Bulwark Takes

“Just Measles” Left Her Sister Disabled for Life (w/ Therese Vogel)

27 min
Mar 20, 202629 days ago
Listen to Episode
Summary

This episode explores the resurgence of measles outbreaks across the US and the political movement against vaccines, featuring Therese Vogel from Grandparents for Vaccines. Vogel shares her personal story of how measles left her sister with lifelong intellectual disabilities, and discusses the organization's efforts to counter vaccine hesitancy through personal storytelling and community engagement.

Insights
  • Collective amnesia about pre-vaccine disease severity drives vaccine hesitancy; generations without direct experience of disease complications are more susceptible to misinformation
  • Credible messengers (grandparents, community members) are more effective at changing vaccine attitudes than facts alone, particularly among skeptical populations
  • Measles outbreaks are spreading across state lines due to sub-95% vaccination rates in communities, creating cascading public health risks beyond unvaccinated individuals
  • Political leadership's anti-vaccine stance is creating policy-level barriers to vaccination, but polling shows most Americans still support vaccines when aware of outbreak risks
  • Personal narrative and lived experience are powerful tools for public health advocacy, especially when delivered by trusted generational figures
Trends
Rising vaccine hesitancy driven by political polarization and government-level anti-vaccine messaging from HHS leadershipMeasles elimination status reversal; US moving from elimination (2000) back to endemic outbreak cycles in low-vaccination communitiesGrassroots public health advocacy by older generations responding to government policy failures and misinformation spreadSocial media as double-edged sword: can spread misinformation but also enables credible messengers to reach skeptical audiencesShift in White House messaging away from anti-vaccine rhetoric due to voter backlash and visible outbreak consequencesCommunity-level vaccination rate disparities creating localized public health crises (75-78% vs required 95% for herd immunity)Long-term disability outcomes from vaccine-preventable diseases underreported compared to mortality statistics in public discourseIntergenerational knowledge gap: younger parents lack direct experience with pre-vaccine disease severity that older generations witnessed
Topics
Measles vaccine hesitancy and anti-vaccine political movementsHerd immunity thresholds and vaccination rate requirementsMeasles outbreak clusters in South Carolina, Texas, North Carolina, and FloridaEncephalitis and intellectual disability as measles complicationsRobert F. Kennedy Jr. and HHS anti-vaccine policyGrandparents for Vaccines advocacy organizationSocial media effectiveness in vaccine advocacyCollective amnesia about pre-vaccine disease burdenCommunity sheltered workshops and disability servicesSpecial needs trusts and disability support systemsMeasles transmission rates and contagiousnessVaccine-preventable disease morbidity vs mortalityPolitical polarization of public health policyCredible messenger effects in health communicationUniversity of Pennsylvania vaccine social media study
Companies
Portland Community College
Therese Vogel taught in the nursing program there for 35 years before retirement
People
Sam Stein
Host of the episode and moderator of the discussion about vaccines and public health
Jonathan Cohn
Wrote the newsletter piece about Grandparents for Vaccines that prompted this episode
Therese Vogel
Guest sharing personal story of sister's measles-induced disability and advocacy work
Robert F. Kennedy Jr.
Leading government anti-vaccine messaging and policy that prompted public health concerns
Nancy Vogel
Contracted measles at age 4, developed encephalitis and intellectual disabilities lasting her lifetime
Donald Trump
Appointed Robert F. Kennedy Jr. to lead HHS, enabling anti-vaccine policy direction
Quotes
"She was one of the ones who developed encephalitis as a complication. She was hospitalized for a number of weeks. She had a high fever, and she did recover, but she was left with intellectual disabilities that affected her for the rest of her life."
Therese VogelEarly in episode
"Measles is one of the most contagious diseases in the world. And it takes a vaccination rate of 95% to achieve herd immunity, where people, enough people around you are protected that you're not going to be affected."
Therese VogelMid-episode
"You light the match, there's no kindling. Well, now you have these large numbers of communities where it were below 95%. And some of these communities way below 95%, and it just catches."
Jonathan CohnMid-episode
"The people who are positive vaccines are quite folk. They're very passionate about it. They are quite vocal. But we've seen a lot of polling on this now. Most Americans believe in vaccination."
Jonathan CohnLate-episode
"What else do you do? This has given me kind of a, it's energized me and it's given me a mission basically. I truly think that she's up in heaven looking down and cheering me on."
Therese VogelClosing segment
Full Transcript
Hey everybody, it's me, Sam Stein, managing editor at the Bull Work, and I'm here for a very special conversation joined by Jonathan Cohn, who everyone knows by this point, author of the Breakdown Newsletter. We're going to be talking about one of his recent newsletters, which is about a fascinating political movement and group called Grandparents for Vaccines, and the person who he spotlighted for this story, who is our other guest on this program, Trice Vogel, who's joining us from the great state of Oregon. The reason Jonathan wrote this piece is because we are in the middle of, I don't want to call it necessarily a crisis, but it's getting towards that place where our political leadership has so distrust in vaccinations, and not only so distrust, but taken practice steps to decrease the use of vaccinations. Trice has a story about how important vaccines are that's very personal, and it's the story that compelled her to get involved with the organization, Grandparents for Vaccines. Thank you. First of all, thank you, Samuel, for having me as a guest on your show, and thank you for Jonathan, too. We had a nice phone interview earlier about this. But I've been involved with Grandparents for Vaccines since about September, I think, is when it really started forming and becoming an official organization and taking off. And I'm a retired RN, also a nurse educator. I taught at Portland Community College in the nursing program for 35 years. I'm a parent of two grown sons, and I have three granddaughters. But the main reason that I got involved is that I had a sister who was older than me. She was four years older. And when I was a baby, and she was four, she contracted measles. She had been born developmentally normal. But when she got measles, she was one of the ones who developed encephalitis as a complication. She was hospitalized for a number of weeks. She had a high fever, and she did recover, but she was left with intellectual disabilities that affected her for the rest of her life. And so I think she went through grade school, elementary school up to the eighth grade. But I think her learning really plateaued at probably about fifth grade or so. And when she finished at the school that we went to, my parents were told that she wouldn't be able to progress on into higher education into high school. So she went into some developmental education programs where they helped her to just get as far as she could with basic reading and writing and that sort of thing. And she learned some vocational skills. And she was really fortunate that around that time they were creating a sheltered workshop in our hometown in Virginia, Winchester, Virginia. And so she started working in the sheltered workshop there around the time that they opened, and she worked there for over 40 years. She also was fortunate to get part of this community housing program, Shenandoah Valley Community Residences, where they helped her to gain semi-independent living situation. She lived in a complex of duplexes where they had two people living together with disabilities, and then they had a case worker that would go around and help them manage the situation, help them pay their rent, make sure they're getting the house cleaning chores done, help resolve conflicts, take them shopping, that sort of thing. And so with those services, Nancy really was able to lead a very full and very satisfying life in a lot of ways. But I think as she was getting older and as our parents were getting older, they were very concerned about what would happen with her after they passed away. And for quite a while I thought, well, maybe she'll come live with me. But then I found out that state laws being different from I was living in Oregon by then, the laws there versus Virginia, that it was far better for her to stay in Virginia because she had already met all the requirements for disabilities and everything there. Plus the fact that I realized that she had lived almost her whole life in Winchester and so many people there knew her, loved her and helped her, and she knew the bus routes and that sort of thing. And so she stayed there. After our father passed away, I was able to get established a special needs trust for her, which really helped a lot because probably about six years after my father died, she developed dementia. And so she lived the last six years of her life in assisted living memory care center and passed away in 2019. And so as I say, she was one of the fortunate ones, I think, that she really had a very full life, very happy life. She even flew out to Oregon to visit my husband and me a number of times. And that was all really good. But I always had sort of felt bad about the fact that she didn't have the chance to have the kind of life she could have had if the measles vaccine had been available then it didn't come out until the 1960s, which was well past when she had that. Yeah, I mean, I think the important point here is that she was born at a time when the vaccine was not available. Right. And now we're in a time where the vaccine is available. Right. But people are starting to question the efficacy of the vaccine. Right. Right. And I think that's really a hard situation to be in, especially as a nurse having seen that measles was basically considered not quite eradicated, but definitely under control in most of the country where it wasn't something that was going to cause outbreaks where things would happen, such as kids. You know, most kids that get measles do have just a normal course and it's fairly benign, but there's, you know, those one and however many hundreds or thousands that either can die from it or can develop encephalitis and suffer a lasting disability such as my sister or blindness or deafness. Now, you know, when I was reading the piece, it was very clear that your interest in making sure that people understood the severity of measles predated this time period. Right. I mean, you, you were a nursing, as you said, and you wanted to make sure that your sister and her legacy and her story didn't get lost in history. But I still am left wondering what it was like for you to watch over the past couple of years as we've seen political leaders go out there and say, well, this is, you know, a not necessary vaccine or it's a vaccine that actually causes more harm than good. As you've watched that, knowing what happened to your sister, I'm just kind of curious what the internal emotions had been for you. Really, really challenging, really difficult. I think that because it has become so, had been under control so well, so well, people hadn't seen situations such as Nancy's. A lot of people knew her but didn't know how she had developed her intellectual disabilities. I think a lot of people thought she was born with that. I think that there's a whole generation of people that just really have not quite, it hasn't dawned on them or they haven't seen enough of it to know that this sort of thing can become part of life again. I think when I think about my parents, how they grew up in their days where they had like seven or eight kids at the time and how many of them might not make it even through childhood. And a large part was due to death from childhood diseases that now are so well under control. But I think that we're going to probably have to go through some tough times where people are going to be caught in this web of people that are not vaccinated that weren't expecting that that would happen, hadn't heard that it could. Jonathan, to you, I guess the question is, is that sort of the case with these types of medical breakthroughs where society gets accustomed to life where there isn't disease and they get complacent? Or conspiracies take hold? And if so, is the only solution, what Teresa is sort of talking about here, which is you have to actually experience the badness again? Yeah, I mean, I think there's a lot of evidence that this collective amnesia is a big part of why we see vaccination rates falling. You know, talking to Teresa, talking to other people and grandparents for vaccines, and even before that, just talking to people who have been around. It's extraordinary to listen to the stories. I was struck by the stories of how people reacted when these vaccines first became available, people lining up for the polio vaccine, right? Eagerly signing up to be part of the testing groups for measles vaccines when they came through. And that was because these people, it was part of their lives. I mean, they understood what this was in a very immediate first person sense. Everyone knew people who had these diseases, I mean polio especially, but measles as well, diseases like that. It was just foremost in their minds. And they appreciated what an important advance this was, what a life changing, life saving developments these were. And we have seen, you know, we have seen vaccine hesitancy rise. You've seen vaccination rates fall. And this was even before, you know, Donald Trump put Robert F. Kennedy Jr. in charge of HHS. This was happening. Of course, now you have the government putting its imprimatur on this. You know, this is where hearing this sort of push against vaccines from our government. But what makes this all possible is that it's an easy door to push on because people have forgotten and they don't remember these things. That's such a smart point. And Teresa, actually, I'm kind of curious, because you lived through because your sister got measles. What was it like when the measles vaccine did come online for you and your family and I guess for society? Boy, for my family, I don't know if it made a big difference because by then I had a brother also who also developed measles. He had just a regular case of that. So he had had it. I didn't, I never developed measles, but I did have the antibody to it. But I think that for, you know, people younger than us, it was just, it was welcome with open arms. You know, a lot of people did. They just, you know, it was looked at that a solution had been created to something that was a big problem. And especially, I think, is more and more people started working outside of the home, mothers working outside of the home. And the whole complications that come up with when you had children with something like measles or chicken pox, that sort of thing, you've got to take time off from work and that sort of thing. They were glad to be able to have a situation where their kids were protected against that sort of thing. And then as a nurse, you know, finding out some of the statistics and everything behind that, that's one thing. And even just recently, I was reading about that to refresh my mind about some of the numbers with this, because I had not, I did not remember the fact that measles is one of the most contagious diseases in the world. And it takes a vaccination rate of 95% to achieve herd, herd-emuted immunity, where people, enough people around you are protected that you're not going to be affected. So now we're seeing people, anytime that it gets below, I think it is 92%. People are going to be vulnerable. And we're seeing some communities now that are down to 75%, 78% and that sort of thing. And that's where you start seeing outbreaks. Well, Jonathan, let's talk about outbreaks because we've seen them in South Carolina, in Texas, North Carolina now. I mean, obviously it's bad, but what is, in the public health community, what is the fear here? Well, the fear is that it's exactly like Therese said, you know, we achieved an elimination status for the measles about 20 something years ago. I'm trying to remember the exact date if it was 2000 or right after. And, you know, elimination doesn't mean that you never get a case of the measles because it's circulating around in the world. There are going to be people who bring it back from time to time. What it means is that when you have herd immunity, when you're above that 95% threshold, it's just not going to spread very far because it's not going to find people to new people to infect. You light the match, there's no kindling. Well, now you have these large numbers of communities where it were below 95%. And some of these communities way below 95%, and it just catches. And then, you know, an outbreak can start and it'll kind of go for a few weeks and you'll find hundreds of people. You can get above a thousand. I mean, this is what we saw last year in Texas and what we saw happening in South Carolina. Now, they can die out over time, but, you know, things move. And for right now, for example, we have outbreaks in Florida. I think, you know, it takes a while to, you can't always tell right away to have to do some testing where a case has come from. But I know when I was talking to people in Florida, there was concern that the northern Florida cases might have been, you know, literally come right down to 95. Someone picked it up while they were in South Carolina, brought it right down to northern Florida. And now you have an outbreak there. Southwestern Florida, there's a university, religious university, have a large number of people who were homeschooled, did not get vaccinated. So you have an outbreak there. But just in the last two weeks, we've started to see cases around the university because, of course, it spreads. And this is the concern is that you can't, you can't contain it. And of course, there are, you know, I think sometimes people say, well, look, I mean, you know, if people don't get vaccinated, that's, you know, unfortunate, but I can't stop that. But the two things are, our number one, we're talking about children here. So, you know, I mean, you know, they're at the mercy of their parents. And, you know, obviously, parents have rights to do, you know, over their children's health. But there are people who can't get the vaccine. And you know, there are people, you know, compromised people getting chemotherapy. They're vulnerable. 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But trust me, using it in real life, even better. My flowers love it. After trying the Pocket Hose, I'm never going back. This hose is so lightweight and durable. Watering the yard is a dream. For a limited time, my listeners can get a free Pocket Pivot and their 10-pattern sprayer with a purchase of any size Copperhead hose. Just text TAKES to 64,000. That's TAKES to 64,000 for your two free GIFs with purchases. TAKES to 64,000. Message and data rates may apply. See terms for details. All right. Jonathan, then back to you, Therese. Because what we've seen recently, and this is actually the subject of your most recent newsletter, is although that was more legal than political, is that I don't want to call it a backlash yet. But I guess it is a backlash where politically the White House has begun to recognize that all this talk about vaccines, specifically coming from Robert F. Kennedy Jr., is not going over well with voters. And they're trying to shift the conversation away. Is it because we're seeing episodic measles cases here and there, or is it because people are beginning to recognize that maybe this isn't the smartest health policy, or is it a bit of both? Yeah. I mean, I haven't seen any empirical testing on this, but my gut instinct is that it's a little bit of both. Right. And it's a classic silent majority situation. I mean, the people who are positive vaccines are quite folk. They're very passionate about it. They are quite vocal. Of course, the Secretary of Health and Human Services now is one of them. They have a very, and if you go online, they are relentless. They put their views out there so it can feel like they are really dominating the debate. But we've seen a lot of polling on this now. Most Americans believe in vaccination. Most Americans don't want their kids getting the measles. And maybe it was not really foremost in their mind before, but you got to think, right, that we'd see these stories about outbreaks. And then we hear warnings from some pediatricians and doctors saying, hey, please, this isn't good. People are going to react. I will say one thing that I thought was a really interesting development was in South Carolina. That outbreak does seem to be kind of dying out fine. And one thing I saw was a really quick uptick in vaccination in the communities where there was low vaccination. And my read on that, again, this is all hunch. We haven't seen this really tested. But my suspicion is there's a fair number of people out there. They're not that focused on this. And they hear there's some controversy. And you know, you're a busy parent. It's hard. It's like, it's hard to sit through this information. So, yeah, maybe I won't get the vaccine. Maybe I won't. Now, all of a sudden, your neighborhood, your school, your shopping mall, your grocery store, people are getting the measles. You start to hear, oh, someone's in the hospital because people do end up in the hospital from this. All of a sudden, people start to like, oh, I'm going to get my kid vaccinated. And I think that is a sign of where people might be. And then that brings me back to Therese, which is, I mean, grandparents for vaccines. It's a fairly straightforward concept. We are a generation that lived through a time period when there was no vaccine. That's right. We experienced it. We witnessed it. In your case, you had a family member afflicted by it. Here's why you need to understand the importance of vaccines. So tell us a little bit about, you know, we know what the mission is, but tell us how you go about executing. Well, we tell our stories. As I started in this, I knew a couple of the people that were involved in the process, and they encouraged us to start telling our stories, going to different community gatherings, maybe at our church or, you know, community center or that sort of thing, and just talk about that. A number of us made YouTube videos to just sort of talk about it. And I told my story about Nancy. And then it sort of is grown from that sort of thing. And we've really been trying to emphasize we're not trying to be political. We're not trying to, you know, shame people or, you know, scare people or anything like that. We're just simply telling our stories that of what we've experienced so that people know. So they're making informed decisions. And I think a certain amount of, you know, sharing some of the information about measles, how it quickly it is transmitted, just like you were talking about, Jonathan, there, it's important for people to know that one person who is infected with measles can spread it to at least nine or 10 people, maybe even more. And when you've got that many people, but, you know, it's kind of out of your control then. And so if there's a person, you know, there are people that legitimately have fears or convictions that they don't want to have their children vaccinated, but it's not just a personal decision. It affects everyone around you that you come in contact with. So we tried to emphasize, you know, that sort of thing and help people sort of see that part of it so they could make a decision that is best for them. Now, I will say this, when we started at, when Jonathan was reporting this piece and I was looking at it from an editing perspective, one of the things that kind of went into my mind is, man, this is an impossible task, right? Here you are, a group of grandparents trying to master social media, which is no offense, not necessarily the best skill set here. And you're going against an absolute avalanche of disinformation, misinformation, and whatever else you want to call it. And then we kind of stumbled upon this interesting study, which was from University of Pennsylvania, 2020, four states not so long ago. And what they found was kind of interesting, which is that exposure to social media actually would increase vaccine uptake. And it helped overcome skepticism of Republicans, primarily because it would show them that people important to them were getting vaccinations, which surprised me. And Jonathan, I think it surprised you too. Why? It did surprise me because I mean, we do have a fair amount of research on not so much in the vaccine context specifically, but just in general, that when there's misinformation out there, facts don't actually tend to unfortunately for those of us in the fact checking business facts by themselves. Don't matter. They don't matter. It's a little depressing. But also, to be fair, there's a reason for that, which is, I think, in today's environment, so much of what people they're they're innovating with so much. There's so much coming through them. And we don't have the sort of, you know, we're not this isn't 50 years ago when there was Walter Cronkite and a very small set of people who everybody trusted. You're being bombarded with 10 different opinions. It's hard. I mean, I follow this stuff. And every time I'm seeing stuff on social media about vaccines all the time, I'm like, wait, is that true? And I have to go check it and it takes me a while. And I know what I'm doing. I think, though, that what that study seems to be capturing, and I think this is directly relevant to what grandparents for vaccines is trying to do is that the messenger matters. And having people who are credible, believable messengers, I think does make a sense, make a difference. So in that Penn study, what we're seeing is that isn't even so much that someone is telling them these are what the facts show, right? What the studies found was that, oh, people, I know are getting vaccinated. Wait a minute, that maybe this thing is okay. And I think that's why it's so important what Teresa was just describing, not just on social media, but, you know, going to that church meeting, going to that school meeting. You're a parent in your community and you see someone who you know from your community or is at least in from your community who is talking about this. It's a real live person, someone you can see. You can see they're being honest. And look, you know, Sam, you're a parent of a young children. I'm a parent of somewhat older children, but I remember what it was like and there's a lot going on. And you want to be careful. You want to do what's best for your kids to see someone to see someone who's older. You know they're a Grammy. Everybody trusts grandparents, right? I mean, sure. That to me is a really powerful kind of message. Well, let me just say this. I've been asking a lot of questions. I'm going to make an observation here and then Teresa can close that. But like, there's something inherently depressing about this, about that specific point, because you would think that the grandparent generation wouldn't have to be called into duty like this. That it's like, you put in your time, you live through a time where there was no vaccines. You're, you know, you should be going out and enjoying retirement or whatever you're doing and following your hobbies and not having to worry about things that science dealt with. But that's not what you're doing. And while I'm very grateful that you're going back into the breach once more, it is, it kind of sucks. I have to be honest. I don't know if you feel that way. Maybe you feel more uplifted about it. I don't know. Well, you know, it's funny. He said that because I was thinking just as you were saying that, that I wonder what my parents and their generation, I think they're the ones that would be thinking, why the heck are you all out there doing that? Because of the fact they had brought us to this situation where, yeah, these were taken care of. So there we don't have to deal with it. And now we do. Yeah, I guess I just sort of feel that, well, what else do you do? I think for me personally, it has helped me because it was really hard when Nancy died because she was the last person in my immediate family. My brother died early. My mother died actually quite young and my father. And then so I'm the only one left. This has given me kind of a, it's energized me and it's given me a mission basically. And I truly think, I pictured my sister Nancy right here. I truly think that she's up in heaven looking down and shearing me on because she was that kind of a person. She would go talk with people about developmental disabilities and what it's like living with a disability. And she'd be going, go for it. So, you know, for me, I feel good, but yeah, I don't want to do this forever. The thing that I really dread is meeting the first child, parents with the child that has something like what she has, because there's a lot of emphasis right now on, you know, measles deaths. But I don't think they talk a lot about the number of people that survive but live with disabilities from it. So, yeah, I'll keep doing as long as I can. Well, I appreciate that you're energized. Thank you for all you're doing. And for folks who are interested in getting involved, do go check out the group. It's grandparents for vaccines. They're doing great work. I'm glad to see that you've had some growth. And I'm interested to see in how this all plays out and the work that you do in the near future. Trees, thank you so much for sharing your story. I really appreciate it. Thank you too. For everyone who watched, thank you for watching. And thank you for subscribing to the Bull Work and for your support, which allows us to tell these stories, both in written and in video form. Your subscriptions mean everything for us.