Driven by his frustration with New Jersey’s restrictive medical marijuana program, Ricardo Rivera crowd-funded a research trip to Colorado. He wanted more information about extracting cannabis oil for his daughter and a new law that means sick kids can be treated with medical marijuana on school property.
Tatyana “Tuffy” Rivera is 8 years old and completely nonverbal. At 10 months old, she was diagnosed with a severe form of epilepsy called Lennox Gastaut Syndrome that can cause up to 300 seizures a day. Her father says the side effects from two dozen pharmaceuticals only made things worse.
“My daughter would be wheelchair bound, bed-ridden all day and still seizing uncontrollably,” Ricardo Rivera says. “We decided to get into cannabis for my little angel warrior a year ago and now she has completed a few milestones. The problem is the program in New Jersey is just a failure.”
Rivera administers Tuffy’s morning dose of cannabis oil with a dropper an hour before she gets her pharmaceuticals so the receptors in her brain aren’t blocked. When she’s home at noon, she gets her second dose. However, most days at that time she’s at school, and a nurse is not allowed to give her drops because it’s a drug-free school zone.
“She’s not going to be smoking a bong in the bathroom,” Rivera says with a laugh. “They just need to give my daughter her oil. She’s actually having more seizures at school than she is at home. I’m supposed to be sending my daughter to school knowing that she’s safe. It’s an outrage.”
He was inspired to visit Colorado by another New Jersey father named Brian Wilson, who moved to Denver two years ago with his daughter Vivian. She suffers from Dravet Syndrome, which causes seizures and developmental delays.
“All the work on cannabis is really crowd-sourced by the patient’s,” Wilson says. “The first thing we saw was a cognitive awakening. Instead of just being this depressed little kid who was always kind of distant, it was like a light bulb turned on and she started interacting.”
Before getting signed up for Colorado’s medical marijuana program, Vivian couldn’t leave the house. Now at 5 years old, Vivian is attending preschool.
As of March 31, there were 467 patients under the age of 18 on the Colorado Department of Public Health and Environment’s medical marijuana registry.
After Everitt Middle School in Jefferson County confiscated a 14-year-old student’s medical marijuana earlier this year, the legislature pushed for a change to Colorado statute. The student, Jack Splitt, suffers from spastic quadriplegic cerebral palsy, but the school was up in arms about his private nurse carrying around his cannabis oil.
“Even though medical marijuana is constitutionally protected, the law in Colorado was pretty clear that any kind of marijuana can’t be on school property,” says Rep. Jonathan Singer (D-Longmont), a social worker and educator. “So Jack and his mom came to the Capitol and we wrote an amendment to Senate Bill 14 that makes sure it’s now legal for parents or a private medical professional to be able to give their kids medical marijuana on school property with a doctor’s recommendation. Now kids with seizures, cancer, any kind of serious medical condition are not going to have to choose between going to school or taking their medicine.”
The updated statute is clear about the new rules.
“A school district may adopt a policy… that authorizes a student’s parent or a medical professional… to possess and administer medical marijuana to the student in an appropriate location on school grounds, upon a school bus, or at any school-sponsored event.”
The legislation emerged from the conservative Senate agriculture committee. Rep. Singer says once they saw the kids and talked to the parents, legislators were overcome with sympathy for these families.
Most doctors, however, are afraid to support medical marijuana publicly for fear of being reported to their practice board, Singer says. School nurses regularly administer psychotropic medications with serious side effects for kids, but they told legislators they don’t want the authority to give kids cannabis oils.
“There’s such a discriminatory impression of what medical marijuana actually is,” Rep. Singer adds. “Even if nurses support it privately, they’re afraid they will be referred to their licensing board for disciplinary action because it is still federally illegal. I wanted a bill that would pass and move the ball forward. But absolutely, it could go further.”
When asked what level of school district participation he expects, Rep. Singer says schools need to decide “whether they want to provide services for kids, or whether they’re going to turn their back on kids.” In the future, schools kicking kids out for medical marijuana will be ignoring state law in favor of federal law.
In New Jersey, three separate doctors had to approve Tuffy Rivera’s application for medical marijuana. Cannabis extracts are not allowed, meaning her father must make the oils in his own kitchen. However, one ounce of flowers costs more than $500, and there are only three dispensaries in the state, so getting the right strains and dosages is a constant struggle.
It isn’t necessarily much easier in Colorado.
“We originally had access to testing when we moved out here,” Wilson points out. “You adjust the dosage based on the results. They decided to license the labs and everybody [on the medical side] got cut off. You’d have no idea what was in your next batch. It was a matter of putting Vivian through the ringer again.”
Rep. Singer points to what Colorado calls a seed-to-sale closed loop regulatory approach for recreational marijuana. Caregivers and individuals doing their own extractions are not licensed.
“When you ask not to be licensed and outside our closed loop system, that means there are certain benefits that are harder to obtain,” Singer says. “My hope is if you have a registered caregiver, they’ll be able to have access to a licensed testing lab.”
He also points to new potency testing technologies being developed in Boulder. While these items are a five-figure investment, a co-op of medical patients or growers could go in on them and share potency assessments of their flowers and concentrates. However, this doesn’t address contaminants, pesticides and molds. In one recent investigation, 10 out of 10 Front Range commercial growers advertising an organic product were found using synthetics.
Meanwhile, the CBD vs. THC debate rages on. THC, or tetrahydrocannabinol, is known for euphoric psychoactive effects. CBD, or cannabidiol, is a different compound more often associated with medicinal value. But CBD-based remedies with little or no THC don’t work for everyone. Vivian is currently responding better to higher doses of THC than CBD.
“These kids are getting so high on pharmaceuticals, it’s horrible,” Wilson says. “There’s nothing wrong if my kid gets a little high from THC. In fact, more and more parents are finding out they have to add THC to their medicine to make it work. There’s no one-size-fits-all, not even for Dravet [Syndrome].”
Rivera agrees.
“They actually balance each other out,” he says. “I learned here on this trip [to Colorado] that you really do need THC to help boost [the medicinal effects of ] CBD. We all have different bodies, different chemistry.”
Rep. Singer says if it’s done under a doctor’s supervision, Colorado needs to allow it.
“That’s what our constitution says,” he points out. “Do you trust physicians or do you not trust physicians? Until the federal government actually starts dealing with this in a responsible way, we’ve got to blaze our own trail. Colorado is the fulcrum of the tipping point.”
Rivera isn’t hopeful New Jersey’s medical program will get better as long as Governor Chris Christie is in charge.
“Once he’s out of office, then things will change,” he says. “[Our family] will have to keep chipping away until either we leave or we just belly up. And I’m not bellying up, because I’m from Jersey!”
For Wilson, moving to Colorado has had its drawbacks.
“We lost our entire support structure,” he says. “Vivian has a full-time caretaker. If she calls out sick, in Jersey I could have called my mom. Now, [my wife and I] both have to take half a day off. It’s been very tough.”
And while Rivera may move his family here if necessary, he has no illusions that Colorado will magically solve Tuffy’s problems.
“A lot of parents thought they were gonna come here and get a cure and it doesn’t work that way,” he says. “Cannabis is not going to cure you. But it will give you a lot of relief and a better quality of life, which is what most of us as parents with children of special needs want.”
