Parents of children who are suffering from a catastrophic form of epilepsy are asking lawmakers to approve legislation that would legalize an alternative treatment derived from marijuana plants.
Elliot and Lynne Howard of Rowlett traveled to Austin for a Public Health Committee hearing in the Texas House of Representatives on Tuesday.
Their 4-year-old daughter, Elissa, suffers from seizures caused by Dravet Syndrome. After doing some research and talking to their doctor, the Howards believe oil extracted from cannabis plants and placed under the tongue or inside the cheek could help.
But, that treatment is not a legal option in Texas.
"Her medicines are not effective at controlling her seizures," said Lynne. "She is developmentally delayed. We think part of that is the disorder itself, but we also think the heavy duty pharmaceuticals that she takes which also slow down her brain development impede progress."
Cannabidiol, or CBD, is a compound found in the cannabis plant that is often extracted and given in an oil form after it is mixed with coconut or olive oil. It is not smoked.
"There's an education component," said Joanne Yurich of Compassionate Access for Epilepsy, or C.A.F.E – nonprofit that is lobbying Texas lawmakers to support legislation that authorizes the use of CBD oil.
"I think once they learn there's not a psychoactive component and there's little-known side effects, they realize it's something you're providing as an option," added Yurich.
Fort Worth Republican State Representative Stephanie Klick is co-sponsoring House Bill 892, which lays out tight regulations for cultivating, producing and dispensing lower-strength CBD oil to patients with intractable epilepsy who have not responded well to other treatments.
The CBD treatment is still experimental and has not been heavily researched, but the Howards found testimonials from other parents in California and Colorado who say the oil helped control the seizures.
Other parents who testified at the public hearing on Tuesday said HB 892 is a good start, but would not go far enough because it restricts usage to oil with very low levels of THC.
Stephanie Williams told lawmakers she moved from Texas to Colorado so her 4-year-old daughter could access whole plant cannabis treatments. She said the amount of THC that currently works to help her daughter manage her seizures would still be illegal in Texas if HB 892 passed.
"I feel that the current CBD to THC ratios that are in the bill will not help bring my daughter home," said Williams.
But the Howards say the proposal is a good start and they're asking lawmakers to consider legislation that would eventually give them a chance to try the treatment for their daughter.
"The opposition will say, 'Hey, let's wait. Let's wait until we get all the information. Let's weigh out every single risk there is,'" said Lynne. "You stand in our shoes for a day, for a week, and I promise you'll feel different."
The Texas Senate is considering a similar piece of legislation, SB 339.