For 10-year-old Tres Johnson, one of about 18,000 children in Missouri with intractable epilepsy, a single drug allowed by the state’s new medical marijuana law will provide relief from seizures that seem to have no end.
For marijuana law advocates, the law seems to be a step toward legalization.
“It means that our legislature no longer questions that marijuana is medicine,” said Dan Viets, coordinator for the Missouri chapter of the National Organization for the Reform of Marijuana Laws.
Brandy Johnson, Tres’ mother, had exhausted every treatment option for her son’s epilepsy.
“All these medications have severe side effects, and they’re just really strong medications,” said Johnson, who’s from Bernie in southeast Missouri. “But that’s all that I knew was available, and we tried every legal option of treatment and nothing worked.”
After finding out last November that there were no other treatments to pursue, Johnson decided go outside the state to obtain a chemical found in cannabis plants — marijuana and hemp — that has helped children with epilepsy.
Despite her hesitation over the legality of the treatment, Johnson, who has seen Tres nearly die twice in her arms, decided to take a chance on cannabidiol, known as CBD.
In mid-January she began giving her son a CBD oil supplement from Colorado that was completely free of tetrahydracannabinol, or THC, the active ingredient in cannabis plants that gives users a “high” sensation.
In the first month of use, Tres only had 12 seizures a week. The number has gradually risen, and he now has an average of 120 seizures a day. He also suffers from diprosopus, an extremely rare condition that is characterized by cranial duplication, which adds complication.
On July 14, Gov. Jay Nixon signed House Bill 2238, and Johnson is excited that CBD oil with THC will soon be legal and available in her home state.
“I think that it’ll save quite a few lives and you know, that’s always a good thing,” she said.
Even though an emergency clause was employed to ensure the law would immediately go into effect, patients will not start receiving the treatment until mid-2015.
The law will allow for the cultivation and processing of cannabis plants, including marijuana and hemp, for CBD oil used to treat children like Tres who have intractable epilepsy.
Hemp has much lower levels of THC than marijuana, and the law requires that the extract produced is no more than 0.3 percent THC by weight.
While the law is narrowly focused, it marks the first time that Missouri has approved a law allowing any type of use of marijuana for a medical purpose.
The Show-Me Cannabis organization drafted multiple versions of a ballot initiative for November proposing to legalize marijuana, but decided to postpone the effort until 2016.
So far, 23 states and the District of Columbia have legalized marijuana for medical use and 11 states have passed CBD-only laws. Other states that have passed CBD laws include Iowa, Wisconsin and Kentucky.
Colorado and Washington, states that approved marijuana for medical use in 2000 and 1998, respectively, both legalized marijuana for recreational sale and use in November 2012.
Sen. Eric Schmitt, R-Glendale, said Missouri is taking a conservative approach and pointed out that the new law he co-sponsored includes high levels of regulation.
Schmitt, who also has a son suffering from intractable epilepsy, said the legislation was intentionally structured to move through the legislature without causing concerns. The law restricts those who will have access to the CBD oil to children and will allow for the licensing of only two nonprofit growers at a time.
“We wanted to address any potential concerns that might be raised because we wanted it to pass this last session,” Schmitt said. “We were able to move this quickly because I think people understood its importance.”
The bill was filed on April 1 and passed on May 1 — with 90 percent of the vote in the House and unanimous support in the Senate.
Viets, who’s also chairman of the Show-Me Cannabis organization, said, “The Missouri legislature is very conservative and skeptical, and they were clearly persuaded that this is a very important medicine to make available right now.”
While the law is narrow in regards to what treatment it covers and which individuals will have access, there is room for expansion.
“Once we see this process work, as with any law, we’ll see what is working, what’s not working and serve adjustments,” Schmitt said.
When asked about the potential extension of coverage to sufferers of multiple sclerosis, cancer and HIV/AIDS, Schmitt said the debate is ongoing and the focus at this time is on epilepsy treatment.
“I can tell you as a father of a child with epilepsy who has seizures every day, it is, there are a lot of challenges,” Schmitt said. “I just don’t think we ought to be standing … between those families and a potential lifesaving treatment.”
More than 200 Missouri families have moved out of Missouri to other states like Colorado to access the CBD oil treatment, according to a report by KSDK. Darla Templeton, CEO of the Epilepsy Foundation of Missouri and Kansas, said moving is not an option for many families due to work or personal obligations.
“That’s a real difficult thing to pack up and go,” Templeton said.
Now that Missouri’s law has changed, parents will no longer have to take such drastic measures.
Johnson, who has devoted the last six months to researching cannabis-based treatments for her son, pointed out that many people initially were against the proposal, even though it benefits a very small percentage of children.
But for her and Tres, “I think it’s a huge step.”
Update: July 24, 2014
This story was updated to include photos and an updated graphic.