Advocating for Childhood Obesity Treatment & Research with Justin Ryder, PhD

Obesity affects millions of families, with about one in five U.S. children being impacted by the disease. In this episode, Lurie Children’s pediatric obesity expert Justin Ryder, PhD, explains the many ways to manage childhood obesity including the use of injectable GLP-1 receptor agonists that address the biological causes of this disease, weight-loss surgery and other resources available through Lurie Children’s Wellness and Weight Management Program. Dr. Ryder also advocates for Lurie Children’s mission: to improve access to these resources and treatments for all patients.

“One of the challenges that we face is we have these new drugs that are highly effective, but we can't get them to our patients. Insurance won't cover it, and insurance won't cover it because obesity is stigmatized.”

Justin Ryder, PhD
Vice Chair of Research, Department of Surgery
Associate Professor of Surgery and Pediatrics, Northwestern University Feinberg School of Medicine

Topics Covered in This Show

• The childhood obesity epidemic refers to the rise in obesity beginning in the late 1970s and early 1980s, Dr. Ryder explains. Since then, the prevalence of obesity in American children has jumped from 5 to 20 percent, or about 16 million children.
• Dr. Ryder stresses that behavioral recommendations like diet and exercise won’t address the biological and genetic factors also contributing to obesity. This is why most major medical organizations label obesity as a disease.
• The two main surgical procedures available for obesity are Roux-en-Y gastric bypass and vertical sleeve gastrectomy. While surgery is highly effective at reducing weight and eliminating co-occurring conditions like hypertension for the long-term, there are risks to surgery. A combination of medication and surgery may be recommended.
• Dr. Ryder warns that “watchful waiting,” or waiting for childhood obesity to resolve on its own, doesn’t work, as the likelihood of outgrowing obesity is very low.
• Dr. Ryder lists several FDA-approved anti-obesity medications available for adolescents that work on the brain, not the gut. He adds that sometimes trial and error or a combination of medications may be necessary to find the right treatment for your child.
• Access to medication is a major issue when it comes to anti-obesity treatment. Dr. Ryder has played a significant role in advocating for Illinois to change state law to allow anti-obesity medications for children. He is also advocating for Medicaid to cover more medications so more families can afford them.
• At Lurie Children’s, about 80 percent of patients are from non-white families, and 60 percent are on Medicaid. Ensuring that clinical trials for anti-obesity treatments are representative of the families they serve is a priority for Dr. Ryder’s team.
• For parents concerned about their child's weight, Lurie Children's offers a world-class Weight and Wellness Clinic, with providers who specialize in everything from lifestyle to bariatric surgery. Lurie Children's offers additional clinics for children with obesity who have co-occurring conditions like liver disease or a family history of heart problems.

Transcript

[00:00:00] Erin Spain, MS: This is Precision, perspectives on children's surgery from Ann & Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. Childhood obesity is a major risk factor for a long list of diseases, and today's guest will explain why obesity is treated as a disease and how Lurie Children's is helping connect young patients with the right treatment for weight management. Justin Ryder is a scientist who studies new treatments for pediatric obesity. He also oversees research in the Department of Surgery at Ann and Robert H. Lurie Children's Hospital of Chicago. Welcome to the show. Thanks so much for being here.

[00:00:56] Justin Ryder, PhD: Thanks for having me, Erin.

[00:00:57] Erin Spain, MS: So you have been a longtime advocate and scientist looking into the research and treatment of childhood obesity. Tell me what drew you into this area.

[00:01:07] Justin Ryder, PhD: I think it started when I was in high school. I was, a coach on swim teams and I really enjoyed working with kids, but I saw kids of all different shapes, sizes, abilities, and just became curious about, you know, I would have some kids that would work really hard and exercise a lot, come from really nice, great families, that would really struggle with their weight and it led me down this path. I'm really fortunate to be able to do this as a career and for a living, trying to understand why kids are impacted by obesity, but also to try to develop and help study new therapeutics and new treatments to help with the epidemic.

[00:01:45] Erin Spain, MS: Well, maybe you can give us a little background here on what's been called the childhood obesity epidemic. How has this been affecting children and adolescents and their families and what's causing this?

[00:01:56] Justin Ryder, PhD: We started to notice, from an epidemiological perspective, an uptick in childhood obesity prevalence rates in the 1980s . In the late '70s, early '80s, the childhood obesity prevalence rate was about 5 percent. And we've seen a linear increase over the past 45 years or so since that time to the point where we're at about 20 percent prevalence rate. So instead of one in 50 children, it's in 5. That's definitely troubling. And this is in spite of hundreds of millions of dollars for prevention efforts. You see ads all the time about eating healthier, being more active, programs that are out there to get kids less screen time, eating more fruits and vegetables, access to things like playgrounds and parks. And a lot of blame is thrown around, too. It's parents' fault, it's TV's fault, it's the food system's fault. And from my perspective, I think it's all those things combined. But also, there's a strong biological component that doesn't necessarily get blamed. But that we can't fight with being necessarily more active and eating better, and biology is really, really difficult to tackle from a pure behavioral standpoint.

[00:03:16] Erin Spain, MS: And you have said we really need to shift the way we talk about obesity to this more biological conversation. And that has been happening in the past 10 or 15 years, but more change is needed. Can you tell me about what's been happening and what you are hoping can happen here in the future?

[00:03:34] Justin Ryder, PhD: It's not a perfect analogy, but the analogy I like to think of it and how it's characterized is very similar to the AIDS epidemic in the 1980s, where they were blaming a lot of people for the problem and they weren't necessarily seeing it as a disease. I think obesity is highly stigmatized and there's a lot of blame placed on families, on people, kids, their parents, caregivers, grandparents. Obesity is nobody's fault. It's a complex interaction of biology and environment or a gene environment interaction. And until we start to frame obesity as a disease rather than a behavior, we're not going to make a dent in treating it successfully and we're not going to make a dent in preventing it successfully. So, over the past couple of years, most major medical organizations, the American Medical Association, American Heart Association, Diabetes, goes on and on, all have labeled obesity as a disease and that's because the pathophysiology of obesity is rooted in biological underpinnings, whether it's cellular mechanisms, whether it's brain -related activities. A lot of people are very focused on trying to understand the brain's influence on appetite regulation and satiety. And most of our newer medications actually don't work on the gut or they don't work on muscles; they work on the brain. And they change how the brain works to alter behavior so that people can be more successful on their journey towards healthier weight.

[00:05:10] Erin Spain, MS: Well, and some news that really made headlines is that the American Academy of Pediatrics published guidelines last year on weight loss medication for children ages 12 and older. How are these medical protocols for obesity changing?

[00:05:25] Justin Ryder, PhD: It was great for the American Academy of Pediatrics to publish new clinical practice guidelines. Those came out in January of 2023. A lot of people were already using medications, though. However, it's good to have evidence-based guidelines. There's several medications, five that are FDA-approved, for the treatment of obesity in pediatrics, and one for genetic disorders, so children with obesity above the age of six that have a certain genetic phenotype. One of them is called a leptin receptor deficiency. Another one is a mutation of a gene called POMC. So, the drug is called setmelanotide and it treats what we would call monogenic forms of obesity, or obesity that's derived from genetic causes . One of the drugs that's in the press all the time, Wegovy, or Ozempic is the diabetes name, but Wegovy is the obesity treatment version of semaglutide, made by the manufacturer Novo Nordisk. It's FDA-approved 12- to 17-year-olds. And while it is an extraordinarily impressive medication because it gets about 15 to 17 percent weight loss in adolescents on average, which is actually better than the adult data. That's one interesting thing about the newer obesity treatment drugs is kids tend to respond a little bit better to them than adults. We don't know if it's because of social support at home, better adherence, maybe duration of disease so they've had the disease of obesity less so these drugs might be more effective. We don't really understand the answer to that question. But one of the challenges that we face is we have these new drugs that are highly effective, but we can't get them. We can't get them to our patients. Insurance won't cover it, and insurance won't cover it because obesity is stigmatized. They still see it as the person's fault as a behavior rather than the biology, and so that's something that we, as the research community, as a medical community, as a society, really need to move towards because we have these effective therapeutics, but most people can't afford to pay for them out of pocket and then if insurance companies don't support them and provide them, then it really just continues to perpetuate the cycle.

[00:07:35] Erin Spain, MS: I wanted to also talk about surgeries. For a long time, the gold standard for weight loss was bariatric surgery. And this is still the case, and that is covered by a lot of insurance. Can you tell me about the surgical option and kind of how that's weighed against a medication option for children or teens?

[00:07:55] Justin Ryder, PhD: It's a great question. So currently surgery or bariatric surgery, we have two procedures. One is called a Roux-en-Y gastric bypass. One is called a vertical sleeve gastrectomy. Roux-en-Y gastric bypass involves rearranging the intestines as well as the stomach, whereas vertical sleeve gastrectomy is removal of about 85-90 percent of the stomach. It is a malabsorptive procedure that allows nutrients to pass through the gut a little bit differently and also changes some of the brain signaling from the gut to the brain when sensing satiety and fullness and things like that. A long time ago it was thought to be a restrictive procedure , but we know that now that's not necessarily how it works. In adolescents, it's a very safe procedure. At one year , both Roux-en-Y gastric bypass and sleeve gastrectomy cause about 30 to 35 percent weight loss on average, which is pretty tremendous for kids with severe obesity. So we're talking about children that have BMIs of 35 and up, really, but a lot of times it's kids that have high BMIs and they have comorbid conditions. And what we mean by this is they might have prediabetes or diabetes, really uncontrolled or high hypertension, obstructive sleep apnea. They might have metabolic associated liver disease, and a whole host of other complications. And it's usually not just one of those things on the list, but usually it's several of the things on the list. And so, one of the things that bariatric surgery is also really fantastic about is treating those underlying comorbid conditions with about a 70 percent success rate of remission of disease in addition to the weight loss. And one of the fascinating things that been able to show is that not only does it cause this weight loss at one year, but it's durable out to 10 years. We have 10-year data showing 20 percent weight loss from their baseline. Keeping the weight off with just one surgical procedure is quite remarkable. And durable remission of those underlying diseases or comorbidities. 

[00:09:53] Erin Spain, MS: But surgery comes with some risks. Can you tell me about those?

[00:09:57] Justin Ryder, PhD: It is a surgical procedure, right? It's rearranging the guts, so to speak, And, you do that, you process food differently, you absorb nutrients differently.We've seen some micronutrient deficiencies. You also process alcohol differently. One of the challenging things about doing bariatric surgery in an adolescent is they're going into what we probably could call their drinking years, you know, college and, absorption of alcohol is faster. And so, what may have taken you two to three drinks to get tipsy is a half a drink instead. So, one of the things that we're doing very carefully here in leading the way at Lurie Children's with Tom Inge, who's our chair of surgery, and I'm very fortunate to be a part of this study, it's called Teen Labs, but we're not just looking at the good outcomes of adolescent bariatric surgery, but what things should we be cautious of? What are the risks? What are the risks for nutritional deficiencies? Can we provide supplementation to get around that? Are there risks for bone health? We're actively studying that as well, but also these sort of risky behaviors, drinking, smoking, drug use. We want to know about all of them, so we can better inform patients, families and, ultimately, providers so that we can offer the best treatment possible.

[00:11:10] Erin Spain, MS: Is there a way that surgery and these new medications could be used hand in hand?

[00:11:15] Justin Ryder, PhD: Absolutely. And a lot of people are doing it, not necessarily in a rigorous fashion, but, one of the challenges is if you have a kid or an adult who might qualify and want to have bariatric surgery, there's usually a lead-in period and to get them weight stable, that can be really, really challenging for people. So sometimes putting them on an anti-obesity medication, so we don't call them weight loss medications because it implies that weight loss is the only thing that you're going to get from it. And there's lots of other things that go into the obesity equation other than weight. So, they can use pre-op to help people weight stabilize or lose some weight prior to surgery, which can be really, really beneficial to increase the safety of the operation but also the success of the operation. And then, in the post-surgical setting, if we start to see weight regain or weight rebound or if somebody's not hitting the targets that we think that they should hit, adding anti-obesity medications then becomes part of that equation as well. Like I said, there haven't been real rigorous studies of that yet, but people are doing it clinically because these medications are available.

[00:12:20] Erin Spain, MS: Medications or surgery can sound really extreme to some families, and some parents may be wondering, maybe this will just resolve on its own. What do you say to families who are trying to take that approach?

[00:12:32] Justin Ryder, PhD: Yeah, so the American Academy of Pediatrics guidelines that came out last year were very, very clear that watchful waiting, which had been the pediatric practice for about 15 years prior to those guidelines, doesn't work. They won't grow out of it, so to speak. And that's really hard for people to hear. Once you develop obesity, the likelihood of not having it is pretty minuscule. And that's because of the strong biology of obesity, it's not these people's fault. It's a really tough disease to beat back. And so, when I think about it from that perspective and understanding the biology of obesity, medications, surgery is a different story, but medications in particular, especially for kids 12 and up, with FDA-approved and tested medications that we know are safe, at least in the short term, we're working on long-term data, we know that they can work. They're not a cop out by any stretch of the imagination. What they are is tools, and they're tools to help people be successful. It's like saying that you want to will away your ADHD. You're not going to do it, but we give kids, all the time, ADHD medications to help control some of the behaviors that are making their lives really, really challenging. Obesity is the same way. These drugs, what they do is they help control some of the behaviors. They work on the brain pathophysiology to help people be more successful with their goals. And so I think it's framing it the right way. And that's just going to be a conversation that we need to keep having over and over again. And that's why I welcome any opportunity like this to share some of that knowledge and to share that opinion, so that it keeps getting out there and people can keep hearing it.

[00:14:14] Erin Spain, MS: So for listeners who want to explore some of these new treatments for their children, first of all, tell me what medications are available right now, and what will they find at Lurie Children's that they may not find anywhere else?

[00:14:27] Justin Ryder, PhD: Right, so currently, I'll just go down the list. The oldest FDA-approved medication that's available for adolescents is a medication called phentermine. It's a stimulant. It's been FDA-approved for almost 70 years. In adolescents, on average, weight loss is around 5 percent, but there's lots of people who respond very, very well and there's lots of people that don't respond at all to it. So it just depends on the person. I will say, every choice is going to be an individual decision between the patient, the parent and the provider. And sometimes, the first medication you try may not work. And sometimes the second medication may not work, but maybe a combination of medications or different medications all together. So, phentermine can be prescribed for individuals over the age of 16. That's an FDA perspective, but I do know people that prescribe it off-label, meaning not with what the FDA would recommend under the age of 16. There's another medication called orlistat. You can actually get it over the counter called Alli. It's been around for a while. It's a lipase inhibitor, so what that means is it works in your stomach to help with how you process fat. I will say, while it works, most people don't like to take the medication because of some of its we'll just say less than pleasing side effects. Another medication that is used is called Qsymia, which is the combination of phentermine, the first drug I talked about, and then a anti-epilepsy medication that also works on migraines called topiramate. Qsymia comes in two different doses. On the medium dose, average weight loss at a year in adolescents with obesity is 7 percent on average, and with a higher dose it's around 10 percent on average. It's FDA-approved ages 12 and up. That medication should be very soon actually going generic, so it'll be cheaper than it currently is. And then there's two injectable medications that in a class of medications called GLP-1 receptor agonists. One of them is called liraglutide. Its brand name is Saxenda. It's made by Novo Nordisk. It causes about 5 percent weight loss on average in adolescents. It's FDA-approved 12 and up. It's a daily injectable, so you have to be willing to do daily injections, but it's an option. And then, its sister drug that's very famous is called Wegovy, and Wegovy is a once-weekly injectable, Semaglutide is the name of the medication. And on average, it's around 15 percent weight loss in adolescents and is FDA-approved 12- to 17-year-olds. So it were my kids and our insurance covered it and I could afford it, I would start trying with Wegovy. But if they didn't tolerate that, there's other medications that are in the toolbox that should be considered that have been studied and are FDA-approved in that age range.

[00:17:13] Erin Spain, MS: You just mentioned two important things: if my insurance covers it and if I can afford it. Tell me about those two pieces and how that comes into play here.

[00:17:22] Justin Ryder, PhD: It's something that frustrates me to no end because we have treatments for this disease now and then everybody says , "Well I can't get I can't afford it, my insurance won't cover what do I do?" It drives me nuts. Most private insurers are getting on board and covering some anti-obesity medications, not all of them, they might change year to year. One thing that I've been working on hard and my colleagues across the country have been working hard on is getting Medicaid on board for anti-obesity medication. So currently there's 16 states where Medicaid, in some form, covers some anti-obesity medications. Illinois is going to be joining that fray next month, where they'll start covering the GLP-1 receptor agonists class of medications, so that's liraglutide, Wegovy and, for both pediatrics adults, and then for adults only, the new drug Zepbound, made by Eli Lilly. Trezepatide is the drug name. But the drugs are really expensive if you have to pay for them out of pocket. I don't think many people actually really could do it. Celebrities can, you hear about it all the time, but you know, if a drug costs $1,000 or more out of pocket per month, not many people should pay that, right, to treat a disease, and so insurance really needs to cover these things. It's just going to be an ongoing conversation. It still goes back to the stigma that I've talked about, that they cover these medications for diabetes, the same exact drug, but they won't cover it for obesity, which could, by treating obesity, you could prevent diabetes. It's a really challenging conversation. And so there's actually an act in front of Congress right now — it's called the Treat and Reduce Obesity Act — that would expand Medicare, not Medicaid, but Medicare, so adults 65 and up, coverage for comprehensive obesity treatment, lifestyle, medications and surgery. And oftentimes as Medicare does, so does Medicaid and other insurances. So the hope is, if that were to get passed, then we would have better access from private insurance and Medicaid plans. Myself and colleagues across the country have been advocating for that. Not super optimistic, to be totally honest with you, because it comes with a high price point to treat obesity and treat it successfully, but it's the right thing to do from a societal perspective.

[00:19:38] Erin Spain, MS: I mean, I want to underscore the role that you played in getting Medicaid coverage here in Illinois. Can you just explain a little bit of the role that you did play to make this happen?

[00:19:49] Justin Ryder, PhD: Sure, I arrived in Illinois to join Lurie Children's Hospital in Northwestern last January. And prior to that, I was in Minnesota at the University of Minnesota, and one of the things that I did when I was there is led our team with changing the state law to allow access to anti-obesity medications and worked with them on the drug formulary. And then so when I got to Illinois, I saw that Illinois had no access and said, Hey, let's tackle this problem again. I got a little playbook on how to do it. And we have a wonderful advocacy team and government affairs team here at Lurie Children's Hospital, and they got me in the right rooms with the right people to have the right conversations, and we moved that needle forward.

[00:20:29] Erin Spain, MS: So that's one way that you're trying to improve access to treatment, but there are other things that can happen here at Lurie Children's, especially for these groups of underserved folks who are often disproportionately affected by the obesity epidemic. Can you talk to me about that?

[00:20:45] Justin Ryder, PhD: Yeah so, if we look at our data of children that are within the Lurie system, 60 percent of them are on Medicaid and 50 percent of them come from Hispanic, Latino families, and 30 percent of them come from Black or African American families. So 80 percent are coming from non -white families. So if we think about it from a health equity standpoint and think about 60 percent on Medicaid, we owe it to ourselves to have diverse clinical trials, diverse enrollment in our studies. It was one of the things that really excited me about moving to Chicago, to finally be able to enroll studies and enroll trials that were representative of the population that we're trying to treat. It's something that we on my team take very seriously, about having diverse enrollment, having a diverse team that's representative of the people that we're treating. But it also has a trickle-down effect to when we start to disseminate or get our evidence out there, and try to show that we have diverse enrollment and that the trials are representative of the population that we're treating. It's something that clinical trials get a lot of flack for, that they're not representative of the population that they're treating. And so when we participate in studies, something that's always one of our goals is to be, and have, representative trial that can be generalizable to the population.

[00:22:14] Erin Spain, MS: What message do you have for parents who may be feeling overwhelmed by all of this information and, if their child does have obesity, the journey ahead for them? What would you like to say to those parents?

[00:22:27] Justin Ryder, PhD: I would say that, if you're really concerned about your child's weight and your pediatrician is concerned about your child's weight, that we have fantastic resources here at Lurie Children's Hospital. We have an incredible weight management clinic, it's called the Weight and Wellness Clinic. There's also other clinics that see children with obesity who have co-occurring conditions, like liver disease, maybe have heart history problems. So if a parent had a heart attack or a stroke in the past, we have a preventative cardiology clinic. Those resources are available to you. And there's nothing wrong with trying to seek treatment for obesity. The sooner the better because, as I stated earlier, the likelihood of somebody growing out of it without intensive treatment is extraordinarily low, but we do have the treatments available. We're working on access, but we have a wealth of providers that specialize in everything from lifestyle to bariatric surgery and access to medications here at Lurie Children's and they'll receive truly world-class care.

[00:23:29] Erin Spain, MS: Are you hopeful that we can turn the tide on these obesity numbers in young people and see a real change?

[00:23:35] Justin Ryder, PhD: Like I said earlier, 20 percent of kids in the U.S. have obesity. Of the 12 to, we'll say, under-20-year-olds, that represents about 16 million kids. If we were able to treat half of those kids with real treatments, medications or surgery or super intensive lifestyle modification, for a couple years, we could turn the tide. But right now, it's not 50 percent. It's probably closer to 3 to 5 percent of kids are actually getting access to intensive treatments. Medication access is probably 3 percent. Bariatric surgery is less than 1 percent. It's probably more like 0.1 percent. And so, we need to scale our access in order to meet the problem.

[00:24:24] Erin Spain, MS: So there's work to be done, but hope for the future.

[00:24:28] Justin Ryder, PhD: Absolutely. Absolutely. I mean, we have the tools available. We just can't get them in enough people's hands.

[00:24:33] Erin Spain, MS: Well, thank you so much, Justin Ryder, for coming on the show and explaining all this in detail. It was so informative, and I really appreciate your time today.

[00:24:42] Justin Ryder, PhD: Thanks, Erin. Happy to do it.

[00:24:44] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit LurieChildrens.org.