CBS News May 12, 2019, 9:07 AM Teaching anti-vax parents to trust science and the MMR vaccine
For years Arabella Blume, a mother of three living in Michigan, mistakenly blamed herself for her son's autism. "I felt like I destroyed him," she said. "For a long time, I thought that was my fault. … I felt like everyone was looking at me going, 'What did you do?' You know, 'How could you do this to him?' And I was looking at Alex going, 'How could I do this to him?'"
That's because he was diagnosed shortly after receiving the vaccine for measles, mumps and rubella (or MMR).
Then, a friend pointed her to the dozens of medical studies showing the vaccine does not cause autism. "And I started looking through them. And then I was at another crossroads where I was like, 'But this was all my fault for so long.' And then I was crying because I was wrong about that."
Blume is living proof that the antidote to misinformation about vaccines is science. "I was relieved," she said, "because I didn't hurt him. His autism wasn't my fault."
The current outbreaks of measles around the country are largely a result of parents being afraid to vaccinate their children against the virus. The number one concern? Autism.
But the upsurge in the anti-vaccine movement in the last 20 years was ignited by a 1998 study in The Lancet, a prestigious British journal, that falsely linked the MMR vaccine with autism.
It took 12 years for the journal to retract the study after investigations concluded the research was fraudulent. The lead author was stripped of his medical license.
But the damage was done.
"I bled anti-vaccine talk," Blume said. "There's all kinds of crazy stuff on the internet. The majority of people are like me – they're not super-crazy, they're just trying to find the real answers to stuff."
So, what does cause autism? That answer has been slow to come, partly because of the enormous detour researchers were forced to take following the Lancet article. Charles Nelson, a professor of pediatrics at Harvard Medical School and a neuroscientist at Boston Children's Hospital, said the article caused "irreparable damage," for several reasons: "First, it led many parents to stop vaccinating their kids for no reason. Second, it derailed the course of science by investing all this money to prove that vaccines didn't cause autism, rather than try to understand what does cause autism. It was a big diversion."
Despite that diversion, the science of autism is slowly emerging. About 100 genes have been linked to the disorder so far. And the overwhelming scientific consensus is that vaccines do not cause autism.
Why, then, do some parents remain unconvinced?
Nelson said, "I think one thing that is concerning to parents and to scientists is we don't know what causes autism. And because of that big uncertainty, and because one in 59 children have autism, we try to latch onto some explanation."
Nelson has spent the last 14 years trying to understand autism. He's currently studying the brain activity of babies who have siblings with autism and therefore have an increased chance of having the condition themselves.
He showed CBS News chief medical correspondent Dr. Jon LaPook the results of electroencephalogram tests conducted on babies, on which 128 sensors had been placed: "We're looking at the continuous EEG – that is the electrical signal that these billions of neurons generate that we pick up at the scalp surface. It looks for patterns … If you see this pattern at three months, you're likely to see autism at three years."
To understand the profound implication of Nelson's research, you need to know a crucial fact: the first dose of MMR vaccine is usually not given until a baby is 12 months old. "Our work is suggesting that we're seeing signs of autism, at least in the brain, as early as three to six months of age, long before the MMR vaccine has been given," he said. "So, clearly it can't be related to a vaccine, 'cause the vaccines haven't been given yet."
Dr. LaPook asked, "Do you think the logic and the science at this point, with the anti-vaccine movement spreading, is that gonna do it?"
"No," Nelson replied. "One thing I'm concerned about is that, even though the science is overwhelming that vaccines don't cause autism, there are still people who think vaccines cause autism."
Nadine Gartner, an attorney and mother of two, founded an organization in Portland, Oregon, called Boost. She told Dr. LaPook, "The vast majority of people who are not vaccinating are not the staunch, anti-vaccine movers who will never vaccinate their children no matter what. We are really concerned about reaching the parents in the middle, those who feel fearful and confused by the information flying around on all sides."
Boost holds local workshops, led by pediatricians, to help parents figure out who and what to believe, especially since the anti-vaccine rhetoric extends beyond MMR to the many other childhood immunizations recommended by health officials.
Gartner said it does not work telling parents what to do: "We know every parent wants to make the best health decisions for their children. So, I want to make sure that when parents are examining the facts, that they understand exactly what's scientific [and] what's not, and to really be able to separate the truth from the fiction."
Boost is a non-profit organization. Gartner says they do not take donations from any special interest groups, including the pharmaceutical industry.
"I really love helping inform families and helping them make that informed choice," said Dr. Joel Amundson, a Portland pediatrician who volunteers his time to answer questions at the Boost workshops. he said, "My take is that you've got, kind of on one side, people really scaring you of what might happen if you do something; and on the other side, people scaring you of what might happen if you don't do something."
"So, how do you get parents to move forward?" asked Dr. LaPook.
"Without focusing on the fear tactics, but really just understanding the different risks and benefits involved," he replied.
Dr. Joel, as he's known to his patients, says he has a 99-percent vaccination rate in his clinic – higher than the percentage needed to maintain something called "herd immunity." That means if enough people get vaccinated, it protects people who are not able to be vaccinated. So, when parents decide not to give the MMR, they're rolling the dice not just for their child, but for other people, including babies under 12 months, and people with cancer or weakened immune systems.
"A huge part of the conversation is building trust," said Dr. Amundson, "and knowing that we're not trying to push anything onto families. We know that approach doesn't work. I've had patients that have done not a single vaccine for five years, and then turned around and chosen to do them."
Many people questioning vaccines have forgotten that viruses such as measles, polio and smallpox used to kill millions of people around the world every year. Before the measles vaccine was available in 1963, three to four million Americans were infected each year: 400-500 died, 48,000 were hospitalized, and about 1,000 suffered severe inflammation of the brain.
Dr. Amundson explains to parents that there are rare serious side effects from vaccines. But his bottom line is clear: For the person getting the vaccine, the benefits far outweigh the potential risks.
Consider this: In 2017 alone, approximately 110,000 people died globally from the measles, mostly children under five, despite the availability of an effective and safe vaccine.
"I found the vast majority of people that are hesitant, that are nervous about it, really are just hesitant; they're concerned about stuff that they've read," said Dr. Amundson. "They just want to do the right thing for their kids."
Arabella Blume empathizes with parents who just want to do the right thing. "It's fear and love – it's fear of doing the wrong thing, and loving your kid so much that you'll go against an entire scientific community telling you you're wrong, just to try and protect them," she said.
But now, looking down at her healthy newborn baby girl, Lily, she said, "The funny thing is, that with Alex I can remember looking down and thinking, 'I love him too much, I can't vaccinate him, I can't hurt him that way.' And now with her, I look down and I have the same thought, only opposite, where it's like, 'I love her so much, I can't take her outta the house until I vaccinate her.' Each comes from a place of love."
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Story produced by Amy Wall.