In the minds of qualified patients, medicinal cannabis may mean life or death
Every time he has a seizure, it could be leading into the ones that don’t stop. We never know.
In the middle of Missy Miller’s Atlantic Beach living room lays a massive mesh playpen. A Goofy, Baby Bop and plethora of other generic, colorful plush characters liter the blue mat inside. Chewing on a blue and green teether rings, Oliver Miller lays on his back wiggling his legs in the air.
The teenager goes to school every day kissing his mother goodbye, hates math class, and even has a girlfriend, Jessica.
But, Oliver is very unique. That’s how Missy, his mother, summarizes his long list of diagnoses including epilepsy, which is how he became the “Boy Who Helped Legalize Medical Marijuana in New York” in 2014.
Even though the passing of the bill made medical marijuana legal, the program will not be accessible until 2016. Oliver and the DOH’s approximate 180,000 other New Yorkers with epilepsy await access to medicine that has been anecdotally recognized for alleviating their life-threatening symptoms while suffering from daily seizures.
“Every time he has a seizure, it could be leading into the ones that don’t stop,” Missy said. “We never know.
“If Governor Cuomo had a niece, a nephew, if one of his children had these seizures that weren’t responding [to available pharmaceuticals], it would be a nonissue. [Expedited use] would have never been taken out of the bill.”
It’s not about compassion. It’s not the compassionate care act because if it were, they would have legalized it quicker.
On April 28, 2015, Missy along with a group of advocates and families implored legislators to sign a bill introduced by Assemblyman Anthony Brindisi to hasten accessibility to medical marijuana for patients with a “progressive and degenerative” condition at the state Capitol.
Twelve-year-old Doose Syndrome, a rare form of epilepsy, patient Mackenzie Kulaway of New York Mills accessorized her pink polka dot dress with a pink helmet covered in colorful stickers. She told the audience encircling her outside the Assembly Chamber entrance she wishes she didn’t have to wear it at all.
“Why can’t we give our kids the chance to go to school, ride a bike, play sports, and even the simplest thing — shower by themselves,” her sister, Kaitlyn, 14, asked as her voice gave way to choking back tears.
Brindisi said, “Since the last time I met with Mackenzie last year, her condition has worsened. Patients like Mackenzie are suffering needlessly because of some bureaucratic hurdles.”
Lori Rutter of Angola, N.Y. said, “It’s not about compassion. It’s not the compassionate care act because if it were, they would have legalized it quicker.”
Rutter, 50, was diagnosed with multiple sclerosis 18 years ago. The disease caused her immune system to eat away her nerves in her legs specifically making her dependent on her wheelchair.
MS and epilepsy are two of the severe, debilitating or life-threatening conditions eligible for medical marijuana. Others are cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, spinal cord injury with spasticity, inflammatory bowel disease, neuropathy, and Huntington’s disease with Alzheimer’s disease, muscular dystrophy, dystonia, posttraumatic stress disorder and rheumatoid arthritis on the table at the discretion of the Commissioner of Health. The Commissioner also has the authority to add other qualifying conditions.
In the current state of limbo, there a lot of unanswered questions.
“Patients who come us what to know everything,” Melissa Meyer, who founded HealthMJ to provide information for patients on health and marijuana, said. “They want to know how much they take, when do they take it, where can they get it, can they get it legally in the state, should they smoke it, should they eat it, should they rub it on the tumor directly, does it help with nausea, does it help gain their appetite back, does it help with their cancer related depression. They want to know all things because they’re sick, they’re curious and they’re motivated and open-minded to learn everything they can about every possible treatment option.”
Meyer organizes a monthly Meetup, “Cancer, Cannabis and Conversation,” as an open forum to help patients feel comfortable discussing marijuana as a medically viable treatment.
“If you’re raised with ‘just say no to drugs,’ there’s so much stigma attached to it that it’s embarrassing to ask for,” Meyer said. “You see ads on television telling you that marijuana makes you into a brainless monkey, that it’s a gateway drug, only criminals do it. It’s hard to undo 50 years of that education.”
Those patients who do meet state conditions and want this medicine are ones desperately seeking any possible treatment as they fight for their lives. Cannabis is not a new plant. Robert Deitch notes in Hemp: American History Revisited: The Plant with a Divided History that as far back as 2900 B.C. ancient China, Ma, the Chinese word for cannabis, was very popular medicine that possessed both yin and yang. And although there is a very limited amount of research and clinical trials in cannabis care to today’s standard of medicine, those patients look at medicine derived from marijuana as their last hope for easing the pain.
It’s about quality of life for as long as they have.