Abandoned by Cuomo, Families Turn to Legislature to Pass a Bipartisan Bill
Bill Would Create Emergency Access Program to Provide Relief to Critically Ill Patients, including Children with Epilepsy
Albany– Patients, family members, and advocates stood with legislators from both sides of the aisle today in support of 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. The bill, introduced by Assembly Health Committee Chair Richard N. Gottfried and Assembly Minority Leader Brian M. Kolb in the Assembly and Senator Joseph Griffo in the Senate, comes almost exactly a year after the legislature passed New York’s medical marijuana bill and almost ten 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 four children, who might have benefitted from medical marijuana, have died since the bill was passed.
“The Governor announced in January 2014 that he was reactivating the 1980 Olivieri medical marijuana ‘research’ program, and 17 months later nothing has come of it,” said Assembly Health Committee Chair Richard N. Gottfried, sponsor of the bill. “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.”
“We have a responsibility to deliver immediate and necessary relief to patients suffering from unbearable pain and illness,” bill co-sponsor and Assembly Minority Leader Brian Kolb said. “Children and families deserve every effort to get life-saving remedies now, rather than wait for the wheels of government to turn. Implementing the state’s medical marijuana program is a complicated process that will take time. Patients in pain should not be forced to wait for help they can access today.”
The Assembly is expected to vote on and pass the bill with bipartisan support later today. Patients and families now look to the Senate to take action.
Senator Joseph Griffo, sponsor of the bill in the Senate, noted: “We cannot continue to allow critically ill children like Mackenzie to suffer any longer if we have the ability to offer them relief from their life-threatening conditions. At least four children have died waiting for access to medical marijuana since the Legislature passed the Compassionate Care Act last year, so I believe we have an obligation to ensure that no other child’s life is put at further risk by delaying treatment that could lessen their pain. I have sponsored legislation that would expedite access to medical marijuana for those patients in urgent need of relief in accordance with the law, and I strongly urge my colleagues in the Senate to join me in taking action on behalf of Mackenzie and other children who desperately need this treatment.”
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. Applications for producers were just submitted last Friday, and the earliest the program would be operational is January 2016. The Gottfried/Griffo bill offers critically ill patients a ray of hope in the face of inaction by the Cuomo Administration.
"Our daughter, Mackenzie, suffers from seizures all the time that cause serious injuries including bruises, chipped teeth and concussion. We are terrified that the next seizure could result in a fall that takes her life. Our entire family is constantly on guard. The healthcare, medications, and a severely restricted diet are not enough to control my daughter's seizures,” said Julie Kulaway, a nurse and mother of a child with epilepsy from Mills, New York. “We are grateful that Senator Griffo introduced the emergency medical marijuana access bill and hope that the rest of the Senate takes his lead to give our little girl a chance at a more normal life."
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 last year, 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.
In April, the Department of Health finalized extremely restrictive regulations for the medical marijuana program that could prevent patients from obtaining the treatment they need. Despite requests from hundreds of patients and families across the state requesting an emergency access program, the regulations contain no provisions for expediting access for those suffering from terminal or life-threatening illnesses.
"As a physician I know the medications prescribed to my son have dangerous side effects. We keep him on the drugs in an effort to control his seizures, and they don't always work,” said Dr. Amy Piperato of Thiells. “We deserve better options. Vincent and all of New York's children like him need emergency medical marijuana access now. We are calling on the New York State Senate for help."
Last July, under pressure from advocates, Governor Cuomo instructed Health Commissioner Zucker to expedite access to medical marijuana for children with severe epileptic disorders. But almost a year later, with no sign of progress from the Administration, families and patients are placing their faith in the legislature, hoping the Senate will pass the bill before the session ends on June 17th.
Rebecca Campo, a nurse and epilepsy patient from Staten Island said: "I am a nurse working with traumatic brain injury patients, and I am disabled by epilepsy. I am lucky to report that the medications I'm on right now are controlling my seizures, but I don't know how long that will last, and the side effects are devastating. I am pleading the New York State Senate takes action to help New Yorkers like me and many of my patients, whose lives are threatened as long as we are denied emergency medical marijuana access."
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.
The bill 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. 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. 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 several families who had moved to other states as they awaited action so that they could return home without fear of being prosecuted.
“Families and patients in New York are tired of legalistic and bureaucratic excuses from the Cuomo Administration, especially given the tragic deaths of at least four young children. The failure of the Cuomo Administration to act in the face of this kind of heartbreak and suffering is unconscionable,” said Julie Netherland, PhD, deputy state director at the Drug Policy Alliance. “We are pleased to see the Assembly taking leadership on this issue and hope the Senate will act quickly before it’s too late. Many of these patients simply cannot wait any longer for relief.”