MANHATTAN — A movie set to premiere at the Tribeca Film Festival on Friday exposes horrific medical tests that were conducted on mentally disabled children as recently as 40 years ago in Willowbrook State School, a former mental institution in Staten Island.
The 16-minute short "Willowbrook," directed by Ross Cohen, shines new light on one of the country's most famous bioethical cases, in which disabled children were purposely injected with hepatitis as part of an experimental program implemented by the U.S. government.
"Rarely is medical testing considered ethical in adults, never mind in children," Cohen said when discussing his film, which is fictional but based on the true events that occurred at the institution, starting in 1955 and ending in the mid 1970s.
Starring Patrick Heusinger, the film shows a young doctor torn between his ethical beliefs and his duties as a doctor when he's hired to inject the children with the hepatitis virus. The film, which will debut in Greenwich Village, depicts hospital rooms overfilled with disabled children who had very little care, writhing in pain from diseases contracted due to unsanitary conditions.
Cohen, who is finishing his Masters of Fine Arts at the University of Southern California, says he was motivated to create the film because he was horrified by what occurred at Willowbrook, which was famously exposed in 1972 in a 28-minute documentary that aired on WABC-TV, with correspondent Geraldo Rivera.
"Children who had autism, who were deaf, were all shoved together in one big institution," Cohen said. "It didn't sit too well with me."
As Cohen further researched the institution, he discovered a part of the story that was less well known — the fact that parents were often coaxed into signing consent forms that allowed their children to be injected with a hepatitis strand, so that doctors could monitor the effects of the virus when it was contracted at a young age.
When the hospital reached well above capacity in 1964 — housing 6,000 children in facilities only meant to hold 4,000 — Dr. Saul Krugman implemented the new program under U.S. Army contracts.
Newly admitted children were housed in a separate research ward if their parents agreed to let them partake in the medical experiment, according to the film and a government document from 1975 summarizing the testing process.
Parents essentially were told that their children would receive inadequate care, if any at all, unless they took part in the testing, because of the unsanitary conditions in the "regular" ward. The experimental ward, on the other hand, offered a better-equipped staff with more effective supplies as a result of the financial resources made available under the government program.
"They were blackmailing adults who needed help with their children," Cohen said. "It was a hotbed issue in New York."
The experiments were approved by the New York State Department of Mental Hygiene and allowed, in part, because the children already had a strong chance of contracting hepatitis in the hospital.
Krugman discovered there were two strains of hepatitis that had surfaced among patients in the hospital, and he was trying to create a vaccine to create immunity to the more damaging strand, according to documents on the subject.
Cohen, horrified by periodicals he found that essentially supported the child hepatitis studies, decided to create the exposé for a new generation who may not be familiar with the horrors of Willowbrook.
To drive the point home, he had children with varying disabilities appear in the movie for certain scenes. The kids were recruited through a Los Angeles drama program for developmentally disabled children.
"It adds a level of authenticity," Cohen said. "It was incredibly hard, and terrifying, but we didn't want anyone pretending."
Cohen researched the film extensively, traveling to Staten Island to see the old campus. He even found an old consent form for the experiments, which was used in the film.
His point, he says, was to honor the memory of parents and children who had to suffer because of an ethically questionable program approved by the government.
"The basis of medical interest is that you don't do any intentional harm," Cohen said. "This was wrong."
The film's trailer hit a chord with one person who commented on the Tribeca Film Festival website.
"Willowbrook is a place that we want to forget," said Happy life, who reported that a relative was at the institution. "[It's] more like a nightmare, on how patients were treated there.
"I don't know how [doctors] got away with the treatments they performed on patients that couldn't even speak for themselves."