George Hendrickson uses a syringe feed his son, Eliyah Hendrickson, 3, who has Dravet syndrome, in their camper in Sioux Falls, S.D., in August 2015. The family of five is eyeing a dauntingly expensive move from Sioux Falls to Colorado, where Eliyah was first treated with cannabidiol last year. (Joe Ahlquist, The Argus Leader via AP)

Hearts sink as South Dakota rejects bill promoting use of CBD for epilepsy

'Good old South Dakota, home of the dinosaurs,' says saddened father of toddler with severe seizures; opponents of bill said cannabidiol could be used by people wanting to get high

PIERRE, S.D. — George Hendrickson watched this week as his immediate hopes for treating his young son with a non-intoxicating compound in cannabis went down with a bill in the South Dakota Legislature.

House lawmakers blocked a measure that would have allowed doctors to prescribe preparations of the compound, called cannabidiol, that were low in THC, the psychoactive component found in marijuana.

It was the bill’s last stop before reaching Gov. Dennis Daugaard’s desk, but opponents argued that law enforcement opposed the bill and that people might use it to get high.

Hendrickson’s heart sank, but Tuesday’s vote wasn’t a surprise. “Good old South Dakota, home of the dinosaurs,” he said Thursday.

His plans for 3-year-old Eliyah, whose rare type of intractable epilepsy has previously been helped by the compound, shift quickly with a change in his son’s condition. The family of five is eyeing a dauntingly expensive move from Sioux Falls to Colorado, where Eliyah was first treated with cannabidiol last year.

Hendrickson, 45, is also watching — with some hope — a broader ballot measure that would allow people with serious medical conditions to use marijuana.

But he also has a camper ready and a place to put it near Eliyah’s hospital in Denver if an emergency requires the family to split up.

Eliyah has Dravet syndrome. Patients experience frequent, severe and potentially life-threatening seizures that typically start before they are 1-year-old. Standard epilepsy drugs often don’t help control the seizures, which leaves patients with few treatment options.

When Eliyah briefly took cannabidiol last year — during the final stages of weaning him off a powerful barbiturate — it was like the family had a new son. He played with his parents and climbed the stairs at a house they were looking at in Colorado, rather than simply staring through them.

The bill that failed in the Legislature, which was amended down from a full-scale medical marijuana bill, would have allowed people with severe seizure disorders to use cannabidiol in liquid, oil or pill form. It’s unclear how many people the measure would have affected.

Many House lawmakers were skeptical, including Republican Rep. Fred Deutsch, who said it’s “not realistic” that there’s no possibility users could get high. Rep. Kristin Conzet, a Republican who opposed the measure, suggested that families like the Hendricksons move to a state that allows people to use cannabidiol.

“This is not a bill for South Dakota,” Conzet said, counseling lawmakers to exercise caution.

Seventeen states had passed such a law as of mid-January, according to the National Conference of State Legislatures.

GOP Sen. Blake Curd, who sponsored the changes to limit the bill to cannabidiol, said the effort will likely take more education, and that he thinks the issue is worth pursuing in the future.

Meanwhile, backers of the full medical marijuana ballot measure want to overturn Secretary of State Shantel Krebs’ rejection of the initiative. Krebs said last month that supporters didn’t turn in enough valid signatures to put the measure before voters.

Melissa Mentele, a medical marijuana advocate from Emery, said Krebs’ office got it wrong when the measure was rejected. Krebs said Thursday that she hopes to finish verifying ballot measure challenges within about a month and a half.

The medical marijuana proposal is geared toward people with conditions such as cancer who proponents say could be helped by the plant. Mentele criticized lawmakers for killing the cannabidiol bill, but said supporters have a “no patient left behind policy,” referring to the wider variety of conditions the fuller medical marijuana initiative would address.

Hendrickson said the cannabidiol bill would have been a great development, but the medical marijuana proposal would lead to broader treatment options. Mentele said a medical marijuana program won’t become law in South Dakota through the Legislature.

“If it makes the ballot, I will laugh when it passes by a landslide,” Mentele said.