Why are CBD permit holders not renewing?

This morning the Health and Human Services Interim Committee heard testimony from Dr. Francis Filloux, Chief of the Division of Pediatric Neurology at the University of Utah School of Medicine and Primary Children’s Medical Center. The presentation was a report on the use of the Hemp Registry created to allow Utahs with intractable epilepsy to gain legal access to high-CBD cannabis products.

This registry was created as a result of House Bill 105, sponsored in 2014 by Representative Gage Froerer, following a huge wave of media coverage resulting from an interview we conducted with a mother of a child with severe epilepsy who decided to publicly advocate for the legal use of cannabis.

Last October, a voluntary, 12-item questionnaire was mailed to the 139 participants who had by that point participated in the program. 46 people responded. Here are a few data points shared based on this limited sample set:

• 22% of participants reported that their use of the CBD product led to a greater than 50% reduction in seizures.
• 30% of respondents said they experienced no improvement in reducing seizures. 30% reported things got “a whole lot better.”
• No serious, life-threatening effects were reported.
• 66% of respondents perceived that the extract provided some additional benefit apart from seizure control: improved sleep, better communication, alertness, etc.

Interestingly, at that point, only 31% of permit holders who were eligible to renew their card had actually done so.

After all the lobbying effort and media effort to get this law passed a few years ago, why were so few of the families re-enrolling to continue using CBD?

This question was posed to Dr. Filloux by one of the committee members, as the doctor himself had been an advocate for putting this law in place. The doctor clearly sounded unimpressed with the data. “Have we helped [these patients] as much as you hoped?” the legislator asked.

“That’s difficult to answer,” he replied. “The degree of improvement” in seizure control “seems modest at best.”

Part of the answer is an uncomfortable one for legislators who perceive this program to be the ideal legal remedy for epileptic patients—it’s simply not enough.

I know many of these families personally. Many of them have children with epilepsy, and they held out hope that their child would experience the same tremendous results with CBD as did Charlotte Figi in Colorado.

But in too many cases, CBD didn’t produce the same effect. And so some of the families have decided not to renew their permit and instead pursue illegal cannabis options that include THC.

And many of them are seeing a reduction in both seizure frequency and severity using a mixture of THC and CBD.

But they’re considered criminals. And they’re not going to “out” themselves on a survey they were sent by the government about their cannabis use.

We featured one such story in the video we released last week—a mother of an epileptic boy who is experiencing improvement using an illegal product.

HB105 was a good first step, but has since proven to be quite limited compared to what is actually needed for seizure control—to say nothing of the benefits THC-rich cannabis can provide for those with cancer, chronic pain, and a host of other conditions apart from epilepsy alone.