One of the most tireless members of the parents' group is Lisa Van Syckel of New Jersey, whose daughter, 15-year-old Michelle, was put on Paxil after having been misdiagnosed in 2000 as anorexic and depressed. It turned out that Michelle had Lyme disease.
But while on the antidepressant, Michelle, who had never attempted to harm herself or others, slammed her brother's head into a wall, went after another teenager with a baseball bat and attempted to take her own life. Van Syckel came across Miller's drug awareness website in 2002, as she was trying to ease her daughter off Paxil. Soon she was spending most of her time trying to get someone in power to warn other parents of the dangers of antidepressants. Most political leaders ignored her letters; one exception was Sen. Charles E. Schumer (D-N.Y.), who asked her to join him at a news conference in New York calling on the FDA to discourage the use of Paxil by children.
Then she turned to her own congressman, Rep. Michael Ferguson (R-N.J.). Ferguson became a major force behind a House subcommittee's investigation of the safety of the antidepressants and the role of drug companies and the FDA. "It was [Van Syckel] who really got my attention and prompted me to take an active and leading role," Ferguson said. It was not easy, he said, to get members of Congress to focus on the issue during an election year, when the country was already absorbed by terrorism and the war in Iraq.
But, he said, "we need to investigate this particular issue and get to the bottom of why this is having such an enormous impact on our kids. That cause has been moved forward light-years because of the powerful personal stories of people like Lisa Van Syckel."
Pressure from the families and members of Congress helped prod the FDA to have its advisory committees assess data from clinical trials of children on antidepressants.
Even the drug companies were impressed. "The families had an impact on helping this to move forward," said Dr. Joseph Camardo, medical director for Wyeth Pharmaceuticals North America, which makes one of the popular antidepressants. "I thought it was a great example of how the public can and should be heard."
The families were gratified when the advisory panels recommended last week that the FDA put emphatic warnings on the drugs. Mark Miller, who launched the crusade seven years earlier, called it "a wonderful first step." He added: "I didn't think it would happen in my lifetime."
The parents will continue to press the FDA to extend the warnings to adults and to add a warning that the drugs cause some people to become hostile or even homicidal. They also want Congress to hold the FDA and the drug companies accountable for failing to warn people sooner.
"I can't bear to think of the lives that have been lost in the intervening years," Miller said.