Kiley Klug and Tiffanie Krentz had just finished giving emotional testimony about their children’s persistent seizures during Wednesday’s hearing on legalizing cannabis oil when Sen. Ralph Ostmeyer spoke up.
Ostmeyer, a veteran Republican legislator from a sprawling rural district in western Kansas, told the women he understood, because he has a 36-year-old daughter who was only expected to live to age 10.
“She’s missing part of the brain, our daughter is, that controls all motor (skills) and so on,” said Ostmeyer, of Grinnell. “We think that she’s looking out at us, trying to tell us something, but she can’t talk. So I understand what you went through. I see all the different medications. We’ve been there, done that.”
Ostmeyer did not say whether he’d support House Bill 2049, which last session became the first medical marijuana bill to pass the Kansas House.
But momentum appears to be building for the narrow bill, which allows only cannabis oil solutions with less than 3 percent THC — too little to produce the “high” associated with recreational marijuana — to treat seizure disorders.
Advocacy groups pull support
The carrier of the bill, Rep. John Wilson, emphasized the bill’s differences from broader medical marijuana legislation that has never advanced in Kansas, where legislators fear legalization will increase drug abuse.
Those differences have split the medical marijuana community.
The state’s main advocacy groups supported an earlier version of Wilson’s bill that would have allowed Kansans to petition a state advisory board for higher THC marijuana compounds and permitted treatment of more medical conditions.
After that part was stripped from the bill, groups like Bleeding Kansas and the Kansas Association of Medical Cannabis Advocates pulled their support.
“We are just neutral on this whole issue at this point,” said Lisa Sublett, the leader of Bleeding Kansas.
Sublett said she believes her group has the same goals as many of those who support Wilson’s hemp oil legislation, but the current version of the bill leaves out too many people with other medical conditions.
Tracy Robles, who heads the Kansas Association of Medical Cannabis Advocates, said her daughter suffers from seizures but would not see any benefit from the oil allowed in HB 2049 unless more THC were permitted.
Wilson, a Democrat from Lawrence in a Legislature with overwhelming Republican majorities, said he’s trying to craft a bill that could provide some medical benefit but is narrow enough to have a chance of passing. He said dissatisfaction on both sides might signal the bill is reaching that tunnel.
“I recognize the bill may not go far enough for some,” Wilson said. “But I also recognize there’s only a certain type of bill that can pass right now in this political environment.”
Desperate to try
The benefits of treating seizures with cannabis oil high in cannabidoil, or CBD, but low in THC are still in dispute. Early studies showed improvement for as many as 80 percent of users, but sample sizes were extremely low and subsequent studies suggest only about 30 percent might benefit. More comprehensive study has been hamstrung by marijuana’s status as a Schedule I drug at the federal level.
Klug and Krentz acknowledged that the oil allowed by HB 2049 might not help their children but said they’re desperate to try.
Klug was accompanied at Wednesday’s Senate Corrections and Juvenile Justice Committee hearing by her husband and their young son Owen, who uses a wheelchair and occasionally blurted out involuntary noises.
She said traditional medications, a special diet and a nerve-block transplant have reduced Owen’s seizures from hundreds a day to about 20. But those 20 seem intractable.
“Epilepsy is simply a prison that Owen cannot escape,” Klug said.
Krentz also was accompanied by her husband. But her son, J.J., was not able to attend the hearing. He’s an adolescent whose persistent seizures have kept him at the developmental level of a 3 or 4 year old. Because of J.J.’s cognitive and physical needs, the family was no longer able to care for him at home. He lives at Parsons State Hospital.
“That was not a decision we took lightly,” Krentz said.
Krentz said the staff at Parsons has been amazing and her son is doing well there. Although J.J.’s doctors have tried 16 medications, his seizures persist. Krentz said she and her husband recently signed a medical order instructing doctors not to resuscitate J.J. if he suffers a catastrophic seizure that leaves him comatose.
Andy Marso is a reporter for KHI News Service in Topeka, a partner in the Heartland Health Monitor team. You can reach him on Twitter @andymarso