Florida families fear hemp restrictions will deny children life-changing CBD products

Tracy and Riley Thaxton. Image courtesy Charlotte's Web.

The happiest moments for 17-year-old Riley Berg involve country music playing from her iPad speakers. Severely autistic and nonverbal, the Panama City teen endures therapeutic sessions for the chance to earn device time to consume her favorite Jason Aldean and Miranda Lambert videos.

It’s a simple joy, but Riley’s mother Tracy Thaxton-Berg feels tickled that her daughter can enjoy it. Not so long ago, a constant fear of drop seizures held the family’s attention with a more hostile grip than any steel guitar lick. It took visits to four neurologists to diagnose the seizures, a process made more challenging since Riley couldn’t tell physicians exactly how she felt before episodes happened.

Riley hasn’t suffered a seizure in years, something the family credits to Charlotte’s Web. That’s a brand of cannabidiol product Tracy Thaxton-Berg learned about first in a Dateline report before consulting with professionals about dosages.

When Riley started taking the CBD oil, the family was told to give it six months for benefits to kick in. They saw a decrease in seizures within six days, and the condition stopped completely within seven months. In April, Riley will have gone eight years since her last seizure.

But Tracy Thaxton-Berg worries now the Legislature will force the product off shelves. Legislation seeking to cap the amount delta-9 THC in oils has the hemp industry on high alert and the Thaxton-Bergs wondering if they should consider leaving the state.

“The fact that they’re trying to change it now, and lump (Charlotte’s Web) in with all of this bad stuff, it’s terrifying to us,” Tracy Thaxton-Berg said. “I don’t know what that means. Will we have to move again?”

Lawmakers, for their part, say their intention isn’t to force all cannabidiol products like CBD out of Florida. Rep. Tommy Gregory, a Lakewood Ranch Republican, has carried legislation (HB 1613) which seeks to address a variety of products that appeared on the market after the federal Farm Bill passed in 2018.

Gregory’s bill expands packaging requirements currently applicable to hemp extract distributed or sold in the state so they also apply to hemp extracts manufactured, delivered, held or sold here.

“There’s a split in the hemp industry between those who want CBD oils and are making those, and those who want to get as close as they can get to recreational drug use,” Gregory said.

Gregory’s legislation would impact any products with more than 2 milligrams of delta-9 THC per serving or 10 milligrams per package.

Jared Stanley, chief commercial officer and co-founder of Charlotte’s Web, said his company actually supports the intent of the bill, meaning the regulation of intoxicating products, but would rather lawmakers focus on synthetics. He said the bill as written now would impact valuable therapeutic products that contain trace amounts of delta-9 THC.

“Unfortunately, we don’t understand the full spectrum CBD products and what is referred in full spectrum as naturally occurring delta-9 THC,” Stanley said.

Gregory said non-abusable products shouldn’t fear the proposed legislation. “I suppose this all depends what they mean by trace amounts,” the Representative said.

But Stanley points to what happened in a highly regulated cannabis market in Canada, which has 10-milligram per package limits on products already. “What companies have done is they have to make their products and packaging in much smaller packaging units,” he said.

He said families will be impacted directly if Florida goes a similar route. A chief problem, he said, is that THC simply can’t be manipulated out of its current form when manufacturers produce their products.

“By imposing a 10-milligram THC per container limit, it would essentially wipe out all highly therapeutic full-spectrum CBD products,” Stanley said, “which are the products Charlotte’s Web makes and serves to consumers like Riley, but also to veterans, athletes and more in the state of Florida.”

At this point, Riley has relied on the product for about half her life, with no side effects. She started using it when her family lived in Texas, but has continued in the past three years since they returned to Florida; Tracy Thaxton-Berg was born in Tallahassee and grew up in Panama City.

Riley primarily has relied on the CBD oils from Charlotte’s Web but also uses gummies to handle anxiety and sometimes takes another sleep gummy at night.

Tracy Thaxton-Berg considers it a miracle product especially since her daughter has responded negatively her whole life to artificial chemicals in many pharmaceutical drugs. Riley has a rare genetic condition, SCN2A, tied to her seizures and autism, but which also appears to prompt negative reactions to numerous medications.

She’s reached out to lawmakers like Rep. Griff Griffitts and Sen. Jay Trumbull, who represent Panama City in the Legislature. Now she wants the full Legislature to know her family’s story and to hear her pleas.

“Do not limit our access to this particular product. This has been life changing,” she said.

“Like I said, my child can’t take something else in place of this. She’s not going to respond to the pharmaceuticals that are available. This is vital to us. This is life-changing for Riley. Please change the wording on this. Do not limit our access.”