Wednesday, July 15, 2015

IS THERE A KINDER, GENTLER WAY TO GET ANTI-VAXXERS TO SEE THE LIGHT?

By Jill Stewart | LA Weekly | http://bit.ly/1K809e1

Is There a Kinder, Gentler Way to Get Anti-Vaxxers to See the Light?

Illustration by Patrick Faricy

UPDATE: California officials have cleared an anti-SB 277 coalition, led by former GOP Assemblyman Tim Donnelly, to gather signatures for a ballot measure asking voters to overturn mandatory vaccinations for children. Experts predict the referendum will make the Nov. 1, 2016 ballot, meaning SB 277 can no longer take effect next June. The law must await the results of California's 2016 election. This challenge faces a tough battle, with 82 percent of the public favoring mandatory vaccines.

Wednesday, July 15, 2015   ::  Some of the first people to notice the anti-vaccination phenomenon in California were Santa Monica physicians like pediatrician Alice Kuo, whose UCLA clinic on 16th Street sits midway between the upscale industrial art galleries at Bergamot Station and pricey Montana Avenue, a shopping district favored by one of the most affluent creative communities on the West Coast.

Years ago, mothers began resisting vaccines, asking Kuo to delay, or let them skip altogether, shots for infants and small children that prevent polio, measles, whooping cough, tetanus, rubella, diphtheria and other sometimes deadly or devastating diseases eradicated or nearly eradicated in the United States years ago.

Kuo, a classic overachiever, is also chief of a special section at UCLA, where she prepares medical residents dually as pediatricians and internists, and trains them to advocate in Sacramento for children's health issues and against health disparities among the underprivileged.

At her pediatric clinic on the Westside, Kuo watched warily as an unexpected new imbalance began to emerge: "Affluent parents opting out," Kuo explains, "by choosing a substandard level of care for their own children — and in turn, a substandard health situation for people who get exposed to their children. They didn't want vaccines."

Kuo convinced many of her vaccine-fearing parents, mostly mothers, to agree to a pact: They could come to her Santa Monica clinic only if they agreed to fully vaccinate their children before kindergarten.

The parental pacts placed Kuo in a position to witness, up close, a compelling drama that was quietly unfolding in pockets across America: the struggles of the "anti-vaxxers" — actually comprising "vaccination delayers" and "hesitaters," too — whose attitudes baffle many scientists and government officials and anger society. They have weakened America's "herd immunity," which requires that 95 percent of people are vaccinated to protect everyone against once-common scourges.

"For too long, this country has had a system based on sick care, not preventive care," Kuo says. "Even today, a lot of people who are not anti-vaxxers have a hard time just with the flu vaccine. Vaccines are 'treatment before you feel sick' — it bothers people. But if a kid gets a deadly disease like whooping cough, whose fault is that? It's the parent's fault" for not vaccinating.

Measles, which killed 500 people and hospitalized 48,000 annually before development of the vaccine in 1963, was eradicated in the United States in 2002. Now outbreaks, set off by foreign travelers but often spread by non-vaccinated Americans, are back. The biggest outbreak of the past decade hit Disneyland in December and spread to about 150 people in the United States and Mexico, plus dozens in Canada, fueling a political upheaval in Sacramento that led to Gov. Jerry Brown's signing on June 30 of Senate Bill 277.

Under SB 277, parents must vaccinate their children before the kids start school or get a medical exemption from a licensed physician. Parents who refuse must home-school or set up "public independent studies" programs. The bill was co-authored by Sen. Richard Pan of Sacramento, a noted pediatrician, and Sen. Ben Allen of Santa Monica, whose own father was hit hard by polio before a vaccine finally wiped it out in the United States in 1979. Allen, a bilingual attorney with degrees from Harvard, Cambridge and Berkeley, tells L.A. Weekly, "If my father loses his balance, he cannot raise his own arms to break his fall" due to polio.

Now rising stars in the California Democratic Party, Allen and Pan handled with grace the most wrenching citizen furor since big crowds pressed into the Capitol in 2003 demanding the recall of Gov. Gray Davis. And Allen knows something of human strife, having served as a judicial clerk with the United Nations' International Criminal Tribunal for Rwanda.

During the throes of the vaccine controversy, Allen, taking a break over matzo ball soup at Canter's, talked about how "you'll see swastikas on the Internet, representing what Dr. Pan and I are trying to do."

But what Allen and Pan hoped for may not come to be. While medical professionals like Kuo are major supporters of SB 277, a doctor's own method of persuasion draws from human reasoning and personal trust. The state, by politicizing something as personal as medications and barring children from classrooms, has created unknown and potentially large risks. The government's intentions could backfire.

Allen's California Senate District 26, drawn as an outline upon a map of Greater Los Angeles, eerily encircles the concentration of schools where large numbers of parents skipped one, or all, of the shots needed for their children's vaccines (see accompanying map).

1. Westside Waldorf, 2. PS1 Pluralistic, 3. New Roads, 4. Goethe International, 5. Echo Center, 6. Play Mountain Pl., 7. Kabbalah Children’s Acad., 8. Westland, 9. Kids’ World. 10. Calvary Christian, 
11. Roosevelt Elem., 12. Santa Monica Alt., 13. Early Start, 14. Will Rogers Elem., 15. Wildwood, 16. New World Montessori, 17. St. Augustine, 18. Kenter Cyn Elem., 19. Valley Beth Shalom, 
20. Hollywood Schoolhouse, 21. Lycee Intl., 22. Franklin Elem., 23. Grant Elem., 24. Coeur D’Alene Ave. Elem., 25. Mar Vista Elem., 26. Hawthorne Elem., 27. Hancock Park Elem., 28. Larchmont Charter, 
29. Carpenter Comm. Charter, 30. Riverside Dr. Charter Elem.

1. Westside Waldorf, 2. PS1 Pluralistic, 3. New Roads, 4. Goethe International, 5. Echo Center, 6. Play Mountain Pl., 7. Kabbalah Children’s Acad., 8. Westland, 9. Kids’ World. 10. Calvary Christian, 11. Roosevelt Elem., 12. Santa Monica Alt., 13. Early Start, 14. Will Rogers Elem., 15. Wildwood, 16. New World Montessori, 17. St. Augustine, 18. Kenter Cyn Elem., 19. Valley Beth Shalom, 20. Hollywood Schoolhouse, 21. Lycee Intl., 22. Franklin Elem., 23. Grant Elem., 24. Coeur D’Alene Ave. Elem., 25. Mar Vista Elem., 26. Hawthorne Elem., 27. Hancock Park Elem., 28. Larchmont Charter, 29. Carpenter Comm. Charter, 30. Riverside Dr. Charter Elem.  |  Map by David A. Deis

"Some private schools, a Waldorf school, some charter schools — some of the better schools, to be honest — have very low vaccination rates," Allen says. "I find a lot of their [education] philosophies very attractive, and I come to this with a certain amount of sympathy. But while I absolutely respect them, government has a role to play. Measles are killing many people on planet Earth today!"

Pan and Allen's victory rests on its implementation. But some researchers who study the anti-vaxxers think the Legislature and Jerry Brown may have poured gasoline on a fire, especially when a much more concerted community approach, probably using nurse and pediatrician outreach to resistant parents, could have improved herd immunity in low-vaccination pockets.

"We may pay a significant cost, long-term, in public health, if this victory provokes a backlash," says Brendan Nyhan, a professor of government at Dartmouth College, who discovered that top-down government vaccine-education messages backfire, inspiring wavering parents to say they're even less likely to vaccinate.

"Sometimes there are events that catalyze people in politics, and the Tea Party is not a terrible example," Nyhan says. "We need all of these people — to protect everybody else."

In her practice, Kuo, the mother of two boys, has unearthed a hodgepodge of parental views: a cold and utterly false fear, stoked by disgraced British scientist Andrew Wakefield, that vaccines cause autism and other terrible diseases; a misbegotten belief that prolonged breastfeeding can sufficiently immunize infants; a personal phobia toward needles, which parents project onto their kids; a trend in which children are seen as exceedingly precious — not just plain old precious; an extreme distrust of the pharmaceutical industry; and a conviction that the National Vaccine Injury Compensation Program is proof of major vaccine injuries. (Despite its name, the body created by Congress requires no direct proof of injury, and serious injuries remain rare. It compensates families based on a variety of criteria.)

"I had one family in Santa Monica that was vaccine-hesitant," Kuo says, "and they dragged their feet with me for a very long time. Then it turned out they wanted to take an African safari, coming up in a few months. All of a sudden, they had to get caught up on the vaccine schedule — they had to get all of their shots for their child. And I was like, 'OK, where does this anti-vaccination belief system really come from?' You would not believe how common that sort of thing is in Santa Monica. Parents who won't vaccinate — until that very strong desire gets in the way of another."

Kuo believes the parents who formed Facebook pages with names such as "South Bay and Westside NO on SB 277" and stood in blocks-long lines to speak in Sacramento will not set up home schools, or move, or dream up some omnibus parental-rights initiative for the 2016 ballot. "It'll turn out to be a lot more work than they expect," she says. "Ninety-five percent will vaccinate."

But since Disneyland, their ranks have only ballooned, with compatriots as unlikely as anti-physician chiropractors, the Nation of Islam, conservative Republicans, United Teachers Los Angeles organizers, long-term breastfeeders, mothers of children with autism and other disorders, and get-government-off-our-backs libertarians.

"There's an emerging possible rump coalition that's totally new, people who all distrust government yet who've hardly ever intersected," says a GOP political consultant involved in the 2003 recall of Davis. "But now they've intersected on vaccinations, even Nation of Islam and Republicans. The political class in California pushed their way into people's personal rights. The [political class] could have a lot to lose."

But among all the groups opposing and questioning vaccines, the driving force, from the moment Wakefield published his trumped-up autism study in Lancet 17 years ago, has been mothers. And that makes Kuo's question key: Where does their belief system come from?

On April 28, a gasp went up in the anteroom of Sen. Pan's Sacramento office as pro-vaccination moms, waiting to meet with him, got word that the Life Chiropractic College West in Hayward had invited Wakefield to speak — and to slam the scientific community for ruining him. A newspaper was reporting that the chiropractic school had embraced Wakefield's exhortation that the students act as "pitchforks and torches" to halt SB 277.

One pro-vaccine mother in Pan's anteroom stepped behind an old polio victim sitting in a wheelchair, whispering to the other moms, "He shouldn't hear this!"

Since Jan. 7, when the Disneyland outbreak hit the news, the anti-vaxxers and vaccination-wary have been ridiculed, demeaned and called crazy. In response, they have grown far more organized, raised substantial funds and unleashed a torrent of off-base accusations and headline-grabbing actions.

On June 9, at an Assembly Health Committee hearing on SB 277, one mother shouted at San Diego Assemblywoman Lorena Gonzalez, co-author of the bill with Pan and Allen, "My child is more important than yours!" On July 3, several hundred protesters proudly marched through downtown Santa Monica with Wakefield, vowing to overturn SB 277 in court.

Jennifer Reich, a sociologist and health-policy researcher at the University of Colorado, has found that many anti-vaccination parents trust their own judgment over that of scientific institutions, which they feel apply vaccines too uniformly to children, and in some cases strongly oppose government reach into their personal lives.

In Reich's research, she says, "No parent mentioned a fear of their child infecting others, such as people in poor countries where they may travel. Their child was the entire center of their calculus, never 'What is my child's threat to others?'"

Vaccine opponents, who are mostly white, educated and middle-class or wealthier, have been plugging a racially explosive conspiracy theory that the Centers for Disease Control hid data showing that African-American boys in Georgia suffered a 340 percent "increased risk of autism" after getting a measles vaccination. A paper promoting this data, written by an anti-vaccine researcher, has since been retracted, and Snopes.com determined that the allegation was bogus, tracing its roots to data about already-autistic kids who later were vaccinated. But the tale attracted the Nation of Islam, whose leader in late June likened SB 277 to the racist Tuskegee syphilis experiment, in which inmates with the disease went untreated as they horribly deteriorated.

Top African-American organizations, including the California State Conference of the NAACP, National Coalition of 100 Black Women and Charles R. Drew Medical Society, immediately struck back at the Nation for sowing vaccine fear among black parents.

Nyhan calls the anti-vaxxers' resurrection of Wakefield, and their conspiracy theory about African-American boys in Georgia, "totally normal" attempts to defend closely held views. Educated, knowledgeable, creative people, he says, "are good at coming up with stories to defend against information they do not want to hear."

Defiance toward government is another key pillar, and the people who avoid or refuse vaccines are happy to explain why.

"It is just so very, very ironic and sad to me that the Democrats, the people who are for freedom, are doing this — somehow that tide has turned," says Hedy Hutcheson, whose questioning of vaccines began when she was a pregnant Westsider many years ago.

Anti-vaccination mom Hedy Hutcheson with sons Emerson, left, and Rhett Hutcheson and daughter Priscilla Duggan

Anti-vaccination mom Hedy Hutcheson with sons Emerson, left, and Rhett Hutcheson and daughter Priscilla Duggan
Photo by Danny Liao

Now a wealthy real estate investor in Hancock Park at the far eastern end of Allen's District 26, Hutcheson, a former Joffrey ballerina and Las Vegas dancer, says, "It wasn't too many decades ago that the medical profession was telling us smoking was safe, remember that?"

With a master's degree in homeopathic medicine, she trusts traditional medicine only so far; her three children, two sons, 10 and 17, and a daughter, 14, have never been vaccinated. Hutcheson follows a theory that vaccines can "hyper-alert" the immune system, causing autoimmune diseases. Her non-vaccinated daughter developed severe eczema as a toddler — "a red crust like a million mosquito bites" — which only strengthened Hutcheson's avoidance of vaccines.

"I never feel all the time that I made the best decision not to vaccinate," she explains. "I am never fully satisfied about it, but I look to my family history of autoimmune disorders.

"I have done my novice research."

Her mother, Millie Perkins, a 1950s international cover girl who starred in The Diary of Anne Frank, told her after Disneyland, "'What's the big deal? We all had measles — it was a childhood disease like a real bad flu.'"

“The point is, as a mother, why do I not have the right to take the risks with my own family?” —Hedy Hutcheson on her decision not to get her three children vaccinated

Hutcheson admits there is selfishness in her approach, saying, "The kids who do face harm are the ones who cannot be vaccinated because they have compromised immune systems — I do understand that. But once you do it to your child, it's irreversible, and it could be 50 years before you know what you have done, if ever."

Rather than bend to the withering criticism in newspaper editorials, public polls and late-night talk show jokes, Hutcheson, who believes in vaccines for most people, is seemingly more committed than ever.

Earlier this year, she sent her non-vaccinated 14-year-old daughter to Cambodia after consulting with their doctor and checking the CDC website. (For travel to Cambodia, the CDC recommends all vaccines plus the Hepatitis A shot.) Before that, her older son spent time in China, also without vaccines.

"She had a truly wonderful time and came back healthy," she says of her daughter. "The point is, as a mother, why do I not have the right to take the risks with my own family?"

Actor Tisha Banker might be considered an expert at navigating these shoals. During her first pregnancy she was doing her very best to become a vaccine doubter, when she suddenly pulled up short.

Banker now is one of 12 parents who act as the public faces of Vaccinate California, a group of volunteers that helped Allen and Pan promote SB 277. She's kept her sense of humor during an onslaught of sometimes creepy personal attacks, and notes that her Facebook "other email" folder, once peppered with notes from fans who enjoyed her in Criminal Minds or Pretty the Series, now sometimes gets "pictures of dead babies."

Banker was pregnant six years ago when a colleague on the Westside handed her reams of frightening vaccine info from websites like Natural News. She got scared and interviewed nine pediatricians, seeking one who would let her customize her baby's vaccinations. Eight doctors refused.

The ninth one "looked me at me and said, 'I can take you on a slowed-down vaccine schedule, as you are proposing, but not on an emotional basis because it makes you feel better. Bring me your scientific evidence.'"

Banker had an "aha" moment. "I'm a mom banging out a better vaccine schedule than thousands of doctors around the nation have agreed upon? What was I doing? I was caught up in my fear."

Pro-vaccination mom Tisha Banker, left, with husband Mark Banker, right, and kids Athena and Atticus

Pro-vaccination mom Tisha Banker, left, with husband Mark Banker, right, and kids Athena and Atticus
Photo by Danny Liao

Then last December, her extended family of in-laws was at Disneyland during the measles outbreak. On Jan. 7, when news of the outbreak broke, they went into full panic mode, trying to determine if everyone was OK. In February, she helped found Vaccinate California, and by April, she was representing the nonprofit at a sidewalk rally outside the LAUSD Board of Education, which was voting on a resolution backing SB 277.

Banker figured she'd meet like-minded people. Instead she was alone in a sea of 300 anti-vaxxers and other protesters organized in part by United Teachers Los Angeles activists.

"I'm wearing my T-shirt reading 'I Heart Vaccines.' Not the best call I ever made," she says. "I'm videotaping, and the crowd notices me and my shirt, and there's this surge toward me. And I look at this security guard, and he tells me, 'Just wait there.' So I tell him, 'Could you, like, look at my face so you can ID me later?' He cracks up."

The human surge pushed her into Beaudry Street. "One woman gets right up to me and says, 'Aren't you afraid of us? And I said, 'My name is Tisha, I'm a mom and you're a mom. You're just trying to do what's right for your kids, right? So am I.'''

Mothers began telling her their stories. Some claimed their children were "vaccine-injured" and left with autism or autoimmune disorders not caused by vaccines. "They were just happy to see someone they could put all their anger on," Banker says. "What saved me from a more tense situation was saying, over and over again, 'I respect you, but I don't want to discuss your medical theories with you. Tell me about your kid.'"

“They fear that if they allow their kids to get the shot, something bad will happen. I know because that’s what I feared — before I woke up.” —Tisha Banker, who did her best during her first pregnancy to become a vaccine doubter

Banker, like Dartmouth's Nyhan, believes existing institutions have failed to cope with how deeply these mothers' vaccine views are intertwined with their self-identity as a protective parent. "They fear that if they allow their kids to get the shot, something bad will happen, and the onus will be on them," Banker says. "They cannot get past that fear. I know because that's what I feared — before I woke up."

A growing body of research says the anti-vaxxers and vaccine resisters aren't unusual. They are among millions of people who take a stand closely tied to their self-identity, which is later proved wrong or harmful, and then can't let go. Until medical and governmental institutions in the United States figure this out, it may not matter what a California state law requiring vaccinations has to say.

Carol Tavris, a social psychologist and expert on cognitive dissonance, talks about the "majority of prosecutors in this country who have put away criminals later proved innocent, then fight for years to keep them behind bars," and the "large numbers of doctors who defended radical mastectomies after it was time to switch to lumpectomies."

"Thanks to the mind's built-in mental biases, you start looking for all the information that minimizes anything that suggests you might have been wrong," Tavris adds. "It's such an efficient mechanism, it gets harder and harder to go back. This mechanism entraps all of us — especially if it goes to the heart of how we define ourselves as competent and smart people. And the anti-vaccination movement has a belief uber alles. Because what is more vulnerable than my view of myself as a good mother or father?"

Nyhan, at Dartmouth, says California's leaders need to see their political win on SB 277 as potential trouble — the precursor to a possible political split that could threaten herd immunity.

Because these parents represent "a classic case of 'motivated reasoning' — the tendency to interpret information based on pre-existing attitudes," he says — the anti-vaxxers and more moderate waverers could dig in deeply, just as they did over Wakefield.

That, together with the mostly partisan legislative vote on SB 277, reflecting Republican anger over intrusion of government into personal decision-making, Nyhan says, "has me very concerned about what will happen if other states take a cue from California. We cannot have a partisan war on vaccines."

Andrea Snyder, a commercial actor in Santa Monica and mother of a 6-year-old, is comfortable within the anti-SB 277 crowd, including its more extreme elements. She sees the battle as one over constitutional and parental rights. "They would rather have us go home to our little lives and pay our bills and watch primetime and carry on as if everything will be fine in our little world," she says. "Maybe it will. Or you can get involved if you want things done differently. Somewhere along the way, we have given up our power."

Snyder and thousands of other parents this year perfected what they call "finding my people" through social media — educated urban professionals and creatives who think as they do. The sense of community reminds her of the months after the 1994 Northridge earthquake, when her neighbors at Park La Brea finally got acquainted.

"This is what it feels like when we cooperate together, and I really don't think we'll disappear back into our regular lives."

Snyder has meticulously read vaccine ingredients inserts and vaccine-wary websites, and has chosen to never vaccinate her daughter. Yet as pediatrician Kuo notes, "We in medicine are having national meetings about this! These parents are not making rational decisions based on anything we can hang our hats on."

A small group of school nurses in Santa Monica may have one answer, if SB 277 creates a new set of problems for herd immunity.

Of course, the bill might work. The anti-vaxxers might shrink back to pre-Disneyland numbers. The Republicans might not act on their anger over legislative intrusion. The anti-vaxxer fundraising set off by TV images of mothers misguidedly claiming to have "vaccine-injured children" might cool. And Sen. Allen, one of the most mindful leaders to arrive in the shallow waters of Sacramento in years, may come up with a second act that promotes bridge-building, which his and Pan's vaccine bill, realistically, could not do.

  • “We cannot have a partisan war on vaccines.” —Brendan Nyhan, a professor of government at Dartmouth College who discovered that top-down government vaccine education messages backfire

Nyhan and others suggest that a bridge be built to parents by those closest to their kids' health care.

Rochelle Fanali, president of the Santa Monica-Malibu PTA Council, offers up a real-life example. In Santa Monica and Malibu, nine school nurses this winter were encouraged by the council to telephone every name on the school district's personal-belief exemption list after the Disneyland outbreak, to ask them to reconsider vaccines.

"Of course, these calls were a very nervous-making idea," Fanali says. "You aren't going to change the minds of those who will not believe science. But the calls by our school nurses turned into a very positive experience."

Santa Monica-Malibu Unified School District nurse coordinator Lora Morn estimates her team called nearly 500 parents. They ran into loads of resistance, but many vaccine-hesitant parents listened. "We found that herd immunity was a new concept for most parents who had waivers," Morn says. "Many who were customizing their vaccine schedules agreed to the measles vaccine."

This spring, the PTA gave the Santa Monica school nurses an honorary award for, Fanali says, "work above and beyond the call of duty."

Kuo admires their efforts. "We have to reach them however we can," she says. She recently cut a deal with a mother who refused the mumps, measles and rubella (MMR) vaccine for her sons, 2 and 4. "A lot of doctors simply won't go along with this behavior," Kuo explains. But she urged the mother to at least let the boys get their polio shots; they'd renegotiate MMR later.

"I scored this as a win," Kuo says, "because I got a polio vaccine out of her. Health provider to parent — that's how a lot of this is going to be achieved."

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