LANCASTER COUNTY, Va. — A Lancaster County mother has spent years fighting for her daughter life. Now she says she may have to fight all over again.
Haley Smith, 26, has Dravet syndrome, a rare form of epilepsy. She began having seizures at five months of age and was suffering more than 1,000 seizures a year before her mother, Lisa Smith, successfully lobbied for a change in Virginia state law in 2015 that allowed Haley to begin using Charlotte's Web CBD oil. The family orders the oil from Colorado.
Since then, Lisa says Haley's seizures have become less frequent each year.
"Now, at the age of 26 or almost 26, she's having only two to four a month, which is remarkable. It's the best she's done in her entire life," Lisa said. "Before CBD she was merely existing, and now she's living."
That progress is now at risk. Starting Aug. 15, changes to Virginia's hemp law will eliminate an exemption that allows products with higher THC levels when paired with significantly larger amounts of CBD. Haley's oil contains 180 milligrams of THC — well above Virginia's normal limit for hemp products. Under the state budget approved last month, it will be illegal for Haley's CBD oil to be sold as hemp in Virginia beginning Aug. 15.
"I don't think it's fair that we're taking away something that we really fought for in 2015, and it's done wonders for her and so many other people too," Lisa said.
Democratic Sen. LaShrecse Aird was a key proponent of the change. In a statement, she said the law is not intended to interfere with medical care.
"I have deep compassion for any family trying to access treatment that improves a loved one's quality of life, especially when it involves a child with serious medical needs. That is exactly why Virginia has allowed access to medical cannabis products for seizure-related conditions, and for any condition for which a practitioner recommends them, since 2015. Nothing in this framework takes away access to safe, tested products through our existing medical cannabis system. The purpose of closing the 25:1 loophole is not to interfere with legitimate medical care, it is to ensure products being sold broadly in the marketplace meet basic safety, testing, and accountability standards," Aird said.
Lisa says if Haley is forced to go without her current CBD oil, the consequences could be severe.
"We could have a hospitalization, which we've had before, where she was induced into a coma, or we could be planning a funeral," Lisa said.
Haley's CBD oil will also become illegal at the federal level in November. Lisa says she is working with some members of Congress to change that.
"No one would really understand unless they're living this," Lisa said.
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