The anguished mother of a Brooklyn boy claims she was fooled into letting her 6-year-old son participate in a controversial drug experiment that targeted minority children.
Charisse Johnson said doctors told her in 1993 that the controversial drug Fenfluramine would not have long-lasting effects on her son, Isaac.
But since the study, she said, he’s gone from being a quiet kid to being aggressiveand prone to angry outbursts, and he suffers from headaches and hyperventilates when he tries to run or play.
She claims she also was not told that the study was targeting only black and Hispanic children.
Johnson, 43, said she learned of the potential side effects of the now-banned drug and the racial profiling of the study by reading The Post.
“I felt hurt, very hurt,” she said as she clutched Isaac, now 12, in their lawyer’s Brooklyn office.
“I felt used, and it made me feel ignorant that, at the time, I didn’t catch on to what they were doing.”
Johnson’s saga began with a January 1993 letter sent to her home about a study involving younger siblings of juvenile delinquents.
The letter piqued her curiosity because her then 16-year-old son had been convicted of robbery as a juvenile.
What she didn’t know was that in December 1992, Family Court officials had given confidential probation records for more than 100 black and Hispanic juveniles to the state Psychiatric Institute and Columbia-Presbyterian Medical Center.
After assurances from doctors that Fenfluramine was safe and would have no long-lasting side effects on Isaac, Johnson said, she agreed to let him join the study in hopes her cooperation would help her jailed son.
“I thought I was helping my child who was incarcerated,” she said. “That’s why I did it.”
After a battery of physical and psychological tests, Isaac was given one 60 mg dose of Fenfluramine orally and confined to a bed for more than five hours while blood was drawn about every hour.
For four years afterward, Isaac regularly returned to Columbia-Presbyterian for examinations to see what long-term effect, if any, the drug had.
Fenfluramine, an appetite suppressant, was taken off the market in September 1997 because those who took it developed heart-valve problems and hypertension.
She noted that Isaac’s angry outbursts and headaches developed after the experiment.
“My son was never like this before,” Johnson said. “He remembers it, and he gets angry. He wants to know why anyone would give him something that could hurt him.”
Earlier this month, Johnson filed a $60 million suit against the city, the state Psychiatric Institute and Columbia-Presbyterian alleging racial discrimination and a breach of confidentiality over the release of her elder son’s records.
Court records attached to the suit provide a glimpse into the controversial study first exposed in a Post series that revealed inner city kids were used as guinea pigs.
A protocol for the 1993 study noted it was designed to target black and Hispanic boys from six to 10 years old, and was set up to explore children at high risk for “antisocial and aggressive disorders,” court records show.
The protocol also revealed Bronx probation officials were to discuss the program with “appropriate families, during their own scheduled initial family contact,” and the phone numbers of potential recruits were to be passed along to researchers, records show.
Participants were given $50 for psychiatric tests, an EKG and a physical, another $50 for an MRI, $50 for the “Fenfluramine Challenge,” and $25 for transportation.
At the time, the federal Food and Drug Administration had not approved the drug for use in children under 12, the complaint charged.
Johnson fears the drug experiment may have yet-unseen effects on Isaac and decried race-based studies.
“They have to stop targeting minority children,” Johnson said. “This kind of testing is not going to help these children at all.”
Spokesmen for the state Psychiatric Institute and Columbia-Presbyterian declined comment.
This is the latest article in an ongoing Post investigation of drug experiments on the mentally and disabled at state-run facilities. Earlier stories have revealed that the New York State Psychiatric Institute conducted tests of Prozac on kids as young as 6 without fully informing parents or guardians of the dangers. The stories also revealed that pharmaceutical giants are lining the pockets of state psychiatrists and researchers who experiment on the mentally ill.