The Demand For Medical Cannabis In Illinois

Sep 16, 2015

7-year old Hank Kovach, who suffers from Doose Syndrome, uses a liquid extract of marijuana called cannabiodiol, or Epidiolex.
Credit www.facebook.com/HanksRHero?

Legislation creating Illinois’ medical marijuana law took effect at the start of 2014, but nearly two years into it, no product has been sold.  In Wednesday’s report on the opening of one of the first cultivation sites, we heard about one of the companies growing the state’s first crop of medical cannabis.  Now we hear about those hoping to benefit.

They include Army Veteran Dan Jabs, who served a 10-month tour in Iraq a decade ago. When he came back, he was diagnosed with Post Traumatic Stress Disorder.  “I was a patrol leader, and we had three, sometimes 4 humvees for the theater command sergeant major,” he said.  “And we were trying to keep a low profile, but we were constantly getting with IED's." 

Jabs had panic attacks, nightmares and insomnia. Now 33 years old, the Urbana resident said some symptoms are under control through what he calls a ‘combat cocktail’ prescribed by doctors with the Veterans Administration. 

He said insomnia is still a problem, averaging three to six hours of sleep a night.

“And so never really feeling refreshed – you know, it sucks,” he said.  “In general, the medications, it took 3,4 years for us to find the right kind of combination of things.  And they’re helpful, don’t get me wrong, but the problem is these things aren’t necessarily meant for long-term use.”

And Jabs said many of the drugs he’s on have potential harmful side effects, including diabetes, and a neurological disorder that can mean involuntary movement of the face and jaw.

“That’s not something that I would be concerned with, with cannabis,” he said.                 

A handful of states allow medical marijuana to treat PTSD, but not Illinois. And because medical marijuana is still illegal at the federal level, his VA doctors can’t prescribe the drug. The FDA says it’s still evaluating medical cannabis through clinical trials.

One Patient's Success StoryOne of those trials is in Chicago, where a by-product of marijuana appears to be helping a child with a severe form of epilepsy, known as Doose Syndrome. 

Hank Kovach was diagnosed when he was two years old.  At the time, he suffered from around 100 seizures a day, all but robbing him of his ability to speak, and hurting his development. But last year, he was selected for a federally-funded clinical trial at Lurie Children’s Hospital in Chicago.  (Hank is the relative who served as the inspiration for PharmaCannis employee Rick Bower, featured in Wednesday's report.)

Through the trial, twice daily, the 7-year old takes liquid cannabidiol (also known as Epidiolex) the major component in cannabis that doesn’t include THC, the compound that creates a high.

“We felt like we won the lottery,” said Megan Turner, Hank’s mother.  “Because not many children were chosen.”

Turner said her son’s speech now is still very limited, but he’s attending school, having just started second grade, with the help of a communication device and service dog.

“Within six months, he was testing at six to 12 months old, and he went to testing at pre-K,” she said.  “He had better coordination.  He had body awareness.  He could transition from one activity to the other.  He was happier.  He was sleeping through the night.”

Epilepsy is among the nearly 40 conditions on the list approved to be treated by Illinois’ medical cannabis program, but it’s not yet clear whether the byproduct Hank uses, which also receive FDA approval in 2016, will be part of it.

Legislative Efforts Continue

Meanwhile, advocates say they’re running out of time to get a true sense of the drug’s benefits. 

“The governor has never been a big fan of the medical marijuana program,” said State Rep. Lou Lang (D-Skokie.)  “He said so during the campaign.

The chief sponsor of the medical cannabis measure, Lang has been frustrated that Governor Bruce Rauner wants to extend the medical cannabis pilot program by only a few months, to May of 2018. 

Lang had sought to extend it four years after the first cannabis dispensary opens.

“Four months does nothing for the patient, it does nothing for the licensees, it does nothing good for the program, and won’t change the timeline in terms of when we have to start drafting a bill to renew the program.” he said.  “We will not have sufficient information to determine what the program will look like moving forward.” But Lang said he won’t try to override Rauner, saying the governor has pledged to negotiate ‘a mutually acceptable compromise’ that would ‘serve the interest of patients.’

He does say an end to the pilot program in 2018 would prove costly, requiring companies to raise their rates to make back what they spent on the licenses.

Lang said he created the legislation for the patients.

“If it’s cheaper to keep buying (medical cannabis) on the street, they’ll keep buying it on the street,” Lang said.  “We (him and Rauner) would like to meet sooner as opposed to later, when dispensaries start setting their prices.”

Meanwhile, potential patients like Dan Jabs were hoping the Illinois Department of Public Health would add PTSD to the list of approved conditions to be treated with medical cannabis - along with osteoarthritis, migraines, and eight others.

“I think that there is time for us to make progress, the thing is, if there aren’t enough patients to actually purchase, the businesses aren’t going to be successful,” he said.  “So if we’re holding back authorizing certain conditions, then we’re stifling progress.”                             

On September 10th, Illinois Public Health Director Nirav Shah rejected those 11 conditions outright.  And similarly, on the same day, Gov. Rauner vetoed a Senate measure applying solely to PTSD, calling it premature to expand the medical cannabis program before the state has had a chance to evaulate it.

Illinois Public Radio's Amanda Vinicky contributed to this report.

Story source: WILL