Schaumburg family losing access to daughter’s medical marijuana patches faces pivotal week

A Schaumburg family whose daughter inspired Illinois’ Ashley’s Law to retain access to her seizure-preventing medical marijuana in school is now facing losing it altogether when their current supply runs out in a week.

But both federal and state legislators have offered Maureen and Jim Surin hope of a solution for 19-year-old Ashley now that the patches are no longer made in Illinois and bringing them from neighboring states is illegal.

On Friday, Maureen was invited to U.S. Rep. Raja Krishnamoorthi’s Schaumburg office to sign a release enabling a conversation with the Food and Drug Administration.

She said Illinois State Rep. Bob Morgan of Deerfield and State Sen. Cristina Castro of Elgin have also reached out to help.

As the Surins believe federal interstate commerce laws should be changed, Maureen is particularly interested in what the FDA might say — and when.

“I hope they call it an emergency,” Maureen said. “It’s a pretty basic request. There’s not an easy path to get something exactly like she has. I would gladly let them take the reins, but I don’t know how quickly that can happen.”

Ashley was diagnosed with leukemia at 2 years old, then faced epilepsy, autism and a concussion suffered from a fall during a seizure, even after she had beat the cancer.

For eight years, her life has been transformed by her access to the patches licensed by Mary’s Medicinals of Colorado and manufactured locally by Green Thumb Industries of Chicago.

But that solution, which allowed Ashley to have a job and pursue a variety of interests, is in jeopardy since Mary’s Medicinals withdrew from the Illinois market.

When the current patches run out, Maureen believes she’ll have to take a leave of absence from her job and take Ashley out of her Adult Transition Program, which teaches her work and life skills that include her paid job at Ikea.

“I’m trying to find an easy way to tell her and there really isn’t,” Maureen said. “To me it’s sad. We’re pulling something away from her that shouldn’t have to be.”

Among the family’s supporters are fellow medical marijuana advocates Sandy and Jim Champion of Woodridge. They long fought for better access to the medication to treat Jim’s multiple sclerosis. He remains on the state’s Adult Use Cannabis Health Advisory Committee.

Sandy remembers meeting Ashley, then 11, during the campaign for Ashley’s law.

“She wasn’t able to talk,” Sandy said. “She was very withdrawn. This girl’s walking around talking now. I know this cannabis patch was life-altering for them.”

Sandy said the state legislators who responded to Maureen may have some control over the licensing costs affecting the business decisions that led to the patches’ disappearance from Illinois.

They are still available in Missouri and Michigan, but one of the foundations of the Surins’ campaign is that neither they nor anyone else should have to break federal law to obtain the patches.

Morgan has filed House Bill 4306, which would require all Illinois dispensaries to carry medical marijuana and create a patient reporting portal to notify the state of inadequate supply, according to his Outreach Director Dominik Bronakowski.

Though not an interstate commerce law, the bill addresses another of the Surins’ top wishes for reform, Maureen said.

“It’s huge,” she said. “Bob knows what’s going on. He’s a strong legislator and a good friend.”

Meanwhile, a petition to change interstate commerce laws for medical marijuana at Change.org/SaveAshley had collected 1,963 signatures as of Friday.

President Donald Trump’s executive order in December calling for the reclassification of marijuana as a less dangerous drug has also raised hope for change.

Chicago attorney Eric Berlin, who leads the U.S. and global cannabis teams at the law firm Dentons, said there’s been no better time to anticipate change in federal marijuana laws.

But that isn’t going to happen before Ashley’s supply of patches runs out, he added.

“I have to figure out new meds for her in about a week,” Maureen said. “But it’s risky. Obviously there’s a lot of options out there. Will I try them all? No. We don’t need to put her life at risk and that’s what this is doing.”