*This story originally appeared on SFGATE.com and has been reposted with permission.
Five years ago, Stephanie Bohn’s daughter Sadie was struggling through life. The 5-year-old was having constant seizures and could barely make it through a day of school without being sent to the emergency room. Sadie has Rett syndrome, a rare neurological disorder that leads to severe physical impairments, and traditional pharmaceuticals were unable to improve her symptoms. Sadie’s doctors recommended Bohn speak with a medical cannabis specialist about her daughter.
Sadie started taking oil rich in CBD, a nonintoxicating cannabis compound. After three years of fine-tuning her cannabis medication, she’s now living a dramatically different life. She’s gone from having dozens of seizures a day to being seizure-free for 11 months straight.
“We’ve seen remarkable outcomes,” Bohn, who lives in Los Angeles, recently told SFGATE. “All things considered, she’s thriving, and that’s because of CBD. … She probably wouldn’t be alive today if it weren’t for CBD.”
But the tinctures that have been so crucial for Sadie may soon be nearly impossible to acquire. Assembly Bill 2223, as currently written, would make it illegal for Bohn to buy the cannabis oil that has been so helpful to her daughter. If the law passes, Bohn said, she would need to leave California to care for Sadie.
The bill’s sponsor, Assembly Majority Leader Cecilia Aguiar-Curry, is selling AB 2223 as a way to crack down on unregulated intoxicants being sold outside the state’s tightly controlled legal cannabis market. It’s the latest move in officials’ fight against hemp products; thanks to a messily worded federal law Congress passed in 2018, intoxicating drugs can be categorized as hemp and sold in California without facing the same regulations as cannabis products.
Sadie Bohn, right, pictured with her family, Andy, Stephanie and Lucy. Sadie uses medical cannabis to treat her seizures. Photo: Bohn Family
The problem is that the hemp market also provides the high-CBD, low-THC products like the oil Sadie relies on. AB 2223 would make these specialized medical hemp products much more difficult to acquire, or outright illegal in some cases.
Dr. Bonni Goldstein, Sadie’s doctor, said the law is “completely catastrophic” for her pediatric epilepsy and cancer patients because it will make it impossible for them to get the medications they depend on.
“As a physician and a human, I’m furious,” Goldstein said in an interview with SFGATE. “This is not how you treat the most vulnerable people in our society. If this was their child, what would they do? What would they want?”
California’s fight with hemp
Pediatric patients like Sadie are caught in a battle that has been brewing since 2018, when the federal government legalized industrial hemp. Hemp has historically been a term used to describe the non-drug uses of the cannabis plant, like as fiber for clothing or hemp seeds for food. But thanks to a poorly worded definition in the federal law, Congress inadvertently redefined hemp to include a wide variety of intoxicating drugs.
A sign at a Virginia hemp farm to dissuade people from stealing the plants, which look exactly like marijuana. Photo: NICHOLAS KAMM / Getty
The hemp industry has rapidly grown since then, and the lines between hemp and marijuana have become incredibly blurred. Hemp products now include synthetically produced cannabinoids like Delta-8-THC loaded into vape pens, cannabis flower that is functionally the same as marijuana and highly potent edibles.
The hemp market also includes medical cannabis products like the tinctures Sadie takes, which are loaded with massive doses of CBD, a nonintoxicating cannabis compound, as well as small doses of THC. CBD products are frequently used to treat a wide range of disorders like anxiety and sleep disturbances, and in 2018, the FDA approved a CBD drug to treat severe forms of epilepsy.
The distinction between hemp and marijuana has primarily become just a regulatory question. Marijuana is tightly regulated by states like California, which enforce strict safety rules, institute high taxes and limit youth access to the products by selling them only through state-licensed retailers. Hemp, on the other hand, is subject to almost no regulations and can be sold tax-free online and at just about any type of store.
Cannabis Plants at a CBD Oil Hemp Farm in Colorado Photo: Jeremy Poland / Getty
Since the 2018 federal law, California regulators have tried to recall individual intoxicating hemp products, and lawmakers tried to rein in the entire hemp market in 2021 with a law that attempted to limit the sale of intoxicating hemp products outside dispensaries. Still, the market has continued to grow.
AB 2223 is the state’s latest move against hemp. It attempts to do two things, the first of which is bring some of the hemp market into the state stores by allowing recreational cannabis companies to import and sell hemp products. It would also block the sale of any hemp products that contain more than 0.3% THC by weight or that have more than 1 milligram of THC total, with the state arguing anything including more than those amounts would be an intoxicating product.
But pediatric patients like Sadie use CBD oil that has more THC than those limits allow. The bill unanimously passed the Assembly in May and is working through the state Senate. The hemp industry is now an active target in Sacramento, and pediatric patients are getting caught in the crossfire.
‘Catastrophic oversight’
Aguiar-Curry has sold her bill as the best way to fight dangerous hemp intoxicants. “The bottom line is that if it gets you high, it should not be sold outside a dispensary. Period,” Aguiar-Curry said in a May news release.
Large number of CBD oil bottles in rows on production lines inside a pharmaceutical factory. Photo: luza studios / Getty
The problem is that Aguiar-Curry’s 1 mg THC limit directly targets the CBD oil Bohn and other medical cannabis patients rely on, even though this medical oil is unlikely to be used by anyone to get high. The oil Sadie uses primarily contains CBD, but it has a small amount of THC as well. In Sadie’s medical cannabis tincture, for every milligram of THC, there are 20 mg of CBD.
Despite the presence of THC, these products are very different from the hemp THC vape pens and gummies that people are actually buying to get inebriated, according to Goldstein.
“You would never buy a bottle like these to get high. It’s just not happening,” Goldstein told SFGATE.
Aguiar-Curry said in a statement to SFGATE that she is exploring possibly allowing state-licensed stores to import the exact oil patients like Sadie are using but said that any modifications to the law need to be “carefully crafted because any crack in the prohibition of THC in the non-dispensary marketplace is just going to result in another round of creative manufacturers producing another series of illegal drugs to sell to children.”
Still, she added, “I care about these families.”
Goldstein, Sadie Bohn’s doctor, said the law as written is a “travesty” and warned that her patients could die if they are deprived of medication that has kept them seizure-free. She argued that any sort of carveout in AB 2223 that seeks to allow these hemp-based products into state stores — which Aguiar-Curry indicated would be a big part of her solution to this issue — may be unrealistic on a business level.
Sadie Bohn pictured with her parents, Andy and Stephanie; her sister, Lucy; and her caregiver, Mataya Mandorino. Photo: Bohn family
Goldstein said her patients take as much as 1,600 mg of CBD a day, and they use specialized tinctures that can contain 6,000 mg of CBD in a single bottle. Retail stores in California rarely have bottles with more than 600 mg of CBD. That means her patients would need to be using multiple bottles a day, which would increase their medication costs by 80% to 90%, according to Goldstein. There’s also the fact that products like this are so specialized for acute medical uses that traditional dispensaries may not be interested in carrying them, she said.
Either way, Goldstein said, the fundamental problem is that the law conflates life-saving medical hemp products with the sorts of synthetic cannabinoid products that would get a user high. And now, she feels the state is recklessly telling pediatric patients to try other medicines that likely won’t work.
“These are absolutely not interchangeable medicines,” Goldstein said. “It would be unethical and immoral to tell a family to stop using something that is working for their medically complex child.”
