I think that's a really key one because the government relations office for your institution is typically the main entry point for federal, state, local elected officials. And so making sure you're on their radar, making sure that if you are interested in advocacy, they'll they know they have you on speed dial so that you can be called upon when that member of Congress comes to visit your institution. Or if you are the beneficiary of a grant program from the federal government at your institution, it's really important for your government relations staff to know about that program and know why it's important to you so they can hopefully add it to the advocacy uh priorities that they engage in. If you like to write, think about writing an op-ed or a letter to the editor. If you read an article that really uh inspires you, think about writing a letter to the editor. And most of your the professional organizations are there to help their members, both with the drafting of those as well as helping to pitch and get them placed.

Dr. Grace Nicksa 38:31

Thank you. I'm not sure a lot of our listeners are aware of the hospital's government relations staff. So I think that's a great resource for providers to be able to reach out to become involved.

Tamar Haro 38:42

Yeah. You know, and if you have a little more time, I always say it's it's a wonderful experience to come here to Washington, DC. Uh, there's really nothing like it. All of the professional organizations that I mentioned before all have fly-in days. Many have a combination of training on skills, training on issues, and most of them culminate with going to your actual elected member of Congress's office on Capitol Hill to talk about an issue that's uh relevant to your profession. Also, most of those organizations with state chapters also do something similar at the state capitol. So I think those do take a little more time, and so this is definitely an investment. I often hear from folks that do these how inspiring and fun, and how nice it is to step away from the clinic for a couple days to engage and see government in action.

Tips for Success: Meeting with a Representative, Senator, or Congressional Staffer

Dr. Grace Nicksa 39:35

Well, I guess that brings me to given your time on Capitol Hill as a staffer and your time teaching advocacy to pediatricians, what tips can you offer pediatric surgeons for having a successful meeting with a member of Congress or their staff?

Tamar Haro 39:51

I love this question because I've sat on both sides of it. I've sat as the staffer receiving information from a constituent, and I've also done uh lobbying and training physicians to do lobbying. So a few thoughts to leave your listeners with is to always be prepared. I think in knowing who your audience is is critically important. So uh ways to kind of figure out where your member or the staff person may be on a particular issue, a good place to look is the member's website and to kind of take a look at their press releases, see the types of press releases they've been putting out because that's an indication of that member's priorities. And maybe it isn't healthcare. So you're gonna go in maybe having to do a little more educating on some of the basics, or maybe it is, and so it's important for you to go in if the member has been supporting something already that you're going in to talk about, start with a thank you. Talk about the impact that that person's vote or the bill they introduced, how that is important to the care and to your to the care you give and the patients that you see. And then also if that member has voted in a way that you don't support, it's really important to be educated on that and think about the language you might use. Because I say every one of these conversations and meetings is the start of a relationship. You may not agree on everything, but it's really important to go in as a constituent to provide your perspective and to also explore where you might find areas of agreement, even if it's not the exact issue that you're in there to talk about. Having clear asks, though, I think is about the most important piece of advice I would give, which is that that staffer, when you leave the meeting, that staffer should know exactly why you came in and what exactly you want their boss to do. Because if they can't know that and they don't know that, that is an incredibly missed opportunity. So make sure that you start with your ask and you end with your ask. And then the last thing I would say is that follow-up really matters. So I am a big fan of the thank you note. It's hard to do those handwritten nowadays. So email is fine. And it's also an opportunity to both ensure that you're getting that staffer's email and providing them with your contact information so that if they have follow-up or want to engage you down the road, they know how to do that. But it also enables you to get their cards so you have their email and you can send a thank you and then reiterate your asks when you send a thank you.

Dr. Grace Nicksa 42:19

Now, Congress is of course only one of the three branches of the federal government. So I know there's advocacy work that we can also do with the executive and judicial branches. Can you share briefly your thoughts on that?

Tamar Haro 42:33

I think people oftentimes, you know, they think about engaging with lawmakers and they they really think about the legislative branch, and I understand that. But we do have two other branches of government where advocacy can be very effective and needed, especially lending your expertise as medical and scientific experts. So in the executive branch, you know, there's so many policies that come out of the executive branch. They oftentimes start at a federal agency like the one where I worked, and then they make their way all the way up to the White House before getting published in the Federal Register. Oftentimes those rules usually are open for public comment before they become final. So that is really critical. And those comments become part of the administrative record. And so those are really important, both for the agencies that are seeking to finalize the rules, and then ultimately, if those rules are challenged and wind up in court, the judges in those cases oftentimes look at the comments that were submitted. So even if your comment doesn't change the outcome of the rule, it can still have an impact as part of the administrative record for the courts down the road. So highly encourage consideration of participation in that. And many professional organizations will provide templates so you don't have to know exactly how to. Submit it or what to say all on your own. Usually, you know, the organizations that you might already be a part of, whether it's the American Academy of Pediatrics or the American Medical Association or the American College of Surgeons, will already kind of do the hard legwork of putting together a template that you can then personalize based on your expertise and your patients. And then switching to the judicial branch, just very briefly, obviously, if you are not a party to a lawsuit, there are more limited options for engagement. But one of the things I've seen very done very effectively by professional medical organizations is engaging in the filing or signing on to of an amicus brief or a friend of the court brief. And that can be an impactful way for physicians and organizations to ensure that their expertise is heard in the court, even if they aren't one of the two members of the lawsuits.

Dr. Grace Nicksa 44:56

I'm going to move on to a couple questions we had from our listeners. This is for both of you. And these were questions about Medicaid. This one's about Medicaid and chip. Are Medicaid and chip eligibility thresholds truly aligned with the cost of living in high-cost states, or are large numbers of near poor families still falling through the cracks?

Leo Cuello 45:21

This is certainly one I can chime in on. We have some great news for kids in the Medicaid world. I will tell you some of the income limits for adults are preposterously low in some places. But for kids, we have had great success over the years. And again, that's because healthcare for kids is a bipartisan issue. And in red states and in blue states, you can get legislators to set high income limits for the program. So almost all of the states are up to 200% of the poverty level for Medicaid. And they are layering chip on top of that, where the average goes up to something in the range of uh 255, but you have some states going up as high as three or 400 for their chip. So the short answer is families that are just above the poverty level, their kids are going to be eligible for Medicaid in every state. And their kids, even if they're quite above that, are still very possibly going to be eligible for chip. The parents in the family might not have coverage. And as we said, that has huge implications for the economic security of that family, right? So if the parent is uninsured and because of that, the family ends up homeless because they can't, because they have a medical bankruptcy and can't make rent, then yes, that that child has a health insurance, but they're also living in a car, right? And so you have a whole bunch of bad outcomes related to what is happening at the family level, right? I always remind people kids live in families, right? They're not little automatons that are out there. Um the bad news is, even though we have these amazing income limits for children, we still have a lot of policies that make it really hard for those low-income families to keep their kids enrolled. Um, and so that's why we have this persistent um uninsurance rate for children that even though for many of these kids there is a program, we can't seem to keep them in the program. Um, and so that's why we really need to work on smart policies to help retain their coverage. And let's just get them in and keep them in, right?

Dr. Grace Nicksa 47:42

Thank you. I have a question from one of our listeners about HR1 and children's best health care, which provides specialized, holistic, and family-centered medical care and what states can do if there are federal cuts.

Tamar Haro 47:55

Yeah. So I think this is where advocacy uh and relationship development is really critical. As I mentioned before, states are going to be faced with some really tough decisions based on their budgets because of the cuts coming to them from HR one. And so now is a really good time to be working in coalition with other partners and getting to know the staff that work in your state Medicaid office. These are very hardworking folks that are administering very large programs in most cases and have a lot coming their way. Um at the current moment, and I'm happy to talk more about this, but those staff are dealing with many things, but especially the implementation of the new Medicaid work requirement and some new guidance that just came out of the federal government that is going to cause a lot of changes to systems that they've built. So at the current moment, many Medicaid staff are really dealing with the aftermath of the federal government's latest thinking on the work requirements. So it is an important time to really shore up education and to do that as much as you can in coalition and partnership with others so that you can hopefully persuade the Medicaid staff to not put children's benefits in the crosshairs as they're trying to make these really difficult coverage decisions.

Universal Healthcare for Kids

Dr. Grace Nicksa 49:21

Which brings me to what are both of your thoughts on is it time for a universal children's coverage program that eliminates Medicaid and chip fragmentation?

Leo Cuello 49:32

I t's challenging to think of how it happens outside of the context of our sort of current universe, right? So our current universe is half of half of the people in this country are getting insurance through their work, and that's a lot of kids who are getting coverage that their families are happy with, right? So um I don't think we're gonna upend that anytime soon. Um we have the programs, right? We have Medicaid, we have chip. Uh the the one group you can kind of you know put a pin in is the question of immigration status, right? Because as Tamara was talking about, there are some immigration statuses that are not eligible for for Medicaid and chip. And so what happens to those kids is a big question, Mark. But if if you look at the kids that have a qualifying immigration status, right, um Medicaid and chip income limits go up quite high. Um, so there we have a home, we have a health answer for these kids. We're just not making that answer workable. Um, so what does it look like? What it looks like, and this is sort of what we have um suggested as the policy concept, is when kids are born, they are enrolled into Medicaid, regardless of their income. Their parents have an employment insurance, great, that insurance is the primary insurance, it's gonna pay for everything. Medicaid doesn't do anything for that kid, it's just background music that's not doing anything. But when that kid whose family has an employment insurance, when mom or dad loses their job and suddenly they're low income, and the primary employment insurance disappears, the Medicaid insurance is already on. It's there, it's ready to go. So there's no breakup in their coverage. And the kids are covered continuously from birth until they turn, you know, whatever age, let's say 21. Um, and so what that means is you don't have the annual renewal problems. You don't have the problem of the family's income changing mid-month. Um, it's you know, it's kind of a pay and chase model. People get health care, and then we sort out who pays for it. And if there is an employer insurance, they pay. And if there isn't, then the public program pays. And which exactly which pro public program, right? We don't care. We'll we'll we'll we'll sort that out, right? That is what the model looks like to make sure that kids have coverage the whole way through. And I'll tell you one thing that will just kind of blow your mind. Um, uh I've I have been a practicing right um attorney most of my career. And so I'm more new in the world of working at a university, um, but I I meet a lot of um international healthcare people now who I talk to. And when you talk to somebody from one of these countries that actually does get a hundred percent of their population covered, they can't even understand the concept of eligible but not enrolled. It does it doesn't even exist in their systems that there could be a person who, yes, they qualify for this for the government to provide their health insurance. They just happen to not be in a status that allows them to get that coverage, right? It's it's like talking to a fish about what it's like to live outside of water. They just don't even, they can't even conceive of what it's like. We need to get to the point in our country where for our children, where it's eligible but unin unenrolled, doesn't even make sense for a kid, right? Let's let's let's design the system to bring them all in at birth, keep guarantee that they have a source of coverage the whole way through, and when primary coverage drops, we always have a backup. And once we do that, then tomorrow and I can spend our time figuring out how we make sure kids get all the services they should have while they're covered, and spend instead of spending all of our time spinning our wheels about these kids who are constantly dropping off of coverage, right? It just makes no sense. And obviously, for providers, you know, um, when it's one in 20 kids who are uninsured, that's one in 20 kids who show up to their appointment. And the last time you saw them, they had insurance, and this time they don't, right? And now you can't see them, and the front office has to make all these calls, and they have to come back on another day, and their treatment gets disrupted, and all of these problems happen, right? It's it's an inane system that should not exist for kids that way.

Dr. Grace Nicksa 54:28

Finally, I would love for each of you to share your top three takeaway points with our listeners.

Leo Cuello 54:34

I would like to close just reminding providers that there are a lot of ways to be involved and a lot of ways to get involved. Um, you know, if you can only get involved at the level of your patients, learning a little bit more about the rules of Medicaid and how you can advocate for your patients and get them the care they're entitled to, then bless you. Thank you. We appreciate you. You know, even that is you going above and beyond your job description to help kids. Um, but if you can do more than that, then there are a lot of ways to get involved, right? You can um work with provider associations at the state level to influence how states run their program. A lot of really consequential decisions get made by the states and you can influence that process. You can be a watchdog um talking to advocates um about the you know naughty things that you see managed care plans doing. Um, you know, so when someone like me tells you here's what the rules are supposed to be like, and then you see managed care plans are not doing that, right? You can be the person that goes to those advocates in your state and says, hey, this is what we're seeing, what can be done about it. Um and and those advocates might go to town on that issue with your help. Uh another really important role is that you can help improve the policies and practices of the hospitals that you work in. Um this is a really important way that doctors can be involved in ways that are supportive because hospitals, um other practice-level um institutions often have policies that the people who are making those decisions don't understand how they impact patients. Um, and and you can actually be a big part of that. You know, Tamar talked about um access to care for immigrants. That's a great example. Um the way that an emergency room, the way that a hospital talks to immigrants has massively outcome-determinative impact on whether those immigrants stay to keep to get care or just turn around and walk right out of the emergency room, right? Because they're fair afraid. Um so there are a lot of ways that you can influence policy that that impacts things. You can also be a public spokesperson for the um interests of your patients, right? When a state proposes a bad policy or somebody proposes a good one, um, you can speak publicly about um, you don't have to take a position on legislation per se. You can just say, here's how this is going to impact patients based on what I see as a provider. And I think providers often underestimate their importance. You know, I'm somebody who makes a lot of public statements, uh, but guess what? There are a lot of people who don't trust me the way they trust you as a provider. You know, I'm a lawyer. That's strike one right there. Um that might even be a strikeout right there. Um I'm perceived as an advocate. Um, and some people think I have, you know, some agenda, right? I'm I'm trying to follow the evidence to get care for people, but some people think I have an agenda. When people hear providers talk, when they hear doctors talk, um, they know you are speaking out for your patients. You are a trusted leader, you have a trusted voice. So you have a power that you may not realize you have until you start using it. And you might realize, oh wow, people actually listen to me. People care about what I think. Um I have the ability to, you know, get people to listen who might not listen to other people bringing the same evidence forward, right? Um, so that's what I would ask you to lean into.

Tamar Haro 58:23

So a few thoughts in closing. I would say that uh it is important to remember that advocacy is a marathon and not a sprint. So you may not see the benefit of your activities and your actions right away, but just know that persistence does lead to progress. And then I also would just say that it is important to remember the power that you have as physicians. And I love to remind physician organizations about this uh Gallup poll that Gallup does every couple of years just to remind you of the power that you have within. So Gallup polls Americans and their views on honesty and ethics in various professions. So they ask Americans how they feel about honesty in a whole range of professions. And I would say, and just to note that nurses and doctors uh consistently rank in the very top, always among the highest, where Americans view their honesty and ethics high or very high. And consistently at the very bottom, this year it is only beat by telemarketers, is members of Congress. So there's a lot of power in that, and reminding yourself that as doctors, as physicians, you are the trusted voices in the room, and there's a lot of power in that. And then as physicians, I know that you are dealing with a lot, a lot of stress, a lot of moral injury. And I have had physicians tell me on so many occasions that engaging in advocacy feels like an antidote to what they're dealing with clinically. The stress of the profession, the added administrative burdens on you as physicians, and so many challenges that you're facing, that engaging in advocacy can be a real antidote to that. Being around other people who are advocating for policies that will benefit their patients can be really helpful at supporting that work.

Dr. Grace Nicksa 1:00:25

Thank you very much, Leo and Tamar, for a wealth of information and resources on Medicaid. I want to thank you both for your time today. Our next podcast will be E-Bikes, Kids, and the Speed of Change. We will have guest speakers Romeo Ignacio, a pediatric surgeon from San Diego, a member of the Southern California ACS Advocacy Committee, and Sigrid Burres, an acute care trauma surgeon from Irvine, California, who was awarded the American College of Surgeons Advocate of the Year in 2025. Thank you for listening to Operation Advocacy.

Speaker 1:01:02

Thanks for listening. Make a difference in the life of a child. Advocate, but also please like and subscribe to our podcast. And if you want to make your voice heard, one way to do that is contacting your policymakers. There are some links below that can help.