When 15-year-old Ryan Briggs’ teacher, Nicole Wadsworth, comes to his house once a week, they work on the same skill he’s been trying to master for the last decade: pulling small plastic pegs out of a foam pegboard.
Ryan’s mom, Diana Briggs, said they are trying to develop his ability to grasp and release.
She said when Wadsworth first suggested the activity, she was skeptical. But years later, Briggs can pull up to 100 pegs on a good day. A good day is a day with only dozens of seizures, as opposed to hundreds.
“On a day like today, as he’s busy with seizures, you kind of hate making him do any work at all, because it tends to cause more seizures,” Briggs said. “But that’s another reason to get a handle on these seizures.”
Ryan has intractable epilepsy caused by a lack of oxygen to his brain at birth, which Briggs attributes to doctor error. She said her son was without oxygen for 24 minutes. As a result, he neither walks nor talks. He spends most of his time lying in his recliner. He gets his nutrition through a feeding tube and requires around the clock care.
Briggs has dedicated her life to caring for Ryan, and more recently, to fighting for the legalization of medical marijuana in Pennsylvania with the Campaign for Compassion, alongside dozens of other parents of children with chronic illnesses.
“We toted our children in all forms of illness and seizing to the capital and let them see what we see every day,” she said.
Jack Kabazie, head of the Division of Pain Medicine at Allegheny Health Network said it’s no surprise the tactic eventually worked. Medical marijuana legalization was signed into law in April 2016.
“This in no way, shape or form is making light of the suffering of children and their parents, but it’s very hard for a legislature to say no when they’re looking at a child that’s suffering in front of them and a parent that is pleading do something to help my child, because medical science hasn’t been able to,” he said.
Kabazie is a part of AHN’s internal task force charged with figuring out who will recommend medical marijuana and how they’ll do it. Marijuana can’t be prescribed under federal law, only recommended; functionally, it's a distinction without a difference.
Kabazie is skeptical about the efficacy of marijuana to treat the 17 conditions listed in the state law.
“It feels very random,” he said. “Irritable bowel syndrome and medical marijuana … they’re like two ships crossing in the night … I have no idea what they expect to accomplish there.”
Kabazie’s skepticism stems from the fact that medical marijuana hasn’t scientifically been proven to effectively treat anything. The U.S. Drug Enforcement Agency recently confirmed that marijuana should remain in Schedule 1, which only includes drugs that have no proven medical purpose.
“There has to be and there will be ongoing studies regarding the medicinal use of marijuana, but at present, we’re not on solid ground here prescribing,” Kabazie said. “So now it comes down to risk-benefit. What’s the risk versus what’s the benefit? I always tell patients, when the benefit far outweighs the risk … then it’s not an unreasonable treatment plan.”
When Briggs tried giving hemp oil to her son, Ryan, in mid-2014, they initially saw a reduction in seizures. But soon, the color and smell of the oil they were buying online started to change and the treatment became less effective.
She said she looks forward to being able to purchase medical cannabis products like any other prescription medicine.
“We’re ready and waiting for a dispensary that will know Ryan, that will know exactly what we need and have that available every 30 days when we go to pick it up,” she said.
Pennsylvania’s safe harbor law does allow parents of minors with qualifying conditions to purchase some cannabis products from other states. But Jonathan Caulkins, who teaches public policy at Carnegie Mellon University said the Briggs’ experience is not unique.
“A lot of the … products produced under the state regimes turn out on testing to be very inconsistent in what’s in them, some outright fraud,” he said.
Still, some patients are willing to live with the uncertainty of not knowing exactly what is in the cannabis products they consume during the next 12 to 18 months as regulators set up the state system.
Gretchen lives in the South Hills and smokes marijuana to manage her multiple sclerosis symptoms. She keeps her small glass pipe and weed tucked away in a kitchen drawer. Gretchen did not want to give her last name, since she is breaking federal and state law.
She said she smokes on her bad days, when the pain and stiffness in her muscles is too much to bear.
“You just feel sometimes like you’re wound, you’re tense and it’s really hard to naturally sort of unleash that,” she said.
She said this happens about once a week. She has tried other remedies – prescription drugs, yoga, meditation – but so far the only thing that has consistently helped is marijuana.
Gretchen said she would probably use the drug more often if it didn’t also get her high. Smoking might relieve the pain and tension, but it also makes her reluctant to do anything outside of the house or interact with others. She said she’s looking forward to trying one of the low-THC, high-CBD forms of marijuana that will eventually be sold at Pennsylvania dispensaries. THC is the psychoactive component in weed that causes euphoria. Scientists theorize that CBD is the ingredient that dulls pain.
“If CBD came from dandelions, it may never have been part of this conversation whatsoever,” Caulkins said. “It has the misfortune to come from the same plant as a chemical that is dependence-inducing.”
Marijuana’s Schedule 1 status has made it hard for academic researchers to study it, because there is so much red tape to cut through. Furthermore, Caulkins said because CBD and THC were discovered more than a half century ago, there’s little financial incentive for pharmaceutical companies to do the research.
“Most biomedical research is done in the hopes of getting a patent that you can then make back your investment on … and it’s a little tricky how exactly you’re going to patent a plant that’s been around for hundreds of years,” he said.
Pennsylvania’s medical marijuana law does have a research provision. In fact, 30 percent of state revenues from the program are supposed to fund research. But academics will still have to get federal approval before they can start any studies.
As for patients, they’ll be able to get marijuana products from 150 dispensaries across the state sometime late next year or early in 2018, and will continue to do their own experiments at home.