Today isn’t a great day for Morgan Jones. On good days, you can find the 5-year-old girl beaming her infectious smile. That smile glows when her mother, Kathryn Hintz, tickles her; it’s there when listening to music, especially while riding in the car. If her mother sings along with her, the smile widens.
But today, an ear infection has Morgan a bit crabby. Her nurse, Annette Ortiz, reclines on a couch in the family’s bucolic North Salem home, gently rocking Morgan. Hintz sits opposite the pair, talking in a smooth voice to comfort Morgan. The mother and daughter share a host of similarities. Hintz often flashes the same room-brightening smile. They both have captivatingly blue eyes. A flock of light, curly hair crowns both of their heads.
More important, though, is what they don’t share: a deletion on Morgan’s second chromosome, a rare genetic condition caused by the loss of material from one of the body’s 46 chromosomes. That statistically near-impossible deletion has led to a hurricane of health problems, none more complicated than Dravet syndrome. This incredibly rare form of intractable epilepsy—meaning it can’t be controlled with medication—subjects Morgan to several seizures a day, ranging from short head-drops or blinks to convulsive, turning-blue seizures.
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Morgan Jones (standing), a 5-year-old from North Salem who suffers from a rare form of intractable epilepsy, has tried every FDA-approved medication to no avail. She is an ideal candidate for medical marijuana, according to her neurologist, Dr. Steven Wolf (seated).
Morgan started having seizures at 9 weeks old, experiencing up to 30 a day. “She would basically have a seizure, pass out for half an hour, wake up, wait five minutes, then have another seizure,” says Hintz. “It was terrible.” By the time Morgan was 2 years old, she had cycled through about a dozen different pharmaceuticals—including rescue drugs, which are basically huge doses of Valium used to stop seizures quickly, to prevent emergency situations. Those treatments, though, seemed to cause more harm than good, as Morgan developed new ailments, everything from kidney stones to ulcerative colitis. She even lost the ability to eat. “We got to the point where we weren’t sure how much benefit the drugs were giving us because they never controlled the seizures well, and then they were destroying the parts of her body that are good to begin with,” says Hintz.
That’s when Hintz found that Morgan might be the perfect candidate for another type of treatment: medical marijuana. “We heard about people being able to trial it safely, with hardly any side effects,” says Hintz. One of those families was that of Charlotte Figi, a young girl from Colorado also diagnosed with Dravet syndrome. After doctors exhausted their efforts to control her seizures, Charlotte’s mother decided to test her out on medical marijuana—a certain strain that was low in THC (the main psychoactive cannabinoid in marijuana) and high in CBD (another active cannabinoid in marijuana). The marijuana was so effective that Charlotte now only experiences seizures about two to three times a month.
Though Hintz says “those miraculous stories of the child never having another seizure are hard to come by,” cases like Charlotte’s gave her hope. “We were in a place with Morgan that we were starting to panic a little bit as parents,” she recalls. She began asking Morgan’s doctors about the possibility of medical marijuana. One of those doctors is Morgan’s neurologist, Steven Wolf, MD, director of Pediatric Epilepsy at Mt. Sinai Beth Israel Medical Center in Manhattan, who also has an office in Hartsdale. “We have tried every single FDA-approved medication out there, and she has not responded to any of those. So she would be a good candidate to try medical marijuana,” Wolf says.
Hintz has ridden that hope straight into the offices of countless New York lawmakers, lobbying for them to pass a bill that would allow her daughter the relief she seeks. “In the beginning, it was very, very hard telling a story to strangers that’s incredibly emotional,” says Hintz. “But somewhere along the line, I found a strength in that story.”
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One of the lawmakers Hintz met with was New York Assembly member Richard Gottfried (D-Manhattan). If anyone can commiserate with Hintz about the uphill battle of legalizing medical marijuana in New York, it’s him. Gottfried first introduced the Compassionate Care Act to legalize medical marijuana in 1997. It was a decade before the bill made it to the assembly floor for a vote. When the movement picked up steam, it passed the assembly nearly every year between 2007 and 2013, only to die in the senate. Gottfried persisted, though, and even negotiated details of a medical marijuana program with then-governor Eliot Spitzer, which the latter said he’d be open to signing into law. That was in 2008, the year Spitzer was swept out of office on the coattails of a sex scandal.
“It’s important that [the Compassionate Care Act] got enacted… but it’s unfortunate that it is so
—New York Assembly member Richard Gottfried (D-Manhattan)
When Governor Andrew Cuomo signed the bill into law, in July 2014, it should have been a win for Gottfried. Instead, by the time Cuomo enacted the Compassionate Care Act, the bill Gottfried originally introduced had morphed into one of the most restrictive medical marijuana bills in the country. The bill has acted as an ideological fence: Supporters believe that the bill’s restrictions provide a root system from which the industry can bud and flourish, while detractors argue the bill is nothing short of an herbicide ready to snuff out the medical marijuana system before it’s even up and running.
The law, which takes effect on January 5 of this year, makes persons eligible to use medical marijuana if they have been diagnosed with one of the following conditions: cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, multiple sclerosis, spinal cord injury with spasticity, epilepsy, inflammatory bowel disease, neuropathy, and Huntington’s disease. Patients who are certified by their practitioners as eligible must apply to the Department of Health to obtain a registry identification card, which they’ll need in order to obtain medical marijuana.
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The law also set the course to license five companies (which had to pay a nonrefundable $10,000 application fee, along with a $200,000 registration fee just to be in the running for a license) to grow and process medical marijuana in New York State. The companies must all produce five products that will differ in concentration of certain cannabinoids. (Each registered organization must offer one brand that has a low-THC and high-CBD content, and one brand that has approximately equal amounts of THC and CBD; those products must also undergo independent laboratory testing for contaminants and to ensure product consistency.) The smoking of marijuana is still illegal, as the medications are required to be in either oil or capsule form. The bill also allows the five licensed companies to each establish four dispensaries throughout the state.
All of those points were at the behest of Governor Cuomo. “I never had a good sense of why [these restrictions] were important to the governor,” says Gottfried. (The governor’s office did not respond to our requests for comment. The New York State Department of Health responded by referring us to an FAQ page on its website.) Gottfried takes particular exception to the fact the bill requires the same company to both manufacture and dispense the products. “I can’t think of any law in this country where we require the manufacturer and the retailer to be one entity,” he says. “There are companies that are very good at running a greenhouse that wouldn’t know the first thing about running a dispensary, and vise versa.”
New York Assembly member Richard Gottfried first introduced the Compassionate Care Act to legalize medical marijuana in 1997. Though he celebrated when the legislation finally passed in 2014 (seen above), he feels the law doesn’t go far enough. Gottfried plans to introduce new legislation to roll back some of the current restrictions.
If you take a careful read through the bill, you’ll see just how deep the restrictions go. For instance, the law implements stringent security measures for all dispensaries, requiring anyone who enters the locations to have prior written consent from the Department of Health. This includes any repairmen or service personnel, as well as the children of any patients. Furthermore, patients are not allowed to eat or drink inside a dispensary unless “necessary for medical reasons.”
“It’s important that [the Compassionate Care Act] got enacted,” says Gottfried. “It will bring needed, and in many cases lifesaving, relief to tens of thousands of New Yorkers. But I also think it’s unfortunate that it is so restrictive.”
One of the companies that will be operating under those stringent conditions is Vireo Health of New York (formerly known as Empire State Health Solutions). The company is helmed by CEO Kyle Kingsley, MD, who cut his teeth in a small suburban emergency room in Minnesota. Though Kingsley was originally skeptical about cannabis as medicine, patients who reported its benefits started to pique his interest. So he started researching the plant and was intrigued by cannabis’ remarkable safety profile. “I can fill you full of THC—the active ingredient—and it will have you spinning and vomiting, but it can’t kill you,” says Kingsley. “And that’s pretty unusual in medicine.”
When Kingsley began researching the industry a little more than two years ago, the main models were California and Colorado, what Kingsley dubs the “Wild West” of the pot industry. “A lot of the standard controls—consistency of dosing, safety, quality control—are not in place there to make it medicine,” he says.
So when Minnesota legalized medical marijuana in 2014, Kingsley embarked on an effort to rebuild the industry. Opting not to associate with members of the marijuana industry, he instead recruited a team of independent chemists, horticulturists, and other scientists to develop a scientific process of cultivating a medically sound product. “We cut ties with the industry. I wanted our team to put together a solution that mainstream medicine is comfortable with,” says Kingsley. “And that’s what we do: We make cannabis up to our medical, scientific, and operational standards.”
“We’re not cannabis flag-wavers, but we think it’s very meaningful for some patients.”
—Dr. Kyle Kingsley, CEO, Vireo Health of New York
The scientific process they created involves the extraction and separation of the active ingredients of marijuana. In lay terms, after the team harvests the marijuana flower, they dry and grind up the bud into a fine powder, then submit the plant material into a chamber with pressurized carbon dioxide to extract the different cannabinoids, such as THC or CBD. They then mix those cannabinoids with natural raw oils and formulate the specific products. “One of the things that makes physicians uncomfortable with cannabis as medicine is that it’s not precise,” says Kingsley. “We can make five-milligram pills and have them be precisely five-milligram pills.”
Those final products run on a spectrum, depending on the amount of either THC or CBD. The medicine with the highest concentration of THC—which has been shown to reduce pain and nausea in patients—has the potential to make patients feel high. Kingsley, however, sees that “as a side effect most patients don’t want. Now if it’s that instead of their pain, obviously they’re going to choose it.” The medications lower on the THC spectrum and higher in CBD, though, will either be non-intoxicating or minimally intoxicating.
Minnesota Medical Solutions, which Kingsley founded and which won a license to produce and dispense medical marijuana in 2014, has been dispensing in that state since July 2015. Now after receiving a license in New York under the Vireo name, Kingsley will be bringing his products to Westchester. Eligible residents will have access to the company’s five brands—costing between $250 and $500—at Vireo’s White Plains dispensary. The 2,300-square-foot facility, located at 221-223 E Post Road, was not yet open at press time, but Vireo’s plans indicate the space will be doused in natural sunlight, will include private-consultation rooms and have a pharmacist on hand to help patients understand their medications. There will be little signage out front and no advertising as to the products being sold inside the nondescript building, which has the semblance of a doctor’s office.
Still, not everyone was happy with the announcement of the White Plains dispensary. “I was hoping for a restaurant or a lawyer’s office or a store,” Kristina Saljanin, general manager of Westchester Business Center, which provides flexible office spaces, told The Journal News when the plan was announced. The company is next door to Vireo’s dispensary location. “A little over half a million dollars has been put into our building, and I’m scared that this will jeopardize that investment,” Saljanin continued.
When he was running for governor, County Executive Robert Astorino spoke out loudly against legalization of medical marijuana. He has since softened his stance, according to his spokesperson: “Rob is cautiously supportive if it is tightly controlled and limited and other medicinal efforts are first tried to relieve a patient’s pain and suffering.” Of the dispensaries, Astorino “expects that they will be good neighbors, hopefully nondescript and that they will operate strictly within the confines of the law.”
“Once people understand what it is, people are going to be proud of having this service in their community,” Kingsley responds. Gottfried also thinks worries about dispensaries are misplaced, saying, “The regulations are so restrictive that a dispensary will be about the most boring thing in town.”
Another company bringing medical marijuana to the county is Katonah-based Etain, LLC, which is run by Amy Peckham, alongside her daughters Hillary and Keeley Peckham. The company plans to open a dispensary at 460 Nepperhan Avenue in Yonkers.
Etain’s lack of medical or cannabis knowledge has been a point of contention. Amy’s professional background is with Peckham Industries, Inc., a local construction-materials company. Keeley, who will be chief horticulturist, has only a certification as a horticultural therapist from the New York Botanical Gardens (NYBG). And Hillary, who graduated from college in 2014, has worked as an assistant at Peckham Industries. Perhaps to make up for its seemingly scant experience, Etain recruited some well-established members of the medical marijuana industry: Charles Yurgalevitch, PhD, the director of the School of Professional Horticulture at NYBG, will serve as the company’s horticulture expert and consultant. Rachael Speegle, a cannabis nurse certified by the American Cannabis Nurses Association, sits on the board alongside Joseph Stevens, the company’s chief compliance officer, who founded Greenleaf Compassion Center, a dispensary in New Jersey—a state that mirrors New York’s stringent regulatory environment. Matthew Bickel and Michael Leigh, both licensed by the Colorado Marijuana Enforcement Division, will serve as cultivation expert and cultivation specialist, respectively.
Multiple requests for comment for this article went unanswered by Etain.
But despite these companies’ trailblazing efforts in this industry, even the owners are only cautiously optimistic. “We’re not cannabis flag-wavers but we think it’s very meaningful for some patients,” says Kingsley.
Many in the medical community echo that sentiment. “As a doctor, I find CBD to be a very interesting, promising treatment,” says Wolf, Morgan Jones’ neurologist. “But, before you tell a family you should try this medicine, you need real science behind the treatment.”
Medical data supporting the use of medical marijuana has been hard to come by, because, as a Schedule I drug, the federal government prohibits doctors from testing the plant in studies. This means doctors in New York instead have to rely on secondhand anecdotal evidence from other countries and states. Wolf has spoken with doctors from Colorado and Washington, and says there’s no standard agreement on dosing and prescribing. As a result, Wolf found that pediatric neurologists in Colorado were not prescribing their patients medical marijuana. Instead, general practitioners, rather than trained specialists, were prescribing it. “Because it’s such a gray area, the [neurologists] don’t feel comfortable prescribing it,” says Wolf. “And that’s the big issue.”
That’s why Wolf is happy with the restrictions put in place by Cuomo and the Department of Health in New York. He is also encouraged that the state has implemented an education program aimed at doctors. In order to register with the Department of Health to prescribe medical marijuana, practitioners must take a four-hour online course. The $249 course, provided by medical education site TheAnswerPage, includes lessons on the pharmacology of marijuana, contraindications, side effects, adverse reactions, overdose prevention, drug interactions, dosing, routes of administration, risks and benefits, warnings and precautions, and abuse and dependence.
Kathryn Hintz had thought Cuomo’s signing of the bill would bring her hopes of getting medical marijuana for her daughter to fruition. But 18 months later, she’s still waiting. It’ll be months, she says, before doctors are likely to prescribe Morgan anything. She also needs to wait to see if the industry works out all the logistics and whether companies can meet demand and consistency standards. “A lot of this is up in the air, and we just don’t know yet,” says Hintz.
One of the things still up in the air is how consistent and effective the five licensed companies will be at producing a sound product. “I’m uncomfortable with how the state gave licenses to companies who have no history in this field; it feels like they are treating the entire program—including patients—like a big experiment,” Hintz says. “It’s especially disappointing that these products already exist in other states—proven strains, consistent batches, and concrete results from patients, yet people in New York still have no legal way to access them.”
Gottfried agrees, saying, “I think the 2014 law is a big step but a first step.” He plans on introducing several bills in 2016 that will roll back some of the restrictions, add additional illnesses to the approved list, and legalize smokeable forms. “For many patients,” he says, “the most effective way to use medical marijuana is by smoking. It’s the easiest way to relieve [illnesses], and I don’t see why New York State ought to try and stop that.”
Scott Simone is a Brooklyn-based journalist and editor with The Contently Foundation for Investigative Journalism.