BOSTON — Joy Niemiera took her infant son and small daughter to be vaccinated because she wanted to be a good parent. She now deeply regrets that decision.
Both children experienced severe complications, conditions that doctors later told her are occasionally brought on by inoculations. Her son, Gregory, now a teenager, must be fed, cleaned, and dressed in a special wheelchair. Her daughter has difficulty running.
"Why was I not informed about the serious effects of vaccines?" asks Mrs. Niemiera, who lives with her husband and four children in West Townsend, Mass.
Niemiera is part of a small but growing band of parents and doctors who are pushing for greater parental control over children's health care. Armed with studies, statistics, and personal stories, they are challenging the medical establishment and its assertion that vaccines are crucial to public health.
Their latest fight - a Massachusetts bill to give parents the right to decline vaccinations for their children - illustrates what is at stake for both sides. Officials say it is a state's responsibility to prevent epidemics and protect the health of the population, while advocates of the bill invoke the individual's right to make health-care choices.
For public-health officials, the implications of parental revolt are troubling. Mandatory vaccination is the law of the land in every state except Wyoming, and vaccines, they say, have dramatically reduced levels of disease over the past half century.
Some exemptions to mandatory vaccination already exist. Forty-eight states allow exemptions for parents with religious objections, including Christian Scientists. Seventeen others give exemptions to parents who have philosophical objections to vaccination, the provision sought by "vaccine choice" advocates here.
The Massachusetts bill, if passed, would have little effect on public health, say experts, because most parents heed the advice of their doctors. Even in states with vaccine choice, 80 percent of all children are vaccinated by age 2, and 96 percent are vaccinated by age 5. But many lawmakers and health officials would like those numbers to be even higher. Any effort to roll back mandatory vaccination, they say, would put society at much greater risk.
"There are adverse effects with vaccines, but the benefits far outweigh the risks," says David Mulligan, director of the Massachusetts Department of Public Health. Making vaccination voluntary, as Britain, Sweden, and Japan did for a time in the 1970s, may bring on diseases that had been under control before, he says.
In Massachusetts and most other states, children who have not been vaccinated can be excluded from school activities or after-school sports.
Under the federal National Childhood Vaccine Injury Act of 1986, a doctor must give a patient a description of a medicine or vaccine and its possible side effects and get a signature showing the patient has read it. "That's federal law," says Edward Bailey, director of general pediatrics at the Baystate Medical Center in Springfield, Mass. "I'm not sure we need anything additional."
But it may be a measure of the growing stature of parents groups that many physicians are beginning to respond to patients' qualms. "We should do a much better job as pediatricians in explaining what medicines they are taking and what are the side effects," says Ram Yogez, a board member of the American Academy of Pediatricians in Chicago. Every medicine has side effects, he says, but they tend to do more good for society than harm. Even so, since the federal Vaccine Injury Compensation Program was set up in 1986, it has paid some $650 million in damages to affected families.
For parents' groups, legislative victories are few, in part because of the fractious nature of the movement and its agendas. Vaccine choice backers range from Christian conservatives and New Age leftists to traditional doctors, herbalists, and conspiracy theorists.
Despite predictions that the bill will be defeated in the next two weeks, Debbie Bermudes of the Massachusetts Citizens for Vaccine Choice, says her group will stay the course. "I have to give consent for my child to get her picture taken or to go on a field trip, but I don't have to give written consent for my child to be vaccinated," Mrs. Bermudes says. "There's something inherently wrong here."