How Austin mom Jinny Suh is taking on anti-vaxxers, President Trump and RFK Jr. in defense of inoculation.

 

Good day Austin:

Jinny Suh is a South Austin mother with a baby and a four-and-half-year-old, a lawyer who received a bachelor’s and master’s in biology and the founder and leader of Immunize Texas, the grassroots organizing arm of the Immunization Partnership, which is having a lobby day the Capitol today.

Here is her story.

Suh, who grew up in northern California, and her husband, who grew up in Florida, moved to Austin from Manhattan for work and for a more affordable lifestyle.

Suh:

I had my first son in 2012. I knew nothing about being a parent, I knew I wanted to be a parent, that was it, so I joined every possible mommy’s groups I could, and there’s a billion of them on Facebook and Meetup.com.

People are posting all the time about what is going on with their children – `Oh my kid has an ear infection, what am I going to do, I can’t get ahold of my doctor.’ And in all of the groups, at one point or another, someone would post about not vaccinating, and I had no idea that that was even possible.

You know, “I’m not sure and I’ve read all these studies and I don’t trust doctors, and I want to live the natural way.” Especially in Austin you see a lot of that kind of talk.

We were a little crunchy, but not to the point where I would not vaccinate.

I find that thinking ignorant.

I learned you could have an exemption (from vaccinating) here.

On line and in personal discussions, I would get into fight sometimes. I was an unwitting vaccine advocate. I would speak up, `I don’t think that’s right, and that’s crazy.’

I’d go to a play date and find out that somebody in the group didn’t vaccinate, I’d get really angry about that. I felt it was something you had an obligation to tell me if you chose not to vaccinate, that you were endangering others.

If there was a medical condition that made a vaccine risky, that was a legitimate reason not to vaccinate, said Suh.

But, if you’re just going to make a personal decision without any medical reason behind it, to me that’s probably indicative of a lot of decisions you are making that don’t really align with my beliefs. And  do I think you have a likelihood of something your child could pass on, whether it’s whooping cough, or something much more serious, like measles.

Suh’s first pediatrician in Austin was sympathetic to anti-vaxxers.

She now goes to Austin Regional Clinic, which in 2015 adopted a policy of not accepting new pediatric patients who don’t vaccinate.

Suh:

I was very vocal about supporting vaccines and making sure my children were vaccinated and also educating people about them.  But at the time, there was this across-the-board-attitude that you don’t judge parents based on vaccinations and it really annoyed me.

So I kind of, on my own, decided that I’ll just post as much as I can about vaccinations on my own personal page because it seems ridiculous that people aren’t talking about it, because they are treating it like every other thing that a parent does, which, in most cases, I don’t really care what you do, because it doesn’t really affect me.

But when you don’t vaccinate, it does really affect me, so why can’t I talk about it,without being yelled at or admonished? This is not just a personal parental choice. It’s a public health issue.

There are a million flavors of anti-vaxxers, which is why it’s kind of hard to fight them because there is no  quintessential identity that they have. There’s not one argument, there’s not one belief, there’s not one conspiracy theory. They might start out with Argument A and you say, `Well, that doesn’t make sense and here are the facts,” and they go, `Well, even if that’s not true, here is Argument B,’ and they can go all the way through dozens of arguments and they all sort to take time to explain away, which is why  I don’t generally interact with them.

Suh became more formally involved in pro-vaccination activism in concert with the Immunization Partnership in 2015, at a time when there was surge of anti-vaxxer energy with the birth of  Texans for Vaccine Choice.

Here From TVC’s website.

A Community Is Awakened

In February 2015, on a late Friday afternoon, a community was awakened by a media report that a member of the Texas House of Representatives was planning to file a bill to end religious and philosophical exemptions to recommended public school vaccinations.

Immediate Action
To Preserve Our Rights

Parents immediately took to social media to begin formulating strategies to kill the legislation in its tracks and preserve our rights. Soon after, a private Facebook group called Texans for Vaccine Choice was formed which quickly grew to over 1300 members from across the state.

A Time to Act

Very few of us had ever bothered to engage in politics, but we knew we needed to act with haste and confidence. The subsequent months until sine die in May were filled with…

…so that they could boldly become a part of the political process in real time. The results of all of this hard work were staggeringly positive — seventeen vaccine-related bills had been filed in the 84th legislative session, yet only one was successfully enacted into law.

That member of the Texas House who provoked the anti-vaxxer fury was Rep. Jason Villalba, R-Dallas.

In January, Laura Silverman at KERA News recounted the story.

State Rep. Jason Villalba has two kids in Dallas public schools. They’re both vaccinated against highly contagious diseases like mumps and measles. A few years ago he learned that not all their classmates were.

“My wife came home from school after registration and she mentioned to me that under Texas law a student could opt out of the protocols for immunization merely by saying they don’t want to take immunizations,” he says. “That was surprising to me.”

The Republican learned that the state Legislature added in this exemption, often called a “conscientious” or “philosophical” exemption, in 2013.

Sure enough it coincided with this paper by Andrew Wakefield that was later discredited that said that immunizations could cause autism,” Villalba says. “Of course that study was widely discredited, his license was removed to practice medicine in the UK and now he lives in Austin.”

Villalba wrote a bill in 2015 that would have eliminated the conscientious objection clause; he would have kept the medical and religious exemptions available.

He knew touching a hot topic like vaccines would be contentious, but he had no idea a grassroots group would try and oust him in the next election.

The Fight

After Villalba proposed his bill to narrow vaccination exemptions a grassroots organization called Texans for Vaccine Choice organized to prevent him from winning re-election.

“It got ugly at times, heated at times,” he says.

Jackie Schlegel, who started Texans for Vaccine Choice, hadn’t been involved in politics before.

“We got heavily involved at the Capitol, in his primary race. We knocked on over 10,000 doors for his challenger,” she says.

Texans for Vaccine Choice is now a political action committee — more than 10,000 people have liked its Facebook page.

“We are not here to tell parents to or to not vaccinate. We are simply here to defend the rights of parents to make those decisions,” Schlegel says.

And although Villalba won re-election last fall, he gave up on his legislation.

In the midst of the controversy, Villalba, who has a little of that Trump-tweeting-into-the-night thing going, issued a couple of provocative tweets.

A Stephen Young in the Dallas Observer helpfully explained at the time:

Stickland believes that parents should be able to forego their kids’ shots, and then send those kids to school, no questions asked. He did briefly jump into the fray on Friday, telling Villalba that “this is about liberty and nothing else is relevant.”

Villalba got into trouble for the other part of his tweet, the thing about “playboy bunnies.”

Anyone steeped in pop culture would infer the reference in Villalba’s tweet was 1994 Playboy Playmate of the Year and former host of MTV’s Singled Out, Jenny McCarthy, an outspoken supporter of the anti-vaccine movement.

The headline on Young’s piece: Dallas State Rep. Villalba Pokes the Anti-Vaxx Bear and Stirs Up the Stupid

Suh:

He poked the bear.

Suh said there was a big difference in who the pro and anti-vaccination forces were bringing to the Capitol to make their case, and the other side was often more effective.

Suh:

They didn’t have scientists and doctors because they don’t have those facts. So it was mostly just parents going up to the Capitol and going to the hearings and testifying and there was a lot of crying that they brought. You can’t fight a mom’s story about her perceived vaccine injury with a pie chart. It doesn’t work.

So Suh went from being a volunteer to creating Immunize Texas to draw more pro-vaccine parents, families and other community members into the debate and bring a more effective voice to the Capitol

In December, Julie Chang in the Statesman laid out the legislative landscape and context for vaccine issues in the 85th Session.

Suh’s top priority is right-to-know legislation, companion bills HB 2249 authored by Representative J.D. Sheffield and SB 1010 by Senator Kel Seliger, which would require annual reporting of immunization figures for each school campus.

Here are the Immunization Partnership’s arguments in favor of right-to-know legislation.

 

And here is Texans for Vaccines Choice’s  argument against it

Suh:

As a parent in Austin, it’s really important for me to know what are the chances that my son will be in a classroom with an unvaccinated child.

As it stands now, she said, parents have to file a public information request, which she said can be costly and time-consuming. Of the opposition, she said:

They know this is a sort of step toward parents getting information that will scare them, once they see that their neighborhood public school is not as healthy as they thought it was, that will lead to more parents becoming aware of the issue, becoming galvanized, and I think their major fear is that eventually, Texas will turn into California and we will eventually have no non-medical exemption available.

The bill Suh is most worried about this session is HB 1029  authored by Rep. Bill Zedler, R-Arlington. to require health providers to get informed consent from patients’ parents and guardians after providing them with extensive information about the vaccines’ ingredient.

Suh:

The opposition is pushing a bill that would require pediatricians to hand out, in my opinion, confusing and  unnecessary information to parents along with what’s already required before a parent can give consent to receive vaccines for their children. They’re talking about adding in this list of ingredients that are used in the manufacture of vaccines – it’s called excipient information. It’s not easily understandable. It’s just a list.

This is where  a lot of misinformation comes from about what’s in a vaccine and a lot of misguided conspiracy  theories. It can only lead to our immunization rates dropping further because you’re planting a question in parents’ minds that wasn’t there before.

Parents are already getting the information they need to make an informed decision.

I look at it as creating a problem where it doesn’t exist, and when vaccination rates are already so low, what is the purpose behind it?

Of her opposite numbers, Suh said:

I have noticed this session they have gone to great length to say they are not anti-vaccine, they are pro-personal parental choice. It’s not really changing who they are.

Most people don’t realize that there are people in the state who aren’t vaccinated. We’ve all taken it for granted.

Because of how effective vaccines are, we are in this situation where people have forgotten how bad those vaccine-preventable disease are and they can sort of brush them under the rug and minimize the damage they can do because they haven’t seen it.

I think for a long time the media treated both sides as having valid points, but now the media is saying flat out, just so everyone is clear, there is no causal connection between vaccines and autism, that has been debunked, that doctor had his license taken away. This is all fake news, alternative facts, whatever you want to call it, whereas before, there was sort of a false equivalence that was given to the problem.

Enter Donald Trump … and Robert F. Kennedy Jr.

From a New York Times editorial last month:

Vaccine opponents, often the subject of ridicule, have found fresh energy in the election of a president who has repeated discredited claims linking childhood immunizations to autism and who has apparently decided to pursue them. With President Trump’s support, this fringe movement could win official recognition, threatening lives and making it urgent that health officials, educators and others respond with a science-based defense of vaccines.

Vaccines have saved lives by protecting children and adults from diseases like measles, polio, smallpox, cervical cancer and whooping cough. And there is no evidence whatsoever that vaccines or a preservative used in flu shots cause autism. Scientists have also shown that parents who refuse to immunize their children are threatening to undo decades of public health gains.

Yet, activists like Robert Kennedy Jr. continue to push pseudoscience about immunizations. The terrifying thing is that they appear to have Mr. Trump’s ear. After a meeting with the president last month, Mr. Kennedy said that the president would name him to head a new committee on vaccine safety; the government already has an advisory group that is meeting this week. And last week, during a news conference with Robert De Niro, Mr. Kennedy offered a $100,000 reward to anyone who could prove that vaccines are safe for children and pregnant women.

Of course, countless studies show that vaccines are safe and effective — more than 350 health groups compiled a list for Mr. Trump — but they haven’t penetrated the reality distortion field created by Mr. Kennedy and his fellow travelers. The biggest danger is that their movement will sow enough doubt that more parents will refuse to let their children be immunized. In some states like Texas the number of children who do not receive vaccines has risen sharply over the last decade and is now in the tens of thousands. Not only does this increase the risk of infections to the youths who don’t get shots, but it also threatens infants who are too young and children who cannot be vaccinated for medical reasons. This phenomenon has already led to outbreaks of measles and mumps.

Suh:

It is part of a general anti-science attitude coming out of (Trump) so, as a former scientist, all of that to me is abhorrent. I just don’t understand it. I don’t understand how a president can  support those kinds of theories.

 From Olga Khazan in the Atlantic in January:

It wouldn’t be Trump’s first flirtation with the anti-vaccine community. “You take this little beautiful baby and you pump—I mean, it looks like just it’s meant for a horse and not for a child,” he said last year about the vaccine schedule. “We had so many instances, people that work for me, just the other day, 2 years old, a beautiful child, went to have the vaccine and came back and a week later got a tremendous fever, got very, very sick, now is autistic.”  In August, Trump met with British researcher Andrew Wakefield, who concocted the vaccine-autism connection in 1998 and whose work has been widely discredited as fraudulent.

“Anti-vaccine beliefs track closely with lack of confidence in the government,” Arthur Allen, the author of Vaccine: The controversial story of medicine’s greatest lifesaver, told Politico’s Pulse Check podcast recently. “We’re in the middle of the perfect situation for [anti-vaccine beliefs] to rise.”

Suh:

I was not aware that RFK Jr. was such a famous anti-vaxxer and then when they (Trump and RFK Jr.)  had their meeting, I think my brain just died a little bit.

You can’t have someone in a position of power even entertaining those kinds of thoughts and it not having an effect.

From an interview in Texas Medical Center News with Peter Hotez, director of the Texas Children’s Hospital Center for Vaccine Development.

Q: With yesterday’s news of Robert F. Kennedy Jr.’s meeting with President-Elect Trump regarding vaccine safety, can you talk about the consequences of the anti-vaccination movement?

The anti-vaccination movement has been around for quite a while, but it’s taken on a new character in the last couple of years. First of all, it’s regrouped in Texas in particular: There’s been the creation of a new political action committee called Texans for Vaccine Choice, which raises money for legislators to run on anti-vaxxer platforms; and Andrew Wakefield, the outspoken director of VAXXED, which is a pseudo-science conspiracy documentary, has moved to Austin, Texas.

What we have now is an effort to promote non-medical exemptions so parents can opt their kids out of getting vaccinated for school entry. And what we’ve seen, and I’ve just published this in the Public Library of Science PLOS Medicine, is that Texas is up to 50,000 kids now that are not getting vaccinated, and the actual number could be much higher. So you have some schools where you are getting 10, 20, 30 percent of the kids who are not being vaccinated, and what that usually means is that we’re going to start seeing measles epidemics. My paper basically predicts measles in the next year or two, which is a highly deadly disease, killing 100,000 people a year.

What seems to have happened is that this neo anti-vaxxer movement in Texas is going national, because one of the most outspoken anti-vaxxers is Bobby Kennedy Jr., who has compared vaccines to the Holocaust, and he is now working with the President-Elect to look at the possibility of creating some type of national commission. The reason I get involved is because I make vaccines; I’m the head of the Sabin Vaccine Institute & Texas Children’s Hospital’s Center for Vaccine Development and the National School of Tropical Medicine here at Baylor College of Medicine, and I also have a daughter with autism.

From Lena Sun in the Washington Post: Trump energizes the anti-vaccine movement in Texas

President Trump’s embrace of discredited theories linking vaccines to autism has energized the anti-vaccine movement. Once fringe, the movement is becoming more popular, raising doubts about basic childhood health care among politically and geographically diverse groups.

Public health experts warn that this growing movement is threatening one of the most successful medical innovations of modern times. Globally, vaccines prevent the deaths of about 2.5 million children every year, but deadly diseases such as measles and whooping cough still circulate in populations where enough people are unvaccinated.

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The battle comes at a time when increasing numbers of Texas parents are choosing not to immunize their children because of “personal beliefs.” Measles was eliminated in the United States more than 15 years ago, but the highly contagious disease has made a return in recent years, including in Texas, in part because of parents refusing to vaccinate their children. A 2013 outbreak in Texas infected 21 people, many of them unvaccinated children.

The modern anti-vaccine movement is based on a fraud. A study published almost 20 years ago purported to show a link between childhood vaccines and autism. The data was later found to be falsified, and the study was retracted.

Scores of large-scale, long-term studies from around the world since then have proved that there is no connection between vaccines and autism. But the suspicion lingers. Its strongest form is a stubborn conspiracy theory that doctors, scientists, federal health agencies, vaccine-makers and the worldwide public health community are hiding the truth and are knowingly harming children.

A leading conspiracy theorist is Andrew Wakefield, author of the 1998 study that needlessly triggered the first fears. (The medical journal BMJ, in a 2011 review of the debacle, described the paper as “fatally flawed both scientifically and ethically.”) Wakefield’s Twitter handle identifies him as a doctor, but his medical license has been revoked. The British native now lives in Austin, where he is active in the state and national anti-vaccine movement.

Trump has met with Wakefield, who attended an inaugural ball and told supporters afterward that he had received “tremendous support” for his efforts and hoped to have more meetings with the president.

Peter Hotez, director of the Texas Children’s Hospital Center for Vaccine Development, predicts that 2017 could be the year the anti-vaccination movement gains ascendancy in the United States. Texas could lead the way, he said, because some public schools are dangerously close to the threshold at which measles outbreaks can be expected. A third of students at some private schools are unvaccinated.

“We’re losing the battle,” Hotez said.

Austin is also home to another notable and influential anti-vaxxer in Alex Jones.

Suh:

I still know, scientifically, we’re on the right side. Statistically, we’re on the right side in terms of parents who vaccinate vs. those who don’t. but they – the other side – certainly took this (President Trump’s support) as a galvanizing call to action, that maybe they have a big chance now to make some big changes.

The other side, for them, it’s a loss of liberty. It’s really easy to get people fired up about that. Nobody wants to lose their liberty. And this is Texas. Texans love their liberty.

And what is my argument?

We need people to speak up to have people doing what they should have been doing all along and have been doing, because a very small minority are starting not doing it, but it may be a larger minority in your area … Anyway kids could get sick.

It’s unfortunate because the more complacent we are, the worse the numbers are going to get and then there’s going to be a big outbreak like there was at Disneyland, and then everybody’s going to be sorry, and to me, that’s tragic. It should never have gotten that far.

NPR:  Vaccination Gaps Helped Fuel Disneyland Measles Spread (March 16, 2015)

We’ve been so successful with these vaccines that sometimes people think that these diseases, they’ll post up about how measles is just like the common cold, and that drives me a little batty, because there’s nothing further from the truth. It’s actually a very dangerous disease, highly contagious, that can lead to long-term effects that can show up years after the initial infections has gone away. But they want to make it sound like some Vitamin C and breast milk, essential oils and putting garlic in your socks is going to make it all better.

I live really close to the Waldorf School. It’s a private school. There’s no way I could ever afford sending my kids there. But they have an exemption rate of over 40 percent. So no, my kids are not going to that school. But where do those parents live? Do they live in my neighborhood? Probably.

Suh said that in on-line discussions, some Waldorf parents talk about the importance of tolerating differences of opinion on the subject.

There’s a little bit of hubris there.

I think if you unpack that a little bit, I think what’s hidden there is a bit of an erroneous belief that they have enough money that they can take care of it, even if their kids get sick. They go to the best doctors. They get the best treatment. Honestly, medicine has its limits, but they are not going to want to hear that.

As part of the immunization lobby day, an Emerson Lung Machine will be on display in the Capitol as a reminder of the treatment methods for polio before the polio vaccine. At 11 in the North Gallery Extension, the advocates will be briefed on the machine.

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