Advocates criticize 'Everything, Everything' movie for misinforming public on immune disorders

Not again, thought Marcia Boyle when she heard a film was opening Friday called "Everything, Everything" about a teen girl prevented by an illness from leaving the "hermetically sealed environment within her house."

The illness the movie features is severe combined immune deficiency, or SCID, but became better known as the "bubble boy" disease in the 1970s after the first in a series of shows based on a Texas boy forced to live germ free to prevent deadly infections.

"The movies, to different degrees, were misrepresentations of his life and they have been completely upsetting to families with a child with SCID," said Boyle, a Baltimore woman who became an advocate for those with immune deficiences after her son was born with one. "This is the same thing."

The romantic drama is the latest film to draw criticism for taking liberties with medical facts, misrepresenting disorders or portraying science incorrectly or even negatively. Advocates say such movies are not just missed opportunities to explain rare illnesses like SCID, they are hurtful and potentially harmful.

"Split," a recently released horror movie about a man with dissociative identity disorder who kidnaps and torments women, drew criticism from mental health advocates for depicting sufferers as dangerous. Disability rights advocates slammed last year's "Me Before You" for sending a message that being in a wheelchair made life not worth living. And the Ben Affleck drama "The Accountant" drew the ire of some in the autistic community who said it was not a realistic portrayal.

Boyle said "Everything, Everything" perpetuates the false stereotypes that those with the disorders need to live isolated lives or, if children don't look particularly sick, that parents are needlessly overprotective.

She acknowledged she hasn't seen the movie but read the book on which it was based and shared her concerns with producers at Warner Bros. Pictures, which did not respond to requests for comment from The Sun. The book publisher Penguin Random House declined to comment.

Hollywood's preference for drama at the expense of science has drawn the attention of the National Academy of Sciences, which created the Science & Entertainment Exchange in 2008. The exchange has provided scientists and engineers to consult on more than 1,900 movies and TV shows including the Marvel and Star Trek franchises.

Officials see movies and shows as opportunities to teach and inspire, said Ann Merchant, a spokeswoman for the exchange. The exchange even proposes characters and plot lines. But she said entertainers have no obligations.

"It's certainly not Hollywood's job to make sure everything is accurate in the entertainment products they create," Merchant said. "Sometimes that's frustrating to those whose job it is to think about accurate messaging."

However, Merchant said, there is a line. Scientists would object if a movie persuaded viewers that life-saving vaccines were unsafe, for example. As for "Everything, Everything," she said immune deficiency advocates should use the movie as a platform to disseminate accurate information.

Boyle launched a group called the Baltimore-based Immune Deficiency Foundation after her son John was born in the 1970s with one of the more than 300 types of genetic immunity disorders.

According to the foundation and government data, about 250,000 people suffer from immune deficiency disorders and the odds of being born with SCID, among the most serious, life-threatening forms, is now close to one in 40,000.

Sufferers with the inherited disorder can't make antibodies to protect themselves from infections. Most states, including Maryland, now screen newborns for SCID, which is cureable with a bone marrow transplant. Other treatments are emerging, but those who go undiagnosed or untreated typically die in the first year of life.

Other forms of immune deficiency, like the one Boyle's son inherited, are treated with regular infusions of antibodies or other methods. With care and precautions, patients can lead mostly normal lives.

Seeing another movie made that focuses on life in a bubble is frustrating, Boyle said. And the twist at the end of the movie perpetuates the narrative about overprotective parents.

It's also misrepresents SCID since no untreated sufferer has lived to be a teenager, she said.

SCID got widespread attention — and the bubble reference — from a patient who lived in NASA-built, sealed environment in his parents' house until he was 12. He died of an infection after a bone marrow transplant. There are no similar examples.

Some in the medical community, who also have not seen "Everything, Everything," say the entertainment industry should have some obligations.

Patients with immune deficiency disorders "should be celebrated and not portrayed as victims," said Dr. Aaron P. Rapoport, a University of Maryland School of Medicine professor and director of the blood and marrow transplantation program in the Marlene and Stewart Greenebaum Comprehensive Cancer Center.

While he does not treat children with the disorders, they've contributed to scientific advancements with their willingness to undergo risky treatments or participate in studies that might not benefit them, he said. Portraying them as victims opens them up to prejudice or other inappropriate responses, he said.

Viewers do tend to believe what they see on screen, said Dr. James A. Tulsky, a Harvard Medical School professor who once co-authored a study on how CPR was portrayed on TV. He found that people believed the method of reviving patients was far more effective than it really was, leaving health care professionals with the difficult task of correcting those misperceptions.

"We should recognize that what the public sees on the screen is what they will most likely believe," he said. "Hollywood portrayals of illness are far more convincing than most public health education. Therefore, producers do have an ethical responsibility to be as accurate as possible."

There are positive examples, said Carlos Moreno, an associate professor in the Emory University School of Medicine's department of biomedical infomatics who has written about how science is portrayed on screen.

He cited "The Martian," where a scientist played by Matt Damon creatively used his training to survive alone on Mars, and "The Big Bang Theory," a TV comedy about nerdy professors who often rely on their smarts.

Too often, he said, entertainers do not get it right or portray scientists as supervillians or unable to control their results of their research. Moreno said that's fine when the show is clearly science fiction, but not when it's offered in a realistic way.

"It can really undermine public support for science, research and funding of science and erode public trust," he said. "I think it makes for better entertainment when they get closer to the truth.

"Zombie viruses," he added, "make me crazy."

meredith.cohn@baltsun.com

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