Kai Tsao’s legs dangle from his perch on the exam table. He shifts in his cushioned seat, the thin sheet of paper wrinkling and tearing beneath his palms. The paper betrays his every movement as he waits patiently under the blinding fluorescent light bulbs of the doctor’s office. His shoes lie in a pile at the edge of the room and one sleeve is rolled up to his shoulder. Tsao has just turned 18, so he is the only one in the room. Any minute now, a nurse will knock on the door bearing needles, cotton swabs, and cartoon-themed band-aids.
Tsao is about to get his vaccines, but unlike most American children his age, this is his first time – his parents had refused to vaccinate him as a child.
Tsao’s brother, who was diagnosed with autism when he was 3 years old, was born the same year that the study that linked autism to the MMR vaccine was published. Alarmed by the uncanny coincidence, Tsao’s parents decided not to vaccinate him and his brother.
“That left an impact on my family,” Tsao said.
And so, Tsao grew up in the anti-vax shadow. As a kid, he learned to adopt his parents’ fear of vaccines. “My parents just conditioned me to be really scared of vaccines,” he revealed, “and so I would believe that [it] was killing me.” But as he grew older, his opinions changed. When he turned 18 and became legally able to make his own medical decisions, he made his dad take him to the pediatrician to get all of his shots.
Tsao was caught in the middle of a fiery battle that parents, activists, doctors, and politicians have been waging across the country for the last twenty years.
On one side, there are those known as “anti-vaxxers”: traumatized parents who believe that their children have been injured by vaccines fight alongside some pediatricians to advocate for the health and safety of their own kids.
And on the other side, there is the greater medical community and those who oppose the anti-vaxxers, who want to ensure that all are immunized.
But it has been an uphill battle for the anti-vaxxers. They are in the minority, and the other side has the support of legislators, doctors and pediatricians, and pharmaceutical companies. While others advocate for the safety of the greater population, these anti-vaxxers fight for their own children, and they face backlash, criticism, and hate in doing so.
The anti-vax movement sprang up from the aftermath a 1998 research paper published in The Lancet, a British medical journal. The paper by doctor Andrew Wakefield alluded to links between the MMR vaccine and autism spectrum disorder. However, the paper was formulated based on a case study – detailed reports about specific patients’ medical histories – involving just 12 children.
In 2004, Wakefield’s study was revealed to be fraudulent, and The Lancet officially retracted his paper. But still, 15 years after the study was exposed, anti-vax advocates continue to cite it as support for the movement, often extending the alleged causation of autism to all vaccines.
In Tsao’s home state of California, the number of students entering kindergarten with medical exemptions has tripled, now at .7 percent, since the state repealed personal exemption. Today, 33 states and the District of Columbia allow religious and medical exemptions from vaccines, and only 5 of those states expressly exclude philosophical exemptions.
Here in Massachusetts, however, legislation actually supports vaccinations.
“There’s no law requiring anyone to be vaccinated,” explained Dr. Larry Madoff, the director of the Division of Epidemiology and Immunization at the Massachusetts Department of Public Health. “The only laws pertain to school attendance. So, in Massachusetts, in order to attend schools, you need to be vaccinated… and the exceptions are for a medical contraindication to vaccination, and that’s a constant less-than-half a percentage of the population.”
But Madoff is optimistic regarding the local presence of the anti-vax movement. “We don’t have a big problem. We’re lucky,” he insisted. “Is there some anti-vax sentiment? Yes, certainly, but I would say it’s not large, it’s not big, we don’t have a big problem here. Which isn’t to say that we don’t have any problem with it. There are areas of the state where the vaccine exemption rate is higher than others.”
Massachusetts School Immunization Surveys found that Franklin, Dukes, and Nantucket counties have the highest rates of kindergarten students with exemptions, with Dukes leading at 12 percent. Franklin and Dukes have the highest rates of students with exemptions and no vaccines at all, at 3.2 percent and 3.3 percent respectively.
Suffolk county’s presence was negligible in these statistics, but the survey found that an unparalleled 19.5 percent of Suffolk kindergarten students were not meeting school requirements. This means that almost 20 percent of Boston area kindergarten students are insufficiently immunized or are lacking proper documentation of received immunizations.
But for those on the other side of the debate, this isn’t the “problem” that Dr. Madoff insists it is. For Candice Edwards, one of the biggest problems is the opposition she faces for trying to protect her son.
Edwards, who is the chairman of the local anti-vaccine advocacy organization Health Choice Massachusetts, recounts her experience after her son was diagnosed with autism: “It’s when… you start speaking up and you say that it’s the shots, you end up being pushed into this world where you’re made to basically feel like a piece of [expletive] and that you’re crazy. You lose friends, you get picked on, your child gets excluded from playdates… I’m known as that crazy anti-vaxxer, and I always say I was not an anti-vaxxer. I went into that room thinking that I was absolutely doing the best thing for my child. And that’s the frustrating part for me.”
She remembers the countless death threats she has received online, through Facebook and through email. “Here I am, just trying to talk about what happened to my kid, and this is what I get?” Edwards asks. She insists that she and all those on her side are only trying to do the best for their children, but it is difficult to withstand the relentless trolling.
“I think there’s a huge separation between the anti-vax movement and the pro-vax movement,” Edwards said. “And it’s not really an anti-vax movement – it’s an ex-vaccinating movement.”
Mary Romaniec expressed a similar disdain for the term “anti-vax.” Board member of Health Choice Massachusetts and leader of the Massachusetts chapter of The Autism Community in Action, she agrees that the term is harmful to their community.
“The ‘anti-vaxxer’ label is a pejorative used to silence us,” Romaniec said. “If you don’t adhere to the vaccine schedule, you’re considered to be an anti-vaxxer. You miss one dose and they label you.”
This label perpetuates a stereotype that Romaniec and Edwards are radical and potentially lying extremists. “It did happen to my child,” Romaniec insists, referring to her son’s autism diagnosis following his vaccinations as an infant and in-utero exposure to the flu vaccine. “I’m not making this up. I’m not crazy.”
Romaniec stands at the forefront of local anti-vaccine advocacy, and she uses her role at Health Choice Massachusetts to protect current members, not convert new ones. “We’re not really overt, and that’s by design – because we’re targeted. We all feel that the reason the organization exists is so that the individual is not targeted, and there’s many of us that feel targeted by traditional medicine… Each state has its own version of Health Choice. Every state understands that the legislative encroachment is very real and there are many people who are panicked by it. ”
“Public health policy doesn’t know about my child,” she insisted.
“Our goal with anybody is just to educate. We never tell you what to do,” Romaniec said as she rejected the popular sentiment that anti-vaxxers are focused on spreading their beliefs. “We’re just doing our best to educate without pontificating, we’re really big about that. We don’t want to tell anybody to absolutely not go get vaccinated, that’s just not what we do. We do the opposite: we tell you the best choices are an informed choice. Make your own decisions.”
Ultimately, that’s exactly what Kai Tsao did as he crossed over from one side of the vaccine debate to the other. Though they now represent greatly opposing viewpoints, Tsao’s rejection of the anti-vax principles is a decision that Romaniec, Edwards and Health Choice Massachusetts would likely respect.
Tsao reflected on a moment of realization during high school about his susceptibility to diseases without vaccines. A boy scout, Tsao went on a backpacking trip with his troop when he was 16. During one day on the trip, his group got lost, and they had to cross over a barbed wire fence to rejoin the trail. As he tried to get over, the rusty wire left a cut in Tsao’s thigh, and in a brief moment of panic he thought, “Oh no. I’m going to die now because I don’t have my tetanus shot.”
“I don’t really blame them for it,” Tsao admits. He understands the fear his parents felt, and he recognizes that everything they do is out of love for him and his brother.
After Tsao got his shots – the MMR, Tdap, and a third vaccine he doesn’t quite remember – he met his father in the waiting room. Though it could be considered a monumental moment in his life, the details are a little hazy to Tsao. After he left the pediatrician’s office, he and his father drove back to their home in San Jose, and Tsao sat down to watch soccer. As he lounged on the couch, he remembers his mother walking into the room and asking, “does it hurt?” He replied, “no.”
“I was actually expecting pain,” Tsao said. “It feels like nothing.”
Back to Top