From Clinic to Capitol Hill: What It Means to Be a Vaccine Advocate

Buddy Creech: [00:00:14] Hey, everybody, this is Buddy Creech and this is Let's Talk ID. Today I'm excited to be joined by three of our pediatric Infectious Diseases Society fellows in vaccine advocacy. Now this is a new program that was recently launched. And today what we're going to do is just talk a little bit about what it looks like to advocate for vaccines, both at the professional level with our colleagues, at the personal level with our patients, but then also at the policy level with state and national lawmakers. So I'm really excited today to be joined by Kelsey Rowe, Paul Mitchell and Feargal Donaghy, each of whom are spending the next year, along with two other fellows, in understanding what it looks like to be a vaccine advocate. Guys, thanks for being here today. I'm really excited to have this conversation with you all.

Paul Mitchell: [00:01:07] Thanks for having us, Buddy.

Buddy Creech: [00:01:08] Absolutely. All right. So there's a lot to cover in a short period of time. But maybe what I'll do is just level set for folks to make sure we know what we're talking about. So about a year ago or so, PIDS identified this as a real key need. And it comes alongside a lot of the things that IDSA is doing as well around public policy and around vaccine advocacy, and through the support of Pfizer and now other partners coming along, we were able to liberate some funding to have a competitive process to identify five fellows who would spend the year learning about different aspects of vaccine advocacy, things about how bills become laws, things about how vaccines are made, but also maybe the key component underlying all of it is I know this comes as a shock, but sometimes as scientists and physicians and healthcare providers, we don't always talk so good. We sometimes just say things that are either out of left field over people's heads, sometimes overly paternalistic. I mean, we can hit for the cycle in the ways that we misfire on our communication. So one of the goals of this year is to really do that type of media training, lobbying, training, and just good communication skills. And I think that's been a real important piece of what we've done so far. So maybe we could start just by asking you all like, what has this year been like up until now? Obviously, we're going to spend a little bit of time talking about our day on the Hill that we recently did. But Kelsey, do you want to hum a few bars about like what we've been doing so far with some of the sessions that we've got, and maybe we can even talk about some of the sessions that we have coming up.

Kelsey Rowe: [00:02:46] It's been a great experience so far. We've had several sessions talking about vaccine development, a clinical trial design, vaccine approval. We had Paul Offit come and speak about his experiences in the field and his experiences with an advocacy. We're going to be meeting with Grace Lee as a member of the ACIP very soon. And so it's been just a really great crash course in all things related to vaccines and advocating for vaccines in an informed way, but still being able to relate to people and kind of accomplish those advocacy goals when we're speaking to people in layman's terms. So it's been a great experience. I've learned a lot. I'm really grateful to be a part of it.

Buddy Creech: [00:03:25] Every program does it a little bit differently. But Paul, I'm curious how much sort of formal vaccine training did you have, either during residency or now during fellowship? And you may be a little bit weird because you're at a place where a lot of us have this, but you're really at a place where there's a lot of vaccine advocacy going on. But do you want to say a little bit about like, what is your training as a pediatrician been like up till now around vaccines? Specifically?

Paul Mitchell: [00:03:51] When I talk to people about this, I think it sometimes can seem a little bit regional and it kind of depends on what the patient population is like. And so I did my residency training in Oregon, which for a long time had the distinction of the most unvaccinated kindergartners in the country by state. So I do feel like a huge part of my residency curriculum was around how to have these discussions around vaccine and vaccine hesitancy, which was wonderful. But when I talked to folks across the country, it is not universal. So I think it depends on the amount of vaccine hesitancy in your area and whether it is worth the time in a residency program to prioritize that. But that being said, I think my personal view is that it needs to be something that is more national. As we know that vaccine hesitancy is on the rise. You don't always practice in the places that you train, and it's important for all of us to kind of incorporate that. I would say it's continued into fellowship, although I feel like my residency training really cemented a lot of this because as ID specialists, we do have conversations about vaccines, but it is not the same day to day that outpatient general pediatricians do. Those are the folks on the front line, so to speak. And so getting to communicate with them and learning through this advocacy program, what is going to be the best way to provide information to those kind of trusted messengers? I think has been really helpful.

Buddy Creech: [00:05:06] Well, so that's actually really cool. So, you know, I've been thinking about this for a while, about what the three prongs are for how to have these conversations or how to be a really effective communicator around this. One is that we have to know the science if we're incompetent, that's going to be really challenging. The second is that we have to engage specifically around the domains of vaccine hesitancy, right? If there are specific areas in which people are hesitant, well, we need to address those head on. And then the third is an element, I think, of actual just media training, how to be a good communicator no matter what we're talking about. So Feargal, I'm going to ask you, I mean, like, is that something that has played a key role in your career up till now, or is that something that this vaccine advocacy fellowship is going to be able to hone your skills on? Tell me a little bit about your experience with like media and media training.

Feargal Donaghy: [00:05:58] I did residency in the outside Boston, and we never really got any kind of formal communication training and how to counter vaccine hesitancy and vaccine myths. So I kind of as I went through residency, I felt like the numbers of vaccine hesitant parents just increased, increased my sense of competence. Dealing with those conversations decreased. That's why I saw this vaccine advocacy fellowship. I was so interested because it's just something that I've had no training in. And I think overall, as doctors, we really don't. Our strength is getting these messages across to people and it's so needed at the moment. And yeah, just really grateful for the experience in order to become better at it because it is, it's really tough.

Buddy Creech: [00:06:37] Yeah, it's one of my favorite things that we'll do as part of this program is formal media training, because I still remember the first time that I went through any of this. So interesting to figure out what it is that it's different to a question, knowing what you're going to say before you even start to say it, knowing all these tricks of the trade that come across very smoothly for people you know, that are on TV all the time. I mean, Sanjay Gupta knows how to talk to a camera. He didn't come out of the womb knowing how to do that. That took training. And that's what we're going to do with you all. All right. So I want to I want to pivot and say one of the things that's been so much fun about this fellowship program so far has been our day on the Hill. It was in late February that we descended on Capitol Hill for about 24 hours. It was hilariously timed because we didn't know we were timing it with the state of the Union, but we're all hanging out in DC on the state of the Union, feeling like big shots, and we were very far from the Capitol then. But that was fine and many of us fell asleep during it potentially. But the next day we were able to meet with several folks. And I want to talk a little bit about that day, because I think this can be for folks who haven't spent time on the Hill. This is a remarkably effective way to engage with our lawmakers and to serve as a resource. And certainly there are plenty of opportunities with IDSA and with PIDS to do this. So, Kelsey, I may start with you. Can you talk a little bit about once we said we were going to do this? First off, had you ever done it before? And what did we do as a group to kind of get ready for that day? What were some of the process like for that?

Kelsey Rowe: [00:08:12] I had been to the Hill once before in an advocacy capacity for medical students as part of the Medical Student Association of America, and talking about access to loans and making sure that medical students had certain protections. But that had been years ago. And so this was a very different topic. It was certainly a learning experience. I think the work for Hill Day started long before Hill Day itself, and that was something I didn't anticipate because we had to really meet and agree on, what were our goals? What did we want to accomplish with this? Because as I'm sure listeners have heard, there's a lot going on in the vaccine advocacy space on the Hill. And so we had a lot of meetings about, what do we want to do with this day? And I think that we ultimately settled on two separate but overlapping goals. One was that we had this opportunity to be the first advocacy group from pits coming and speaking to these senators and representatives, and we wanted to make sure that we're laying a foundation of being a resource for them. Also, making sure that we're leading communication lines open, creating a very friendly presence for them and not being confrontational. And so we wanted to make sure that we were coming to the table, ready to have those conversations and meet people where they are.

Kelsey Rowe: [00:09:23] And so we talked a lot about how to do that in this current climate. But then we also wanted to talk about, are there any specific tasks that we can have in this moment that would allow for possible change, or at least progress towards certain vaccine advocacy initiatives that we saw? We decided to look at different bills that are in the Senate, and we did so by looking at Congress.gov. We ultimately decided on one bill in particular, Senate Bill 2857, the Protecting Free Vaccines Act. Won't go into a ton of detail now, but basically making sure that the affordability of vaccines was protected, even with changing recommendations from the ACIP. And we wanted to try to propose that bill as something that we see as one option moving forward to protect access to vaccines without really pushing for it, because, you know, not every person we met with was in a position to support it, but we wanted to kind of create this opening for our group and give them an example of this is the type of thing that we want to ask for, but ask for it in a way that was building relationships rather than kind of putting people's feet to the fire. And I think that we accomplished that through a lot of preparation and a lot of talking ahead of time.

Buddy Creech: [00:10:34] Yeah. You know, this was one of the things that was really important to me because I think sometimes in our current culture, politically and in civil discourse, I think we're really struggling not to swing from one pendulum edge to the other. And so sometimes we combat extremism with a similar version of extremism. And I think we want to be really careful about that, especially if what we're really trying to do is build bipartisan support for things that are in the middle. And I love that spirit of let's try to agree upon what we actually agree upon, and let's try to make incremental moves, because that's actually been kind of how things have always worked, except for these punctuated times in our history where we have these really extreme moments. I laugh because that actually took a lot of conversation to get to that point, to figure out if that's how we were going to do it or not. But it wasn't the most controversial question. The most controversial question, I think, that we had was whether or not we were going to wear white coats, which when I first heard that, I'm like, what are we doing? I'm not walking around freaking Washington, D.C. in a pretentious white coat. But my goodness, we sure did. So, Kelsey, do you want to talk a little bit about that? And I mean, like we all might have different opinions about it. I ended up, I think I ended up liking it, but what was your take on all of that?

Kelsey Rowe: [00:11:56] Yeah, yeah, I think that we also wanted to make sure that we had white coats at the ready that were pressed and able to look good, which, you know, as pediatricians, we don't often wear white coats. So that was a feat in itself, but we kind of ultimately decided that white coats would be a good choice for a couple of reasons. One, in talking with our consultant who helped us prepare for the Hill, he was saying that this would help to draw attention, good attention as why are physicians here? I see them walking down the hall. What are they here advocating for? And we had people stop and ask us while we were wearing those white coats. And then also to kind of give this sense of knowledge and authority over this topic, because we are experts or becoming experts in vaccines, we felt that that would help to give that feeling of, you know, we're not here coming in suits and representing any special interests. We are here for our patients because we want to first be good pediatricians to them. And then the other thing I will say as is a woman in medicine. I found that often if I'm not wearing a white coat, my role can be confused for other roles. And so I appreciated that because all of us were wearing white coats together. It made us a very cohesive group where it was very clear that we are all physicians here to advocate for our patients.

Buddy Creech: [00:13:05] I really love that insight. I have to admit, again, I was not sold at first when we decided to do it, but then I got kind of excited. And, you know, we met another group of physicians that were there advocating for something very, very different. There was a little bit of simpatico there, and I think on both sides of the aisle, it immediately garnered a level of respect that might not otherwise have been felt during this time. All right. So you said you were just going to touch on the bill. And I think we actually need to think about this bill a little bit more, because you set it up really nicely. And Paul, I'm going to lean on you for this, is we chose a bill that probably was maybe low hanging fruit. It might not have been the sexiest of all the legislation that's out there, but can you hum a few bars about what it looked like to talk about this bill? Do you want to talk about it a little more specifically? And then, you know, what kind of responses did we start to get?

Paul Mitchell: [00:13:58] I think calling it low hanging fruit is a perfect description. It's something that we're really passionate and excited about and would be a welcome change, I think. On the vaccine logistical landscape but isn't overly controversial or inflammatory? At least we felt so. So as Kelsey mentioned, we're talking about Senate Bill 2857, which has a paired House bill, House Bill 5448. That for you policy wonks out there, those are the bill numbers. This is something that we learned about being on the Hill, is you got to have those numbers memorized because that's what the congresspeople and the staffers dabble in. They don't care about the titles. They care about the bill numbers. So this is the Protecting Free Vaccines Act. It was introduced in the House by Frank Pallone from New Jersey, and it was introduced in the Senate by Ron Wyden, my buddy, fellow tall guy from Oregon. The point of this bill is going in with an understanding that the CDC vaccine schedule has changed dramatically in the last year. There are a number of vaccines hepatitis B, hepatitis A, rotavirus, flu, Covid and meningococcal, which protects against meningitis that were previously recommended as routine recommendations to all children and have now been moved to the shared clinical decision making, are concerned with this. Aside from the fact that I think this is very different, as we all know from the AAP schedule that we are now utilizing, what does this mean for insurance coverage for patients? And so all vaccines recommended by ACIP are statutorily tied to being covered by the Centers for Medicare and Medicaid, as well as private insurance companies.

Paul Mitchell: [00:15:25] If ACIP recommends it, the insurance companies and the federal government have to cover it free of cost to patients and families. Our concern is with this change in the tenor of the recommendation by CDC, is there a possibility in the future that insurance companies will say there's no longer a routine recommendation, it is a shared clinical decision making recommendation, so we don't feel like we need to cover that anymore. At the moment, I will say that all insurance companies are saying that they're going to continue to cover all vaccines free of cost to patients and families without cost sharing measures. But financials change over time, financial considerations change over time. And I think there is concern that those loyalties may shift at some point. And so what this bill does is it ensures that all vaccines that were covered and recommended by the ACIP December, October of 2024, before all of the recent changes at HHS, will continue to be covered by Medicare, Medicaid and private insurance companies. It does have a sunset date of 2030, but it is at least a stopgap measure to make sure that any patients who want access to vaccines, regardless of whether they're vaccine hesitant or they are very pro-vaccine family, there won't be any financial barriers to them getting vaccinated. They can get these free of cost.

Paul Mitchell: [00:16:36] We had a lot of agreement with almost every office we talked to about this issue in general, Democrat and Republican. I obviously think there were more Democrats who were maybe more, more willing to be co-sponsors or sign on to this bill. But even in the Republican offices and the more conservative offices, everybody I think, has an agreement that access to vaccines is important. There should be a discussion with your pediatrician about exactly what you get. And I think we all respect parental autonomy as the ultimate decision maker in that. But everybody agreed that people should be able to have access to vaccines, and they should continue to be free of costs without cost sharing measures. Part of what we talked about in these offices is that this outside of Congress, is something that there's broad agreement upon in the population, regardless of your political affiliation. Even if you are a self-described MAHA voter, Make America Healthy Again voter, the majority of those folks do agree in the efficacy of vaccines and that vaccines should be accessible and affordable for folks. So again, low hanging fruit, I think something that we could all agree upon, but an important measure to ensure that we're removing any financial barriers for families going forward.

Buddy Creech: [00:17:42] Yeah, I think this was helpful. And I think our message changed over the day too, because I remember meeting with one Republican senator's senior policy person and her making the comment that this bill sounds a whole lot like what Dr. Oz, the director of CMS, has already said would be the case. And so as the day went on, we sort of started to put that language into our ask, which was, you know, we're just trying to put into the statute what Dr. Oz has already signaled that he wants. And using that sort of language of acknowledgement of walking into a room and not being antagonistic and not trying to play gotcha and even appealing based on language and their own trusted messengers. Right. So I really think that probably will pay dividends. Feargal, what was your experience? So, okay, we've talked about the mechanics. We've talked about what we talked about. Okay, let's go brass tacks. What was it like? What did you think about it?

Feargal Donaghy: [00:18:35] The biggest thing I took away, for better or for worse, was that this issue is on the minds of lawmakers and their staffers. They are vaccines are something they know is topical and something that is a lot of media attention at the moment. Overall, I felt like they were really receptive to learn more, so they had an awareness of the issues, but they wanted to learn more. And moreover, I did not really feel that they had had much of an opportunity to hear from the medical establishment about our views on vaccines and to hear us advocating in favor of them. It seemed like that was a new perspective that they hadn't had. So it was really great to be able to share that. It was great to be able to share the polling data that the team prepared for us, just showing how uncontroversial childhood vaccines are to the vast majority of the US population, and then how completely uncontroversial they are to all mainstream medical organizations. And so we were just carrying the prevailing consensus from our profession to these lawmakers. And it was refreshing to be able to do that.

Paul Mitchell: [00:19:36] Now, I was going to say, I felt like to the opportunity to share patient stories was what seemed really impactful to me. I think, you know, you're watching these staffers who meet with a lot of folks, have very busy days, and you can kind of tell the things that they took the time to write notes about and the things that they didn't. And I felt like getting to share patient stories. So I talked about a patient who was admitted with flu myocarditis. Is not a vaccine hesitant family, it's somebody who gets their flu vaccine every year, but had a number of logistical barriers that made it difficult to get the vaccine. And they hadn't gotten a flu shot this year and then ended up in the ICU with myocarditis. And so I think getting to use these, you know, impactful stories that we think about all the time as clinicians to be able to, to advocate for breaking down these logistical barriers was really important.

Feargal Donaghy: [00:20:17] With each lawmaker that we went to see, we kind of split it up so that one person took lead. It was really nice that we were able to give each other feedback and tell each other what went well, what didn't go well, and then practice pivoting the message. You know, with Democratic lawmakers, we were kind of focusing more on, you know, the vaccine preventable illnesses and framing it in that kind of mindset. Whereas with the Republican lawmakers, we were kind of focusing on liberty and, you know, the freedom to choose to vaccinate your children if you want to. I'm not being prevented by prohibitive cost or access constraints, so I really like that. And then the personalizing of the message too. Like we all worked on communicating, starting from a place of connection with the staff or the lawmaker via that, from being in the same constituency or having some sort of link to try and make what we were asking for and trying to advocate for that a little bit more personal to see if we get more traction that way. So I learned a phenomenal amount on how to communicate with lawmakers. And yeah, it's tremendously positive experience.

Buddy Creech: [00:21:14] Well, you all were expert at it because everybody was modifying the message to exactly that constituency. And it was pretty funny because I heard the message, whatever, seven different times, and it sounded very different each time. They were certainly components that were rinse and repeat. But I mean, we were beg, borrowing and stealing just to try to make a connection because we know that they're having 20, 30, 40 meetings a day with folks that have a variety of interests, and we're just a cog in that wheel. And so how do we make ourselves memorable and how do we provide ourselves as a resource? And, and I'll tell you, there's been some great emails back and forth already of, you know, what do you think about this? And we're going to use you as a resource. And I think that's one of the most important things that we can do. I really appreciate you all sharing your story about this because this is not, you know, one of the temptations would be to do a fly in, drop in, come out and we feel like we've accomplished something. And I don't think that's what we want to do with this fellowship. And it's not what we want to do with PIDS or IDSA. And so what we're hoping to do, and I think we got some really good leads on is to potentially, you know, IDWeek's going to be in DC this fall, so it's a great opportunity for us to reconnect with lawmakers and potentially even do a lunch and learn or some sort of other informational session that we get as many staffers as would be willing to come. And we just talk about the issues, and we have basically a roundtable about what things are important to us as pediatricians, as infectious disease providers, as vaccinologists. And I think building on events like this can be really, really important. So kudos for what you all did to prep for it and kudos for how you did it.

Buddy Creech: [00:22:52] I will say that there are so many opportunities to be involved in this. Certainly through PIDS we have some opportunities. I can't speak highly enough of Alan Fleming in particular, and Kylie Willis and Kristie Phillips, who are there with us that day. Mike, our consultant who walked us around the hill after having worked there for many, many years. But I also want to make sure people are aware of the member advocacy program through IDSA. This is a really important way where we can contribute to different activities. And then there's also an advocacy training module that's available in the IDSA Academy, and those links will be in the notes for this episode, because I think it's really important that we take advantage of those. We get training where we need it and we link arms. We're better when we're doing this together. And so let's try to figure out how we do that.

Buddy Creech: [00:23:39] So I want to thank you all for sharing your experiences, fellows in this program. There's a lot more to come, and I'm going to be excited. And I know that Jason Newland, who is the co-director of this with me and has really been a remarkable force in this space. Jason and I both would agree that if you all are the future of vaccine advocates, we're going to be in really good shape. So proud of you all and proud of the work that you all are doing. If you all have any questions from an IDSA standpoint, a PIDS standpoint about how you can get involved, please check out the IDSA and PIDS websites. Take a look at opportunities. There will certainly be ongoing opportunities, especially as we descend to IDWeek in the fall. So look for ways both at the local and at the national level that you can be involved. Well, thanks everybody for listening. This has been another episode of Let's Talk ID. Thanks for joining. We'll hopefully talk soon. Take care.