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USMeet the New York couple donating millions to the anti-vax movement

17:20  19 june  2019
17:20  19 june  2019 Source:   washingtonpost.com

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Meet the New York couple donating millions to the anti-vax movement© Yana Paskova/For The Washington Post “They should be allowed to have the measles if they want the measles,” Del Bigtree told reporters outside an anti-vaccine forum in Brooklyn earlier this month geared to the ultra-Orthodox Jewish community.

A wealthy Manhattan couple has emerged as significant financiers of the anti-vaccine movement, contributing more than $3 million in recent years to groups that stoke fears about immunizations online and at live events — including two forums this year at the epicenter of measles outbreaks in New York’s ultra-Orthodox Jewish community.

Hedge fund manager and philanthropist Bernard Selz and his wife, Lisa, have long donated to organizations focused on the arts, culture, education and the environment. But seven years ago, their private foundation embraced a very different cause: groups that question the safety and effectiveness of vaccines.

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Californian couple Gina and Jeremy Frattini also raise their five children vegan and choose not to have them immunised. They share posts about their lifestyle online with Neither Kat Von D nor her beauty line had addressed the anti - vax argument publicly since the controversy snowballed until Thursday.

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How the Selzes came to support anti-vaccine ideas is unknown, but their financial impact has been enormous. Their money has gone to a handful of determined individuals who have played an outsize role in spreading doubt and misinformation about vaccines and the diseases they prevent. The groups’ false claims linking vaccines to autism and other ailments, while downplaying the risks of measles, have led growing numbers of parents to shun the shots. As a result, health officials have said, the potentially deadly disease has surged to at least 1,044 cases this year, the highest number in nearly three decades.

The Selz Foundation provides roughly three-fourths of the funding for the Informed Consent Action Network, a three-year-old charity that describes its mission as promoting drug and vaccine safety and parental choice in vaccine decisions.

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Lisa Selz serves as the group’s president, but its public face and chief executive is Del Bigtree, a former daytime television show producer who draws big crowds to public events. Bigtree has no medical credentials but holds himself out as an expert on vaccine safety and promotes the idea that government officials have colluded with the pharmaceutical industry to cover up grievous harms from the drugs. In recent weeks, Bigtree has headlined forums in ultra-Orthodox Jewish communities in Brooklyn and Rockland County, N.Y., both areas confronting large measles outbreaks.

“They should be allowed to have the measles if they want the measles,” Bigtree told reporters outside the Brooklyn meeting on June 4. “It’s crazy that there’s this level of intensity around a trivial childhood illness.”

Meet the New York couple donating millions to the anti-vax movement© Bertrand Rindoff Petroff/Getty Images Bernard Selz and his wife, Lisa.

Thanks largely to the Selzes’s donations, ICAN is now the best-funded among a trio of organizations that have amplified concerns about vaccines. ICAN brought in $1.4 million in revenue in 2017, with just over $1 million supplied by the Selz Foundation, according to tax filings.

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The Selzes and the groups they support are hardly the only purveyors of anti-vaccine ideas. Environmental attorney Robert F. Kennedy Jr., a nephew of the late president, runs the Children’s Health Defense, a charity that promotes a similar agenda; it brought in $727,000 in 2017, according to tax filings. Barbara Loe Fisher, who says her son was injured by vaccines, runs a Virginia-based nonprofit that combats legislative efforts to tighten vaccine requirements. Her group, the National Vaccine Information Center, brings in about $1 million a year, according to its 2018 tax documents.

Though they are separately organized, the three groups reinforce one another’s efforts. Kennedy and Bigtree often appear together at public events, while ICAN’s website includes a link to Fisher’s group. Bigtree’s weekly livestream broadcast, which ICAN promotes, frequently features Kennedy.

New York City Health Commissioner Oxiris Barbot, who has battled the nation’s single worst measles outbreak since October, said she never heard of the Selzes. “But I do know the science and the science is clear — the MMR vaccine prevents measles,” she said, using the common acronym for the vaccine that prevents measles, mumps and rubella. “Any suggestion to the contrary is a threat to the health and well-being of New Yorkers.”

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The Selzes did not respond to emails or phone messages. A woman who answered the telephone at the couple’s home on Manhattan’s Upper East Side declined to identify herself. “There’s nothing to say,” she said before hanging up.

Bernard Selz, 79, has more than 40 years experience in the securities industry and runs Selz Capital, a hedge fund that holds a portfolio valued at more than $500 million, according to recent filings from the Securities and Exchange Commission.

Lisa Pagliaro Selz, 68, worked for Manufacturers Hanover Trust and Tiffany and Co. Since 1993, she has helped manage the Selz Foundation “with a focus on humanitarian, educational, geriatric, homeopathic, animal causes and the arts,” according to a news release issued by LaGuardia Community College Foundation, where she was a board member from 2011 to 2016.

The Selzes’ sons — both young adults — declined to comment. Friends and family members reached by The Washington Post said they were unable to shed light on the Selzes’ philanthropic choices.

“This is a topic we don’t discuss,” said Marilyn Skony Stamm, a business executive and close friend of Lisa Selz. “We have differing opinions.” Stamm declined to elaborate, except to say that she values her friendship with the Selzes, whom she called “an incredibly philanthropic family.”

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Support for activist Wakefield

Tax filings for the couple’s charitable foundation show they began supporting the movement in 2012, when they gave $200,000 to a legal fund for Andrew Wakefield, one of the most important anti-vaccine activists.

Wakefield, a former gastroenterologist, rose to fame in 1998 after publishing a paper in The Lancet, a respected British medical journal, that linked the MMR vaccine to autism in eight children. An investigation by Britain’s General Medical Council, which regulates doctors, found Wakefield guilty of professional misconduct in 2010 and revoked his license. The panel concluded that Wakefield had financial and ethical conflicts of interest, and had acted “dishonestly and irresponsibly.” Twelve years after the study’s publication, the Lancet retracted it.

Wakefield declined to comment for this report. He has repeatedly denied wrongdoing and said he was motivated by children’s suffering.

“You have probably heard in the newspapers and elsewhere that I am guilty of scientific fraud,” Wakefield said via Skype to a forum this spring in Rockland, N.Y. “And I want to reassure you that I have never been involved in scientific fraud. What happened to me is what happens to doctors who threaten the bottom line of the pharmaceutical companies.”

By 2012, Wakefield had moved to Austin, where supporters began raising money for the Dr. Wakefield Justice Fund, an effort to sue the journalists who had questioned Wakefield’s findings. The fund was “established by friends and supporters ... to respond to false claims made against Dr. Wakefield; expose the corrupting influence of special interest groups behind these allegations and protect Dr. Wakefield’s work from both profit- and politically-motivated censorship and retribution,” an archived version of the fund’s website says.

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Wakefield’s lawsuit was unsuccessful, but the Selz Foundation found other ways to support his work. After he launched two nonprofits in 2014, the Selz Foundation donated $1.6 million to the groups over the next several years, according to tax records. One, the AMC Foundation, was registered as a public charity to fund documentaries about public health issues. The other was a Texas nonprofit corporation.

Wakefield used the money to help fund a documentary film called “Vaxxed,” which details his allegations about a government coverup of vaccine dangers. After filming, he and other producers traveled the country in a black “Vaxxed” bus that stopped at churches, libraries and chiropractors’ offices to record interviews with parents who believe their children had been injured by vaccines.

“Virtually every dollar in this film to date has been donated by a handful of brave parents and philanthropists,” the “Vaxxed” website says. In the credits, the film lists the Selz Foundation first among 16 donors who financed the production.

The film also introduced a new face to the anti-vax movement: Bigtree. Once a television producer of “The Doctors,” a daytime talk show filmed in Hollywood, Bigtree signed on to co-produce the film, which was released in 2016.

Tara Smith, an infectious disease expert at Kent State University who has researched the anti-vaccine movement, called the film “an effective piece of propaganda” that uses “heart-wrenching stories of children supposedly harmed by vaccination.”

For example, one mother featured in the film said her son developed autism after he was inadvertently given a double dose of the MMR vaccine. Filmmakers provided no medical documentation to support the claim, and the mother has said publicly that her son’s medical records were stolen from her apartment.

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I personally hate the Anti - Vax movement almost as much as I hate Autism $peaks, and that’s saying something. For one thing: Vaccines do NOT cause autism. Vaccines add a significant layer of protection (though there is no way to completely protect from all infectious diseases) to the human immune

The stories in the film “frequently fall apart when scrutinized,” Smith said.

Bigtree said the film’s critics are “spreading misinformation” unless they “have proof that the exact stories of vaccine injury by the parents that appear in ‘Vaxxed’ are false.”

Since the publication of Wakefield’s Lancet paper, 21 studies have investigated vaccines and autism. None has found evidence of a link. The latest and largest study published this spring involved 657,461 Danish children born between 1999 and 2010. Experts note the first symptoms of autism often appear when children are about 12 months old — the same age they receive their first MMR shot — leading many parents to blame vaccines.

Last year, Wakefield dissolved the two nonprofits, according to Texas business filings and Wakefield’s co-founder, Polly Tommey. During its brief life, the AMC Foundation doled out grants exclusively to Autism Media Channel LLC, a private company that was also run by Wakefield, Tommey and a third partner, according to tax filings.

According to the filings, the grants supported an educational film project.

Attorney Marc Owens, a former head of the IRS division responsible for monitoring tax-exempt organizations, said the arrangement is “a very suspicious transaction.”

“They transferred all of their income, it appears — with the exception of a small amount — to, basically, themselves,” Owens said. “It is extremely unusual to see this sort of expenditure from a public charity.”

Meet the New York couple donating millions to the anti-vax movement© Provided by WP Company LLC d/b/a The Washington Post In an interview, Tommey defended the transactions.

“Everything was cleared legally, and we stuck to our mission,” she said.

Tommey said she is now focused on the upcoming release of a sequel to “Vaxxed” that will include information about Gardasil, a vaccine that protects against several strains of the human papillomavirus. Wakefield, meanwhile, has launched another public charity to fund educational film projects, according to tax filings.

The same year “Vaxxed” was released, Bigtree established the Informed Consent Action Network. The Selz Foundation donated $100,000 that first year — 83 percent of the charity’s funding, according to tax records.

Meet the New York couple donating millions to the anti-vax movement© Provided by WP Company LLC d/b/a The Washington Post

As Bigtree became a leader within the movement, donations from the Selzes grew: In 2017, the foundation boosted its contribution to more than $1 million — 74 percent of ICAN’s total revenue.

Tax filings show the charity spent more than $600,000 that year on legal fees. In 2018, the organization filed Freedom of Information Act lawsuits against federal agencies, including the Food and Drug Administration, the National Institutes of Health and the Department of Health and Human Services. The suits sought to compel release of data and documents related to vaccine safety.

Another quarter of a million dollars went toward salaries for two ICAN officers: Catharine Layton, the group’s chief administrative officer, was paid $98,000. And Bigtree, who was previously unpaid by the charity, drew a salary of $146,000.

In a written response to questions from The Post, Bigtree said the compensation from ICAN is currently his only salary. He declined to answer questions about his relationship with the Selzes.

“Like many charities, we receive funding from multiple sources and we do not discuss our donors or their donations as a matter of policy,” he wrote. “None of our donors make decisions on the science we research, or the lawsuits that we file.”

ICAN also reported travel expenses exceeding $148,000 in 2017. Bigtree frequently travels the country, speaking at wellness conferences and testifying before lawmakers considering vaccine-related legislation.

At the height of a measles outbreak in Washington state in February, for example, Bigtree testified in Olympia against a measure intended to make it harder for parents to opt out of measles vaccinations for school-age children. The bill passed and was signed into law in April.

In late April, Bigtree spoke in Salem, Ore., at a rally against a bill aimed at getting more children vaccinated against measles and other preventable diseases. A day later, he led a similar protest in Sacramento.

In a recent interview, Bigtree said he had discovered “this ability to be able to talk to legislators that I didn’t know I had.”

Bigtree also produces a weekly online talk show broadcast through Facebook and other social media that has brought in new supporters. Among them are New York City real estate executive Stephen Benjamin and his wife, Elizabeth.

The couple donated $20,000 to ICAN in 2017 through their Will B Strong Foundation, which is named in honor of their son, a leukemia survivor. In an interview, Benjamin said he felt called to support ICAN’s efforts to raise questions about vaccine safety after watching Bigtree’s appearances online.

“We feel strongly that this issue is not being handled well by the industry or our political leaders,” Benjamin said in an email. “Certainly what is happening right now — labeling minority groups and censoring opinion and discussion — is dangerous and un-American.”

Bigtree’s appearances before ultra-Orthodox Jewish audiences in New York this spring, at the heart of the outbreak, have been particularly controversial. Some critics blasted his use of Holocaust imagery, including a yellow star of David he wore on his lapel during a March rally in Austin.

Bigtree said he did so to protest Rockland County’s attempt this spring to ban unvaccinated children from public places. “They were going to quarantine them during Passover,” he during a Brooklyn forum earlier this month. “They weren’t going to be allowed in their own synagogues. I pulled out a yellow star of David ... and I said, ‘I stand with the Orthodox Jewish Community in Rockland County, New York.’ ”

'No fear of the measles'

Most vexing to public health officials are Bigtree’s efforts to downplay the seriousness of measles. At one point, Bigtree said he would be “ecstatic” if his two unvaccinated children, ages 5 and 10, got sick.

“We haven’t had a death in decades from this disease,” he said at the Brooklyn forum.

Meet the New York couple donating millions to the anti-vax movement© Yana Paskova/For The Washington Post Del Bigtree is the public face of the Informed Consent Action Network, which gets three-quarters of its funding from the Selzes. Bigtree told The Post that his remarks are backed by “peer-reviewed science or articles by reputable medical authorities.”

“I can say that virtually every one of our grandparents survived the measles or we wouldn’t be here,” he said. “They also never spoke of it as being dangerous. … I have no fear of the measles.”

In fact, the last confirmed U.S. death from measles was four years ago, when a 28-year-old woman died in Washington state. Meanwhile, hundreds of people have died of measles this year in other countries, including Madagascar, Ukraine and the Philippines.

Before 1963, when the vaccine was introduced to the United States, 3 million to 4 million Americans were infected each year, with thousands developing complications that led to hospitalization or lifelong disability. Approximately 400 to 500 people died every year.

Today, the Centers for Disease Control and Prevention estimates that one to three children out of 1,000 infected with measles will die from complications.

Bigtree, who has appearances booked through the end of the summer, dismisses such projections as government fear-mongering to advance the interests of the drug industry.

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Alice Crites and Ben Guarino contributed to this report.

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