Concerned mothers, patients and doctors weed through the pros and cons of legalizing this controversial plant.
She was only three months old when they started, her tiny body overcome by seizures that had no obvious cause.
Autumn was just a baby when this chapter of her life began, undergoing an MRI, CAT scan and spinal tap before genetic testing revealed that she has sodium channelopathy epilepsy, a condition that will cause her to suffer unrelenting seizures caused by fevers. Faced with this diagnosis, Christine Bay responded like any mother would — she devoted her life to finding relief for Autumn, now a spunky 3-year-old in Lenexa who just wants a chance for a normal life. The only way to get relief, Bay believes, is with medical marijuana.
Physicians initially prescribed Autumn anti-seizure medication, which actually made her condition worse and, on one occasion, caused her to seize for hours.
“We’ve tried it all,” Bay explains. “I’ve researched everything and have tried to find something to work for her. I’ve tried diets and acupuncture, and nothing has helped.”
Aware that epileptic patients in Colorado and California were having success with treatment using oil rich in cannabidiol (CBD), a compound found in cannabis resin, Bay’s interest was suddenly piqued.
The oil, administered orally, didn’t come with some of the more significant side effects of anti-seizure medication. Bay explains that, with other medications, drowsiness, fatigue, irritability, teeth rotting and hallucinations are often an issue.
CBD oil, on the other hand, has actually been reported to stimulate patients’ appetite with no hallucinatory side effects.
“I’ve heard of nothing but positive experiences with it,” Bay says.
Autumn bay with her mother christine bay
Bay decided that, if change was going to happen, she couldn't stand on the sidelines. Working with Bleeding Kansas, a group dedicated to promoting awareness of medical marijuana legislation, Bay has become an expert on cannabis laws for medicinal purposes and the obstacles that lawmakers face trying to get them passed.
Working closely with Senator David Haley, Bleeding Kansas has been involved in the drafting of the Cannabis Compassionate Care Act, which would legalize medical marijuana. Drafting is one thing, however; getting the act heard is another. At this point, the bill has been pending for three years and has yet to be set for hearing.
Missouri, on the other hand, made small strides on this issue in 2014. Governor Jay Nixon signed HB 2238 into law, which authorizes the use of cannabis oil for a select group of epileptic patients who can establish that they can't be treated with at least three other treatment options.
For Autumn's family, the Missouri law doesn't represent meaningful progress. Because it applies to Missouri residents only, Autumn does not qualify because she lives across the state line, despite getting treatment in Missouri. And, despite the bill passing, the dispensing of CBD oil has yet to occur.
“There is no timeline as to when this oil will become available,” Bay says. “It breaks my heart, but some of these children aren’t going to get it in time.”
Encouraged by the support that she has received, Bay is committed to doing everything she can to improve her daughter's life and doesn't understand the resistance to such a readily available and life-changing treatment option.
“People are making this issue more complicated than it is,” she says.
To others, however, the medical marijuana issue isn't quite so simple.
Brad Bates, director of government relations with the Missouri Association of Osteopathic Physicians & Surgeons (MAOPS), offers a different perspective to the debate.
Empathizing with parents' desire to seek out any treatment option that may improve their children's lives, he is nevertheless concerned that such efforts may come with a significant cost for patient safety. As the only medical association to testify during the 2014 hearings in Missouri, MAOPS’s concerns relate to regulation rather than efficacy.
“Any product used to treat people must go through the rigors of FDA testing,” Bates explains. Because medical marijuana isn't subject to the same regulatory process as pharmaceuticals, patient safety is the focus of MAOPS’s concerns. Because the physical effects of THC (tetrahydrocannabinol, the ingredient in marijuana that makes a person “high”) will vary based on an individual’s body type and other medications taken, MAOPS considers the lack of clear guidelines pertaining to dosing to be problematic.
Bates compares prescribing medical marijuana without such guidelines to “driving with your headlights off.”
He emphasizes, “To not have it tested could be doing more harm than good.”
Dr. Kevin Hubbard, an internist, hematologist, oncologist and hospice and palliative medicine physician, shares Bates' concerns. As professor and chair of the department of internal medicine at the Kansas City University of Medicine and Biosciences College of Osteopathic Medicine, Hubbard understands that parents are just trying to help their children, but he doesn't believe that, at this stage in the process, medical marijuana is the solution.
“If not comprehend, we can apprehend how painful it is to see a sick child who belongs to you, and you want to do something to help,” he says.
At this point, however, he is concerned that the lack of regulation of medical marijuana will do more harm than good.
“You don't have any assurance of what's in it [CBD oil],” he explains. “We need to make sure products are controlled and regulated so they don't end up hurting the people we're trying to help.”
There are actually two FDA-approved products already on the market that contain THC or its synthetic version. Dronabinol (Marinol®) and Nabilone (Cesamet®) are used to treat chemotherapy-induced nausea and extreme weight loss. Hubbard has had success using Dronabinol with his patients, but warns that it needs to be monitored carefully and its potential risk for abuse well-communicated.
The availability of FDA-approved products leads to a logical question: if products exist that have gone through the rigors of testing, why the need to support any other kind?
According to Bay, these manufactured products lose something in the process.
“Marinol is created in a lab, which takes away the natural components,” she explains. “You need other cannabinoids. You can’t take out one extract and expect it to work the same.”
Although marijuana use allegedly dates back more than 3,000 years, its long-term safety is still a question of heated debate. Classified as a Schedule I drug, marijuana joins heroin, ecstasy, LSD and methaqualone in a category defined by federal law as a “drug or other substance [that] has no currently accepted medical use” and “has a high potential for abuse.”
Bay and many others have a problem with this classification.
“To consider marijuana a Schedule I drug is absurd because that means there are no medical properties,” she says. She believes that such outdated and misinformed thinking is actually harming the very people it claims to protect.
“Our children are dying,” she says. “We can't wait.”
Bay cites overdose statistics relating to FDA-approved pharmaceuticals as support for the comparative safety of cannabis.
“It is attributable to zero deaths,” she emphasizes. “You can’t overdose on this.”
However, Hubbard doesn't consider the lack of overdose potential persuasive given studies that look into the effects of long-term marijuana use on motor control, mood and thought processes. Cannabis Use Disorder is actually recognized by the Diagnostic and Statistical Manual of Mental Disorders as a potentially severe condition characterized, in part, by social and interpersonal impairments associated with extensive use.
And, many believe that the line between medical marijuana and recreational use is a thin one to walk.
Case in point, when Colorado first passed medical marijuana legislation, there were three medical conditions for which cannabis could be legally prescribed, one of which was chronic intractable pain. Within the first 12 months of the legislation being passed, the incidence of claims for chronic intractable pain went up by 300 percent — a rather startling, albeit not surprising, increase.
Some patients travel great distances to obtain medical marijuana treatment, such as a 25-year-old Kansas resident who was diagnosed with epilepsy at 7 years old. After finding other treatments to be ineffective, he obtained medical marijuana treatment in Arizona and plans to move to Colorado. Although relocating is an option for some, many families can't afford to simply pick up and start their lives over somewhere else.
The positive effects of medical marijuana treatment aren't necessarily immediately apparent and, although Bay is optimistic given others' success stories, Autumn would have to undergo daily treatment with medical marijuana for at least 30 days to determine how her condition reacts to the therapy.
With passage of the Cannabis Compassionate Care Act in Kansas, the decision whether to relocate would be one less problem that patients have to face.
Issues surrounding the legalization of medical marijuana are anything but black and white. Shades of gray surround arguments on both sides, and personal opinion is at the heart of whether you are opposed or in favor of legislation.
Ironically, the one issue that appears uncontested is the potential efficacy of marijuana for medicinal purposes.
For concerned parents like Bay, however, the time spent trying to reach a middle ground on regulation will always be time better spent helping those in need.
A Primer on Pot
Delta-9-Tetrahydrocannabinol — it’s the official name of the ingredient in marijuana that makes you feel, well, a bit loose and super relaxed. Referred to as THC, it’s just one of more than 100 other cannabinoids found in marijuana plants. THC stimulates appetite and reduces nausea, which has made it of particular interest for the treatment of chemotherapy patients. Cannabidiol (CBD), another cannabinoid, is thought to reduce pain and control epileptic seizures. Cannabinoids bind to different receptor sites in the body (THC binds to receptors in the brain, while CBD binds to receptors throughout the body), which explains why they provide unique types of relief.
At What Cost?
Because discussion surrounding medical marijuana usually focuses on patient efficacy and side effects, a less-discussed issue relates to cost. Most insurers will not cover medical treatment that has not been FDA-approved, which means patients may have to pay for medical marijuana out-of-pocket.
The cost of anti-nausea drugs to curb the side effects of chemotherapy, for example, may be covered under a private, state or federal insurance plan, but the substitution of medical marijuana to treat these side effects in a state that has legalized cannabis treatment will shift the payment burden to the patient.
In other words, just because a treatment has been legalized, does not necessarily mean that it will be covered.
Leave It in the Rockies
Not that you would even think of it, but be wary of bringing back any “souvenirs” from your trip to Colorado.
Transporting across state lines is illegal, and the authorities have clever ways of finding out. One recent traveler noticed signs alerting him to a “Drug Stop – K9 in Use” checkpoint ahead on I-70.
With no reason for concern, he continued along the highway and found that the checkpoint was nothing more than a post with flashing lights. The warning sign was actually a diversion to make those with a little something to hide take the next exit in a panic. Imagine how panicked they became when they found a friendly officer waiting for them on the off-ramp.
Reading Between the Lines
The American Cancer Society, one of the country's most well-known and trusted medical resources, says the following about medical marijuana: “The American Cancer Society supports the need for more scientific research on cannabinoids for cancer patients, and on better and more effective therapies that can overcome the often debilitating side effects of cancer and its treatment. The Society also believes that the classification of marijuana as a Schedule I controlled substance by the U.S. Drug Enforcement Administration imposes numerous conditions on researchers and deters scientific study of cannabinoids. Federal officials should examine options consistent with federal law for enabling more scientific study on marijuana.” For more information, visit cancer.org.
How Does This Work?
Cannabis. Pot. Weed. Marijuana. The names vary as much as the method of administration. Cannabis oil can be taken orally, or the plant can be used to create a butter or oil mixture used for cooking. These edibles, although a popular product in legalized dispensaries, can be easily misjudged in terms of dosage and carry associated risks. Marijuana vaporizers are also available, which heat the plant and release THC components in vapor form. Tonics can be placed under the tongue, and teas are even available for those who prefer to sip the treatment slowly. And, of course, smoking is still a popular treatment method with many patients.