Patients, family members and activists stood with legislators today as they announced the introduction of Assembly bill A.7060 that would direct the state to establish a program to help critically ill patients obtain emergency access to medical marijuana as soon as possible. The bill, introduced by Assembly Health Committee Chair Richard N. Gottfried and Assembly Minority Leader Brian M. Kolb, comes 298 days after Governor Cuomo signed the medical marijuana bill into law on July 5, and nine months after the Governor urged the Health Commissioner to do everything in his power to get medical marijuana to children suffering from life-threatening forms of epilepsy. To date, not one patient has received medical marijuana, and at least three children who might have benefitted from medical marijuana, have died since the bill was passed.
"This bill would create emergency access to medical marijuana for patients with the most urgent needs - including children suffering from severe epilepsy," said Assembly Health Committee Chair Richard N. Gottfried, sponsor of the original medical marijuana bill. "Assembly Minority Leader Brian Kolb and I introducing this bill shows the broad, bipartisan support for emergency access. It is good and compassionate public health policy. If ever there was a basis for emergency action, the suffering of these children is it."
"Thousands of patients in New York State deal with excruciating pain each day and simply can't wait for the wheels of government to turn. Bureaucracy should not stand in the way of relief for people suffering from debilitating illnesses and diseases," Assembly Minority Leader Brian Kolb said. "Assistance is well within reach. The Department of Health must be diligent in building the medical marijuana program, but that does not preclude the state from offering immediate assistance to people in dire need."
"The Governor announced in January 2014 that he was reactivating the 1980 Olivieri medical marijuana 'research' program, and 15 months later nothing has come of it," added Gottfried. "There are New Yorkers suffering right now whose lives could be made better by access to medical marijuana. If the Department of Health does not believe it can have the 2014 Compassionate Care Act system fully up and running before 2016, the least it can do is offer emergency relief to the patients who need it most."
On April 15, the Administration adopted final regulations for the medical marijuana program. It would make New York's program one of the most restrictive in the country and could inhibit patients from obtaining the relief they need. Those regulations did not include provisions for expediting access for those suffering from terminal or life-threatening illnesses.
"No parent should have to watch their child suffer and die while remaining powerless to help," said Nathan Nocera of Niagara Falls, father of Donella, who passed away at eight years-old in December due to an aggressive brain tumor. "Not a single day goes by without me thinking of Donnie and reliving the enormous hurt of her death. I am deeply grateful to the leadership of Assemblymen Gottfried and Kolb in taking action to make emergency medical marijuana access a reality in New York and bringing meaning to my daughter's life as well as her passing."
"As a four time cancer survivor, I know that there are people in critical need of accessing medical marijuana now," said Nancy Rivera of Troy. "I've come to know and love many of the children across the state suffering from severe forms of epilepsy. They and others simply cannot wait until next January for relief. In fact, we already lost some precious children since the bill was signed. I urge the legislature to move on this emergency access bill quickly so that no others die needlessly."
Although there were more than a thousand public comments on the draft regulations, many of them calling for emergency access for the sickest patients, the Administration made no substantive changes and rejected calls for emergency access. Instead, the Health Department says that patients must wait until at least January 2016 when they estimate that the program will be operational.
"Every day that my son Oliver has to wait to try medical marijuana is a day he loses ground due to the multiple seizures he endures daily," said Missy Miller of Atlantic Beach whose son Oliver suffers from life-threatening seizures. "It's been almost nine months since Governor Cuomo directed the Health Commissioner to do everything in his power to get children, like Oliver, access to medical marijuana, and, to date, not one child has been helped. Governor Cuomo himself asked to get this expedited for the children and it has not been done. WHY? Thankfully, Assemblymen Gottfried and Kolb are taking action and seeking creative solutions to insure that no more children suffer or die needlessly."
Since 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. The Gottfried/Kolb bill offers critically ill patients a ray of hope in the face of inaction by the Cuomo Administration.
"I've already outlived the median survival age for my cancer," said Beverly McClain of New York City, a stage four metastatic cancer patient. "I don't know how much longer I have, but I do know that medical marijuana could help me right now to better tolerate the treatments that are keeping me alive. I and other patients may not have until January 2016 when the state says the full program will be operational. We need access to medical marijuana now, which is why I'm so pleased that Assemblymen Gottfried and Kolb have introduced this bill."
"Families in New York are desperate for access," said Kate Hintz of North Salem whose daughter, Morgan, suffers from a treatment-resistant form of epilepsy. "While I'm thrilled that families in other states are finding relief, I continue to be frustrated by the inaction and lack of compassion in New York. I want to offer my thanks to Assemblymen Gottfried and Kolb for sponsoring this bill and urge the legislature to act without delay. The lives of our children depend on 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.
"I am grateful that Assemblymen Gottfried and Kolb have introduced legislation to create emergency access to medical marijuana," said Dr. Amy Piperato of Thiells. "As a mother of a child with a severe epileptic disorder, our family needs access to this medicine as soon as possible. As a physician, I know that there are patients across New York who cannot wait until the full program is up and running."
The bill, which passed the Assembly Health Committee today, would instruct the state to establish an emergency program for critically ill patients so that they can start receiving medical marijuana as quickly as possible. Frustrated with bureaucratic and legalistic excuses from the Cuomo Administration, families and patients are putting their hopes in the New York State legislature.
"When my daughter Amanda and I stood with Governor Cuomo at the bill signing for the medical marijuana law in July, we believed that he really wanted to help our family," said Maryanne Houser of Suffern. "More than nine months later, Amanda and other children who need medical cannabis to treat their seizures still don't have access. I urge the legislature to move swiftly to pass this bill before our children lose even more ground, or God forbid, another child dies."
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 the next 30 to 60 days. He went further and issued temporary patient cards to seven families who had moved to other states as they awaited action so that they could return home without fear of being prosecuted.
"The failure of the Cuomo Administration to act in the face of the suffering of the terminally and critically ill and the deaths of at least three young children is unconscionable," said Julie Netherland, PhD, deputy state director at the Drug Policy Alliance. "It's heartening to see Assemblymen Gottfried and Kolb taking steps to help these patients. I hope that Assembly and Senate will move quickly to pass this bill so that the patients who so desperately need this medication can get it."