Practicalities prevent area parents from benefits of cannabidiol law

Aug. 25--CEDAR FALLS -- Brienna Decker agrees with people who see medical marijuana -- or its oil form, cannabidiol -- as a gateway drug, but it's for a completely different reason than most.

"It is a gateway to me meeting my child," the Cedar Falls mom said.

Decker and her husband, Mike, have a standing offer from their doctor for a prescription for cannabidiol to administer to their 2-year-old son, Garrett, for his regular seizures, and they're willing to give it a try.

Or they would be, if the practicalities of obtaining the medicinal drug were not overly burdensome to the young couple, even with the immunity granted by a state law passed earlier this year for possession of the otherwise illegal substance.

The Deckers are among a handful of Cedar Falls parents who recently banded together through the Facebook group Seizures Stink and are open to the possibility of trying cannabidiol in place of daily distribution of multiple anti-seizure medications with side effects that include drowsiness, delayed development and possibly worse.

"We're just adding and adding and adding," said Amanda Weichers, displaying a gallon-bag full of the pill bottles that house the medications she crushes and distributes twice daily to her 6-year-old son, Beau. "I choose not to look at the side effects."

Weichers, of Cedar Falls, said the prescription medications she's tried over the years, prior to having access to cannabidiol, amount to simply the lesser of two evils: a drowsy, underdeveloped child or immobilizing and brain-damaging seizures throughout the day.

She's at the point of being ready to discuss the possibility of cannabidiol.

Weichers had that opportunity, along with the Deckers and other Cedar Falls families, last week when she sat down with two of the area lawmakers who sit on an interim committee that will look at amending the medical cannabidiol act that passed in the 2014 session.

A bitter bill to swallow

Parents whose children have intractable epilepsy followed the legislative session closely, constantly worried the bill wouldn't pass or the governor wouldn't sign it. Then they were ultimately disappointed at the limited scope of the legislation.

"Don't expect me to be jumping up and down about that bill, because it still needs a lot of work," said Carrie Elser, a Cedar Falls mom whose 13-year-old daughter, Kylie, has been struggling with seizures for years.

Elser said her daughter is missing out on so much of her life because of the lesser-of-two-evils prescription medications she's on, so she sees amending the bill as a time-sensitive issue.

Granted the opportunity to make three wishes for the Legislature to do to improve the bill, the Cedar Falls families had no problem coming up with a list.

Each of the three requests had to do with accessing an otherwise illegal substance in the state. Their suggestions were:

--Allowing the medicinal drug to become available in Iowa.

--Making it available when the doctor recommends it, and not as a last resort.

--Ensuring insurance covers the costly medication.

Currently, the law means families who get prescriptions from an Iowa doctor still have to find a way to get it from a state where it's legal, like Colorado, to Iowa.

Brienna Decker said she heard Nebraska would consider it trafficking an illegal substance if families were caught in between Colorado and Iowa with cannabidiol, even if they had the required card, like a license, that made it legal to possess in Iowa.

While Iowa Sen. Bill Dotzler, D-Waterloo, joked the families should instead travel by way of Kansas, he recognized the difficulties of getting the substance across certain state lines.

"You can show them the card, but it has no legal authority," Dotzler conceded. "It's sad, really, when you think about the risk you're going to take."

The families weren't willing to risk jail time because there wouldn't be anyone to watch their children.

Rather than a last resort, Sarah Corkery, whose 5-year-old son, Jude, has suffered from seizures, said she would have preferred to try a "natural" medicine before resorting to pharmaceuticals with potentially more harmful side effects. Elser and the Corkerys also agreed it should be up to their doctors' discretion if and when cannabidiol should be prescribed.

"It's taking the decision out of our doctors' hands, basically," Sarah Corkery's husband, Chris, said of the impracticality of getting the medicinal drug.

Brienna Decker said even if all those issues were taken care of, it would still be inaccessible due to cost.

She said when she looked into it, the cost for about a three-month supply equaled $900. Brienna Decker also noted as more states open up the option for cannabidiol, supplies become limited for the low-THC, high-cannabidiol strains of the marijuana.

Taking the next step

Still, the families expressed some gratitude the state has taken one small step forward.

Iowa Rep. Bob Kressig, D-Cedar Falls, assured Chris Corkery the law does not represent the final piece of legislation on the subject.

Kressig said, in fact, the interim committee that he and Dotzler will serve on is aimed at learning more about cannabidiol and addressing what changes may be needed.

Both Kressig and Dotzler supported the bipartisan legislation in 2014, though they acknowledged compromises made to ensure passage make it harder for families to access the drug.

Iowa Rep. Walt Rogers, R-Cedar Falls, will serve as co-chair of the committee that will hold its first and currently only scheduled meeting at 10 a.m.Sept. 11 at the Iowa Capitol in Des Moines. Rogers did not support the legislation.

The Democratic lawmakers said the meeting will feature medical experts and parents, among others, to talk about the bill that passed and what changes should be made. Dotzler said the committee will likely make recommendations to the Legislature based on those suggestions.

But Dotzler also has another goal in mind.

"It's our hope that it's going to help educate people that are pretty skeptical about the law," Dotzler said.

Both Kressig and Dotzler stressed the importance of parents like those they met with for helping to educate others about the law and how more work needs to be done.

Dotzler acknowledged it might not help all parents, but he said it should be an available option for people who suffer from intractable epilepsy.

"If this is going to help these kids, we should be doing it," Kressig said.

___

(c)2014 Waterloo-Cedar Falls Courier (Waterloo, Iowa)

Visit Waterloo-Cedar Falls Courier (Waterloo, Iowa) at www.wcfcourier.com

Distributed by MCT Information Services