Updated: July 29, 2014 at 6:57 am
Parents who flocked to Colorado in search of medical marijuana oil to treat their children's severe epilepsy reacted with guarded optimism to legislation announced Monday aimed at legalizing the oil - calling it a first step at returning home.
The bill by a Pennsylvania representative could get oil in the hands of parents across the nation by allowing it to be shipped across state lines. No longer would parents need to relocate to Colorado, said Rep. Scott Perry, R-Pa., who announced it.
If passed, the Charlotte's Web Medical Hemp Act of 2014 could significantly impact four Teller County brothers whose business of refining marijuana is considered a pioneer in treating the condition and easing the debilitating symptoms of epilepsy.
Still, states would need to align their laws to allow the oil in their state, Perry said.
And parents warned that not all oils would be covered - limiting the bill's impact.
"It's a giant step in the right direction, but we have more work to do," said Megan Patrick, whose 1-year-old daughter uses the oil.
The bill would remove from the federal drug schedule those substances that have up to 0.3 percent tetrahydrocannabinol - also known as THC, the substance that gives marijuana users a high. Marijuana is listed as a schedule I substance, the nation's highest classification for drugs.
The THC amount cited in the bill is considered scant, fitting the widely used definition of hemp. Rather, it's the high level of CBD, cannabidiol, that appears to provide relief for such medical conditions as epilepsy.
Families from across the nation began moving to Colorado last year after hearing the story of a Black Forest girl named Charlotte Figi, who was first profiled by The Gazette in June 2013. Oil produced by the Stanley brothers in Teller County helped drop her seizures from 1,200 a month to three - a recovery that later became the subject of a CNN documentary.
Migrating families have since called themselves "medical refugees," because federal law bars shipment of the oil across state lines. More than 200 families have come to Colorado as part of Realm of Caring, a nonprofit working with the Stanley brothers to distribute the oil. And many more may be seeking oil elsewhere in the state.
If passed, the legislation could allow Nicole Tross to move back home to Naperville, Ill., a suburb of Chicago where her husband still lives.
She moved here in December as new medication options dwindled for her 8-year-old son, Chase.
The boy suffers from Doose syndrome, a form of epilepsy causing an estimated 2,000 to 3,000 seizures a day - each lasting about three to five seconds. The seizures are marked by nods of his head.
Since using Charlotte's Web oil, Chase's seizures have dropped an average of 50 to 60 percent, Tross said. Some days, those seizures drop by 90 percent.
But legislation passed in Illinois allowing for the use of such oils likely won't take full effect until January, she said. In the meantime, Tross' husband remains in Illinois working a job with little hope of relocating.
"It would provide an option for our family to travel, and not be held hostage in Colorado," Tross said.
If passed, the legislation could also prove a boon for Joel Stanley and his three brothers, who produce the strain of oil named after Charlotte Figi, called Charlotte's Web.
The Teller County business serves about 400 people in Colorado and 30 to 40 people in California, Joel Stanley said. But 10,000 people are on their waiting list, he added.
A convergence of factors is leading the company to expand.
On the one hand, the Colorado Department of Agriculture recently approved applications for Joel and Jared Stanley to commercially produce hemp - a green light for mass production of Charlotte's Web in Colorado, he said.
This year, the company recently expanded their capacity from a one-third acre lot to a 40-acre crop circle, Joel Stanley said.
The company also plans to develop an operation in Uruguay, which recently legalized marijuana sales. By summer 2015, the company plans to cultivate hundreds of acres, he said.
The goal is to serve 2,000 more people by this fall and to eliminate its wait list by fall 2015. The company does not yet ship out of state, but it could start by the end of the year, he said.
Hemp products are available in stores across the United States, almost always shipped in from other countries. Perry's legislation would help ease the process of shipping between states, Joel Stanley said.
"It means that we don't have to operate in a gray area," Joel Stanley said. "And it means that parents don't have to feel like criminals."
Still, the legislation falls short of helping all families who moved here. While the bill does cover Charlotte's Web, it does not appear to cover substances such as THCA - essentially, the active ingredient in marijuana before it is heated, and thus, before it becomes psychoactive.
THCA has been life-changing for Tripp Oliver, 5, who came from Georgia with his mother in April seeking relief from grand mal seizures that occurred one to two times a week. On Monday, the Olivers gathered with several other families from Georgia for dinner at a house in east Colorado Springs - many of whom receive travel and rent assistance from a Georgia nonprofit that funds trips to receive oil.
Tripp ran around in the green grass, talking with his mother all the while. But as the party wound down, he had a seizure - the first in four-and-a-half weeks.
"It could have been three weeks, you know," said his father, Chip Oliver. "So we're thankful for four-and-a-half. Just got to start the clock back over now."
Tripp is using THCA as a stand-in until he can get the Charlotte's Web oil, though many children need a combination of both.
The medication has allowed Tripp to talk again, but usually just to his mother, Laura Oliver. His father must work in Georgia - meaning only weeklong visits from time to time.
"It's pretty limited..." said Laura Oliver, of the legislation. "It's a good starting point, but I'm really hoping for something bigger, quicker - for everyone."