Autumn is 6 years old, and her neurology team at Children’s Mercy Hospital’s neurology clinic in Overland Park wants to take out a chunk of her brain.
The idea is to separate the hemispheres of her brain to control the seizure activity caused by her Dravet syndrome, a serious form of epilepsy. Autumn has been having seizures since she was 3 months old.
The operation is potentially fatal, and other neurologists consulted for a second opinion say they don’t think it will even work. Autumn’s syndrome is caused by a nonhereditary mutation in her brain that occurred in utero. Her mother, Christine Gordon, says her daughter’s disease causes seizure activity throughout the entirety of her brain, with multiple different seizures occurring on a regular basis as a result. Because the seizure activity isn’t isolated to any single area, splitting the hemispheres is not likely to be enough.
But the severity of the procedure isn’t the only thing deterring Gordon when it comes to her daughter’s well-being. Even though neurologists in Kansas say Autumn is out of other options, Gordon says she’s aware of at least one possible solution, something that worked when she tested it on her daughter without approval from her doctors. But she can’t keep giving it to her daughter, especially if her family wants to stay in Kansas.
The reason? Medicinal cannabis is illegal in Kansas.
“We did a trial version with her years ago, when we saw miraculous results,” Gordon said.
At the time, Autumn was 3. The trial lasted 30 days and offered Autumn a full spectrum of cannabinoids in an oil base that included THC and its variations — a compound many legislators in Topeka don’t seem fond of removing from the list of illicit substances in Kansas.
“At that point, she was regularly being admitted to ICU for going into status, which is just a constant state of seizing,” Gordon said of the period leading up to the 30-day trial. “During that 30-day period, she had zero seizures. She cognitively absolutely came alive. She started talking. She was walking better. She was eating better. And she was not seizing. Three days after we stopped, she began to have seizures again.”
Like many people waiting for medical cannabis in Kansas, Gordon has been asked why she doesn’t move to Colorado or one of the 28 other states that allow some form of legal cannabis. She says her family has “a lot” of reasons why they can’t move: They’re low-income, stuck in a mortgage, have a court order not to move resultant of a child custody case, not to mention the four other kids and an elderly mother who suffers from strokes.
Gordon says she first came across cannabis as a possible medication for her daughter when a neighbor mentioned CBD, also known as Cannabidiol, one of at least 113 active cannabinoids identified in cannabis — a plant most commonly known as hemp and marijuana. Hemp is more of an industrial material than a psychoactive herb, as in the case of marijuana, but CBD can be sourced from both.
CBD oil is technically illegal in Kansas on the state level, but Gordon says shops in and around Lenexa in the Kansas City area, where her family lives, still sell it. Imported, low-THC industrial hemp products, including some forms of CBD, are legal on the federal level as long as they’re made from the seed and stalk of the plant, not the leaves and flower — which, in the case of the flower, is what people smoke as marijuana in cannabis plants with higher THC concentrations.
But Gordon says she’s tried multiple brands of CBD, something she fears the state of Kansas might hold against her, despite the product’s regular use by medical professionals in states that more openly allow it. More than anything, she doesn’t want to put her daughter at risk of being taken into state custody.
“We have multiple brands that we have tried for her throughout the years, and they’ve been ineffective,” Gordon said. “At this point, she can’t even continue to try CBD because she is maxed out on a medication that is interactive with it.”
Pharmaceuticals haven’t worked either. Drugs like Fosphenytoin, used to treat epilepsy, only made Autumn’s seizures intensify. When she was given the drug for the first time, she seized for four hours straight.
“They pumped her so full of medication that she started to flat line,” Gordon said in tears. “And so they gave her another medication to reverse that, and when she came back and her vitals started to pick up, they found that she was still seizing.”
The fight for Freedom
Although she didn’t want to risk having Autumn taken away from her by continuing the medication in Kansas, Gordon continued researching medical cannabis to learn more and understand why it may have worked on her daughter when nothing else seemed to. A year into her journey, she met Lisa Sublett, another Lenexa resident. Together they helped form Bleeding Kansas Advocates, a group dedicated to fighting for Kansans waiting for Kansas to join the list of states adopting medical cannabis.
Last legislative session, the group submitted a bill to the Legislature called the Kansas Safe Access Act (KSAA) with rural communities in mind. The bill lays the groundwork for medical marijuana infrastructure in Kansas, and Sublett says the bill is the only cannabis bill introduced in Kansas that has been reviewed by multiple third parties and meets the guidelines of the Kansas Health Institute.
The bill covers everything from legal protections for patients and medical providers, patient identification cards, education centers, supply guidelines, cultivation guidelines, workforce education, public safety, revenue policies, packaging regulations, testing and lab requirements, waste disposal and more.
Still, Sublett says BKA is starting to see more resistance from key legislators after being promised the bill would get a hearing in 2018. With the mounting focus on the school finance formula, Sublett is starting to lose hope that 2018 will in fact be the year the bill gets a hearing, but she intends to keep fighting.
“It is a reprehensible choice to have to decide to continue to live without or to take a risk and treat and heal and risk jail,” Sublett said. “It is a reprehensible choice that Kansans do not support forcing their neighbors to make. These obstructionists, whether it’s their donor list, their own prejudice, whatever, will be called out, and Kansans will not stand for it.”
Evidence of potential
Legislators critical of medical cannabis in Kansas have called for more studies on the plant’s medicinal applications. There have been thousands of global studies in countries like Canada and Israel, which are ramping up their cannabis export industry while the United States watches. And while cannabis’ role as a medical panacea remains in dispute, evidence shows that it curbs and acts as a substitute for other drugs such as opioids, which are currently causing a national crisis through the sheer number of overdose deaths related to the correlation between pharmaceutical opioid and heroin use.
The National Institute on Drug Abuse (NIDA) funded a study that examined three medical marijuana policies. The policies, they found, have had varied, indirect effects on substance abuse.
NIDA’s most significant finding is that states with legally protected marijuana dispensaries were associated with lower rates of dependence on prescription opioids and fewer deaths due to opioid overdose than would have been expected based on prior trends. However, states with legally protected marijuana dispensaries also were associated with higher rates of recreational marijuana use and an increased potency in illegal marijuana.
The study, conducted from 1999 to 2014, compared rates of marijuana and prescription opioid-related use and problems in states with legalized cannabis dispensaries that allowed physicians to recommend marijuana, as well as states without legalized marijuana dispensaries that didn’t allow physicians to recommend marijuana. Only states with legalized marijuana dispensaries showed links to a decrease in opioid-related treatment admissions and overdose death.
Using prescriptions filled by Medicare enrollees from 2010 to 2013, a study conducted at the University of Georgia and published in 2016 found that states that legalized medical cannabis saw a reduction in the number of Medicare prescriptions used to treat conditions such as chronic pain, anxiety and depression, resulting in an overall reduction in Medicare spending. In 2013 alone, medical marijuana saved $165 million in national Medicare expenditures, according to the study.
Cannabis remains classified as a Schedule I drug, alongside heroin — a potent opioid drug — and above Schedule 2 substances such as PCP and cocaine. Schedule I drugs are defined as drugs that have unpredictable effects, cause severe psychological or physical dependence — or death — with no accepted medical use other than limited research purposes in some cases.
Petitions have been filed to remove cannabis from Schedule I of the Controlled Substances Act since 1972. Twenty-nine states, the District of Columbia and U.S. territories Guam and Puerto Rico have legalized some form of medical cannabis. It remains illegal on the federal level.
A recent study published in the European Journal of Preventive Cardiology found that smoking marijuana, rather than using cannabis in some other way, increases the risk of death associated with high blood pressure. But another study published in 2015 by Dresden University of Technology in Germany found that marijuana in and of itself is around 114 times less deadly than alcohol. Of the drugs studied, alcohol posed the highest overall risk, followed by nicotine (tobacco), cocaine and heroin. Marijuana was placed at the opposite end of the spectrum.
Meanwhile, opioid prescriptions and opioid overdose deaths have nearly quadrupled from 1999 to 2014, despite no overall change in the amount of pain reported by Americans, according to the Centers for Disease Control and Prevention.
An article published in the New England Journal of Medicine in 2016 noted that in 2014, 10.3 million Americans reported using prescription opioids that weren’t prescribed for them or were consumed for recreational reasons. Between 2004 and 2011, emergency department visits involving misuse or abuse of prescription opioids increased by 153 percent.
Opioid-related deaths in Kansas are beginning to trend upward, as well. The Wichita Eagle reported last year that opioid-related deaths have steadily increased from 2012 to 2015. While there were only 136 opioid-related deaths in Kansas in 2012, by 2015 there were 211.
A study conducted in collaboration with University of California Berkeley by HelloMD, one of the nation’s largest communities of medical cannabis patients, surveyed 3,000 patient participants about their use of cannabis in relation to their opioid consumption. Of those, 97 percent strongly agreed or agreed that they could decrease opioid use when using cannabis; 92 percent strongly agreed or agreed that they prefer cannabis to treat their medical condition; and 81 percent strongly agreed or agreed that cannabis alone was more effective than taking opioids with cannabis.
Epilepsy patients like Sara Weber feel the same way about their condition. Weber, of Washington, Kan., started having seizures when she was 18. Weber said, “You name it, I’ve tried it,” when asked what pharmaceuticals she’s tried using to treat her “intractable” epilepsy — which basically means “you’re screwed,” she said.
Because of pharmaceuticals, Weber has suffered serious side effects. Potiga, an anticonvulsant, almost caused her kidneys to shut down, and Vimpat, another anticonvulsant, left her with dissociative identity disorder after six years and necessitated therapy when her sense of self became compromised by new identities she didn’t recognize. She had to pay $672 a month for the drugs.
“That didn’t help the seizures. None of them did. I still suffered with 20 to 50 seizures a month on all of these medications,” Weber said. “You name the anti-epilepsy medication, I’ve been on it.”
While Gordon has to care for a child with epilepsy, Weber has to care for two girls, ages 4 and 8, while dealing with her own epilepsy every day.
She says the only things that have worked for her in the saga of painful implants and ineffective pharmaceuticals are a low glycemic diet and progesterone hormone treatments that her primary doctors didn’t even recommend, much less support. She discovered that a change in her progesterone levels while she was pregnant stopped her seizures, so against her neurologist’s advice, she started giving herself hormone treatments. She said her natural remedies have mostly stopped the seizures, but not when she menstruates.
“The only thing that’s made me feel better is the diets,” Weber said. “I’ve done the low glycemic diet for four years, and I’ve been treating myself with these hormones, and these are the only things that have made me feel better, not these disgusting pills and not these disgusting surgeries. All that has done is lead to more surgeries and more money in their pockets.”
As for CBD oils, Weber says she’s tried them and they’re relaxing, but about the same as essential oils when it comes to actually treating her condition.
Until Weber’s seizures are completely gone, she says she can’t work, drive a car, or trust herself to do simple tasks. The last time she tried to work, she said, she had three seizures at the same time and ended up on an active flattop grill, causing third-degree burns that required skin grafts to heal. The last time she tried to drive, she said, she bought a car and crashed it into a pole seven blocks away after having a seizure. She said she had no recollection of any of it, not even buying the car, when confronted by police.
Weber hasn’t just tried pharmaceuticals. She had an implant in her chest for three years that would stimulate her brain every three minutes for 30 seconds to control seizure activity. She said the constant stimulation made it painful to breath and talk and aggravated her gag reflex — and didn’t help the seizures.
Now doctors want to give her another implant, this time in her brain. Titled NeuroPace, it’s a cousin to her previous implant. To install it, surgeons will have to cut open the lesions in her brain caused by her seizures after removing the top of her scalp. Weber was told there was no certainty the implant could work, and if it did work, it could take up to two years to show results.
Like others, Weber wants to give medical cannabis a chance, even though her epilepsy is “intractable.” She tried cannabis while in Colorado, and a doctor even gave her a written recommendation after she had two seizures in his office at once. He told her only THC could heal the lesions on her brain caused by her seizures. But to be sure, she says she needs a trial — to know if it will work as a viable treatment. In Kansas, she doesn’t have that option.
“The longest I’ve ever been able to be seizure-free without being pregnant is one month and one week,” she said. “I need to be able to try medical cannabis longer than that, longer than just going up there and trying it to see how it tastes. Just once.”
When asked if she has considered moving to Colorado, Weber said she loves Kansas, a place she calls home. Her husband of 12 years was born and raised in Washington, they own two homes in the area, their oldest daughter is related to her classmates and teachers at school, and her immediate family lives in a town 10 miles away, including her six siblings.
“It’s just really hard to just uproot ourselves,” Weber said. “I’m disabled. I love my home here. I’ve got a beautiful garden that I tend to, and I love the farmer’s market. I love my home. I love my community.”
Standing up for cannabis
Gordon agreed when asked about her stance on the laws. She called for a vote on the ballot to determine the future of medical cannabis in Kansas to ease the burden on legislators.
“The support in Kansas is overwhelming, and citizens need to stand up,” she said. “Medical cannabis is coming to Kansas. There is no arguing that. The shift of the nation has proven this is what the people want. The state of Kansas deserves a responsible bill that keeps our rural areas in mind… The Kansas Safe Access Act needs to be enacted. We’ve got lives depending on it.”
The notion that cannabis is crucial to some Kansans’ survival is a contention outlined in “Live Free or Die: Reclaim Your Life, Reclaim Your Country,” a book detailing a Garden City woman’s use of cannabis to treat her debilitating Crohn’s disease.
The author, Shona Banda, had no criminal history when she was arrested in Garden City on five felony charges and temporarily lost custody of her then 11-year-old son after police raided her home and found cannabis and vaporizers used to manufacture the oils she says are the only thing effective in treating the symptoms of her illness.
The 38-year-old mother drew national headlines after people across the country learned she was facing 30 years in prison and the loss of her child for what she described as an effort to save her own life. Banda accepted a plea deal in August 2017 after pleading not guilty in April. In exchange for a no-contest plea to a count of possession of drug paraphernalia with intent to manufacture, a level-five drug felony, the State of Kansas dismissed the remaining charges.
Reunited with her son, Banda now lives in Spokane, Wash. — a de facto part of the plea agreement. Though her story in Kansas may have come to a close, she remains passionate about the state’s fight for medical cannabis rights.
“I’ve personally seen so many try to move, try to make a new life,” she said. “Truth is, our entire country is and has been in a recession. Everyone is in a fight for survival. Leaving a comfortable home while very ill is very risky and — let’s be honest — tiring. Asking a chronically ill human being to stay and die or leave and live, that’s immoral and irresponsible as a caring human being.”