At 8-and-a-half months old, Sophie Ryan was diagnosed with a rare optic pathway glioma brain tumor. After her diagnosis, she underwent major brain surgery, to remove a cyst and biopsy the tumor to (to be sure it wasn’t terminal), many extended hospital stays, and over nine blood transfusions. Her treatment included the cannibidoids THC and CBD, which worked to decrease her tumor and cyst along with fighting blindness. Within two months, the tumor started shrinking. Sophie is now 5 years old and has seen astronomical progress in reducing the size of her tumor. Ryan’s mother, Tracy Ryan, has become an advocate of medical marijuana for children.
The problem to date has been acquiring enough of the plant to be able to conduct long-term studies and prove scientifically what is causing the success.
A majority of Americans (64 percent) support legalization of marijuana, according to an October 2017 Gallup poll. Still, there is currently a degree of trepidation around its use for pediatric ailments, which manifested in hysteria around the death of an 11-month-old in Colorado in November, said to be the first “marijuana overdose death” at the time, then walked back by the doctors who have clarified that they are not saying marijuana caused the death. This reticence is normal: each wave of medical innovation triggers the debate about how far is too far to treat disease. In the past, these arguments arose over vaccines, surgery, and chemotherapy. Today, the argument is on medicinal marijuana.
“We all want the best for our children,” researcher Adie Poe, Ph.D, says “no matter what our origins or political inclinations are, we can all agree that their their health and safety are a priority.” She says that there have been “extremely promising” preliminary results where cannabis has been used to treat pediatric ailments; epilepsy has received attention, but there have also been Israeli trials for kids with Autism (Israel was one of the first countries to permit medical marijuana in the 1990s), and Poe says she has seen “profound case studies for Crohn’s patients as well.” Poe is the co-founder of research organization research organization Habu health, which researches and advocates for cannabis products.
“[Many conditions] respond effectively to cannabis-related treatment PTSD, anxiety, eating disorders, MS, cancer, epilepsy, HIV… the list is long,” says Stormy Simon, an e-commerce expert, formerly the president of Overstock.com, who now works as a cannabis advocate and serves on the board of CannaKids. “The problem to date has been acquiring enough of the plant to be able to conduct long-term studies and prove scientifically what is causing the success among this diverse list of ailments.”
The issue is that cannabis and THC are labeled as Schedule 1 drugs by the FDA, placing them in the same category as heroin and ecstasy, and making it illegal to “manufacture, distribute, or dispense, or possess with intent to manufacture, distribute, or dispense, a controlled substance” under the Controlled Substances Act. This makes it difficult to research their use or to obtain funding to do so. Further, state legalization of marijuana is still in contravention of federal law.
According to Sunil Aggarwal MD Ph.D, who is with the Sage Med Integrative Medicine practice and a clinical instructor at the University of Washington school of medicine, the marijuana discussion is a lot more complex than ensuring the safety of children, it’s about getting over fear associated with stigma — particularly since the FDA has provided guidelines for doctors to give synthetic THC pillos, like Marinol, to children since 1985. That is, its application for use as a medicine is not new.
The lingering stigma around marijuana makes a change to the current legislation difficult, according to Poe. “Stigma is indirectly responsible for this conundrum in that re- or de-scheduling would be a very bold, stigma-defying move on the behalf of Congress, the attorney general, or even the president,” she says. “This amendment to the Controlled Substances Act would require that these federal leaders drop their stigma and look at the evidence that supports cannabis as at best a Schedule II drug, with valid medical use and some addictive potential.”
Prior to 1937, when the Marijuana Tax Act was passed, the plant was considered a medicine. Its subsequent labeling as a Schedule 1 drug has restricted research into its pharmaceutical benefits.
“The past 80 years have been fraught with campaigns and terror against cannabis,” said Simon.
The deliberate smear campaign of marijuana paired with so little time researching its effects leaves no surprise we are so underinformed.
According to Poe, being classified as Schedule 1 leads to funding obstacles which further limit research opportunities.
“The only federal agency that gives this type of research funding is the National Institute on Drug Abuse,” she says. “However, NIDA’s mission is to prevent drug abuse, and they view cannabis as an addictive drug… because it is a Schedule I drug with ‘no accepted medical value.'”
Contrary to popular belief, marijuana has methods of use that don’t involve smoking or “getting high.” The type of cannabis oil extracted, CBD, as opposed to the THC most people are familiar with, determines the interaction with the body. CBD, which is more often discussed in medical terms, has less influence than THC. But that doesn’t mean there aren’t unique benefits for each of them. THC is more often used during chemotherapy, AIDS treatment, and post spinal injury because it can assist with decreased appetite and tremors. CBD is more commonly used for joint pain like arthritis and for treating depression, anxiety, and mood disorders.
Marijuana and its related products have long been associated with unlawful behavior and teenage delinquents, despite evidence that it is less harmful than alcohol. Cannabis, or “weed,” as it’s often called, has kept that stigma through the years and is consequently fighting a fierce battle for widespread legalization.
Despite the above preconceptions, the last few decades of research have found promising outcomes for chronic illness and THC. Tales like that of Sophie Ryan offer the public an opportunity to rethink their position.
In hopes of filling that need, Tracy Ryan founded CannaKids to fight for all the children like her daughter who can find relief through cannabis.
“The problem is, we are still guessing as to what these patients need. Without human trials we are basing our dosing protocols on anecdotal evidence we have tracked without knowing genetically what’s happening at the patient level,” Ryan tells me. “We are currently funding ground-breaking research at the Technion Institute in Israel under Professor Dedi Meiri, but we need more human trials starting right here in the U.S. It’s time for our government to work with us and not against us so patients can have this amazing tool.”
Young Sophie was one of two children featured in Weed the People, a film that aimed to increase awareness of what children with chronic illness have to gain from cannabis treatment. She gets daily doses of cannabis oil orally in addition to her chemotherapy.
According to a recent interview on The Doctors, the treatments have done something Sophie and her parents never thought was possible: preserve her vision and shrink her tumor.
“I believe this oil has helped my child on so many levels, not only has it helped preserve her vision,” Tracy Ryan said in the interview, “but her neurologist told us she had a 100 percent chance of going blind with minimal vision in the right eye being a best-case scenario. We shrank that tumor by 85 to 90 percent that first 13 months and the tumor was not supposed to shrink.”
CannaKids aims to support and increase awareness of other children like Sophie who might find hope in medical marijuana.
“[It] can be a touchy subject, however, they are starting the conversation,” says Simon. “You would be far stretched to find someone who can argue with the success Sophie has had, and Sophie is one of thousands of children battling a disease that could benefit from cannabis.”
Proponents of medical marijuana for children believe that more light shed on its use will convert people to its safety and necessity.
“The only thing I would ask is that anyone who is scared of CBD and/or THC,” says Simon, “[is] take the time to educate yourself about the history of cannabis, why it became a Schedule 1 drug and the medicinal benefits that people around the world are experiencing before you make a final decision on where you place judgement on the subject.”
The applications could be far-reaching, says Aggarwal, who says that, while still in the research stage, “I’ve seen children who have severe explosive disorder who have increased calm and engagement in school through the use of THC and CBD.”
“After watching my own daughter’s success with medical cannabis over the last four years, we have dedicated our lives to helping patients around the world get access to this incredible plant,” says Ryan. CannaKids works with patients of all ages, Ryan has not only seen countless symptoms eased with medication, but “eradication of diseases in some patients that had no chance of survival,” she says.
But fear remains. Although the autopsy of the 11-month-old who died in Denver, Colo., revealed myocarditis — an inflammation of his whole heart muscle — the headline had already had an impact, incorrectly touting the death as the “first marijuana overdose death.”
Despite medical consensus, it sparks concerns in parents. Simon understands the fear.
“There are many misconceptions and stigmas about using cannabis in general, so when it comes to administering the plant as a medicine to children, I can understand the fear. I don’t know of any parent who forgoes Western medicine for their children and transitions to a complete cannabis regimen,” she says. “The plant doesn’t work for everything on everyone but the fact that it may work or help, whether it’s for seizures, anxiety or cancer, to me means, it should be available to all, even children.”
Aggarwal emphasizes the importance of knowing how medical marijuana use will interact with other aspects of your child’s life, like school. “There are still some legal hangups [related to administering cannabis] to children. Will the school be OK with that, if they are in school? Who will administer during school hours?” he explained.
Since most schools receive federal dollars there are restrictions on what they can and cannot do. Recently, two Illinois parents sued Schaumburg-based District 54 on the basis that their policy prohibiting the use of marijuana on school grounds violates the Individuals with Disabilities Education Act and the Americans with Disabilities Act. Illinois Attorney General told the federal court he would allow her to administer the drug as treatment for her leukemia-related seizures.
Marijuana, like any medication, needs to be administered according to a doctor’s advice to make sure it doesn’t contraindicate any other medications. Lastly, Aggarwal advocates choosing trustworthy retailers. “Make sure you have suppliers who have reliable third-party test products. Make sure they are safe, clean, and that you know its dose so you can follow it,” he says.
The risks are low, but a more enlightened attitude toward the value of medical marijuana, and opening up of the roadblocks to testing would ultimately result in a safer drug and greater access for children in need. We owe it to them to research the benefits and consequences objectively. Their futures depend on it.