Some of the faces she had seen only on Facebook. Others, fellow parents, she’d known for some time.
Miano, 40, was hosting a meet-up for people like her who challenge traditional health norms, like vaccinating their kids.
A mother of three who lives and works in North Pinellas County, Miano chose not to vaccinate her youngest after dealing with developmental issues with her second child. She believes vaccinations are the reason her son Davis has autism.
At the juicery, she and other Tampa Bay area moms gathered around plush chairs and colorful couches, sharing stories and self-care tips over lattes, veggie smoothies and organic champagne. Among the topics: CBD oil, yoga, whole foods and activated charcoal.
Miano and her guests are part of a small but increasingly vocal slice of the U.S. population who distrust doctors and federal health agencies and often base their positions on misinformation from fringe sources.
The medical community has sounded alarms. But so too have tech companies like Amazon and Instagram, which are trying to keep false information from spreading on their platforms.
Miano sees this resistance and works to push past it.
“Before Facebook started censoring so much, it’s where we shared a lot of facts and information,” she said. “Now our posts get deleted all the time. It’s so time-consuming to do the research. It’s not easy. But they don’t want it to be shared.”
At the same time, vaccine-preventable diseases are mounting a comeback.
The Centers for Disease Control and Prevention is reporting the largest number of measles cases nationally in 25 years. New York, Washington and Texas are seeing outbreaks.
Florida investigated 15 cases in 2018, up from the previous five years, when fewer than 10 cases a year was the norm.
Pinellas County reported three cases in unvaccinated adults last year — the first the county has seen in 20 years. And last month, researchers identified Hillsborough as the 17th-most at-risk county in the nation for a measles outbreak.
Some doctors fear they’ll never be able to convince people like Miano and her friends that vaccines are safe and effective. The mindset is similar to that of Joshua McAdams and Taylor Bland-Ball, the Tampa couple who recently ended chemotherapy for their 3-year-old son, Noah, in favor of alternative remedies, only to have a Hillsborough County judge order last month that the treatment resume.
“It’s hard to compete with these personal stories that people share on social media, and what parents see in front of their own eyes with their own children,” said Dr. Rebecca Plant, a pediatrician at Tampa General Hospital and an assistant professor with USF Health. “The latter is going to carry a lot heavier of a weight in their own hearts and minds than if I can sit there and spout all the numbers and recent publications.”
The conversation at Miano’s meet-up turns to all the backlash they get, not only from doctors, but from neighbors and Facebook friends as well.
“I make suggestions that I think can help their children, who just look so sickly all the time, and they are so defensive,” one woman says. “I wish them no harm. I just want to help them.”
Another compares the reaction to how Nazis treated Jews: “We’re the most-hated people in America right now.”
• • •
On a weekday afternoon, Miano’s son was preparing to spend the evening at a friend’s house. Ellie, 8, danced around the living room with her dog, Blue, an Australian shepherd. And Taylor, 15, nursed a sunburn she got from a field trip to a blueberry farm, still wearing her T-shirt and gym shorts from volleyball practice.
“Come eat some pineapple; it’ll help with your cough,” Miano said to Ellie, who sat at the granite kitchen counter, next to a salt lamp. Essential oils spouted into the air from a diffuser not far away.
Ellie ate a few handfuls before announcing: “I’m going to meditate in my room for 30 minutes” and trotted off.
“Okay, baby,” said Miano, who prepared a meal for Blue. Into a tin bowl she mashed a slab of raw meat, some seaweed flakes and a few green-speckled vitamins. On top, she cracked a raw egg, leaving in the shell pieces before sliding it onto the floor.
A kitchen drawer next to the utensils was full of organic ingredients: Packets of a mushroom-based alternative to coffee. Vials of essential oils, CBD oil and colloidal silver, a product marketed as a nutritional supplement but one the medical community has labeled as unproven and possibly harmful.
Ellie was “wild-schooled” until she turned 8 — essentially home-schooled by her mother and a cohort of other women with similar views and practices. Instead of learning from a desk indoors, she spent most of her time in parks or the woods near their home in the well-manicured sprawl of North Pinellas.
Miano is strict about her children’s diet. At birthday parties, she’ll bring her own baked goods so Ellie can have a cupcake when it comes time to sing and cut the cake. It will be grain-free and won’t have processed sugar.
Because of her diet, based on raw, organic foods that incorporate some Paleo guidelines, Ellie spends time at home when her new class goes on field trips. “I just can’t control what they eat,” Miano explains.
Maintaining her children’s diets is also difficult with other family members, like Miano’s ex-husband, the father of her two older children, who doesn’t share the same beliefs or lifestyle choices, she says.
It wasn’t always like this.
Thirteen years ago, Miano gave birth to Davis, who was healthy, she said, until it came time for routine vaccinations, which were administered on a normal schedule through his infant years. Typically, the first round occurs with several shots at birth to 3 months, then more at 18 months.
Davis was never diagnosed as autistic by a physician, but being his mother, Miano said she can tell something is wrong. He is smart and does well in school. But it’s hard for him to make eye contact when speaking, and he struggles to make friends and interact with others.
It would have been easier if he’d contracted measles, she said.
There is no scientific link between vaccinations and autism. Multiple studies have addressed the issue, including nine studies since 2003 that were funded or conducted by the federal Centers for Disease Control and Prevention. They found no connection between autism and a preservative called thimerosal often used in vaccines, and no connection between autism and the measles, mumps, and rubella vaccine given to U.S. children.
Miano says she has read the studies and doesn’t believe them. She said vaccines contain aborted fetal cells and suggests they are linked to many people being transgender.
Matt Woodruff, a postdoctoral research fellow with the Vaccine Research Center at Emory University, said it’s important to understand where parents like Miano are coming from.
“It’s a sad fact that the vaccine schedule stretches from two months to ages 2, 3 and 4. That’s the same timeline that kids develop and start to display autism,” he said. “You’re not going to convince that parent that it didn’t come from vaccines.”
Miano says there are alternative ways to keep her children safe. For one, she says, she can determine their immune protection using lab tests that track antibodies in the blood.
While Miano and her children have health insurance through her husband’s company, she said they don’t use it. It’s been years since any of her children have seen a pediatrician. For wellness exams required for school, she takes her kids to a chiropractor. She said she would take them to the hospital only in a life-or-death emergency.
Ellie is one of nearly 25,000 students in Florida with a religious exemption filed with the state health department, waiving the need for immunizations.
Davis is “80 percent there” or cured, as Miano sees it, from autism. She said she’s been managing his diet and using holistic treatments to “reverse” the damagedone by vaccines.
One is “BodyTalk,” an alternative health practice focused on “quantum physics” that combines yoga, acupuncture, kinesiology and other methods and is based on a book by John Veltheim. In addition, Miano said, she’s spent a lot of time “detoxing” her son, using electromagnetic therapy and the occasional fecal-matter transplant to boost his microbiome and gut health. She cites the gut’s strong connection to the brain.
She says she doesn’t judge parents who choose to vaccinate their children or who struggle to feed them a healthy diet.
“I feel for people who have to work and put their kids in day care, and just feed them McDonald’s because they’re exhausted at the end of the day,” she said. “I just encourage everybody to do their own research. There’s so much to learn out there. And you don’t have to neglect and abuse your children with McDonald’s.”
She added: “They must have such strong feelings of guilt. I know I would.”
• • •
Early in her career, Dr. Vivian Herrero would recite the same message to parents worried about vaccines.
“The No. 1 thing we’re told is to tell everyone to get vaccinated, as if there’s no other option,” she recalled.
Herrero, 39, worked at Community Health Centers of Pinellas before opening her own pediatrics office in downtown Dunedin. She said her outlook on vaccination is more nuanced now.
“What we should be doing is publishing more information about using vaccines and what the outcomes look like over time,” she said. “But instead we’re told not to question it, which infuriates me because everything else we’re taught as doctors is to question everything and to do the research.”
When Herrero opened her practice in 2015, she started seeing more families who opted to vaccinate on a “delayed” schedule or chose not to vaccinate at all. Many told her they had been kicked out of other doctor’s offices for that reason.
“It’s not my job to judge you,” Herrero said.
Word has spread about her leniency on the issue, so she’s begun to draw patients from Bradenton, Wesley Chapel and Tampa.
“Without a pediatrician these families are just going to see a chiropractor or go to an urgent-care clinic, where they do not have a relationship with their doctor,” she said. “It’s my job to give parents the right information so they are prepared and go into making this decision knowing what can happen.”
Her policy is to offer vaccinations at 1 year old, and if parents want to delay, at 3 years old.
“I don’t want to push people to do something that I’ll regret and they’ll regret. If you’ve ever seen a baby have a seizure, that’s terrifying,” she said, referring to the uncommon side effect of febrile seizures, which some children experience with vaccines. Most recover quickly and suffer no permanent harm.
Plant looks at it differently, influenced by her work at Tampa General Hospital.
She has seen a child lose an arm to chicken pox and a leg to meningitis. She has seen a baby stop breathing because of complications from whooping cough. And she has seen seizures.
She worries that soon she’ll add measles to that list, knowing that one or two out of every 1,000 people with the virus will die.
“I’m a mom myself,” said Plant, whose kids are 5, 4 and 2. “Until the recent outbreak, we haven’t seen this disease in many years, so that fear of what can happen is not there anymore. We’re less afraid of the disease and more afraid of the vaccine.”
Plant said she is constantly having to weigh parents’ valid concerns about medicines and treatments against a potential public-health risk. She sees her biggest job as stopping the spread of misinformation.
“All I can do is express what I know, which is that the numbers are real and that vaccines work,” she said.
She said she often sends parents home with information to read and encourages them to be skeptical of anything a doctor recommends for their child. “But they should make sure they’re looking at good information when they research, and not anecdotal social-media stories, which aren’t always true, reliable sources,” she said.
Parents in the United States who forgo vaccines would think differently if they ever saw a child die from measles, said Caryl Stern, president and chief executive officer of the United Nations Children’s Fund, known as UNICEF.
In 2017, the organization vaccinated 78 million children against measles across the world. It estimates that 1 in 5 still misses out on essential vaccinations every year. About 1.5 million of them will die.
Stern has met women in Kenya who walked for days through the desert for a chance to get their children vaccinated. She has held the hand of a 19-year-old mom as her infant died of tetanus, she said.
“Juxtapose that with what’s happening here in the U.S., and I can’t help but go, ‘What is wrong with us?’ ”
• • •
Miano grew up on an Alabama farm before studying sports medicine in college, which exposed her to the subject of nutrition. It quickly became her passion, but it wasn’t until she began experiencing her own health issues that she felt the benefits of diet changes, yoga and meditation.
She wasn’t diagnosed with any specific illness at the time, but complications would continue to affect her later in life.
“Diagnoses are good for a path to take forward, but it’s not great when people become stuck within that diagnosis,” she said. “I am empathetic for people who have disease, but I have no sympathy for people who let it hold them back.”
Miano said her breast implants caused her to develop cancer after having children. She was released from her OB-GYN physician’s practice when she refused to get a mammogram and wouldn’t comply with her doctor’s treatment plan. Instead, Miano said, she cured herself by using magnets and managing her diet.
While some medical studies suggest magnetic fields can shrink tumors, the treatment is not scientifically proven or FDA-approved to treat cancer.
Miano’s interest in health led her to create a nutrition and alternative-medicine business, England’s Primal Health, which she operates out of a medical office complex in Safety Harbor.
Dressed in a white doctor’s coat, barefoot and wearing a blousy T-shirt that reads “I saw that — Karma,” Miano prepared for a late-morning appointment recently.
A bodywork table sat near a bank of windows. Books on holistic health and nutrition lined another wall. Miano’s certificates in holistic and Chinese medicine were displayed around the office.
Her first appointment of the day was Brittanie Pope, a friend and member of her meet-up group. Pope, 28, said she lost 60 pounds after her pregnancy thanks to Miano’s guidance on diet and various treatments.
Pope is currently on a “ketogenic diet,” a high-fat, low-carb regimen. Occasionally she’ll follow an “alkaline diet” under Miano’s guidance, avoiding processed meats and eating mostly organic fruits and vegetables in line with an autoimmune protocol.
Pope removes her clothes and lies face down on the table for electromagnetic therapy. Miano turns the dial connected to a small black wand with two circular prongs at the end, warning “this could feel a little sting-y.”
She says the device helps increase circulation. She presses it into Pope’s legs to aid in smoothing out cellulite and to firm the skin there. Pope winces when the wand sends pulses into her thighs.
Next, Miano moves on to “myofascial cupping,” a procedure often used on athletes. Suction is applied to the body through a cup, lifting the tissue. It is said to help with circulation, pain and injury management. Miano said it breaks up scar tissue.
At her home in the Citrus Park area, Pope runs a day care for families like hers and Miano’s. Some of the children are on a “delayed” vaccination schedule. Others won’t get a shot at all. She said she does not fear the children will get measles.
Pope said she identifies as a “vaccine-injured” person. She had scarlet fever three times in fourth grade and suffered from a poor immune system most of her life.
It helps, she said, to have people “on the same path,” for support.
“I’m going to support the people I trust, like England, over something like what my health insurance company tells me to do,” she said. “Doctors don’t spend enough time with you to get to know you, or me to know them.”
• • •
Across the country, pockets of people are banding together over a shared belief that vaccines are dangerous. Some, like Orthodox Jewish families in New York, have deeply rooted cultural beliefs that stem from past abuse. But that’s not necessarily the case with every group.
“Once you become part of a community that is close-knit like that, those become your reference points,” said Elisa Sobo, a professor of anthropology at San Diego State University. “Everything you say or experience becomes reinforced by this group, and your connections to the outside world just aren’t there anymore. There’s no reality check. … And then the rates of anti-vaccination keep going up and up.”
She added that history plays a role in where we are today — from the Nazi doctors who experimented on Jewish prisoners, to the Tuskegee Study that failed to treat black men adequately for syphilis, to the way health care, and its cost, has evolved in the United States.
Some doctors are starting to have “real, true” conversations with patients, where they listen and work to combat misinformation. But it isn’t happening enough, Sobo said.
“In this current climate, people don’t know who to trust,” she said. “Moms are going online and finding information for themselves.”
What concerns her more, she said, is regaining the trust of people who have been labeled “anti-vaxxers,” and are pushed “into a corner with this sense of identity.”
Woodruff, the Emory University research fellow, said the scientific community deserves some of the blame.
“We’ve been abhorrently quiet for far too long,” he said. “We’re not good at communicating, and that’s a problem when the group where the expertise lies is not vocal.”
The only way forward, he said, is to continue to perform large scientific studies, make every effort to share the results and implement effective laws against not vaccinating.
• • •
At the Escape Root Juicery, women clap for a mom who says she was injured by vaccines as a child. She tells the group she’s “on the spectrum.” She describes the battles she faced with childhood seizures, trouble maintaining eye contact, managing loud noises and rooms with lots of people, all of which cause her stress. She didn’t want that for her infant son.
The meet-up group began as a book club for mothers in North Pinellas. They got together to talk about their kids and the lifestyle they lead, often sharing diet and health tips.
Miano created a private Facebook group for them to share resources and over time it grew to a couple hundred members.
Now that her children are older, she uses the group to connect with others who often feel at war with their neighbors, other parents from school and even family members, because of their decision to not vaccinate.
Miano also joined another growing group called “Warrior Moms,” which has a national presence and lobbies to loosen vaccination requirements. Several members spoke in Tallahassee during this year’s legislative session to oppose HB 213, a bill that creates a central immunization registry to track whether students are vaccinated. The measure passed and goes into effect in 2021.
Many in the Warrior Moms group follow Dr. Susan Cornelia Franz, an Orlando pediatrician whose interviews and talks on YouTube have attracted an international following.
Much like Herrero, the Dunedin doctor, Franz began her medical career insisting patients be vaccinated on time. But the longer she practiced, the more she began to see instances of health conditions, including autism, which she said were reactions to vaccines.
“When people say the same thing over and over you can’t just ignore it,” Franz said at her office.
She said she prescribes antibiotics and will administer vaccines when requested, but she couples her traditional medical degree with homeopathy treatments.
Miano is a fan. Franz is “just amazing,” she says.
As for the Warrior Moms, Miano says, they are parents “who won’t accept the fate of their injured child, and who are fighting back for their kids and others who don’t have an advocate.”
It’s there where she met many of the people she now considers her best friends. Through them, she first saw the controversial documentary Vaxxed and helped bring it to Tampa Bay for a screening in December.
She says they all get together to show each other support and keep up their fight. No matter the opposition from federal agencies, or school systems, or online platforms.
“You cannot dismiss a parent’s observation and gut feeling,” Franz said. “Even when she doesn’t have any facts, and she just knows it. You don’t have to be a mother to understand that she will not back down. Nor should she.”
Contact Justine Griffin at jgriffin@tampabay.com or (727) 893-8467. Follow @SunBizGriffin.
|