At six weeks old, Maggie Selmeski began having multiple seizures. Her parents rushed her to the hospital for tests, and they were told she has intractable epilepsy. This term is given to epileptic patients who do not respond to conventional treatments. Even under a doctor’s supervision and a prescription drug regimen, Maggie was having approximately 500 seizures daily.
Her parents, Shawn and Rachael Selmeski, were heartbroken by the prognosis.
“The doctors were saying, ‘there’s nothing else we can do for her. You need to go home and love her and she’s not going to live very long,” said Shawn.
Left with few options, Rachel began researching alternatives. She discovered that other parents were using cannabis to treat their child’s acute epilepsy.
Rachel was reading about Charlotte’s Web, a high-CBD strain with very low THC, usually concentrated into an orally-administered oil. It has had success treating forms of epilepsy in children that weren’t responding to traditional pharmaceuticals. The strain was named after Charlotte Figi who had hundreds of seizures a day just like Maggie. Charlotte’s parents sought out the Stanley brothers for help finding the right strain that would help with her seizures. It took years of trial and error to hone in on the right combination of cannabinoids and dosing. Once they did, Charlotte’s seizures decreased from over 300 per week to a couple per month.
After reading the research and discussing their options, the Selmeskis made the difficult decision to move to Colorado. They are originally from Tennessee, one of the remaining states that has not passed any sort of medical marijuana legislation, despite efforts to do so.
The term for people who leave their homes, their careers, and their lives to relocate to states with medical cannabis laws have been called “medical refugees.” They are forced to move to pursue a medical marijuana treatment when traditional health care and treatment options fail or are unattainable. Sometimes, these refugees come from states that do have medical marijuana legislation, but the laws are a patchwork quilt that allow for legal cannabis, but not allow for its cultivation or distribution. Even then, the price of medical marijuana can be so high that moving elsewhere is a better financial choice.
Colorado is popular among medical refugees, where medical marijuana is plentiful, easy to purchase, relatively affordable, and legal.
Before, Maggie was conscious, but she had trouble eating, and at times would scream because she was in so much pain. After moving to Colorado and taking Charlotte’s Web for three months, Maggie seizures decreased by about a third. She is now able to communicate with yes and no questions. She attends preschool, something that Shawn thought was impossible due to her epilepsy. Maggie can express herself and is making friends at school.
“She’s just awakened. She has her own little personality to her. She has her ways of communicating, and we’re continuing to unlock those ways of her expressing herself.” said Rachel. “When she starts giggling, she lights up the whole house.”
The Selmeskis admit there is a “major stigma” associated with giving a child what many still consider a gateway drug. But Rachel now sees medical marijuana as medicine. “For us, it was a no-brainer.”
Photo credit: Miracle 4 Maggie
With medical laws sweeping the nation, more and more patients are eligible for legal and safe access to cannabis — or at least the right to legally possess and consume it. As of June 2015, 14 states had passed “CBD-only” laws, programs designed to provide safe access to low-THC, high CBD (cannabidiol) cannabis oil for a limited set of diseases. In many states, including Iowa, Missouri, and Oklahoma, the only qualifying condition is epilepsy or debilitating seizures.
CBD-Only Laws Relatively Ineffective
Such laws are primarily motivated by childhood epilepsy and intended to curb the occurrence of seizures. Unfortunately, most are relatively ineffective and more a political stunt to gain reelection than an effort to truly help sick adults and children. Many of these patients gain no benefit from conventional pharmaceutical treatments. Many CBD-only states, however, are providing no safe access to an organic medicine that can easily be extracted into a concentrated form and given to children twice a day.
Often, such limited medical cannabis laws are given the name of a child patient who helped inspire them them or was cited as a reason to support the legislation, such as the Harper Grace Durval bill (Mississippi), the Haleigh’s Hope Act (Georgia), and the Alexis Carey bill (Idaho). Unfortunately, such laws serve a minority of childhood epilepsy sufferers. Current research and anecdotal evidence has revealed that CBD-only oils significantly reduce seizure activity in less than one-third of patients. Thus, seven out of 10 children with severe epileptic conditions like Dravet syndrome and Lennox-Gastaut syndrome do not gain effective improvement to their condition and a significant decrease in seizures from CBD only.
CBD-only states that limit the herbal extract to only epilepsy also discount the most common condition for which CBD oil is administered: Cancer. By allowing only patients suffering seizures or childhood epileptics to use CBD oil, politicians most intent on re-election discount a sizeable portion of their citizens and millions of sick people when they so tightly limit the scope of their state’s CBD law.
No Access to Medicine
Some experts have observed that a network of dispensaries that provide trained budtenders and sage advice to desperate patients is typically not available in most states that have implemented CBD-only medical cannabis laws. Laws that merely legalize and remove penalties from the possession or consumption of something like CBD oil, but that do nothing to provide safe access to medicine and consulting for patients are of little real help.
Some have opined that current CBD legislation in many states is merely a political ploy to satisfy medical cannabis and patient advocates and put up a roadblock to future legislation that is more comprehensive and less restrictive. In other words, the governors and legislatures of many conservative states have beaten cannabis activists and legalization groups like NORML and MPP (Marijuana Policy Project) to the punch with their own highly diluted, mostly ineffective laws.
Also, programs that cater to a single disease like epilepsy reach a very small portion of the overall patient population. According to the MPP:
“…only two percent of the registered patients in both Rhode Island and Colorado report seizures as their qualifying conditions.”
This reveals that CBD-only laws sometimes provide safe access to very few patients. Unfortunately, MPP reported that “The vast majority of [all medical cannabis] patients have symptoms that benefit from strains of marijuana that include more than trace amounts of THC.”
Critics and Lip Service
Vocal critics of CBD-only legislation include Paul Armentano, the Deputy Director of NORML. Armentano has called such laws “largely unworkable” and believes that this is due to the tight restrictions they place on doctors and patients. For example, Tennessee, Utah, and Florida provide access to CBD oil not via dispensaries and retail outlets like those in Portland, Seattle, Denver, and Los Angeles, but instead limit qualified patients to those participating in a special FDA clinical trial.
This obviously greatly limits participation and access, delivering help to very few actual patients after the hype of national press releases and photo opps has passed. In addition, patients in such states are shown no respect in terms of their desire or right to choose their own variety and brand of cannabis medicine from the retail outlet of their choice. Such limited access results in programs that are more lip service than actual help for millions of patients, their caregivers, and their families. In essence, many such programs are a monumental societal-level taunt, inviting very sick patients and desperate parents to participate in programs with very little actual effectiveness.
Patients are increasingly seeking high-CBD varieties of cannabis for treatment of many diseases and conditions, most notably cancer, epilepsy, multiple sclerosis, pain, and anxiety. There is also evidence that adult seizure patients, especially females, have a greater need for THC than other sufferers. Even if most states were actually providing safe, reliable access to high-quality, laboratory tested CBD oil containing no THC, the latest research indicates that such a limited approach that disregards the benefits of whole plant therapy helps few children — and actually increased seizure activity for some.
One study published in 2014 and conducted by Dr. Kevin Chapman involved 58 children, with an average age of seven, with “catastrophic forms of epilepsy.” It found that less than 30 percent of children treated with CBD-only oil containing very little or no THC experienced a reduction in seizures of 50 percent or greater. When THC is added to the mix, the majority of patients begin to experience a reduction in seizure activity. It is also estimated that many patients who gain marginal or even good efficacy from CBD-only oil would experience even greater therapeutic benefits if their medicine also contained some THC, even in small amounts or maybe at a 1:1 ratio with CBD.
A 2015 CBD Patient Survey conducted by Care by Design surveyed 2,495 patients between March and August of 2015. One of the survey’s key findings was the fact that CBD oils lacking THC are not as therapeutic or effective as those containing between 20 and 35 percent THC. Concluded the survey:
“THC matters. A higher ratio of CBD to THC does not result in better therapeutic outcomes. Patients using the 4:1 CBD-to-THC were the most likely to report a reduction in pain or discomfort….”
The survey goes on to note that patients who use an oil featuring a 2:1 CBD-to-THC ratio reported “the greatest improvement in overall wellbeing.” This confirms other research that has discovered that CBD and THC interact synergistically to enhance the therapeutic effect of the other, an example of the entourage effect.
Anecdotal Patient Testimonies
Many desperate parents of children with epilepsy have experimented with CBD oil. Unfortunately — as research has indicated — for the majority of them, oils high in CBD, but low in THC, do not work best for their children. Jason David has been treating his seven-year-old son, Jayden, an epilepsy sufferer with Dravet syndrome, with medical cannabis in one form or another since 2011. Dravet is one of the worst manifestations of epilepsy and does not respond to conventional treatments. Said David:
“I wish Charlotte’s Web [a CBD-only oil from Colorado] worked for all epileptic kids, but it doesn’t. The worst seizures Jayden ever had on medical cannabis was while we were using Charlotte’s Web.”
Brian Wilson, a former East Coast resident, moved to Colorado in 2014 because of its medical cannabis law. He is another parent of a child suffering from Dravet syndrome. In an interview with Ladybud in 2014, Wilson said:
“CBD is a very important part of the mix, but only part. We saw minor seizure control and developmental progress with CBD alone, but we didn’t see real seizure control until we added measurable levels of THC to the mix.”
Wilson also noted that the acidic precursor to THC, THC-A, provides significant therapeutic value to some patients. “This is highly individualized medicine. There is no magic bullet,” he added.
Some medical cannabis advocates believe that vague CBD-only bills “betray the science behind cannabis medicine.” Patients are finding that CBD, without any THC, is simply not effective or is marginally effect, when clearly superior solutions exist. In fact, several cases like that of Jason David and his son Jayden have been reported in which CBD only increased seizure disorders, often during times of illness, stress, or hormonal change.
More Research Necessary
Unfortunately, until cannabis is removed from Schedule I of the Controlled Substances Act of the federal government — which considers it as dangerous and addictive as heroin and bath salts — human trials and detailed research will fail to occur in the United States. Even cocaine and methamphetamine, truly addictive and dangerous drugs, are categorized as Schedule II and can be prescribed by a doctor.
Until Congress commits to comprehensive research into the medical efficacy of cannabis for a wide variety of diseases and ailments, tens of millions of patients throughout the country will needlessly suffer. More must be understood about the delicate and nuanced interplay of cannabinoids and terpenes and how they benefit patients with a variety of conditions. Until this happens, a naturally occurring herb that could be helping a sizable portion of the patient population will continue to be outlawed, denying the sick safe access to a 10,000-year-old organic medicine.
A brand new cannabis extract has officially been put on shelves in at least one clinic in the United Kingdom. The product is named for Charlotte Figi, a child who experienced up to 300 grand mal seizures a week until her parents tried medical marijuana after traditional medications and treatments did not help. After the first dose of the oil extract, her condition improved drastically. About the miraculous turnaround, Charlotte’s father, Matt Figi stated:
“I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option.”
Thanks to legislation that was passed on July 31, more families and patients in the United Kingdom now have access to the product, which is affectionately known as “Charlotte’s Web.” UK CBD is the first company in Britain to sell the oil, and the company’s owner and CEO, Nicolas Ellis, said:
“[W]e are extremely proud to partner with CW Botanicals and to legally add their exclusive Charlotte’s Web products to our already impressive range. Their passion and dedication to making such high quality products is already well known globally.”
Ellis adds that not only will the oil improve the lives of many who are struggling with severe epilepsy and other medical conditions, but those who simply wish to add it as a supplement will also benefit nutritionally. Hemp is full of vitamins, minerals and omega-3 and omega-6 fatty acids.
The U.K. is one prime example of shifting attitudes and beliefs surrounding marijuana and its health benefits. For example, one recent petition in the country calling for the legalization of cannabis for medicinal and personal use garnered over 200,000 signatures in less than a week.
Supporters include the famous CNN doctor Sanjay Gupta, who is known for reversing his opinion on medical marijuana and is now one of its strongest advocates. Thanks to voices like his and the stories from parents of children like Charlotte all over the world, lawmakers are now also beginning to see the value of using cannabis products like Charlotte’s Web as valuable treatments for a variety of medical conditions.
photo credit: UK CBD