NEW YORK — Drug reform advocates across New York state are demanding emergency access to medical marijuana for critically ill patients after a 9-year-old girl who suffered from debilitating seizures died last week due to complications with her disorder.
Anna Conte, the child whose family has been at the center of New York’s medical marijuana debate for months, had a rare condition called Dravet Syndrome that caused her to experience as many as hundreds of crippling seizures every day. Children with similar conditions have successfully treated their symptoms with cannabis in states that have legalized the drug for medicinal use.
New York lawmakers passed a medical marijuana bill last month, but the law won’t go into effect for another year and a half. Since its passage, two other children with seizure disorders similar to Conte’s have also died. Advocates say these tragedies exemplify the urgent need to implement the law, and are pressuring legislators to speed up the process so terminally ill patients will be able to access medical cannabis sooner than 18 months from now.
“Several more children are likely to die waiting for New York to implement its medical marijuana program,” Judy Netherland, a spokesperson for the Drug Policy Alliance, said in a statement Tuesday. “While not all of these deaths can be prevented by medical marijuana, we have a moral obligation to make this medicine available as soon as possible.”
New York’s medical marijuana law came to fruition after years of resistance from both conservative state lawmakers and Democratic Gov. Andrew Cuomo. Conte’s mother, Wendy, repeatedly lobbied legislators on behalf of her daughter, and her family’s story is largely credited for ultimately getting the bill to pass.
“Her courage, and the courage of her family, directly led to my sponsorship of legalized medical marijuana in New York,” said State Sen. Mark Grisanti (R-Buffalo), one of the first Republican lawmakers to publicly support the medical cannabis bill, in a statement following Conte’s passing. “She was a courageous little girl, who suffered as no child ever should.”
Strains of medical marijuana that are high in cannabidiol, a non-psychoactive ingredient that doesn’t cause users to feel “high,” have proven extremely effective in treating seizure disorders. Rather than smoking, patients ingest the drug in pill or liquid form, making it accessible for young people.
As a result, families are flocking to states like Colorado, where a special strain of cannabis known as “Charlotte’s Web” has been used successfully by hundreds of children, and California, where kids are experiencing the benefits of similar treatments. (Conte’s own family had been in the process of relocating to Colorado from Buffalo, New York, before New York’s medical marijuana bill passed.)
Doctors who have used high-cannabidiol medical marijuana on their young patients have marveled at the drug’s efficacy. “It’s completely remarkable,” Colorado-based Dr. Margaret Gedde told The Huffington Post earlier this year.
One of Gedde’s patients, 10-year-old Zaki Jackson, used to endure thousands of seizures every day. He had been prescribed 17 different pharmaceutical medications, which caused side effects like weight gain and insomnia but failed to stop the seizures. He then tried the “Charlotte’s Web” strain of cannabis, and has been seizure-free since beginning his medical marijuana treatment more than a year ago.
“He’s now able to start developing as a normal child. He’s a delightful, charming kid,” Gedde said. “Before that he couldn’t even be in contact with people. It was a dramatic, complete change.”
Success stories like Jackson’s have inspired other states to follow suit. In recent months, similar efforts have gained momentum even in conservative states: Georgia is exploring using medical marijuana in clinical trials to treat seizure disorders, and Florida passed a limited-access cannabis law earlier this month.
Through her grief, Wendy Conte vows to continue to fight on behalf of other sick children in New York, joining Judy Netherland’s call for lawmakers to establish an emergency access program for patients with chronic conditions.
“They can figure out a way to get this done,” she told the Buffalo News. “If they truly want to help these children, they’ll find a way.”
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