Sarah Staffiere said the “weight of worry” about her 6-year-old son, Gabe – who has a rare genetic disorder – can sometimes be overwhelming. He could be hospitalized or even die if he’s exposed to an unvaccinated classmate who has a preventable disease.

But Angela Kenney of Hermon is also concerned about her daughter Nevaeh. She says her daughter contracted a disorder that impeded her motor skills shortly after receiving the varicella vaccine in 2007.

Staffiere and Kenney represent the two sides of a highly charged debate over whether parents should have the right to opt their children out of school-required vaccines on philosophic or religious grounds. The debate pits the rights of people who are immune-compromised, and attend or work at a school, against the rights of parents who want to choose to forgo vaccines.

Mainers will decide where they stand on March 3, when they vote on a referendum about whether to keep or overturn a new law that aims to improve Maine’s vaccination rate. The fight has attracted hundreds of volunteers on both sides and close to $1 million in political advertising. “Yes on 1” and “No on 1” signs can be seen in many areas of Maine.

A “yes” vote would jettison the law, which passed the Legislature by one vote in 2019, while a “no” vote would keep it in place.

Staffiere said vaccination policy is “life or death” to her family. Chickenpox, whooping cough, measles and other vaccine-preventable diseases are extra dangerous to those like Gabe with compromised immune systems.

“I scream into the pillow at night, but I have to let him be a kid, live his life. We don’t want him in a bubble,” said Staffiere, of Waterville. “The danger to our son is not hypothetical.  Catching a preventable disease could have devastating consequences for Gabe.”

Kenney said Nevaeh suffered from a severe side effect caused by the varicella vaccine 12 years ago, and ever since then, they have been afraid to give her or her younger sister vaccines. Kenney said it’s her right to opt out.

“I don’t think it’s fair to be forced to inject a potential harmful vaccine into my child in order to have the right to a public education,” Kenney said. “Parents should always have the right to choose.”

The new law, which goes into effect in 2021, would eliminate all nonmedical exemptions to vaccines, removing the choice for parents to opt out of immunization on religious or philosophic grounds. Maine’s nonmedical opt-out rate is one of the highest in the country, and in 2018-19, it was 5.6 percent of children entering kindergarten. Some elementary schools had high rates of unvaccinated children entering kindergarten in 2018-19, including 46.2 percent at Maine Coast Waldorf School in Freeport and 33.3 percent at Kennebunkport Consolidated School.

Maine has the highest rates of pertussis in the nation – 446 cases in 2018 and 383 in 2019, according to the Maine Center for Disease Control and Prevention – and infectious disease experts say Maine’s sky-high pertussis rates are partly due to low vaccination rates.

“All kids deserve to be able to go to school without worrying about an outbreak of preventable diseases,” Staffiere said.

Kenney said their family may move out of state if the law stands.

“I pray I’m not faced with that decision. My thought is we will move,” Kenney said.

If the law stands, Maine, California, New York, Mississippi and West Virginia would be the only states in the nation that forbid nonmedical opt-outs. The law does not force people to get vaccines. But it requires parents to show proof that their children received the vaccines as a requirement to attend school, or have a valid medical reason to opt out. Homeschooled children are exempt from the new law.

IMMUNE-COMPROMISED CHILDREN

Gabe Staffiere has atypical hemolytic uremic syndrome, or aHUS, a genetic disorder that causes abnormal blood clots to form in the kidneys. Medication he takes does a good job of controlling the condition but suppresses his immune system, his mother said.

Sarah Staffiere said a fever can send Gabe to the emergency room, which has happened a few times since he was diagnosed with aHUS three years ago. Anything more serious than that, such as chickenpox, pertussis or meningitis, could have much more dire results. Gabe has had to learn to practice excellent hygiene, and the family is in constant communication with the school nurse and Gabe’s pediatrician.

Gabe, who has light-brown hair and loves basketball, Yahtzee and Lego Batman, said he washes his hands several times a day at school – before and after lunch and snack time, after recess and after classes like art and gym. He avoids drinking fountains.

“I can’t do that. There’s germs,” said Gabe, a kindergartner. Gabe’s 3-year-old sister, Natalie, has the same genetic marker, but so far she shows no signs of the disease and doctors have said it’s a coin flip whether she will also have the same condition, Sarah Staffiere said.

She said after discussing the risks for Gabe with the family pediatrician, the best they can do is practice good hygiene and limit contact with sick or unvaccinated children. The school nurse will call them when there are absences from illness, but so far they have not had to pull Gabe out of school because other children have been sick. Some schools have had outbreaks of preventable diseases, such as chickenpox and whooping cough. For instance, Freeport High School reported 10 cases of whooping cough, or pertussis, in December.

Gabe is protected by herd immunity, which means the higher percentage of people who get their vaccines, the less the diseases circulate in the community, protecting those with weakened immune systems or too young to have gotten their vaccines. For some diseases, such as measles, herd immunity starts to weaken when less than 95 percent of the population is vaccinated.

Staffiere said that, while homeschooling is always an option, Gabe benefits from the social aspects of school and loves attending. Besides, she said, they shouldn’t have to remove him from school because other people refuse to vaccinate their children.

“We are only asking for something that should already have been granted to us, that we deserve. That he can attend school safely,” Staffiere said.

The George J. Mitchell School, where Gabe is enrolled, had a 3.9 percent kindergarten exemption rate in 2018-19. That’s better than the statewide average of 5.6 percent. Staffiere said that’s helpful information, but it doesn’t tell her what the exemption rate is in the current school year. The school-by-school list is published by the Maine CDC every spring for the current school year.

“I don’t know what it is this year for Gabe’s grade. It could be 2 percent, or it could be 10 percent,” she said. If nonmedical opt-outs are eliminated, compliance should be near 100 percent every year, which will not eliminate all risk but would help keep Gabe safe.

Tony Staffiere, Sarah’s husband, said the law would not eliminate their worries but would “add an extra layer of protection” for Gabe and other children with suppressed immune systems. Children who have leukemia or have undergone transplants are immune-compromised.

“This law is to protect our children in Maine. Why would we not want to keep it?” Tony Staffiere said.

VACCINE INJURY

Angela Kenney said her daughter Nevaeh, now 13, had a severe reaction to the varicella, or chickenpox, vaccine when she was 18 months old. Nevaeh had been a normal, healthy baby, full of energy and walking.

Shortly after receiving the vaccine, she stopped walking, Kenney said, and couldn’t walk for another 11 months.

“She couldn’t walk, she couldn’t crawl and she couldn’t sit up. It was a huge struggle,” Kenney said.

Nevaeh was diagnosed with acute cerebellar ataxia, which is when the cerebellum in the brain becomes inflamed, and can cause problems with muscle coordination. It took about two years of physical therapy and other types of therapy before Nevaeh recovered, but she has since fully recovered.

Vaccine injuries are exceptionally rare, but they are possible, and ataxia is a possible side effect of the varicella vaccine, according to some scholarly medical journals.

The family received a payout from the National Vaccine Injury Compensation Program, which is a federal program set up to settle claims with families and avoids lawsuits against vaccine manufacturers. Families can take their claims to the program, and if approved will receive compensation. Kenney said she did not want to disclose how much money the family received.

While it is possible to get ataxia from the varicella vaccine, ataxia is more commonly a complication of being infected with chickenpox, according to researchers in the Netherlands. In one 2009 study of children under age 5 done for the Netherlands public health agency, a chickenpox infection caused ataxia for five of every 100,000 children who were infected, compared to 0.15 ataxia cases for every 100,000 doses of the varicella vaccine.

Johns Hopkins Bloomberg School of Public Health said it is “biologically possible” but “available data are insufficient to determine a causal association” between the varicella vaccine and ataxia, although ataxia is a complication of being infected with chickenpox.

Still, Kenney said their family can prove a vaccine caused harm to their daughter, yet if the law stands they won’t be able to obtain medical exemptions for Nevaeh or her younger daughter, Phoenix.

After Nevaeh contracted ataxia, the family did not get any more vaccines for Nevaeh or Phoenix and has used the philosophic exemption to opt out of school-required vaccines.

“After all we went through, I was told by our doctor that she still wouldn’t be able to get medical exemptions,” Kenney said. “To ask me after all we went through to inject another vaccine into her without our approval is absolutely terrifying.”

ETHICAL DEBATE

The debate focuses on individual rights versus the community benefits of vaccination.

Research has proven that vaccines are overwhelmingly safe and effective, and have prevented millions of cases of diseases like measles, chickenpox, pertussis and polio. Before the measles vaccine was introduced in the 1960s, 3 million to 4 million people were infected annually in the United States, causing about 400 to 500 deaths and more than 40,000 hospitalizations.

After the measles vaccine became widely available, measles cases in the U.S. plummeted to near zero by the 1990s. In recent years in areas where vaccine use declined, measles has made a comeback, including a 2014-15 outbreak in California and 2018-19 in New York.

But Dr. Zach Mazone, a Bath physician, said patients have rights, and the new vaccine law infringes on those rights.

“This is not a vaccine issue. I want everyone to have access to vaccines,” Mazone said. “This is about the rights of patients and their rights to their moral and religious convictions. If the law stands, then we are saying that religious and personal freedoms don’t really exist.”

Mazone said the new law “goes against the medical/legal concept of informed consent with our patients. We have to explain the risks and benefits to patients and get their consent – ‘Yes I want to do that, or no I do not.’”

But Arthur Caplan, a bioethics professor at New York University and a national expert on ethics in medicine, said parental rights are limited.

“Parental choice is not unlimited,” Caplan said. “A parent can’t say, for instance, that they choose not to use a car seat for their infant.”

Other examples are child labor laws and laws that prohibit selling tobacco products to minors, Caplan said.

“Morally speaking, children have the right to be protected from dangerous illnesses,” he said.

Caplan said the religious and philosophical exemptions to vaccines date back about 100 years, as state governments carved out exceptions for individual objectors to vaccines.

But in the 20th century, as vaccines became more readily available and it was obvious how valuable they were in preventing diseases, few used the exemptions. Caplan said when the threat from the diseases becomes apparent, and people experience how terrible the diseases can be, the laws are often tightened. Both California and New York removed all nonmedical exemptions after measles outbreaks. New York City’s measles outbreak sickened more than 600 in 2018-19.

“As you get outbreaks and more people are put at risk, getting rid of the nonmedical exemptions gains more votes in state legislatures,” Caplan said.

But Mazone said doctors whose patients don’t want their children vaccinated could be putting their license in jeopardy if they grant too many medical exemptions.

“It’s telling doctors that if you don’t toe the line, you may not be able to practice medicine,” Mazone said of the law. The Maine Medical Association, which represents doctors before the Legislature, supports the new law, citing benefits to public health.

For Todd Abbott, a Yarmouth elementary school teacher, the debate is not theoretical. He has multiple sclerosis and a compromised immune system. He washes his hands frequently, and preventable disease is “always in the back of my mind.” Abbott said he supports the new law.

“I view vaccines as a measure of civic duty,” Abbott said. “I can’t drive 130 miles per hour on the highway to work because it’s dangerous to others. Living in society is a series of trade-offs.”

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