'Charlotte's Web' mom: Medical marijuana life or death

Courtesy of KVUE

Mark Wiggins, KVUEAUSTIN -- Parents are making passionate pleas to lawmakers to allow marijuana-based oils to treat severely epileptic children.

The Texas House Committee on Public Health heard testimony Tuesday on a bill that would do just that. One by one, parents tearfully described the horrors of epilepsy, as well as the debilitating side effects of the pharmaceutical cocktails prescribed to treat it.

Colorado mother Paige Figi's daughter, Charlotte, suffers from a violent form of epilepsy called Dravet Syndrome. Charlotte experienced up to 300 grand mal seizures a week by age five. With her daughter seizing every 30 minutes, Figi said doctors told her there were simply no treatment options available.

"Just to give you an idea of what it felt like, we were begging for her to die because it was so difficult to watch her suffering," said Figi. With all options exhausted, the Figis turned to a chemical found in the marijuana plant as their "Hail Mary" play.

The "high" of marijuana comes primarily from the chemical Delta-9-Tetrahydrocannabinol (THC). Cannabidiol (CBD) is a non-psychoactive component of marijuana which many neurologists believe has shown promise in preventing seizures.

Working with the Figis, a Colorado grower created a plant high in CBD and low in THC. The strain is now known around the world as "Charlotte's Web."

The strain isn't smoked, but is instead processed into an oil and administered orally. Since taking the treatment, Charlotte's seizures have all but stopped.

"Her twelve hundred monthly seizures are down to two seizures a month and this is over three years ago," said Figi, who shared her story with lawmakers Tuesday in support of a bill by state Rep. Stephanie Klick (R-Fort Worth).

House Bill 892 would allow for the legal distribution and use of marijuana containing no more than 0.5 percent THC and no less than 10 percent CBD for treatment of patients suffering from intractable epilepsy. Distributors would be licensed and strictly regulated by the Texas Department of Public Safety.

Pediatric neurologist Dr. Rana Said of the University of Texas Southwestern Medical Center and the Children's Medical Center of Dallas said while not for everyone, CBD treatment could help many for whom all other medications have failed.

Yet even if the federal government were to fast track research into marijuana-based treatments, she said it would take years to obtain the approval of the U.S. Food and Drug Administration (FDA).

"These children are growing, they're losing skills," said Said. "It impacts their cognitive development, and there's a real mortality associated with uncontrolled epilepsy five times greater than the normal population. So I really don't feel we have the time to wait."

Pediatric neurologist Angus Wilfong of Texas Children's Hospital and the Baylor College of Medicine is currently testing pharmaceutical CBD. While encouraged, he warned lawmakers Tuesday the law should wait for science and the FDA. While acknowledging that he has seen no personal evidence that CBD produces any dangerous side-effects, he says that research is also inconclusive.

"We don't have proof that it works," Wilfong told KVUE. "There's lots of anecdotal experience and people's compelling stories, but unfortunately stories of personal experience are filled with bias and we need the science to prove whether it's effective."

Wilfong says the world's first randomized control, "Gold Standard" research study should settle the issue by the end of the year. The FDA requires at least two scientific studies, and an additional study is also expected to be completed by 2016. Wilfong contends pharmaceutical CBD would be much easier to measure and regulate than botanical medication.

Meanwhile Austin parents Tim and Brehanna McMorris, whose daughter Hanna has suffered from seizures since she was four months old, have heard enough.

"This is my state and I don't want to leave it," Brehanna McMorris told KVUE. "This is the state of Texas. I'll do what I have to for her, but I don't want to have to leave."

Based on the reactions of the committee's members, some Texas lawmakers seem increasingly on parents' side. Both Democrats and Republicans challenged assertions made by a pair of county sheriffs testifying against the bill that CBD medication could be dangerous.

"The consequences of this product seem infinitely less than the consequences of the FDA approved products," said state Rep. Bill Zedler (R-Arlington), a retired medical consultant.

State Rep. Ralph Sheffield (R-Gatesville) said "It looks like the DPS will be all over this process."

Sheffield praised committee chair state Rep. Myra Crownover (R-Denton) for her "courage" in holding a hearing on the bill.

Lawmakers also heard testimony Tuesday on House Bill 837 by state Rep. Elliott Naishtat (D-Austin), which would allow patients prescribed medical marijuana by a physician a legal defense in the event they are arrested for possession of a personal amount.

Another bill, House Bill 3785 by state Rep. Marisa Márquez (D-El Paso), would allow full medical marijuana use.

The 84th Texas Legislature has been marked by lawmakers' willingness to consider marijuana-related legislation, yet the bills are still considered long shots.

While some advocates view the increased visibility and number of hearings a step in the right direction, others believe medical marijuana can't wait.

"If my daughter had been in Texas, she would have died," said Figi, who credits the strain of marijuana bearing her daughter's name with saving her daughter's life and many others. "The next time I come back to Texas, whether the bill is going to be signed or we're testifying again, people will have died."