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

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Hey, everybody.

It's me, Sam Stein, managing editor at the bulwark, 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 fascinating

political movement and group called Grandparents for Vaccines, and the person who he spotlighted

for the story, who is our other guest on this program, Trees 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.

Trees has a story about how important vaccines are that's very personal, and it's the

story that compelter 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 my phone interview earlier about this, but I've been involved with Grandparents

for Vaccines since 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 and a 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.

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 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 a 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 they had a caseworker that would go around and help them manage the situation, help

them pay their rent to make sure they're getting the house cleaning chores done, help resolve

conflicts, take them shopping and 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 a 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 passed 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, but people are starting to question

the efficacy of the vaccine.

Right.

Right.

I think that's really a hard, 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 in 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, Dr. East, when I was reading the piece, it was very clear that you're interested

in making sure that people understood the severity of measles predated this time period,

right?

I mean, 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,

not necessarily a 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, you know, in their days where

they had, like, you know, 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 deaf 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 that 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 to what Teresa's 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 collected 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 always am sort of struck by the stories of how people reacted when these vaccines first

became available, you know, people lining up for the polio vaccine, right?

You know, 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.

If you, 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 impromptu on this, you know, this

is we're hearing and 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.

At trees, 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, 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, that a solution

had been created to something that was a big problem.

And especially I think is more and more people start working outside of the home.

Others 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 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 and

Texas, North Carolina now.

I mean, obviously it's bad.

What is in the public health community?

What is the fear here?

Well, the fear is that it's exactly like Terry said, you know, we achieved an elimination

status for the measles about 20 something years ago, 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'll 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 can't just.

And then, you know, it can, an outbreak can start and it'll kind of go for a few weeks

and you'll, you'll find hundreds of people you can get above.

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 in 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, a 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, first of all, we're talking about children here.

So, you know, I mean, you know, they're at the mercy of their parents, and obviously

parents have rights to do with, you know, over their children's health.

But there are people who can't get the vaccine, and you know, other people, you know, compromise

people getting chemotherapy, they're vulnerable.

And if measles is circulating, they, you know, they run a chance of getting it, so this

is affecting them.

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All right.

Jonathan, then back to your trees.

Because what we've seen recently, this was actually a 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.

But I guess it is a backlash, where politically, the White House has begun to recognize that

all this talk about vaccines, especially specifically coming from Robert of Kennedy,

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?

John.

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.

And 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, and you know, if you go online, they are, 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,

we'd see these stories about outbreaks.

And then we hear warnings from some pediatricians and doctors saying, hey, please, you know,

this isn't good.

People are going to react.

You know, 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 finally.

One thing I saw was a really quick uptick in vaccination in the communities where there

was low-vacic vaccination.

And, you know, my read on that, I get, you know, again, this is all hunched.

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 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, so and so is the hospital because people do end up on the hospital

for 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 Trees, 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's sort of 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 ten people, maybe even more.

And when you've got that many people that, you know, it's kind of out of your control

then.

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 try to emphasize, you know, that sort of thing and help people sort of see that

part of it so they can make a decision that is best for them.

Now I will say this, when we started at, when Jonathan was reporting his piece and I

was looking at it from a netting 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 said here.

And you're going against an absolute avalanche of disinformation, misinformation and, you know,

whatever else you want to call it.

And then we kind of stumbled upon this interesting study, which was from University of Pennsylvania

in 2024, it's 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, unfortunately, for those of us in the fact checking

business facts by themselves, 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 invaded 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 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 this 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 we're getting vaccinated, wait a minute,

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 from your community, who is talking about this, it's a real, live person,

someone you can see, you can see there 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 it best for your kids to see someone to see someone who's

older, grandparent, you know, there are grandmothers, everybody can trust 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, so I'm going to make

an observation here and then Teresa can close out, 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, 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 that, 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.

So 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 and this has given me kind of a, it's energized me

and it's given me a mission, basically.

But I truly think, I pictured my sister Nancy right here.

I truly think that she's up in heaven looking down and cheering 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 and the thing

that I really dread is meeting the first child, a parents with a 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 survived but

lived 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, let's I really appreciate it.

Thank you too.

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