CBD oil helped control the 1,000 seizures she had a year. These bills may keep it from them.

Posted at 6:35 PM, Mar 22, 2023
and last updated 2023-03-22 18:35:18-04

NORTHERN NECK, Va. -- The postcard-worthy coastal scenes of the Northern Neck are quite literally a thousand miles away from Colorado.

A family who calls the Northern Neck home says the product that controls their daughter’s seizures that they ship from Colorado might not be available here anymore because of a bill that sits on Governor Glenn Youngkin’s desk.

Lisa Smith and her daughter Haley sat in their kitchen Tuesday afternoon, light-heartedly quizzing each other on where family members live in the U.S. using a colorful map.

Lisa said now 22-year-old Haley likely would not have been able to do this basic geography without the use of Charlotte’s Web CBD oil.

“It's been life-changing. I say she was merely existing prior to it, and now she lives,” Smith said.

Years ago, Haley was diagnosed with Dravet Syndrome, experiencing multiple daily seizures for several years. Lisa said before beginning to take CBD oil, Haley would experience more than 1,000 seizures a year and 17 different medical treatments were not successful.

“There was no quality of life for her. There was no quality of life for anyone else in the family either because you're just constantly in crisis mode,” she said.

In 2015, after successfully lobbying for a change in state law, Haley began using the Charlotte’s Web product. Lisa said her seizures began to become less frequent each year, and this past December she only had two the entire month.

Eight years of drastic improvement with her seizures and quality of life are now in limbo, according to Smith, after company officials sent her a note saying they would no longer be able to ship Haley’s product to Virginia if a bill regulating hemp products is signed into law as currently written.

“I knew that there was a bill addressing the Delta-8 and the man-made Delta products, which I'm all for, but I had no idea it was going to affect us,” Smith said.

SB 903 and HB 2294 were designed to crack down on the sale of unregulated, synthetic THC products, like Delta-8 and Delta-9, that are now widely available in Virginia stores. Emergency rooms have reported an uptick in the number of children poisoned by those products recently.

Smith said the concern for them lies with the THC per package limit the bill includes. It caps the level of THC included in hemp-derived products at two milligrams. THC is naturally occurring in hemp, but the levels are low.

The bottle Haley smith uses contains more than that even though each she uses is well below that limit.

“It is benign, it does not cause any kind of high,” Smith said. “This is an unintended consequence; they did not think of us.”

The bills, which passed the General Assembly with bipartisan backing, will place testing and packaging requirements on synthetic THC products as well. The Virginia Hospital and Healthcare Association and Virginia Sheriff’s Association support the bill as written.

“Make no mistake: The products targeted by HB 2294 pose serious health risks. They are untested. They have labels that contain misleading or inaccurate information. In some cases, they have labels that omit important information about the product’s contents,” wrote Del. Terry Kilgore (R-Lee) in anop-ed published earlier this month.

Smith said she hopes lawmakers take a scalpel to the bill, not a hammer, since any change in Haley’s regiment can have a dramatic impact on her seizures.

“That simple change could make it worse, so switching off something that has worked for her for eight years and trying something else, you know, we go into the unknown. What we have is known and we have control,” Smith said. “It is not what this bill was intended to stop, but it is going to end it for a lot of people.”

Governor Youngkin has until March 27 to take action on the bill, either signing it, vetoing it completely, or sending it back to the legislature with amendments.

CBS 6 asked the Governor’s Office where they stand on the bills. A spokesperson sent the following statement:

“The final text of the bill is in review and the Administration is meeting with stakeholders. The Governor has made cracking down on dangerous THC intoxicants, including those synthesized from hemp, a priority to protect public safety. The conference report for HB2294 and SB903 does that. The Governor looks forward to the enhanced enforcement this will bring to keep dangerous intoxicants off the shelves and away from Virginia children.”

You can read more content on the concern expressed by local hemp farmers and the reason medical groups support the bills.

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