One of my good friends traveled to Tallahassee last week to attend the Supreme Court Hearing on a proposed medical marijuana amendment. I sat down with him to talk about his trip, Charlotte’s Web, and why this cause is so important to him.
There’s a new drug called Charlotte’s Web, which is made from a specific strain of marijuana – local to Colorado that is exceptionally low in THC (the psychoactive chemical that causes a ‘high’) and exceptionally high in a chemical called cannabidiol that, itself has no intoxicating effects, but seems to regulate overactive brain signals.
This is an important finding because there are many children suffering from devastating and frequent seizures that established medications are unable to effectively treat.
The cannabidiol oil that’s in Charlotte’s Web has not yet been tested by the Food and Drug Administration and there are no scientific studies of its effectiveness or its risks in children. It is considered an illegal drug with no medicinal potential by the federal government.
However, studies on animals and small groups of humans have shown the substance reduces seizures, but legal and cultural barriers have kept most epilepsy doctors from viewing it as a legitimate treatment, even in the 20 states where medical marijuana is legal.
Charlotte’s Web is named for a little girl whose mother, Paige Figi sought out the oil from a family of brothers who were growing medical marijuana for local dispensaries in Colorado. The Stanley brothers are currently the only ones who can supply this life saving drug for desperate families because of federal laws that strictly prohibit its distribution through the mail.
Charlotte has a severe form of epilepsy, called Dravet Syndrome. Two years ago Figi started giving the then-5-year-old a daily dose of oil made from a special marijuana strain produced in Colorado. Before the oil Charlotte had hundreds of seizures per week. Nowadays, Charlotte has on average less than one per week. Once nearly catatonic, today she does all the things girls her age do.
News of Charlotte’s improvement turned Figi into an unwitting poster mom for medical marijuana.
During the last few months, she has watched two children in other states with the same seizure disorder as her daughter die without ever being able to try the oil.
After a special report on Charlotte aired on CNN in August, the Stanleys began getting about 4,000 calls per month. Almost a hundred families have moved to Colorado since then to get the oil. Another 171 are on a waiting list and could move in the next several months. The migration has driven the number of registered pediatric medical marijuana users in the state from four in 2012 to 81 as of October. Another 171 are on a waiting list for the oil.
A good friend of mine has a young child who has been diagnosed with epilepsy. The first indication of a problem wasn’t until the baby was about 2 months old. At this time, he was diagnosed with Sandifer’s Syndrome – acid reflux that is accompanied with a specific movement disorder. Because of this, babies with Sandifer’s are often misdiagnosed as having epileptic seizures but the syndrome has no neurological issues, unlike an actual seizure disorder. In the case of my friend’s son, this was actually the opposite – he was in fact suffering from epileptic seizures but was misdiagnosed with the less-serious Sandifer’s syndrome.
At first, the seizures occurred about 3 times a day but then became as often as every 10 minutes. It was at that time that his son was officially diagnosed with epilepsy.
At about 6 months, the baby underwent surgical procedures to give him both a feeding tube and a tracheostomy (a breathing tube placed in the front of his neck) due to complications from the seizures. He was also placed under a medically-induced coma for 3 months to monitor his brain waves and to see if the disorder would resolve itself.
Currently, on 12 meds – 5 of which are specifically for the seizures – the rest manage the side effects from the potent seizure meds – and requires around-the-clock nursing.
He says, “Medical marijuana gives us hope. We want it to be an option, for ourselves and others families like us. Nothing is guaranteed, not even the meds he’s on now.”
He goes on to say that the medications are basically stabilizing his son but they don’t improve his quality of life. Between the developmental delays from the seizures and the severe side effects from the medications, at 16 months, his son is only able to raise his head. Where he once displayed his budding personality, he is now too sleepy from all of the heavy medications.
Hearing for Medical Marijuana in Tallahassee
Florida Supreme Court justices held a one-hour, sometimes testy hearing Thursday on a proposed medical marijuana amendment to determine the constitutionality of ballot language.
Patients who are “prescribed” medical marijuana would have an identification card and be tracked by the health department.
In the past few months Figi along with the Stanley brothers have flown to Vermont, California, Pennsylvania, Oklahoma, Florida and Washington D.C. to tell Charlotte’s story.
Their goal is to get Charlotte’s Web to as many families as possible, while also establishing a sustainable business that can provide those in need with a safe and reliable product. Together they are setting up partnerships to produce the oil in states where it is legal, and pushing to change laws in states where it is not.
Twenty states and the District of Columbia now allow medical marijuana.
Opposing medical marijuana may eventually hurt politicians because a recent poll shows that 82 percent of Florida voters support it.