On the one year anniversary of the signing of New York's medical marijuana law, patients and families gathered in front of Governor Cuomo's New York City Office to urge him to sign a new bill to expedite access to medical marijuana for critically ill patients. Since the medical marijuana law passed a year ago, not one patient in New York has been able to access medical marijuana, and at least four children, who could have likely benefited from it, have died while waiting to obtain this much-needed medicine.
Assembly Health Committee chair Richard N. Gottfried, sponsor of last year's medical marijuana legislation, said: "It's a year and a half since Governor Cuomo announced in the State of the State message that he would re-activate the 1980 Olivieri Law to make medical marijuana available to patients in need, and a year since he signed the Compassionate Care Act. In July 2014, he wrote to Health Commissioner Zucker about 'the urgent help children with epilepsy desperately need,' and said 'I look forward to hearing of any progress you can make to provide relief to the children of our state living with epilepsy.' New York has the legal tools, but seems to lack the political will of other states, like Georgia, Alabama and Utah, which have figured it out. We have seen no evidence of progress in New York. That's unconscionable."
Since last July, advocates have been pressuring the Cuomo Administration to create an interim emergency access program for patients who may not survive the eighteen months or longer that the Governor has said he needs to get the full medical marijuana program up and running. According the Department of Health, the earliest the program would be operational is January 2016.
"As a New York psychiatrist who has evaluated epileptic children from New Jersey, I have seen medical marijuana reduce seizures in some cases from 100 per day to just one per week," said Dr. Richard Carlton of Long Island. "Patients in New York need access to this medicine right away. Three NY children with epilepsy have already died in the interim since the original NY State bill was signed into law. Every day we wait is a day that we put more patients at risk. It's time for Governor Cuomo to step up and sign the new bill for emergency access into law."
The original version of New York's medical marijuana bill included a provision to provide emergency access to medical marijuana for those patients too ill to wait for the full program to become operational. The Governor's Office had that provision removed during bill negotiations, leaving critically ill patients vulnerable. Just days after the bill was signed into law, two children, who would have likely benefited from medical marijuana, died from their seizure disorders. Two additional children, whose families helped lobby for the bill, have since died - one from seizures and another brain cancer.
"We worked to pass the original medical marijuana bill to help our son Antonio, who suffered from life-threatening seizures," said Mary Tallarico of Niagara. "Tragically for us, Tony died in May, almost a full year after the medical marijuana bill was passed, and yet he never had the opportunity to try it. We are begging Governor Cuomo to sign the emergency access bill so other families don't have to suffer the kind of loss we have."
"When my daughter Amanda stood next to Governor Cuomo last year at the bill signing, I truly believed that the Governor wanted to help my daughter," said Maryanne Houser of Suffern, whose daughter Amanda has Dravet's syndrome, a severe seizure disorder. "A year later, Amanda has no access to medical marijuana nor does any other patient in New York. It's time for the Governor to act; it's time for him to create an emergency access program."
"My son Oliver deals with devastating seizures every day, and he should be able to try a medicine that is helping children like him in other parts of the country," said Missy Miller of Atlantic Beach. "After months of begging the Governor's office to take some kind of action and listening to excuse after excuse as to why they could not, we went to the legislature, and they passed the emergency access bill with huge bipartisan support. The truth is, this emergency access provision should never have been removed from the original bill, and my child should not still be suffering every day! Republicans and Democrats alike understand that children, like my son, Oliver, cannot keep waiting. Now we need Governor Cuomo to finally step up!! Stop delaying and sign this bill."
In June, with overwhelming bipartisan support, both houses of the legislature passed A.7060 (Gottfried) / S.5086 (Griffo), a bill that would direct the state to establish a program to help critically ill patients obtain emergency access to medical marijuana as soon as possible. It also instructs the state to issue patient cards to critically ill patients who qualify as soon as possible making it clear that they are medical marijuana patients and affording them some protection from law enforcement and child protective services.
"I was thrilled when the legislature passed the emergency access bill, "said Beverly McClain of New York City. "As a terminal cancer patient, I don't have much time left, but I know that medical marijuana can help people like me better tolerate life-saving treatments and improve the quality of our remaining days. I urge Governor Cuomo to provide emergency access. People need this medicine, and they need it now."
Recently, Governor Nathan Deal of Georgia swiftly signed a medical marijuana law to help children with severe epilepsy and announced the system should be up and running in 30 to 60 days. He went further and issued temporary patient cards to several families who had moved to other states as they awaited action so that they could return home without fear of being prosecuted.
"States across the country have taken action to get medical marijuana to their neediest patients," said Elaine Smith of Phelps whose daughter Emma suffers from a severe seizure disorder. "Given that other governors have taken action, I simply cannot understand why Governor Cuomo refuses to do so. Now the legislature has handed him a solution. It's time for him to show some mercy and compassion and sign this bill or come up with some other way to get medicine to those who so desperately need it."
Currently, those with terminal or critical illnesses and their families are forced to break the law, move to a state where medical marijuana is legally available, or watch their loved ones suffer knowing that there is a medication that could help them.
"Families and patients have called for emergency access for over a year, and now the vast majority of our elected officials from both sides of the aisle have demanded it by passing the emergency access bill," said Julie Netherland, deputy state director, New York of the Drug Policy Alliance. "How many children have to die before the Governor will take action? Kids keep dying while Governor Cuomo stalls. The latest tragic death was that of ten-year-old Antonio Tallarico. Governor Cuomo needs listen to New Yorkers and take action before more patients needlessly die."