New York – Anna Conte, a nine year old from Orchard Park, NY who passed away last week after falling into a coma following a severe seizure, was laid to rest today. Anna suffered from Dravet Syndrome, a life-threatening seizure disorder that has been treated with medical marijuana in states where it is legal. Medical marijuana has dramatically reduced the number of seizures in many children with similar seizure disorders.
In an effort to help their daughter, the Conte family joined the successful fight to pass a medical marijuana bill in New York. The Contes travelled repeatedly to Albany, persuading several powerful New York senators to support the bill and generating thousands of phone calls and emails to Albany leadership. Advocates around the state came to know and love Anna and her family and admire their selfless advocacy which was always accompanied with a sense of humor.
Tragically, Anna Conte did not live long enough to benefit from the law that her family helped pass. Governor Cuomo, who signed the bill into law just days before Anna’s passing, has said that it will take eighteen months or longer for New York to implement the law and develop the full medical marijuana patient access system. Families and advocates are urgently calling upon Governor Cuomo to take immediate action establishing expedited access to medical marijuana for those patients and families, like the Conte’s, who cannot wait until the full system is up and running.
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Statement from Julie Netherland of the Drug Policy Alliance:
“We are deeply saddened by the death of Anna Conte and two other New York children with severe seizure disorders who have died since New York’s medical marijuana bill was signed into law. Anna and her family played a central role in passing New York’s medical marijuana law. Our hearts go out to the Conte’s and the other patients and families during this time of tragedy. Part of Anna’s legacy is having changed history to benefit thousands of seriously ill New Yorkers.
These deaths have made even clearer what we already knew – the eighteen month or longer timeline for implementing New York’s recently passed medical marijuana law is simply too long for some patients who face life-threatening or terminal illnesses. These patients and their caregivers, including the parents of children with severe seizure disorders, have been at the forefront of the fight to create safe and legal access to medical marijuana. In fact, at the bill signing ceremony, Governor Cuomo stood with a young girl who suffers from Dravet Syndrome, the same life-threatening seizure disorder that tragically took Anna Conte’s life.
Unfortunately, several more children are likely to die waiting for New York to implement its medical marijuana program. 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. Because implementation of the full medical marijuana patient access system will take 18 months, Governor Cuomo and leaders in Albany must work swiftly to establish a temporary emergency program for expediting access to medical marijuana for those with life-threatening or terminal illnesses. By establishing a temporary, interim emergency access program, patients with life-threatening or terminal illnesses won’t have to wait 18 months or longer for the full system to come online. We can immediately save lives and ease suffering at the end of life by establishing emergency, expedited access. New York cannot stand by while more people die needlessly.”