FOREST CITY | Nine-month-old Liam Bartleson of Forest City used to have 100 to 150 seizures a day.
A series of prescription narcotics didn't help. Cannabidiol oil his parents, Katy and Mitch Bartleston, got with special permission through a one-year federal trial, did work.
He now has one seizure a day. Sometimes, he doesn't have any.
"When he would seizure he would quit breathing and he would go blue," said Katy Bartleson. "Black and blue. Every time he seizured."
Without the federal study, Liam's parents wouldn't be able to get the drug.
Possession of cannabidiol oil was legalized in Iowa last year for people with severe epilepsy. Most Iowans still can't get the drug, however, because it can't be made in Iowa or transported legally into the state.
Advocates say the law needs to be changed so Iowans have more access to the drugs, but it's unclear if lawmakers will take action on the issue when the next legislative session begins this week.
"The caucus is really focused on jobs, workforce skills, that sort of thing," said Iowa House Majority Leader Linda Upmeyer, R-Clear Lake. "So, I predict that's where we're going to spend our time and energy."
Often referred to as medical cannabis, or medical marijuana, cannabidiol oil is a compound in cannabis that has little THC, the substance which makes marijuana users feel high, but greater amounts of the chemical CBD that has medical effects.
Families from around the state, advocate groups and the Iowa Epilepsy Foundation lobbied lawmakers to pass last year's bill to legalize it in the state.
The law passed May 30 requires patients with "intractable epilepsy" to get a written recommendation from a neurologist who has treated them for at least six months. Neurologists submit the recommendation to the Iowa Department of Health, which then permits the state to issue a cannabidiol oil registration card to patients who are at least 18 years old or, in the case of a minor patient, a primary caregiver.
Neurologists have the sole authority to recommend the use and the amount of cannabidiol oil, which can be taken by mouth or rubbed into the skin.
Some states, such as Minnesota, passed laws that allow medical marijuana to be grown in the state.
The Minnesota Department of Health in December named two companies, LeafLine Labs and Minnesota Medical Solutions, as the authorized manufacturers for the state's medical cannabis program. They will be responsible for growing, processing and selling cannabis products at eight distribution sites in the state.
The companies plan to begin production this year.
Iowa residents will not be able to legally buy medical cannabis in Minnesota, which restricts the program to Minnesota residents.
State Rep. Sharon Steckman, D-Mason City, said something needs to be done to allow Iowans with epilepsy to get legal access to the drug.
"(The law) sounded good, but in practicality really won't pan out for those families like they would like to have it do," said Steckman, who also supports more research. "I really think we need to pursue it further."
Upmeyer said the law enacted last year did was it was designed to by allowing Iowans to give the drug to their children without facing prosecution from state authorities.
Even if Iowa law was changed, restrictions would still exist in surrounding states, she said.
“To be clear, in the state of Iowa we can't control other states," Upmeyer said. "And we had that conversation as we were doing the bill last year, that we couldn't affect laws in other states but in fact Iowa would not be prosecuting people."
Forest City High School graduate Katie Krug, who has ulcerative colitis, says legislators should act now. Now living in Grimes, Krug is hopeful the oil's reputed anti-inflammatory properties will ease the ulcers and sores that form in her large intestine during flare-ups of the disease.
"There just needs to be more conditions that are listed under the current law," said Krug, whose damaged large intestine may someday need to be removed. "I foresee them changing it, but I'm just not sure it will be soon enough for me."
The American Academy of Neurologists in December released a position paper calling for more research to determine the effectiveness of cannabis-based products for medical use.
It requested federal lawmakers reclassify cannabis from a Schedule 1 substance, a category reserved for dangerous drugs, to allow more studies to be conducted.
The Iowa Pharmacy Board on Jan. 5 said it supported reclassifying marijuana from a Schedule 1 substance to a classification for drugs that have potential for medical benefits. It didn't change the classification, instead kicking the issue back to the Legislature.
A spokesman for Iowa Gov. Terry Branstad said earlier this month the governor would "carefully review" any bill that passes both chambers expanding the cannabidiol law.
"Gov. Branstad empathizes with those exploring treatment options for epilepsy and other medical ailments," spokesman Jimmy Centers said in an email. "He believes the bipartisan program passed in Iowa needs time to take effect and its results evaluated before exploring expansion into other illnesses or increasing the production, processing and distribution in Iowa."
Katy Bartleson of Forest City is convinced medical marijuana has saved her son Liam's life. If the study that currently allows her family to get the oil ends before Iowa law changes, Bartleson says she and her husband, Mitch, will move to another state to get access to the oil.
"Obviously, we would stick around in Iowa if Iowa promised (access to the drug), but if we don't have any promises that we're going to get it there is no way we would stick around," she said.
— Brian Wellner from the Quad City Times and Dolly Butz of the Sioux City Journal contributed to this report.