Patients with serious health conditions, including children with a severe seizure disorder, came to the state Capitol to urge passage of a bill to better allow access to medical marijuana in New York.
Kate Hinz is one of dozens of people who came to the Capitol on the first formal day of session to lobby for the bill to allow medical marijuana in New York as a treatment for a variety of medical conditions. Her daughter Morgan has Dravet’s syndrome, a rare form of epilepsy that is incurable and very difficult to treat with conventional drugs.
Hinz says Morgan recently turned three years old, but instead of a birthday party she suffered from five seizures that day, despite the fact that she is on 12 different prescription medications and supplements. Morgan cannot speak or walk and has a feeding tube.
“I wonder if you have any idea of the pain and suffering my child has faced in her short lifetime?” Hinz asked, fighting back tears as she described her daughter’s frequent convulsions that have left the child near death at times. “It is an experience that you never recover from.”
Some studies have shown that a refined form of medical marijuana can improve the quality of life for children with Dravet’s syndrome.
In his recent State of the State message, Gov. Andrew Cuomo said he would revive a 1980 statute that would permit limited use of medical marijuana to patients with diseases like cancer and glaucoma.
Assemblyman Richard Gottfried, the sponsor of a wider medical marijuana bill in the Assembly, says the governor’s plan would not help children like Morgan, because it would not permit specialized strains of cannabis to be used.
“The product that is available under the 1980 law is basically garden variety dried leaves,” Gottfried said.
He says children with Dravet’s syndrome need an oil extract of a specific strain that does not contain THC, which is the component in marijuana responsible for most of the drug’s psychological effects.
Under the provisions of the 1980 law, Gottfried says hospitals that might administer the drug can obtain it only from a federal growing program which is now defunct, or from police drug busts.
“The police aren’t seizing that kind of marijuana," Gottfried said. "Nobody would want to buy that kind of marijuana unless you are using it for medical purposes.”
He says the 1980 law also lacks provisions for modern state of the art production.
Gottfried, who is chairman of the Assembly Health Committee, says the bill will be voted on in the committee Tuesday, and he expects it to pass.
Its future in the state Senate is not as certain. Senate sponsor Diane Savino, says while there’s significant support, no one party holds a majority of yes votes on the issue, and advocates still need to build momentum. Savino is a member of the Independent Democratic Conference, which runs the Senate in a coalition with Republicans. Both factions need to agree in order to put any bill up for a vote on the floor.
“The bill’s not ready,” Savino said. “When it’s ready it will come to the floor.”
Assembly Speaker Sheldon Silver, who calls Cuomo’s plan to offer limited marijuana a foot in the door, says some lawmakers may now want to wait to see how the governor’s program works before acting on any new legislation on medical marijuana.
“They’ll say let’s see how this works, who it impacts, who it doesn’t impact,” Silver said.
But Silver concedes that further legislation is probably necessary.
Patient advocates say Cuomo’s aides told them the governor would consider the Gottfried-Savino bill to permit wider use of medical marijuana if it were passed by both houses of the legislature and came to his desk.