Vaccine hesitancy: A personal and community dilemma
Douglas Diekema, MD
Press Photo | Rex Larsen
The vaccine controversy has resurfaced in national and local news, with an infant in King Country diagnosed with measles last week. As The Seattle Times recently reported, 86 schools have a vaccine exemption rate of at least 10 percent in King and Snohomish county. In Seattle, 12% of students at alternative school Thornton Creek are not fully vaccinated, followed by Green Lake Elementary at 11% and Loyal Heights Elementary at 10%. Here now, a look at the controversy and the risks vs. benefits of vaccinating kids.
Originally published in fall of 2012.
Trust. It's at the heart of the debate over vaccination. Whom do you trust? How do you come to your beliefs, and why? Such questions are nowhere more important than regarding the health and safety of our children. What parent doesn't want to protect their child?
Here in Washington, questions and concerns about vaccinations have led to the highest vaccine exemption rate for kindergartners in the United States. (Children can be exempted from getting one or more required vaccinations when their parents object on religious, personal or philosophical grounds.) At 6.2 percent for the 2009-10 school year, this number is triple the national average. But it pales in comparison to the high rates of vaccine-exempt Seattle kindergartners ranging from 10 to more than 20 percent – in at least 15 elementary schools around the city.
These high exemption rates concern public health officials, who have seen outbreaks of whooping cough (also called pertussis), measles and other contagious diseases in recent years. In Washington last year, 912 whooping cough cases were reported, up from 291 in 2009. Snohomish County is facing a whooping cough outbreak that is threatening the lives of numerous infants; one baby died there last summer, the second infant death from pertussis in Washington state last year. On Vashon Island, where outbreaks occur every year or so, there were 13 confirmed cases of pertussis in the first two weeks of last December; 10 of those children were not up-to-date on their shots.
While there is a small, but vocal, minority of parents who outright refuse all vaccines, much more common are parents who choose to skip or delay their children's vaccines. In a recent Seattle Children's Research Institute survey, 77 percent of Washington pediatricians reported regularly seeing parents who ask to vary the recommended vaccine schedule.
Health officials call these parents "vaccine hesitant" and link the statewide rise in outbreaks of whooping cough, a highly contagious, airborne disease, to the rising number of under-vaccinated kids.
"Higher rates of under-vaccinated children lead to higher rates of illness," says Betsy Hubbard, Immunization Practice Manager at Public Health – Seattle & King County. This is especially dangerous for infants, she says, who are too young to be vaccinated and rely on community or "herd" immunity to stay safe from what, for them, is a life-threatening disease. It's also dangerous for kids over 11 who haven't gotten a pertussis booster; the disease can lead to serious complications and keep children out of school for months.
Michele Roberts, Immunization Health Communications Manager at the State Department of Public Health, says that vaccine-hesitant parents generally fall into two groups. One is primarily made up of college-educated, health-conscious parents who worry about the ingredients in vaccines. A number of these parents may look to non-western medicine for their children's care. The other group is comprised mostly of people who are suspicious of government intervention in their personal lives. Both groups tend to be skeptical about pharmaceutical and/or government funding for vaccine research.
Another group, which may not be vaccine resistant, is nonetheless not vaccinating on schedule. "There may be access barriers, such as cultural or socio-economic issues," says Dr. John Dunn, a pediatrician at Group Health's Northshore Medical Center and the head of its immunization program. "Others may simply be disorganized and aren't getting their kids in for routine well-child visits."
Amber Clark falls into the first category of vaccine-hesitant parents, describing herself as a "delayed vaccinator." The mother of three healthy kids, she is most concerned about neurotoxins in vaccines. "Why not take the slower, more conservative course when there are so many discrepancies in what we are told," she asks, referring to messages about mercury and other toxins she has heard from the FDA and her pediatrician.
As a result, she mostly waited until her children turned 2 to begin their vaccinations; she felt more confident that by then they had developed enough to handle any potential risks posed by vaccines. She also spreads out the shots so that her children receive one shot every six months, which means it takes longer for her children to be fully vaccinated, but eventually they get caught up.
Jane Harris (a pseudonym) also falls into the first category of vaccine-hesitant parents. Concerned about vaccine ingredients, reliability of the array of conflicting studies, and the role of pharmaceutical companies in shaping the list of recommended vaccines, she is selective about which vaccines she chooses for her two daughters. Among the questions she asks: "Is the disease lifethreatening or does it have serious lifelong consequences for my kids and other kids?" and "What's the likelihood of my child contracting that disease?"
Like many Seattle parents, Harris also trusts alternative medicine approaches over traditional models, which tend to look at health less holistically. "I want a doctor to be thoughtful about my children's health and to look at the healthy environment I'm providing for them," she says. "I don't want this knee-jerk, one-size-fits-all approach that I've gotten."
For Heidi Bruch, the benefits of vaccines completely outweigh any risks. Her daughter, Caroline, contracted whooping cough when she was just two weeks old. Too young to get her first DTaP shot, Caroline caught the disease from her mother, who started what seemed like a normal dry cough shortly before Caroline was born.
"Every 20 minutes or so she'd have a coughing episode," says Bruch. "She couldn't breathe; she was choking to death. I'd see her startle into these terrifying silent spasms until she could catch her breath. She'd turn purple and blue. Even in the ICU they couldn't do anything but watch her. Oxygen doesn't get in if you can't breathe."
Caroline finally recovered, but she spent 23 days at Seattle Children's, six of them in the infant ICU. In a horrible coincidence, the newborn daughter of one of Bruch's closest friends also contracted whooping cough, though they never figured out the source. Her friend's daughter spent almost three months in the hospital, suffering organ shutdown, infections and multiple fractures throughout her body. She is the only baby to have survived pertussis after being on life support at Seattle Children's.
"I understand that parents with concerns about vaccines are trying to protect their children," says Bruch. "But when you're facing the risk of a life-threatening disease – even if there's a small chance your child will get it – why would you take that risk?"
Risks Vs. Benefits
"Vaccines, probably more than any other medical product, are under constant scientific scrutiny," says Dr. Doug Diekema, a physician and bioethicist at Seattle Children's Research Institute. "A lot of parents' concerns relate to vaccines in earlier times. Over time they have evolved and changed and become safer and safer."
Health officials worry that parents' fears about vaccines have become way out of proportion to their benefits. While no vaccine is 100 percent risk-free – side effects are associated with some vaccines – scientific studies show that serious and permanent consequences are rare.
"These are very difficult waters to navigate," says Dr. Ed Marcuse, Professor of Pediatrics and Adjunct Professor of Epidemiology at the University of Washington. "That said, science is still our best way of understanding what is true."
He continues: "When the scientific process works as it's supposed to work – studies are critiqued by people with the expertise to ask the difficult questions, to probe, to explore conflicts of interest and weigh the answers – then we can make choices we believe are good."
But, he notes, science isn't the only factor. "Values play a huge role. Whether a risk is acceptable or unacceptable depends on the parents' values."
Given that vaccines have eliminated many diseases that today's parents don't remember or haven't seen first-hand, it can be hard to weigh risks and benefits. Before the chicken pox vaccine, for example, Marcuse says that he saw children in the hospital for severe bacterial infections from chicken pox lesions, often on their faces. "Most of the deaths from chicken pox in the U.S. and most of the hospitalizations from complications of chicken pox occurred among normal, healthy kids with robust immune systems," he says.
Diekema cites Haemophilus influenzae type b (Hib), a bacterium that infects the lining of the brain and can cause meningitis and other diseases, as another disease that most parents don't remember. "Fifteen to 20 years ago, that was the disease pediatricians feared most," he says. "We could diagnose and treat it, but that wasn't enough. We often ended up with a child who suffered devastating and permanent injuries, or a child who died anyway. I haven't seen a case for 15 years now, and our trainees have never seen it."
Diekema also says that vaccines like Hib have changed the way pediatricians approach kids with fevers. "We do fewer tests, blood draws, and spinal taps than we did 15 years ago. Kids have benefited beyond just not getting the disease."
Barriers to Confidence
At the same time, Diekema acknowledges the prevalence of the one-size-fits-all approach among many pediatricians, and he advocates the opposite. "I encourage physicians to diagnose a parent's reluctance just like they diagnose a sick child. If you don't know why a parent is concerned, you don't know how to address that concern." Some parents may want to see particular data, he says. Some want their doctor's opinion about a study they just read on the Web. Some don't want to give their child so many shots at one time.
Dr. Carol Doroshow, a pediatrician and homeopath with expertise in infectious diseases, worked in Africa and saw firsthand the ravaging effects of infectious diseases on children. Faced with questions about immunization from parents, she took it upon herself to become an expert on vaccine ingredients.
In talking to parents, Doroshow considers such factors as whether or not a child is in daycare, whether or not the mother is nursing, and who else comes into contact with the child. "Pertussis, for instance, is a bad disease," she says. "Even when we vaccinate against it, it's probably our least antigenic, or protective, vaccine. That's why we depend on herd immunity – once we stop vaccinating on a very high level, we see outbreaks because it's so infectious."
On the other hand, she says, "I think some of the vaccines are less critical – why would you yell at a worried parent for not getting polio since we haven't had a case of polio in the U.S. since 1978?" But, she says, "If they're planning to go to Africa, I would counsel them differently."
While the majority of Doroshow's patients do end up receiving all of their vaccines, most get there on an alternate schedule.
Diekema agrees that a delayed schedule is better than nothing, but wouldn't take that risk for his own kids or advocate it for others. "We have not eradicated polio around the world," he says. "There is nothing to keep someone with polio from getting on an airplane, coming to the U.S., and starting a polio epidemic. This is one that parents often feel like they can skip because it hasn't been around for decades. But that's a bad disease. It resulted in a lot of death and disability. It's true that the odds are low, but that's not a chance I would take in this global world we live in."
Whom to Trust?
Everyone agrees there's an over-abundance of conflicting information about vaccine safety. How can concerned parents find their way to reliable information they trust?
Diekema recommends the Children's Hospital of Philadelphia's Vaccine Education Center (http://www.chop.edu/service/vaccine-education-center/) , as it's neither an industry nor a government website. He also believes the U.S. Centers for Disease Control has highly reliable information, but he realizes that many parents who distrust government will not turn there.
Another resource is Vax Northwest, a newly formed local partnership of health care providers, nonprofits and public health groups. Their aim is to develop community outreach resources and tools for health care providers to better meet the needs of concerned parents.
"Parents are not going to be expert in every aspect of the science that may pertain to the questions they're posing," says Marcuse. "What parents have to do is look critically at the credibility of their information sources, raise their questions with a provider whose judgment they trust, and engage in a dialogue about the issues that concern them. There are not always going to be clear definitive answers. No matter what you do, you're going to have to balance benefits and risks."
Note: this article was originally published in April 2012.