Dana Gerow once believed that vaccines were safe.
Only after the birth of her third child two decades ago did she question the safety of the shots.
Doctors determined that her son, Noah, was deaf and blind and that his brain did not fully develop.
Gerow said she believes his disabilities may have been caused by the measles, mumps and rubella booster vaccine done in her first trimester. Gerow said she had a bad reaction to the shot. Her body ached for a week and she developed a rash and high fever.
“The fact that your child didn’t have a problem doesn’t mean that someone else’s child won’t have a problem,” Gerow said.
Since then, Gerow has not vaccinated her four other children.
In the face of an upstate measles outbreak, New York became the fifth state to ban religious exemptions for vaccinations. The law is being challenged in court by a famed civil rights attorney on behalf of a vaccine-critical group led by Robert F. Kennedy Jr.
News 4 Investigates interviewed four parents who believe state lawmakers ignored their concerns about vaccinations. They are often referred to as “anti-vaxxers” – a term each parent said is deceptive because they are not against parental choice.
Rather, their beliefs come from a distrust with the science, pharmaceutical companies and both the state and federal governments that they believe are intruding on their personal freedom of choice and religion.
“At this point, this law does not affect me, but this sets a scary precedent, and I believe that when you start taking away anyone’s rights, it is a threat to everyone’s rights,” Gerow said.
Doctors interviewed by News 4 said the science is unequivocal: vaccinations are safe and parents who are critical of them are basing their concerns on fear, not science.
“Of all the medical treatments that we use to prevent and treat diseases, vaccines are by far the safest of all of these interventions,” said Dr. Thomas Russo, a University at Buffalo professor who specializes in infectious diseases.
Still, injuries from vaccinations do happen.
In fact, the National Vaccine Injury Compensation Program has paid out $4.1 billion in claims over the past 30 years.
Queenia Asheema’at, a local Muslim who homeschools her children, said some vaccines include ingredients that go against her religious beliefs.
“I’m willing to just leave the country if necessary,” said Asheema’at.
“If every state decided to say we’re taking the religious exemption away, we don’t have a choice. I’m not going to forgo my religious belief because of fear and vaccination mandates.”
‘I’ve lived with this for a really long time’
Deemed as one of the most progressive legislative sessions in state history, New York lawmakers repealed the religious exemption this year in the face of a measles outbreak that has impacted more than 1,000 people nationwide.
The issue continues to be hotly debated and divisive, even though most New York residents were in favor of the new law. The Siena College Research Institute released data that showed 84% of New Yorkers polled favored ending the exception.
On Wednesday, Michael H. Sussman, who once ran for attorney general, filed a lawsuit in Albany to challenge the decision on behalf of 55 New York families. Sussman is also the attorney for Robert F. Kennedy Jr., an environmental advocate and outspoken critic of vaccines and chief counsel for the nonprofit Children’s Health Defense group.
“Religious rights are fundamental. It is unconstitutional for the state to deprive people of such important rights when religious animus has played a key role,” Kennedy said in a statement on Wednesday.
The lawsuit is welcomed by the vaccine-critical parents who spoke with News 4.
For example, Tim Eisenhauer said his children got immunized and developed fevers. His younger son had a more severe reaction.
“I walked into his room one day and he was completely motionless,” Eisenhauer said.
“His eyes would not move. I had to take his pulse to make sure he was alive. I called up the doctor, ‘oh, that’s one of the side effects, give him Motrin to bring down his fever and he’ll be OK.’”
Eisenhauer said that there never were any follow-up appointments and both of his kids ended up being diagnosed with autism, which he believes the vaccines caused.
Russo, the infectious disease doctor, said misinformation that linked the measles, mumps and rubella vaccine to autism came from a 1998 study published in a prestigious international medical journal.
“Unfortunately, this paper has caused irrevocable damage that has generated tremendous fear among parents and some physicians alike in having children vaccinated,” he said.
“As it turns out, data in this study was fabricated, it was false, there was nothing true about the study. The physician was stripped of his license and is no longer practicing medicine, and this is really the first seed of misinformation about the link between autism and vaccines.”
Gerow said her doctor told her that she needed the vaccination for measles, mumps and rubella to increase the antibodies in her blood. She did not think twice about the recommendation even though she was pregnant.
“I didn’t question her recommendation, but after the shot, I had a severe reaction: fever, rash, achiness everywhere for about a week,” Gerow said.
“I called to tell her I had a reaction. She said that these were all perfectly normal reactions to the shot and not to worry about it.”
Gerow said her doctor never reported her adverse reaction and the statute of limitations had passed by the time she had found that her son’s brain had not fully developed She was ineligible to file for injury compensation. Noah, her son, is now 21 years old and cannot see or hear.
The negativity from others about her beliefs no longer deters her from speaking out about the reasons she is critical of vaccines.
“I’ve lived with this for a really long time,” she said about her son’s health.
“If I had a soft side that was easily hurt, it’s been drummed out of me by 21 years of going through doctors and the system trying to get help for my child.”
Dennis Kuo, University at Buffalo’s associate professor of pediatrics, said when something dramatic or catastrophic happens to a child, parents want answers.
“Vaccines, I think, have become a target for some families that are looking for answers,” he said.
Monica Stephens, assistant professor of geographic information science at University at Buffalo, is an expert in how misinformation spreads across social media platforms. Separating fact from fiction can be difficult, she said, especially when the messages appeal to emotion.
“What we’ve discovered is that while these groups who are largely promoting vaccine misinformation online exist, they are not very effective in promoting their public policy positions,” she said.
“But they are very effective at kind of promoting an echo chamber of information or misinformation around vaccines that can change a parent’s decision to vaccinate or not vaccinate.”
She said the same Russian bots identified for interfering with the 2016 election also promoted vaccine misinformation online. A study last October found that 67% of vaccine-related information online is misinformation, she said.
“One of the reasons is to create content pollution and to promote discord within the vaccine debate and online social media,” she said.
The personal anecdotes are not enough to displace science, doctors said.
“I think some people get a lot of information that gets hard to wade through and it becomes difficult to figure out what should be believed and what shouldn’t be believed,” Kuo said.
“It’s on us in the medical community to make sure that we have the trust that is necessary so that folks will get steered to the right information.”
Minister Dahveed Muhammad, a Muslim, said legislators failed to listen to all sides of the debate over repealing the religious exemption.
“My concern is the erosion of civil liberties, erosion of parental rights and the ability to be able to choose,” he said.
Asheema’at, who also supports the religious exemption, said she is in a “scary, vulnerable position” of possibly having to uproot her family.
“Some people say why do you care so much, your kids are homeschooled, you’re not going to be directly affected because they have to be in school,” she said.
“But I do have to be worried because this is one of the liberties that they’ll take away. What’s the next liberty that they’re willing to take away, where does the line get drawn?”
State Senator Patrick Gallivan, R-Elma, voted against removing the religious exemption.
“We go back to our Constitution and the Bill of Rights, we always hear about separation of church and state,” Gallivan said.
“But in this particular case, the one at issue here is the freedom of religion. There’s criticism, people might suggest that there’s no religion that says you don’t have to get a vaccination, to which I would say, who are we to say what your religion is and what you believe in?”
A small percentage of parents statewide used a religious exemption for their children. Even fewer in Western New York used the exemption, according to an analysis of state data by News 4 Investigates, which is posted below this story.
In New York, 0.84 percent of school pupils used the religious exemption for vaccinations; 0.78 percent of the pupils in Western New York used it.
The three school districts in Western New York with the highest percentage of pupils that used the religious exemption are Alfred-Almond Central School District (3.16 percent), Holland Central School (2.83 percent) and Pine Valley Central School District (2.82 percent).
“I understand freedom of religion, we all do, we respect it,” said Gov. Andrew Cuomo during a press conference in June.
“I’ve heard the anti-vaxxers theory, but I believe both are overwhelmed by the public health risk.”