Jeff Davis knows that help for his daughter is just about within his reach.
A measure to make cannabis oil legal for Texans with intractable epilepsy — such as his 3-year-old daughter, Karley — received final approval from the state House Tuesday and now heads to Gov. Greg Abbott for consideration.
“We’ve still got a little ways to go,” said Davis, a Fort Worth father who has been among those advocating for the Texas Compassionate Use Act to help their children. “We haven’t heard anything from Abbott’s office. But I think he will make the right decision.
“That’s what we are hoping for.”
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This is the first time Texas lawmakers have legalized any form of cannabis, and they stressed that this is a very, very limited form of medical marijuana. Other marijuana-related proposals haven’t gone far.
“This is kind of like the difference between grape juice and wine,” said state Rep. Stephanie Klick, R-Fort Worth, a nurse who helped write the bill. “And we are legalizing grape juice.”
Davis is among the many parents who asked the Legislature this year to make cannabidiol use legal for Texans with intractable epilepsy if federally approved medication hasn’t helped.
This form of the plant, Klick said, lets a patient get the benefits without the high. A different form, THC, or tetrahydrocannabinol, is the psychoactive ingredient that produces a high.
The treatment is legal in 13 states and could provide a new option for some of the nearly 150,000 Texans estimated to have intractable epilepsy, supporters say.
Marijuana use, for medical or recreational reasons, is illegal in Texas and more than a dozen other states. It is legal in 23 states and the District of Columbia.
A limited number of growers of the plant would have to be licensed by the Texas Department of Public Safety. “There’s oversight the whole way,” Klick said.
And if a thief were to break in where the plant was being grown, in hopes of smoking it, “they are going to be very disappointed if they are hoping to get high from it,” Klick said.
Critics say the bill is a bad idea and that the treatment isn’t scientifically proven to stop the seizures. They worry that the medicine could wind up in the wrong hands and potentially lead to more recreational use of marijuana statewide.
The House approved the bill Tuesday 108-38 with all Tarrant County House members voting yes.
Davis, whose daughter has Dravet syndrome, a type of intractable epilepsy, said the cannabis oil could change her life.
Karley has up to 100 seizures a day lasting for seconds or sometimes hours. Some require her to be rushed to the hospital, and many can’t be controlled by the heavy “rescue” drugs she takes.
She has a 20 percent chance of not living to her 18th birthday and there is no cure or FDA-approved drug available for her, Davis said.
Uncontrolled seizures can cause developmental problems. If the cannabis oil controls the seizures, Karley later may advance developmentally to the level of a 10- to 15-year-old, rather than staying at a 5- to 6-year-old level, Davis said.
“This absolutely could change her life,” he said. “Something that has this much potential, it’s not a miracle, but it’s a huge breakthrough in the treatment of epilepsy.
“A lot of families have thought about whether we would need to move to help our little ones. This is a huge step to having medication available.”
Helped a Colorado family
Rules governing the cultivation, processing and dispensing the oil would have to be written by the end of this year and the state would need to license at least three dispensing organizations no later than Sept. 1, 2017, but it could happen much sooner than that, some say.
Epileptologists or neurologists could prescribe the oil.
The Davis family and other Texas families are encouraged by success stories, such as the one Colorado mother Paige Figi traveled to Texas to tell about her daughter, Charlotte.
Figi said her daughter had dozens of seizures a day, no medicine helped and her condition deteriorated so much that she couldn’t even swallow.
They finally tried the cannabis oil, putting it in Charlotte’s feeding tube. Her seizures dropped from about 1,200 a month to one or two. The girl, now 8, began developing again, doing things that her parents weren’t sure were possible.
She’s out of her wheelchair and can play with toys, laugh and dance, a reversal from the listless girl who didn’t walk or talk and was racked with seizures. The high-CBD oil has since been named for her — Charlotte’s Web.
“A large number of patients in these trials are seeing not only optimum seizure control but advancement, they are able to speak, learn fine motor skills, complete tasks,” Davis said. “It’s a huge step in the treatment of epilepsy.”
Anna Tinsley, 817-390-7610