After four-year battle, family rejoices over access to medical marijuana

Diana Briggs sees this as the start of the end of a four-year battle to convince politicians, and now doctors, to help her son.

Friday morning, Ms. Briggs, 47, husband Michael, 48, and daughters Alexis, 21, and Hailey, 12, will drive from their Export, Westmoreland County home to the Compassionate Certification Center offices in the Gateway 2 building, Downtown.

There they have an appointment to have son and brother Ryan, 17, be among the first of the more than 8,000 Pennsylvanians who want to be evaluated for certification in the state’s new medical marijuana program.

“Friday is a big day for our family. It’s been a big month for our family,” said Ms. Briggs in a phone interview Wednesday.

To get a medical marijuana ID card, patients must first create a patient profile on the state Department of Health’s patient registry and have a physician certify that they have one of 17 designated medical conditions, which include epilepsy, glaucoma and Crohn’s disease. Patients then must obtain an ID card for $50 from the state that allows them to buy medical marijuana from one of the approved dispensaries.

If anyone qualifies, it seems likely Ryan will. Severely brain injured at birth, Ryan does not walk or talk. A tracheostomy tube helps him breathe and he receives nutrition through a feeding tube.

More to the point, he has epileptic seizures daily. Sometimes continuously, sometimes numbering in the hundreds.

“He once had 400 seizures in one day,” Ryan’s mother said. “And when I say 400, that’s what his nurse and I could count. There were times when Ryan didn’t sleep for three days, and that was on some heavy pharmas.

“There were bruises on his arms and legs, even with pillows underneath, because his body never stopped moving.”

She estimates they tried 10 different drugs — powerful drugs in dosages sometimes exceeding adult recommendations — to bring Ryan’s seizures under control. They tried special diets and they’ve had doctors implant a device to stimulate his brain with electrical impulses.

“We pretty much tried every conventional method that was out there without any improvement.” Worse, the drugs had nasty side effects: one damaged his kidneys and another put him into liver failure.

It was Ms. Briggs’ best friend who told her in late 2013 about Charlotte Figi, a young Colorado girl who, like Ryan, suffered dozens of seizures daily. Her story, now documented on multiple online videos, describes how a certain strain of cannabis helped calm her seizures.

Ms. Briggs said the family didn’t exactly leap at the prospect, knowing they were talking about a substance the federal government considers illegal. For that reason, she is deliberately vague about when and how they obtained cannabis oils and gave them to Ryan through his feeding tube.

She’s clear, however, about the result.

Soon after they started, the Briggs noticed “an alertness and awareness” in Ryan, she said. “He seemed to notice when you walked out of the room where before you weren’t sure.” Within the first year, the seizures became less numerous and severe.

Finding an answer didn’t immediately translate into a solution. After discovering the cannabis oils helped Ryan, they and other families still had to convince a third party — in this case Harrisburg legislators — to unlock the cabinet containing the medicine their children needed.

“Having to wait for politicians to make the decision was probably the hardest part of this entire journey,” Ms. Briggs said. “There were some who would just listen and some who were road blockers. It shouldn’t have been this hard.”

There were exceptions, she’s quick to point out.

Her own representative, Democrat Joseph Petrarca, promised to educate himself about medical marijuana, did just that and has been very supportive. She also gives credit to Republican Sen. Mike Folmer of Lebanon County, Democrat Sen. Daylin Leach of Montgomery County and Gov. Tom Wolf, who signed the medical marijuana bill into law on April 17, 2016.

The latest frustration came last month, when the state Department of Health released the names of 109 physicians who had registered and taken the required coursework to certify a patient has one of the 17 designated medical conditions to qualify for access to medical marijuana.

None of Ryan’s half-dozen doctors were on the list, including his primary care physician and neurologist who both had told her they supported the idea during Ryan’s exams.

“It’s very disappointing that not one of my son’s doctors have signed up,” she said. “I guess there are higher-ups they have to deal with, but I didn’t fight for this for four years not to have a doctor sign up.”

That’s why the family has turned to Compassionate Certification Centers, part of a national medical marijuana network headed locally by Armstrong County physician Bryan Doner that will evaluate patients for certification. The center is not involved in providing the product to patients. 

The Briggs will pay $199 for the medical marijuana card evaluation on Friday, which is not covered by their health insurance.

Then it’s a matter of waiting for a Monroeville dispensary to open in April, where they can try the different oils, lotions and tinctures to see what helps Ryan the most. Those purchases also are not covered by insurance.

Ms. Briggs said she’s particularly excited about being able to talk to a knowledgeable and supportive physician after years of researching on her own, then working in the shadows to obtain her son’s medication from another state that already had a medical marijuana program.

“We feel like we’re doing a victory lap now,” she said. “We even went out and bought special outfits.”

Source: Steve Twedt, Pittsburgh Post-Gazette
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