Why We Advocate for Kids: with Dr. Andrea Hayes-Dixon

Pediatric surgeon and president of the American Pediatric Surgical Association, Dr. Andrea Hayes-Dixon, discusses why pediatric surgeons advocate and ways that ALL can advocate to improve children’s health. She shares personal experiences pioneering a surgical procedure to treat a previously almost incurable cancer and her basic science research successes. Insights into funding for pediatric healthcare research, its importance and current challenges.

Resources, fact checks & policy watch links on Padlet 

Transcript

Dr. Leslie Knod 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. Andrea Hayes-Dixon 0:20

On today's podcast, my name is Andrea Hastikson. Educating the public to protect children is really critical to me.

Dr. Leslie Knod 0:30

Welcome to Operation Advocacy. This is our debut podcast produced by pediatric surgeons with a mission to improve the lives of children through simple conversations. This idea was developed many months ago with a small group of pediatric surgeons on our Pediatric Surgery Society's Health Policy and Advocacy Committee. I'm Dr. Leslie Knod. And on today's podcast, we are joined by Dr. Andrea Hayes-Dixon. She is the Dean of Howard University's College of Medicine, Senior Vice President of the Health Affairs and former Surgeon-in-Chief and Division Chief of Pediatric Surgery at UNC Children's Hospital, and a previous section chief at the University of Texas MD Anderson Cancer Center. Welcome, Dr. Hayes Dixon. Thank you for joining us for this podcast.

Dr. Andrea Hayes-Dixon 1:14

Well, thank you very much, Dr. Knod. I'm very pleased to be here.

Educating the Public to Protect Children

Dr. Leslie Knod 1:16

Today I wanted to ask you as your presidency in American Pediatric Surgery Association, your focus was educating the public to protect children. What led that vision for advocacy as a cornerstone of your presidency?

Dr. Andrea Hayes-Dixon 1:33

Yeah, so educating the public to protect children is really critical to me. Protecting our children is something that's often neglected. If you look at our policies and procedures from the United States of America through either HHS or the Secretary of Health, you do not find a lot of policies, very, very few, that are directly related to children. And even just looking at public media, public television, other cable stations, you really don't see pediatric health represented. And I'm not sure why that is, but I think as pediatric surgeons, we have a responsibility to provide that education. I often think of the education as being very basic and not necessarily complex, meaning, for example, you and I both know that one of the things that we do fairly frequently as pediatric surgeons and pediatric odolaire and galladers do the same is, for example, removing coins from an esophagus of a small baby who's accidentally swallowed a coin that gets stuck in their esophagus. And just that simple public safety announcement would be helpful if we could get some group to recognize that this is a public safety hazard that could be avoided with simple education. Now, right now we don't have a bill or anything in line for that, but that's just one small example of how we could really impact what we do every day by improving health, just letting people know this is an issue, watch out for it, and we can save millions of dollars in healthcare costs with simple education. The other thing is as the president of the American Pediatric Surgical Association, it's a huge responsibility. The organization has expanded over the last several years. When I first joined, we were only training approximately 20 pediatric surgeons a year in the United States and Canada combined. This was in 1998, and now we're training over 60 a year in the United States and Canada combined. So there's been a huge increase in the number of pediatric surgeons as we needed. And that also gives me some excitement about using those persons to really be advocates in every state.

Dr. Leslie Knod 3:58

There is a database that I recently learned about called the Global Injury Research Collaborative. It's where healthcare providers can input events where patients have ingested foreign objects, they've aspirated, and it collects the data in a way that we can report it and use that for data-driven policy.

Dr. Andrea Hayes-Dixon 4:16

Outstanding. Outstanding.

Dr. Leslie Knod 4:18

So what advice would you give someone? I love that you said advocacy doesn't have to be complex. I think when people think of advocacy, even some of our new members on the committee, they think I've never done this before. This is intimidating. And it doesn't have to be complex. Could you share some advice you would give someone that's just starting out, a novice that is passionate about something, wants to see some change, but doesn't really know where to start?

Dr. Andrea Hayes-Dixon 4:44

Yes, I think if you're a novice and you don't know where to start, one of the things uh to start is to educate yourself. Um the APSA Advocacy Committee, as well as the AAP Advocacy Group through the section on surgery, as well as the American College of Surgeons Advocacy Committees, all have online information regarding what you could do in your state. Going to those websites and accessing that information will give you exposure to the bills or the acts of Congress that are pending, or the acts in your state that are pending that you could get behind. Our congressmen and senators and all of the politicians that are interested in health advocacy issues don't always have the health background that is necessary, even though they're very passionate about the advocacy issues that we face. And we, as pediatric surgeons, or pediatricians, or nurse practitioners, or physicians assistant, we have information that they don't have. So we can really provide that on the ground information on what happens if this doesn't pass, what happens if we don't do this, what happens if consumer products don't put this on the package. We can provide that information to the public based on our own expert opinion dealing with children every day. So you can start off educating yourself and then understanding that your voice is going to be heard because you are the expert.

Dr. Leslie Knod 6:20

I hope that's part of what this podcast brings to our listeners, which are not just pediatric surgeons, but what is our expertise? What can we share from our perspective, from our profession that helps everyone advocate and hopefully change policy to improve the lives of children, our patients?

Dr. Andrea Hayes-Dixon 6:37

Yes, and certainly parents can also share their experiences if they've unfortunately had a child that's been in the hospital for one of the issues. Um, they can share their experiences. There's those on-the-ground stories are very, very important to legislators and very, very critical in getting our advocacy to make a difference.

Dr. Leslie Knod 7:01

Again, on advocacy does not have to be complex. Um we advocate every day at work, whether it's calling an insurance company to help with a denial, uh, making sure the pharmacy has the prescription that you've prescribed for your patient before discharge. Um one of our goals is to generate data that supports policy change. And I think as uh physicians and in general, there are a lot of um clinical experiences that we have used to create a research idea to they then can develop into data that drives policy. We've seen a lot of that with uh reducing firearm injuries, which is now the number one killer of kids in the US. And this is just one of the topics that we'll talk about later in our podcast series. Uh e-bikes will be another one. It's not just a bicycle. Um, so a lot of these uh we will focus on from the pediatric surgery perspective, but hopefully that our broader listening audience can use that to help advocate and keep our kids safe. Absolutely. What would you say to someone that says, What are pediatric surgeons doing in advocacy? Pediatricians do a great job of it, the all the specialist organizations do a great job of it. What's different? What are we gonna do?

Dr. Andrea Hayes-Dixon 8:10

I think what's different about us is we have a different perspective of the downstream consequences of some things like gun violence, um, traumatic e-bike accidents, four-wheeler accidents uh that occur. And it's different for a surgeon who not only cares for the patient, but actually has his or her hands inside of a patient and restores them to health based on an avoidable accident or an avoidable event. And pediatricians are great and doctors and family practitioners, but surgeons have a unique bond with a patient in that we're given the incredible opportunity, and I'm so grateful to each patient for the trust they put in us to take their child into a body cavity, repair something, and restore them to health. That responsibility establishes an emotional connection between the pediatric surgeon and the child that is very, very different from a pediatrician and a child. As important but very different.

Lifesaving Surgery in a Child (First Surgeon)

Dr. Leslie Knod 9:24

That really resonates with me, the trust that you mention. Um whenever I think of a patient that's in the operating room with us, that's their most vulnerable state. Um they're under general anesthesia and they completely trust us to do the job that we're there to do. I agree that does give us a unique perspective as well. Whether it's a car crash, that maybe someone wasn't wearing their seatbelt and they're getting a laparotomy. We open their abdomen to heal their organs that are injured or a gunshot wound, and we're there for the same purpose. Um, that's just a very um special type of trust and relationship that we have. So I think those stories will be the very unique stories that policymakers can hear, that the public can hear to help guide our advocacy efforts.

Dr. Andrea Hayes-Dixon 10:15

Right.

Dr. Leslie Knod 10:16

You are the first of many things in your career. There are a few things I would like to talk about that relate to surgical oncology. Speaking of trust and a commitment to patients, you are the first person ever in the world to perform a complex surgery in a child for sarcomatosis. There's a really complex name that I will say, but I'll also say the layman's explanation for those of us that are not surgical oncologists. Uh, but it's called the cytorreductive surgery for with hypothermic intraperitoneal chemotherapy, high peg. Basically, it cuts out every bit of cancer tissue and bathes the abdomen in chemotherapy, hot chemotherapy. Can you share with me what was the impetus for this idea? What was the inspiration for for this when you realize I need to do this in a child for the first child ever in the world to have this surgery?

Dr. Andrea Hayes-Dixon 11:09

Well, thanks, Leslie, for asking that. It's really been a labor of love. It started off with me being introduced to a patient when I was a fellow at St. Jude's Children's Research Hospital. And as a fellow at St. Jude's, I encountered a patient with a very rare disease called desmoplastic small brown cell tumor. And I remember as a learner operating with the attending surgeon, and we opened this 12-year-old boy's abdomen, and there were hundreds of tumors carpeting all of the organs. And the surgeon I was operating with said, This is impossible. There's no way we can remove all of these, and unfortunately, there's nothing we can do to save this child. And as the fellow, I was assigned to go tell the parents that unfortunately there was nothing surgically that we could do for their child. And that was not a conversation I wanted to have as a surgeon. Most of us go into surgery because we can fix a patient and go out of the come out of the operating room with a better patient than can't went into the operating room with. In this case, we couldn't do that, and it really literally hurt my heart. And so I immediately went to look up this very rare tumor in the library with microfiche, which many of our listeners may not even know what that is, but it takes some time. It's a little bit slower than a Google search. It takes some hours in the library. But I went to the library, looked at microfiche, and found an article that was published in 1991. So this was in 1998 that I sorry, 1999 that I encountered this patient. And the first article written on this tumor was um just a few years prior, and they really didn't know anything. They just said all the patients die from this disease, basically. Then I did some additional training at MD Anderson Cancer Center where they were doing this hyperthermic intrapretineal chemotherapy in an experimental basis on adults with sarcomas. And so I learned the technique there, and I asked the question to my superiors, I said, Hey, have you ever tried this in a child? And they said, Oh no, we wouldn't do that, it's too dangerous. And then I asked some of my pediatric surgery colleagues about it, and they said, Oh no, we wouldn't do that, it's too dangerous. And I said, But they're all dying. You know, there's only there's a 90% death rate for this horrible disease. So we've got to do something. And um that's what started the idea. And I thought if I could actually physically remove these hundreds of tumors, that would be a start. Uh and and of course I did that, and but it I had to teach myself somewhat because uh that wasn't taught to me in residency or fellowship. Um but I figured if we if I was meticulous enough and could leave the patient's organs intact and just remove the tumors, that was the way to go. So I did so. The the operations last from 12 to 15 hours, sometimes 22 hours. The most tumors I've taken out are 2200. I stopped counting at 2200, it was probably a few more. That first patient I did in 2006, and my had to do an experimental clinical trial to show that it was safe in children. Of course, there are vulnerable protected populations, so that was quite challenging. Um, I I did that while I was at MD Anderson Cancer Center, and there was a lot of checks and balances in place, and I was told if one child died from this operation that I would never be able to do it again. Oh my goodness. No child died, and no child has died from the operation since uh 248 cases later. Oh my goodness. But um in 2018, I was able to publish the results of the phase two trial, which showed if you could get 100% of the tumors out and you wash the inside of the abdomen with heated chemotherapy for an hour and a half, that the survival improved to about 70% for m for many patients. So what I've got to pause there.

Dr. Leslie Knod 15:18

That that is incredible. Uh there were a couple of pauses I had. 22-hour surgery for the longest one, 220 tumors for the highest amount of tumors. 2200, yeah. 2200. Oh my gosh, 2200. 2200 too. And almost 250 cases now that you've saved these children. And the number you just said, the survival, is 70% now after this surgery.

Dr. Andrea Hayes-Dixon 15:49

Yeah.

Dr. Leslie Knod 15:49

Is is that something like double what it used to be?

Dr. Andrea Hayes-Dixon 15:52

Or even essentially double. The survival was 15 to 30 percent, depending on the studies you looked at. And you know, not every patient qualifies for the surgery, but most of them do. And if you can get every single tumor out, and the other problem with this disease is the tumors hide. Like you don't see them on cat skin or MRI, because some of them are one and two millimeters in size. So that if you're not a surgeon who's accustomed to operating on this particular tumor, you could do your best operation and still miss them if you don't know where to look. Um, and if you don't know how to um dissect it out of the pelvis, which is quite challenging.

Dr. Leslie Knod 16:35

So you have to be a surgical oncologist and a surgical spelunker and find all the tiny cellular tumors.

Dr. Andrea Hayes-Dixon 16:43

I'm laughing because my son loved splunking, so I know exactly what that is.

Dr. Leslie Knod 16:49

Um yes.

Dr. Andrea Hayes-Dixon 16:51

Good analogy.

Dr. Leslie Knod 16:53

So, other firsts, um, there are a couple others on my list. One, this is an audio podcast. So I would be remiss if I didn't point out that you are the first African-American woman to be a pediatric surgeon in the United States, which is an incredible accomplishment. And I wanted to vocalize since we are an audio podcast in case that point was missed.

Dr. Andrea Hayes-Dixon 17:12

Oh, thank you.

A Surgeon Scientist

Dr. Leslie Knod 17:13

And another one, a surgeon scientist. I think there was another first in this as well with your basic science model. Did this story of this child in this condition that that you pioneered a surgery for in in pediatrics also connect with your basic science interest? And were they a simultaneous passion that started or one led into the other?

Dr. Andrea Hayes-Dixon 17:33

Great, great question. It was really simultaneous that I once I met this patient and then I started researching things. And then when I got to MD Anderson Cancer Center and started my molecular biology laboratory, I did molecular biology fellowship at University of California, San Francisco during my surgery residency. And so I took that knowledge and started a research lab at MD Anderson. And in that, with some mentorship, was able to pair my interest in the disease with not just surgical interest, but understanding how does this disease start, where does it start? We still don't actually know the organ of origin. It shows up with multiple tumors. I don't know if it's multifocal and or metastatic, but you never have a patient with just one tumor, like other malignancies where it starts off with one lump and then it may or may not spread. This disease starts off with many, many lumps in the abdomen, and it's unclear where they actually start. So I was intrigued by okay, how does it, where does it start? How does it grow? How does it spread? What is the organ of origin of this tumor? And so I began taking tumor samples and normal tissue samples from every single patient I did surgery on and store them in a biobank at MD Anderson Cancer Center. And then from there we're able to interrogate those tissue samples and try to understand more about the DNA and how similar or dissimilar the tumor is from muscle or skin or any other organ to try to understand where exactly it comes from. And we got some information to make a very long story short, an 18-year story short. Um the publication we had in January of 2022 in Nature showed that the driver for this disease is really based on androgens and androgen receptors in the tumor. And myself and the others in my laboratory, including uh Joe Ludwig, who's the co-senior investigator on this manuscript, discovered that if you inhibit the androgen driver, that you can stop the growth and spread of this tumor in an animal model. We demonstrated that in two different animal models. And so, again, for um those people who are listening to how long it takes to ask and answer a question, you know, I asked this question in 2004 and 2022 we published a publication with a partial answer. So it takes a while to get to the to the answer, but it certainly is worth um the journey and making sure that the patients that I saw and in surgery and the research I was doing were closely connected.

Dr. Leslie Knod 20:23

Yes. And that's a point I wanted to highlight. Actually, two. One, you just did a great example of storytelling with um your patient that really hit your heart that you didn't want to tell this family that they couldn't survive. And now look at what this is has turned into. And two, the funding for this type of research, the ability to do this type of research and advance problems that we don't know the answers to takes a lot of time. 18 years, that's a lot of dedication. I'm sure there weren't all successes along the way. Uh I've done a little bit of basic science, uh, only for enough to realize it's not my passion for life, but enough to realize there are a lot of pitfalls and hurdles. And sometimes that's gives you the idea to restart more smartly or in a different way. So 18 years, some of us use that term from bench to bedside uh is a term commonly used, but this is a great timeline of that. And the funding, I want to talk a little bit about that. It's multi-stage for research endeavors and how that evolves and how critical that support is for answering these unsolvable questions that we don't know the answers to.

Dr. Andrea Hayes-Dixon 21:35

Yes, I think that the research dollars is always an issue, especially for something extremely rare. This is not just rare, this is extremely rare. This tumor, desmoplastic small round cell tumor, we think the incidence is about 100 to 150 cases in the entire United States per year. So that's very, very rare, much rarer than the malignancies that we see in pediatric. Surgery in general. And funding is usually for more common tumors such as breast cancer or colon cancer, or even other pediatric tumors such as Wilm's tumor or rhabdomyosarcoma. So I obtained that first grant from the Robert Wood Johnson Foundation, the Harold Amos grant, and that provided funding for four years for my lab. And that was really the that jump started the funding. And then I began to get donations from grateful patients, even patients who had parents who had lost a child to the disease, were supporting the laboratory efforts. And then over time was able to generate enough data to get more grants and had a collaborator, as I mentioned, Dr. Joe Ludwig, who he was able to get grants based on an animal model that I developed, an orthotopic xenograph model. And so and so on it went. And I didn't have huge R01 type NIH grants to support this. I had a lot of smaller foundation grants that added up to enough to continue the research. Right, exactly, right. For sure. There were challenges, and I found that partnership was helpful, partnering with other investigators that had a grant that may tangentially been related to this particular type of sarcoma and collaborating with them to help them on some projects that they may have needed assistance with. So that was one solution. The other it was going to those that had given to my lab in the past and asked them if they had any connections of any other individuals who'd be interested in donating to the research. So I had to be creative and find some solutions. There were hard and fast rules at MD Anderson that if you didn't have enough funding, you weren't able to have lab space and you weren't able to, of course, hire any assistants in your lab. So I kept it pieced together for a long time.

Policy Watch: HHS & NIH Funding

Dr. Leslie Knod 24:10

I'd like to share some policy updates. Something that we've been watching is some of the NIH funding. So I'd like to share a few things with our listeners and also get your input on them. Last year, about 40% of the NIH budget was cut. Congress responded, though, with bipartisan support for medical research at the NIH level, and that provided $54.7 billion with a B dollars for fiscal year 2026. And that was up by $415 million, about 9% from fiscal year 2025. The fact that the budget proposed had a 40% cut, and then Congress responded with bipartisan support to give it a little more. That tells us Congress supports science and health and evidence-based research that can help cure problems like cancer.

Dr. Andrea Hayes-Dixon 25:11

Yes, and it also says that Congress listens to advocates. For them to get from the point of a cut to an increase means that they had to hear personal stories about how research changed families' lives, about how being part of clinical trials changed lives, about how the research efforts that is very complex with multiple investigators and the time that's necessary to go from an idea to an actual cure, as we just talked about. And so once the congressmen and senators heard this from their constituents, they changed their impression and they changed their desire to have cuts and said, hey, we've got to support scientific research. So yes, that came from data, and yes, that came from personal contact with congressmen and senators on a state level as well as a national level. They did respond.

Dr. Leslie Knod 26:10

In our description of this podcast, we're going to include some fact-checking for ourselves. So I will include this uh tidbit that I'm about to reference as well. The American Association of Cancer Research, they surveyed voters last fall, and there was overwhelming support for federal funding for medical research. Do you want to guess the number?

Dr. Andrea Hayes-Dixon 26:31

Ooh, a high number. I don't know.

Dr. Leslie Knod 26:33

89, 89%. Wow. Um, even supporting increased funding for cancer research. I I loved that data byte when I heard that.

Dr. Andrea Hayes-Dixon 26:46

Yeah. And and that was necessary. I'm glad that the um American Cancer Society did that. It was so necessary to hear from the public. What do you want? You know, don't let it be limited to what lawmakers guess you might want, but make your voice heard and know what you want. And um, if you've experienced cancer in your family, you'll understand it's devastating. Uh, and it really puts a ton of pressure on the entire family infrastructure when one individual has cancer. And so I'm I'm very glad that that statistic is getting publicized and that people um are very uh vocal and supportive of cancer research.

Dr. Leslie Knod 27:31

What is the cost of us not having US government funding for medical research? What's the downstream effect?

Dr. Andrea Hayes-Dixon 27:39

The downstream effect of us not having dollars for medical research is that we in this country will be behind. Um, the other countries uh in Europe and elsewhere are putting major amounts of money behind cancer research. And we want to be a part of the solution, and we don't want others to tell us what the solution is. And in order for us in the United States to be part of the solution, we have to invest those research dollars. We have to invest in the talent we have in the United States. And we also always welcome collaborative research with others and other countries as well, but not having the hundreds of thousands of people in the United States work on research that are currently now working on it now would mean that we would lose a lot of ground, and more importantly, a lot more people would die before we're able to come up with a cure for X, Y, or Z disease. So the consequences are severe for us not doing research. And we know in research that it takes years and years to get results. That's why most grants are five years or more, because it takes at least five years to answer one small question, and you hope that you answer two or three questions, and that's in that five-year period. But the answers to those questions build and you get more of a foundation, and then the next thing you know, you've answered a question. I think what listeners could point to is how quickly the United States was able to get a vaccine for COVID. That would not have been possible without years and years of research to those investigators that were investigating other viruses. And when we got a COVID virus, they were able to pivot, and very, very quickly we had a vaccine that would not have been possible without an investment in scientific research.

Dr. Leslie Knod 29:33

So a loss of talent, a shift of talent, new cures not diagnosed, not found or discovered. In pediatrics, there are a lot of rare conditions and rare diseases. Uh I I've seen where the federal level funding is important in the NIH for bringing those interests, uh, parties of interest uh interested in those together from multiple institutions. So they're not working in a silo. On another topic. So now in April, the administration's fiscal year 2027 budget was released. It indicated a 12% reduction in NIH funding. So this is an opportunity that we can again advocate. This was just released in the last month or two. Uh, we can advocate to our senators, our representatives, that medical research funding is key. So more details to come on that. Also, in our description, we will have the fiscal year 2027 budget linked for your review.

Dr. Andrea Hayes-Dixon 30:32

Yeah, I think that cut hopefully um will not be finalized. And that we can encourage some of the listeners to be advocates for that and speak up about how that lack of research could impact our personal lives with ourselves and our family members. And it's really important for lawmakers to hear from us, and they want to hear from the constituents in their district who voted for them or who would vote for them. Those are the ones they really pay attention to that they want to hear from.

Dr. Leslie Knod 31:06

Some of the updates on the fiscal year 2027 budget is an estimated $15.8 billion cut, and that includes reductions to NIH research. That'll eliminate some of our public health programs and uh preparedness programs. This, in combination with the HR1 significant Medicaid restructuring, and funding reductions, will have a big impact on pediatric patients and pediatric surgery. And this signals decrease federal investment in health care. And it'll increase reliance on the state level systems. And I don't think we're ready for that or prepared for that.

Dr. Andrea Hayes-Dixon 31:44

I think that it will increase pressure on the states. And there have been many publications on how the states that adopted Medicaid reform under the previous presidents have all benefited from decreased mortality and early detection of cancer and other diseases. So we know that that Medicaid expansion that happened in the states a couple of um terms ago, maybe eight to ten years ago, is now being seen in increased lifespan, increased number of early detection for colon cancer, for breast cancer, because they've had access to screening when before without Medicaid expansion, they did not have access to screening. So the Medicare and Medicaid cuts are going to significantly affect adults and children that receive care. I think people sometimes forget that Medicaid includes children as well as the disabled or are differently abled. And their children are they don't have any control over the obviously of whether they get a job or not. They're subject to their parents. And we want to make lawmakers aware that children will be affected. And that may or may not change their decision, but again, we're providing information and data.

Policy Watch: AAP et al. v. Kennedy et al. (Vaccine Schedule)

Dr. Leslie Knod 33:04

Our next podcast episode will actually be all on that topic, because that needs a session all on its own. We'll look at healthcare access funding for children. Our guest speakers will be Professor Leo Cuello from Georgetown University, McCourt School of Public Policy Center for Children and Families, and Tamra Harrow, who's a private consultant now at Harrow's Solutions, and she guides policy and advocacy, and she's a former senior director of the federal and state advocacy at the AAP. So we have a section in this podcast called Policy Watch. So we're going to keep the fiscal year 2027 budget in our policy watch. One other one that's worth mentioning. The American Academy of Pediatrics filed a lawsuit against the federal government called AAP et al. versus Kennedy et al. And it it said that the process for changing the vaccine schedule was not followed properly. Recently in March, the courts put a pause on implementing any of these changes as this goes to court. So it blocked the implementation of the federal childhood immunization schedule while this lawsuit plays out. Why is that important? Just having this debate, it changes perception. Vaccine hesitancy has increased. We have children that are not getting vitamin K and having brain bleeds or needing to go on ECMO, which is heartlong bypass, but they have a higher bleeding risk. We'll have numbers soon, I'm sure, on flu and COVID if that was higher. But vaccine hesitancy is now a larger problem and increased in preventable diseases and even mortality from those diseases. And that's a huge advocacy point with the American Academy of Pediatrics and incredible work that they did with um having a legal response to this to try to keep our children safe.

The Art of Storytelling

Dr. Andrea Hayes-Dixon 34:54

Yes, I do think it's important to keep the American public educated.

Dr. Leslie Knod 34:59

And I I want to end on storytelling and a little bit of the art of storytelling. I remember you shared uh a story with me before this about how to talk to senators and representatives. Um can you share some tips on how do we speak to them? What's the lingo? What's your strategy for preparing and details and for getting ready for a congressional meeting?

Dr. Andrea Hayes-Dixon 35:24

Well, I think first of all, you have to recognize that you're most likely be talking to a staffer and not the actual congressperson or senator. And that's fine. Those are the persons that filter the information to give them to the senator or congressman. So don't be daunted by the fact that this looks like a young, maybe inexperienced individual. They're going to need to take your words and transmit them to the senator or the congressman or the assemblyman or woman. And you have to couch that, like you said, into a story that they can repeat, that they can remember. Also, you want to have brief facts, just two or three bullet points of facts and numbers. Numbers are powerful for them to hear. So having the facts and numbers combined with your personal experience or your patients' personal stories is really what resonates. They want to be able to advocate for you and because you're their constituent. So for you, you might think, oh, they're not going to listen to me, I'm just one person here. But if you are in their voting district, they will listen to you no matter what. And you may be one of the only voices they hear, so your voice is going to be even more important. So get data, tell stories, and offer your phone number. Most surgeons don't offer their personal cell phone number. Most physicians don't offer their personal cell phone number. The senator or congressperson wants to be able to call you. Now they will probably never use that phone number. But in the case that they use it, if they forget the story or they want to hear the story again, you'll be right there to give it to them. And they feel like there's a trust and a relationship building there. I'm going to give you my personal cell phone number. You can call me if you have any questions when this bill comes up for vote or whatnot. That goes a long way. So those are the three points that I would emphasize. Offering your personal cell phone number, providing data, and providing personal stories.

Dr. Leslie Knod 37:34

Providing personal stories, get the data to them and give your personal cell phone number to them. Those are absolutely the key. Thank you. I really value your time uh that you spent speaking to me today about advocacy, some of your experiences. I would like to share a quote from Spider-Man since we are pediatric surgeons. , we'll put on our pediatric shoes for a moment. With great power comes great responsibility, Spider-Man., so I hope that we are able to share advocacy ideas throughout this season that speak for our children, the most vulnerable population who doesn't have they don't have a loud voice. We hope to be their voice.

Dr. Andrea Hayes-Dixon 38:15

Thank you very much. And as Whitney Houston said, our children are our future.

Dr. Leslie Knod 38:21

Yes. Dr. Andrea Hayes-Dixon, thank you very much for being with us today. Thank you so much, Leslie.

Dr. Andrea Hayes-Dixon 38:27

Much appreciate being invited.

Dr. Leslie Knod 38:29

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. We want to hear from you. Call or email us your comments, feedback, or even your compelling stories. Email us at operationadvocacy411 at gmail.com or call us and leave a voicemail at 202 677 53TwoTwo. Again, that's 202 677 53TwoTwo.