As Illinois Implements Medical Marijuana Program, One Family Waits to Come Home | St. Louis Public Radio

As Illinois Implements Medical Marijuana Program, One Family Waits to Come Home

Jan 6, 2015

 The state of Illinois has already missed a self-imposed deadline to license medical marijuana cultivators and dispensaries by the end of 2014.

The law allows people suffering from one of about 40 conditions to use medical marijuana with a doctor’s approval. It passed the Illinois legislature more than a year ago, but with a Republican governor soon to take office, it’s unclear exactly when state regulators will issue permits to the future suppliers.

In the meantime, patients continue to wait.

In Denver, One Family Delays a Homecoming

Michaela Frederick is 3 years old, with big brown eyes and a love for the outdoors. The past few years, however, have been a blur of hospitalizations and doctor’s offices for her and her family. Michaela has a severe case of cerebral palsy that causes violent seizures. The family has been struggling to find a way to control them.

“It’s hard watching your child seize every day,” Kristy Frederick said, remembering how, even as an infant, her daughter’s tiny body would be wracked with seizures up to a hundred times a day.

Adam, 37, Michaela, 3, and Kristy Frederick, 37, on a family hike in Colorado. The family moved to the state in 2013, in the hopes of treating Michaela's frequent seizures with an oil made from medical cannabis.
Credit Frederick Family

A lack of oxygen at birth had caused severe damage to Michaela’s brain. Then a case of meningitis diagnosed when she was nine months old worsened her condition. Doctors prescribed heavy doses of medication and a high-fat ketogenic diet, which reduced the frequency of Michaela’s seizures, but left the toddler lethargic and unresponsive.

“It slows their brain activity down, that’s how seizure meds work, and then she definitely doesn’t progress.” Kristy said.   

When the family had the opportunity to move to Colorado temporarily, it presented a chance to try one more treatment: medical cannabis.

Michaela’s father, Adam, a manager for a machinery company, accepted a temporary work assignment in Colorado last year. The family rented out their Washington, Ill., home and moved nearly 1,000 miles west to Denver.

Michaela began doses of cannabidiol, a strong-smelling marijuana extract taken orally.  Almost immediately, it worked.  

In Colorado, Michaela Frederick uses two types of cannabis-infused oil to treat her seizures.
Credit Durrie Bouscaren | St. Louis Public Radio

“You have what they call the honeymoon period. Right away, she had zero seizures for a few weeks,” Adam said.

Even though the oil didn’t completely stop Michaela’s seizures, doctors were able to wean her off of many of the seizure medications she had been taking as well as the ketogenic diet. The oil also helps alleviate some of the side effects she experiences.

She’s very disabled. But when she’s smiling and feeling good, it makes everything so much better. We can actually go out and do things together as a family,” Adam said.  

Cannabidiol comes from a specific strain of marijuana called Charlotte’s Web, and has received a lot of publicity for its success in treating children with some forms of epilepsy. Although patient outcomes can vary, a number of families have moved to Colorado so they can legally use the oil to treat their children. The Fredericks quickly joined the fold of medical “ex-pats” in Denver. They met people who finally understood the challenges they had faced over the past few years.

Adam found himself returning to Illinois for brief visits to testify at the statehouse and lobby legislators to add epilepsy to the list of conditions approved for the use of medical marijuana. Friends and family members mounted a letter-writing campaign.

“I would call [legislators] on my way to work,” Adam said. “I could make three or four phone calls, maybe five a day. Then at home, I would sit and call.”

Illinois extended the law to include epilepsy patients and minors, effective Jan. 1, 2015.

Waiting on a Law

While patients like Michaela wait, it’s unclear when the state will act to make medical marijuana available. Companies hoping to grow and sell cannabis turned in their applications for licenses back in September, but regulators have yet to issue permits. Even after the permits are issued, patients will still have to wait at least one growing season before they can start using medical marijuana in Illinois.

The reasons for the holdup are unclear. Medical Cannabis Pilot Program coordinators declined to be interviewed for this story, but spokesperson Melaney Arnold gave an e-mail statement:

“We are strongly committed to bringing relief to thousands of people across the state and ensuring Illinois is the national model for implementing medical cannabis. 

We are working hard to make sure this is done right.

We are conducting a comprehensive review of every applicant to ensure that only the most qualified are approved for this important program.”

The law requires the Illinois Departments of Revenue, Financial & Professional Regulation and Agriculture to evaluate each application and issue permits to no more than 21 cultivators and 60 dispensaries in separate jurisdictions throughout the state.   

Ellen Becker, who directs the Epilepsy Foundation of Southern Illinois, said the delay isn’t necessarily a bad thing.

If they’re holding it up because they want to make sure they really screen all the applicants, and make sure there’s nothing in their path that would preclude them so they’re not an embarrassment to Illinois later, than that would be a good thing. If it’s politics, that would be an unfortunate side of it,” Becker said.

The permitting process might be complicated by the timing of a gubernatorial transition in Illinois. Governor-elect Bruce Rauner will replace Democratic Gov. Pat Quinn on Jan. 12.

Rauner, a Republican, has publicly stated that he would have vetoed Illinois’ medical marijuana law had he been governor when the state legislature passed it.

“The fear is that if Quinn’s office doesn’t issue the licenses, Rauner may not feel compelled to do so,” said Bradley Vallerius, a Gillespie-based lawyer specializing in medical marijuana policy.

“The law requires the agencies to award the licenses. But it’s not like there is a timeline or remedy built into the regulations,” he said.

Doctors and Hospitals Determine Policies

The delays have only added to the frustration patients have expressed to Becker and her organization. She said patients regularly call the association with concerns that they won’t be able to find doctors to certify them to use medical marijuana, especially in rural parts of Illinois. (Doctors won’t write prescriptions for the drug, but instead sign official approvals called certifications). 

That’s not an unfounded fear. Illinois residents who usually travel to St. Louis  or Evansville, Kentucky for medical care may not be able to be certified by an out-of-state physician. What’s more, not all physicians are crazy about the idea of being associated with medical marijuana; it can carry a professional risk.

“I think most physicians will be reluctant to certify for medical marijuana. That’s been our read within the group, that most of the physicians don’t think there’s a lot of benefit to it,” said Doctor Robin Spencer, the executive medical director of OSF Medical Group. OSF is a network of hospitals headquartered in Peoria, Illinois.  

Dr. Robin Spencer, MD.
Credit OSF HealthCare

The American Medical Association opposes the use of medical marijuana. The American Academy of Neurology has reserved judgment, calling instead for additional research into the risk and benefits of marijuana-based therapies.

Spencer and his colleagues have studied the new laws over the past months. He said he hasn’t ruled out the possibility of certifying his patients. But he said there isn’t enough research into the drug’s benefits and risks to make him comfortable recommending it.

“There’s nobody funding these studies. There’s no big drug company that’s going to make a lot of money off of this that’s going to want to fund these studies and go forward,” Spencer said.

It’s unclear how medical marijuana would interact with other drugs given to a patient in a hospital setting, so Spencer said he doesn’t expect he’ll allow people to use it during inpatient stays. But for patients who use medical marijuana every day, needing to stop abruptly during an unexpected hospital stay could also pose a problem.

A Long Wait  

Back in Colorado, Michaela Frederick spent the holidays in a hospital room near Denver for an infection that her parents suspect is related to one of the pharmaceutical drugs she’s taking. Cartoons played on the television. Flowers and stuffed animals sat by the window, which was framed by a string of red Christmas lights. 

Michaela and her parents spent the holidays at Children's Hospital Colorado, in a Denver suburb.
Credit Durrie Bouscaren | St. Louis Public Radio

“(Michaela) hasn’t seen any of her cousins since we moved here,” her mother, Kristy said. “It’ll be good to go home. We need support.”

While many parents have hopes of watching their children graduate high school and go to college, Adam and Kristy have hopes of seeing Michaela sit up by herself, learn to speak and take fewer medications to control her seizures. But every delay in the Illinois cannabis program means a longer wait for the family to return home.

“There’s not a single person, when you watch your child suffer daily, and you have no other roads to head down … you’re going to try it,” Adam said.