Cuomo tries to make cannabis oil available for children suffering from rare disease

July 31, 2014

Gov. Andrew Cuomo sent a letter Wednesday to Acting State Health Commissioner Dr. Howard Zucker calling on the state Health Department to expedite the implementation of the Compassionate Care Act and make marijuana oil available for a specific subset of patients — children diagnosed with Dravet syndrome.

“Families with children struggling from epilepsy have fought for years for the passage of the Compassionate Care Act. Now that it is finally law, the children struggling with this condition deserve every consideration we can make that could potentially ease their pain and suffering,” Cuomo’s writes in his letter.

Dravet syndrome, also called severe myoclonic epilepsy of infancy, is an intractable seizure condition which causes seizures beginning in the first year of a child’s life. The seizures can be frequent and prolonged, and, in rare cases, can lead to status epilepticus — a persistent and potentially fatal brain seizure requiring immediate emergency care.

According to the National Institute of Neurological Disorders and Stroke Web site, Dravet syndrome can impair language and motor skill development, depending on the frequency of the seizures, and cause hyperactivity. Teenagers and young adults with the condition are often reliant on parents or other health professionals for care.

	THC oil

The governor’s letter was prompted by the deaths of 9-year-old Anna Conte and 3-year-old Olivia Marie Newton – two western New York children who suffered from frequent seizures – earlier this month.

Cuomo urged Commissioner Zucker to act quickly and judiciously: “Striking the right balance to ensure public safety and public health are protected is crucial. That said, I ask that you review the eighteen month implementation timeline to determine if there is any way to accelerate the process for this specific dire population.”

Health Committee Chair Sen. Kemp Hannon, R-Garden City, applauded the governor for his action and echoed his call for expediency.

“I do not believe that we need to wait 18 months for the recently enacted medical marijuana statute nor should we,” Hannon said Wednesday. “Families with children suffering from Dravet syndrome tell me they see incredible relief from this oil. These families shouldn’t have to wait any longer.”

There is anecdotal evidence of the therapeutic benefits of marijuana oil with a high concentration of cannabidiol — a cannabinoid that does not produce the intoxicating effects of tetrahydrocannabinol, the primary psychoactive agency in marijuana — for patients with seizure conditions.

GW Pharmaceuticals, a company based in the UK whose “lead program is the development of a portfolio of cannabinoid prescription medicine,” according to their Web site, is currently developing a drug containing CBD called Epidiolex, a drug specifically meant to treat Dravet syndrome. The FDA has approved the drug for clinical trials. GW hopes that with more research CBD could be used to treat a wide spectrum of epilepsy disorders.

There is concern, however, that CBD oil may not be included in the acceptable forms of the drug permitted by medical marijuana legislation. In Februrary, Sen. Hannon sent letters to former Health Commissioner Dr. Nirav Shah in response to his remarks at Feb. 3 hearing where Shah indicated marijuana oil may not be part of the department’s implementation program.

“It is imperative that you include this oil among the allowable medical marijuana options available as you work to establish a limited medical marijuana option for New York State,” a Feb. 24 letter reads.

“The FDA has approved the study of CBD as an anti-seizure medication and, in fact, NYU has a clinical trial which is benefitting a small group of children. It is my understanding that CBD is a non-psychoactive component of marijuana and the high CBD oils actually contain very low levels of the psychoactive ingredient THC,” Hannon continues.

The Legislature passed the Compassionate Care Act on Jun. 20, the last day of the 2014 legislative session, and was signed by Cuomo on Jul. 5. This was not the first the state passed medical marijuana legislation however as a similar bill was drafted, passed and signed into law by former Gov. Hugh Carey in 1980. Called the Antonio G. Olivieri Controlled Substance Therapeutic Research Program, the bill allowed hospitals to prescribe marijuana to patients with cancer and glaucoma. The Carey administration never implemented the program.

Antonio Olivieri, for whom the bill is named, was the leading advocate for this legislation. A former assembly and New York City council from Manhattan, Olivieri lobbied strongly for the law as he was being treated for brain cancer at the time. He touted the nausea-relieving effects of marijuana and its ability to mitigate some of the harsher side effects of chemotherapy. He died in 1980 at age 39.

While the current health commissioner’s stance is unclear, Sen. Hannon continues to advocate the medical use of marijuana oil, a cause bolstered by the governor’s endorsement.

“I continue to believe CBD oil can legally be made available in New York under the existing authority, and I urge the Department of Health to do so as soon as possible,” Hannon said.

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Cuomo tries to make cannabis oil available for children suffering from rare disease