Friday, Dec. 19: One Week After Death of Eight Year Old Donella Nocero, Patients and Caregivers to Rally Outside Governor Cuomo’s NYC Office to Demand Emergency Access to Medical Marijuana
New York –(ENEWSPF)—December 18, 2014. Today, the NY Department of Health released the draft regulations for the medical marijuana program. While full analysis of the regulations is still underway, an initial review suggests New York will be one of the more restrictive programs in the country, which could inhibit patients from obtaining the relief they need. For instance, the draft regulations restrict the number of brands of medical marijuana to five initially without any clear rationale. There are dozens of therapeutic strains of medical cannabis, each having benefits for particular conditions. Had such a restriction been in place in a state like Colorado, it very well may have prevented the development of marijuana strains beneficial to some children with epilepsy. Such a provision could prove to be a deterrent to industry groups. Patients and doctors deserve the flexibility to find which medicine works best.
Absent from the draft regulations is any provision for emergency access to marijuana for those patients who cannot wait for the system to come online in January 2016. Patients, family members and activists will gather outside Governor Cuomo’s New York City Office tomorrow to urge the Governor to establish an emergency access program for medical marijuana.
The rally comes one week after the death of Donnella Nocero, an eight-year old with brain cancer, who could have benefited from medical marijuana. Several other children, who had life-threatening seizures that could have been treated with medical marijuana, have died since the bill was signed into law in July. Since July, advocates have pressured 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.
As part of a campaign known as #MyHolidayWish, families and patients are asking Governor Cuomo to show mercy and grant their holiday wish of emergency access to medical marijuana to stop the suffering and save the lives of their loved ones. Currently, these 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. Patients and families will joined by HIV/AIDS activists, who understand too well the deadly cost of delaying access to potentially life-saving medication.
New York passed a medical marijuana bill that Governor Cuomo signed into law in July, but the Administration has said the program won’t be up and running until at least January of 2016. In July, Governor Cuomo issued a letter to the Acting Health Commissioner Dr. Howard Zucker urging him to do everything possible to expedite access to medical marijuana for children with treatment-resistant epilepsy. More than 140 days later, the Administration has made little progress in finding a solution, and no patients have yet received emergency access. Draft regulations, released today, contain no provision for emergency access.
The Compassionate Care NY Rally and Press Conference will take place on Friday, December 19 at 11:00 AM, at 633 Third Ave., New York NY.
Families and Patients participating include:
Maryanne Houser and her daughter Amanda from Suffern, NY. Amanda, who suffers from Dravet’s syndrome, a severe form of intractable epilepsy, stood next to Governor Cuomo when he signed the medical marijuana bill into law.
Missy Miller, her daughter Katy, and her son Oliver from Atlantic Beach. Oliver, who suffered a stroke in utero, has a severe seizure disorder.
Amy Piperato, MD, from Thiells. Dr. Piperato is physician and parent to a child with Dravet’s syndrome.
Roza and Tariq Kessaci from Scarsdale, whose sister Mellina needs emergency access to medical marijuana to control her life-threatening seizures.
Wanda Hernandez, Leader from VOCAL New York and person living with HIV/AIDS.
For months, patients and caregivers have been asking Governor Cuomo to take action to grant emergency access to critically and terminally ill New Yorkers. In a letter to Acting Commissioner Zucker in late July, Cuomo himself acknowledged the need to expedite access to children with treatment-resistant epilepsy. While the Administration has suggested that a very limited number children may be eligible for medicine through a pilot program, hundreds more children and other critically ill patients will continue to suffer. Some will die needlessly.
The Governor has several options for helping these critically ill patients. More than one company has said that they could get medical marijuana into the hands of the neediest patients within 90 days. The Administration could work with these companies, fast-tracking a producer in New York. The Cuomo Administration could also offer patients who acquire medical cannabis from other states assurances that they will not be arrested or penalized for using medical marijuana to try and save their or their love one’s life. They could use their considerable resources, power and talents to come up with other creative ideas to help save lives.
Frustrated with bureaucratic delays, patients and family members are asking Cuomo to use his authority to insure that no more families, who could be helped by medical marijuana, spend the holidays worrying about the death of a child or loved one.
Channel 4, WIVB
Niagara Falls girl loses battle to cancer, Al Vaughters, December 12, 2014, http://wivb.com/2014/12/12/niagara-falls-girl-loses-battle-to-cancer/
Donella Nocera loses cancer fight amid medical marijuana struggle, Aaron Besecker, December 12, 2014, http://www.buffalonews.com/city-region/niagara-falls/donella-nocera-loses-cancer-fight-amid-medical-marijuana-struggle-20141212
Channel 2, WGRB
Family Grieving Loss of Little Girl, December 14, 2014, http://www.wgrz.com/story/news/local/niagara-county/2014/12/13/girl-dies-while-family-awaits-medical-marijuana-treatment/20377639/