Spoiler warning: Do not read ahead if you haven’t seen “Everything, Everything.“
The recently released romantic drama “Everything, Everything” has drawn criticism from the immunodeficiency community for its inaccurate portrayal of Severe Combined Immune Deficiency, or SCID.
The film, which is based on a 2015 novel, stars Amandla Stenberg as Maddy, a young woman who has been diagnosed with the genetic disorder and is forced to spend her life indoors in a sterilized and controlled environment. But after falling in love with the neighbor boy, “Melissa & Joey”‘s Nick Robinson, Maddy begins to question the veracity of her disease, only to discover her mother (Anika Noni Rose) hasn’t been entirely honest with her.
The Immune Deficiency Foundation released a press statement this week pointing out several errors in the depiction of the disease. According to the statement, which contains spoilers, the very premise that Maddy is forced to spend her life indoors is unlikely to have been prescribed as a treatment for SCID.
SCID is an extremely rare genetic disorder which causes infants to be born without crucial white blood cells, and leaves them highly vulnerable to infection from bacteria. The disease is curable, but requires a bone marrow transplant, which isn’t always successful. That’s what happened to David Vetter, the boy whose story was featured in the 1976 TV Movie “The Boy in the Plastic Bubble,” which popularized the idea that those with the diagnosis must be kept in sterile environments at all times. Vetter died at the age of 12 after his bone marrow transplant was unsuccessful.
In addition, Maddy often describes herself as “allergic to the world,” which also reflects a poor understanding of the disease. Allergies are a result of over-activity of the immune system, whereas SCID patients have no immune system whatsoever.
Most important, however, is the film’s insensitivity to the families of those who have the disease. By portraying Maddy as a victim of Munchhausen by proxy in the end, the film ignores the fact that many who seek a SCID diagnosis are dismissed as hypochondriacs, and that most parents of SCID children would do anything for their child to not have the disease.
Marcia Boyle, the president of the Immune Deficiency Foundation, said she wishes writers would actually do the research about diseases like these and that these kinds of depictions are outright cruel. “Even if they do the research and they’re not terribly concerned with being accurate, why would you trivialize and use as a prop mechanism these very serious diseases, where if they’re not identified and treated early, (the patients) die?” she questioned.
Boyle felt that because of the inclusion of the disease in the film, viewers would get a false idea of what the disease is. “Many people really don’t understand what these disorders are, so when they see something in a movie, many people are going to think you can have something like SCID and actually live the way this girl lived,” she claimed. “It’s totally false, our patients don’t live like that.”
“Everything, Everything” is in theaters now.