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Florida's first medical marijuana is now available, but patients say the wait for healing is not over 

Anneliese Clark's house doesn't stand out among her neighbors' in her suburban neighborhood outside Jacksonville. Down the street and around the cul-de-sac, the two-story dwellings each have a manicured lawn, multiple cars in a long driveway and a shady tree. Inside Clark's house, the mother of four has two dogs, a lively kitchen and a black refrigerator plastered with photos of her kids.

That fridge is where the differences start. Among the snapshots of her children, Clark has attached a piece of paper she calls her "arrest plan."

The plan is a list of names, numbers and information that could be helpful if Clark is arrested for buying medical marijuana for her youngest, 11-year-old Christina. Unable to talk, Christina curls up in a fetal position in her mom's lap, occasionally throwing this reporter a blue-eyed peek and a small smile. Her seizures began three months after she was born, and her first anti-epileptic drug was phenobarbital. Doctor after doctor prescribed drug after drug for her. Christina's seizures, sometimes 80 to 100 per day, waxed and waned, depending on her current drug and diet. The family traveled to Germany and China for stem cell treatments; in one year, Christina had three brain surgeries, which left her with half a brain and the family with $2 million in medical bills. The last drug, No. 16, left Christina without the ability to walk or go the bathroom, so they decided to insert a feeding tube.

At one point, doctors told Clark just to take her daughter home and love her.

But then, through social media and word of mouth, Clark learned about the use of medical marijuana-based oils to treat kids with seizures and about Charlotte Figi, a Colorado girl whose seizures were reduced from 300 a week to about twice a month using oils from a marijuana strain later named after her: Charlotte's Web. The strain is low in tetrahydrocannabinol (THC), the chemical that creates a euphoric high, but it has increased amounts of cannabidiol (CBD), which reportedly has medical benefits. Since 2013, when Charlotte's story first aired on CNN, many parents have decided to try medical marijuana to treat their children.

For Christina, the results were astounding. She stopped having hundreds of seizures per week, then stopped having them for months.

"She would have died had I not intervened," Clark says as Christina gives her a kiss on the cheek. Clark says her daughter lost the ability to give kisses for years. "That's how bad she was. I did what I felt was right for her, and that was to try whatever I could, which turned out to be the least harmful and most beneficial."

click to enlarge PHOTO BY MONIVETTE CORDEIRO
  • Photo by Monivette Cordeiro

But after Clark ran out of the first sample of medical marijuana given to her, it became increasingly difficult to acquire more. She traveled to other states to learn more about the drug and its particularities and differences from recreational marijuana. Sometimes after hearing her story, people would hand her street weed, not realizing it was useless for Christina because it had no CBD. When Clark couldn't get medical marijuana, Christina would regress: not eating by mouth, sleeping constantly, drooling.

Clark joined the CannaMoms, a medical marijuana advocacy group of Florida mothers who want the product for their children. They lobbied the Florida Legislature, and in 2014 Gov. Rick Scott signed the "Compassionate Medical Cannabis Act," allowing nurseries to grow marijuana low in THC for patients with cancer and medical conditions that cause chronic seizures or muscle spasms.

But in the two years since, parents and their sick children have waited and waited and waited as red tape and a legal fight between the state Department of Health and prospective growers have mired Florida's path to medical marijuana. Some families moved to other states more friendly to the plant, while Clark and many others took matters into their own hands as the state lagged behind and formed underground networks to get medical marijuana for their children, even if it meant being labeled as criminals.

Last week, Tallahassee grower and dispensary Trulieve announced it was the first dispensary in the state to receive formal authorization from the Florida Department of Health to begin dispensing medical marijuana. The company's CEO, Kim Rivers, said their products would be available to patients as early as Tuesday, July 26.

For Clark and other parents, the news is bittersweet. Florida had asked them for time they didn't have. Children and adult patients died as the months passed by. While some patients may finally start to get relief this month, some say the law limits the strength of the product and it will be a gamble to try medical marijuana from nurseries that are growing it for the first time. And patients with conditions not on the list won't be able to try medical marijuana; they have to wait to see whether voters pass Amendment 2 in November.

"In Florida, you only have three choices," Clark says. "You die, you treat yourself or you leave."

Why has it taken so long to get limited medical marijuana in the state? Jay Wolfson, a health law professor at the University of South Florida, says the answer is unfortunately a simple one: politics and money.

At first, the state Health Department was going to use a lottery process to award licenses for nurseries to grow and dispense medical marijuana, but later, they were compelled to come up with a different licensing system and chose to make it a competitive process. Out of the 24 nurseries across the state that applied, health officials chose five in different regions of the state after going through 30,000 pages of material.

Other nurseries filed lawsuits against the Health Department regarding the ways the chosen five were picked, which, after multiple legal challenges, led to one more nursery being added to the original five approved dispensing organizations. Since the first law in 2014, legislators also passed the "Right to Try Act," which lets terminally ill patients try full-strength medical marijuana high in THC for their pain even though it's not approved under the U.S. Food and Drug Administration. Health officials require patients who need low-THC medical cannabis to visit a state-approved physician – or two, if they're under 18 – who will put them on the Compassionate Use Registry. Being on the registry allows patients to go to the dispensing organization to pick up the product. Terminal patients who only have a year to live must confirm their diagnoses with two physicians for full-strength cannabis.

"The process itself, reflecting the political and financial interests and clashes, is naturally slow, and encumbered by lawsuits, regulatory process and the lack of [an] accepted statewide model for how to manage even the practical aspects of medical marijuana," Wolfson says.

Central Florida's Treadwell Nursery is one of the applicants challenging the state Health Department's rules. Derek Bruce, an attorney for Treadwell, says his clients had the third-highest rated application in the state but was denied a license simply because it was in the same region as the two highest-rated nurseries. Treadwell Nursery did their homework, Bruce says, researching the products, getting their finances in order and building a greenhouse.

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Jammie Treadwell, chief operating officer for the nursery, says she's currently in Oregon researching best practices for the medical cannabis industry. She says her trip has made her passionate about returning to Florida and, she hopes, getting permission to start growing medical marijuana in the nursery's currently empty greenhouse.

"The main thing is to see the medicine get to patients who need it and see the industry get started in a responsible way," she says. "My family and my team really just want to support getting this industry started."

Joey Fowler was sitting in his father's hospital room in Orlando when he saw the news on Orlando Weekly's Facebook page that Floridian patients could get medical marijuana as early as this week.

"This law is absolute horse shit," he wrote angrily in the comments section.

On the phone, Fowler says his father suffered two strokes within the past month and a half that left him unable to use his left arm and leg. At the hospital, they thought he had a tumor, though later when they operated, they discovered it was radiation necrosis, a side effect of radiation therapy that affects the central nervous system. As they were set to discharge his father, doctors also discovered gastrointestinal bleeding, and the ensuing prescribed medical narcotics have left him bedridden.

Fowler says he heard medical marijuana can do wonders for brain trauma and suggested it to his father's neuropsychologist, who Fowler says agreed that marijuana could improve his father's health. But first, Fowler and his family have to find the money and resources to get his dad to a state where he can try medical marijuana for his condition. Currently, Florida wouldn't allow John Fowler to use low-THC cannabis, and since he isn't considered a terminal patient, he wouldn't be allowed to try full-strength cannabis either.

"My mom was a little concerned," he says. "She's of that generation that thinks marijuana is bad and that it makes you addicted. My dad was nervous, too, because he's never smoked a joint, but when his doctor was open to medical marijuana, he became more used to the idea."

Fowler's father could qualify if voters decide they like Amendment 2 in November, which adds PTSD, cancer, glaucoma, epilepsy, HIV, AIDS, ALS, Crohn's disease, Parkinson's disease and multiple sclerosis to the list of conditions that would qualify for medical marijuana use.

Some have echoed Fowler's sentiments on the law, though there is a growing curiosity to see how Trulieve's medical marijuana will pan out.

The low-THC medical marijuana that will soon be available through Trulieve will be sold to patients in a processed form through different mediums, such as capsules, syringes, tinctures and vaporizers, says Trulieve CEO Kim Rivers. State Health Department employees have been "consummate professionals throughout this entire process," Rivers says.

"We're very excited," she says. "This is a historic moment for us and for patients who have been in need of this medicine. We're thrilled to be able to offer our products very soon throughout the state." 

Mara Gambineri, spokeswoman for the state Health Department, says no other dispensing organizations have received the final approval as of press time.

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Monica Russell, spokeswoman for Surterra Therapeutics, near Tampa, says the dispensary organization is waiting for final approval to process the low-THC marijuana it has already cultivated in a secret location under heavy guard. One of their main goals is to make sure the product is consistent, especially for the children taking it.

Still, some parents are worried about the kind of product they'll get from these new dispensing organizations.

Holley Moseley's 13-year-old daughter RayAnn has Dravet Syndrome, which causes frequent seizures that can be deadly. Moseley is executive director in Florida for the Colorado-based advocacy group Realm of Caring; she and her family have an agreement with a Jacksonville nursery and the Colorado developers of Charlotte's Web, Stanley Brothers, to bring that particular brand of low-THC medical marijuana to Florida if they win a legal challenge against the state Health Department. Moseley says many Florida parents who've been purchasing the Charlotte's Web strain have tried so many different medications on their children that, having finally found a formula that works, they may not want any other product, no matter how similar it sounds.

"I will be registered, but I don't think I'll get it," she says. "I don't know if it's safe, if it's been lab-tested, if it has no mold, no pesticides, no heavy metals. I want to see the data. Show me how many patients have safely used this product."

Theresa, who asked Orlando Weekly not to use her last name for fear of criminal prosecution, says her 11-year-old daughter started on Charlotte's Web last August, going from 100 seizures a week to months of peace. At first, the Orlando mother didn't want to let her daughter use drugs, but after learning about Charlotte Figi's experience, she felt she had to give medical marijuana a chance. It costs her $100 every week to get the oil-based product for her daughter.

"She's made so much progress between now and August," Theresa says. "I pray we have other options with these growers, because if that low-THC doesn't work, we're going to need something else."

Christina Clark, from the beginning of this story, takes a higher ratio of THC and CBD than the current composition of allowable medical marijuana, her mother says. Anneliese Clark feels that the state-approved levels are limiting and should be tailored to each patient and their condition instead of a one-size-fits-all. Even though Christina could die in her sleep from a seizure at any time, Clark would not be able to get her on a terminal patients list for full-strength cannabis. At a TED Talk in March, Clark told a crowd that on her current cannabis regimen, her daughter's blue eyes shine bright again and the 11-year-old is trying to walk again.

"We don't have the soccer schedule [on our fridge], we have the arrest plan," she says. "And I would rather be judged by 12 jurors than have my daughter carried by six pallbearers."

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