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New Iowa hemp law will limit some families' ability to treat children's seizures with CBD

Gazette - 6/9/2024

Jun. 9—Alyssa Loeffler plays with her 2-year-old son, Ozias, on May 31 at their home in Cedar Rapids. She says Ozias is a happy and energetic boy now that he uses CBD oil to quell his seizures. Use of the hemp-derived oil has allowed her to wean Ozias off Keppra, an anti-seizure medication with substantial side effects. (Savannah Blake/The Gazette)

CEDAR RAPIDSAlyssa Loeffler's son, Ozias, began experiencing non-convulsive seizures when he was 9 months old. Each time, she thought he might die as she watched him stop breathing and turn blue from head to toe.

"It looks like he's choking," she said.

The Cedar Rapids resident, 33, said her son would have up to 15 seizures a day and was hospitalized several times as his health care team struggled to help him.

Loeffler said doctors prescribed the widely used anti-seizure medication Keppra, increasing the dosage to the maximum for a child his age. She worried about the long-term effects of the drug, which can cause rare but serious behavioral side effects, especially as her son continued to have breakthrough seizures.

At a loss as she and her boyfriend continued to watch their son suffer, Loeffler — who was living in Texas at the time — flew her son to Cedar Rapids, where her father, former Cedar Rapids City Council member Patrick Loeffler, was taking hemp oil to control his seizures.

Her family owns Corner Store Apothecary & More in Cedar Rapids' Czech Village, which her mother opened in 2017.

Loeffler said the children's hospital in Texas was unwilling to try full-spectrum hemp extract that contains the full range of naturally occurring cannabinoids, including small amounts of THC — the main chemical in cannabis that causes the high.

Alyssa Loeffler gives her 2-year-old son, Ozias, CBD drops May 31 to help prevent his seizures. She began using a CBD tincture that has restored the child's energy and helped stop a majority of his seizures. (Savannah Blake/The Gazette)

But the results from the CBD oil purchased in Cedar Rapids, Loeffler said, were almost immediate. Ozias has been seizure-free for a year.

"The CBD oil has been a godsend," Loeffler said. "And it allowed us to slowly wean him off the Keppra. He was a zombie when he was on Keppra."

Today, using only the low-THC oil made from the hemp plant — commonly called cannabidiol or CBD — Loeffler said Ozias is a typical 2-year old who is talking, playing and full of life.

Alyssa Loeffler smiles May 31 as she dances to a song with her son, Ozias, 2, at their home in Cedar Rapids. The toddler loves to dance around the living room to music. Ozias began suffering from non-convulsive seizures at 9 months old and eventually was prescribed an anti-seizure medication called Keppra. They noticed the medication drained the young boy of energy and described him similar to a zombie. (Savannah Blake/The Gazette)

"Consumable hemp products have changed our lives for the better and led us to move back to Iowa," Loeffler said.

But she said the family now worries a new law set to take effect July 1 will rip "this lifesaving treatment away from our families and make us criminals."

What's in the new law?

Faced with the proliferation of hemp-derived THC, state lawmakers passed and Gov. Kim Reynolds last month signed into law House File 2605. The law will cap the amount of THC in consumable hemp products sold in Iowa at 4 milligrams per serving and 10 milligrams per package or container.

Many products on the shelves in stores now exceed those limits, including the 500-mg bottle of CBD oil Loeffler buys for her son from her family's Cedar Rapids store.

A bottle of CBD tincture that is used to treat 2-year-old Ozias Loeffler's seizures sits at the family's home in Cedar Rapids. (Savannah Blake/The Gazette)

The state law also bans the sale and consumption of any hemp products for minors, requires hemp products to have a warning label and bans the sale of synthetic THC.

"Iowa's bill would make it illegal for me to provide full-spectrum CBD to Ozias, and would create packaging restrictions that would effectively remove it from shelves, eliminating access to the nonintoxicating consumable hemp products he uses for seizure control," Loeffler said.

Alyssa Loeffler plays with her son, Ozias, 2, on May 31 at their residence home in Cedar Rapids. She says her son is a happy and energetic little boy now that he utilizes CBD to help quell his seizures. (Savannah Blake/The Gazette)

Consumable hemp products were legalized in the 2018 federal farm bill and later the Iowa Hemp Act. The laws allow for the sale of hemp products that contain less than 0.3 percent THC by weight.

The laws were intended to address sales of non-intoxicating compounds like cannabidiol, but they also legalized the sale of hemp-derived THC products that have a similar psychoactive effect to traditional marijuana.

Iowa's majority Republican lawmakers said the bill was needed because the industry had little regulation — including no legal age limit for purchase, no cap on THC potency and no uniform standards for packaging or labeling — and did not intend to legalize intoxicating products when they passed the Iowa Hemp Act.

Reynolds reluctantly signed the bill to prevent minors from purchasing psychoactive hemp products.

"I have concerns about this bill and have heard from individuals and groups on both sides of the issue," Reynolds, a Republican, said in a statement. "Ultimately, I am signing it into law to protect minors from dangerous and intoxicating products. At the same time, we've taken steps to ensure that children who are resistant to medications and suffer from seizures and other medical conditions continue to have access to consumable hemp alternatives for relief."

Retailers speak out

Hemp retailers opposed the bill, saying it would cripple Iowa's consumable hemp industry and eliminate access to safe, legal nonintoxicating consumable hemp products Iowans use every day.

An estimated 800,000 Iowans are regular consumable hemp consumers, spending an average of $600 a year, according to the Iowa Healthy Alternatives Association and Consumable Hemp Advocates of Iowa.

Roughly 1,100 Iowa retailers are licensed to sell consumable hemp products in the state, and generate an estimated $480 million in sales, advocates said based on state records available at Iowa's Consumable Hemp page.

"We will continue to advocate for the rights of Iowans to access safe and legal hemp products," said Rick Wagaman, owner of HW CBD in West Des Moines. "Signing House File 2605 into law is neither financially nor politically prudent. It threatens the health, safety and well-being of Iowans, disrupts the local economy and sets the state on a collision course with federal legislation."

Rick Wagaman, owner of HW CBD in West Des Moines (Contributed photo)

The U.S. Drug Enforcement Administration announced last months plans to reclassify marijuana as a less-dangerous Schedule 3 drug, recognizing its medical uses and acknowledging it has less potential for abuse than some of the nation's most dangerous drugs.

Wagaman and other advocates say the law reverses progress made by previous legislative sessions that passed laws allowing parents to bring CBD into Iowa for treating epilepsy, and established a legal framework for medical cannabis and consumable hemp.

"Iowans have had access to these safe and legal products for years, and this bill unjustly strips away this access," advocates said in news release.

Medical cannabis program offers legal protections

Products are expected to continue to be readily available in other states and online. The Iowa Department of Health and Human Services, which regulates consumable hemp products in the state, says it will have limited means to prohibit online sales in Iowa or stop individuals from purchasing products in other states.

Iowa's medical cannabis program provides an affirmative defense for possession of all cannabis products, if those products are in a form and quantity that is allowed under the program. The legal defense applies whether the products were manufactured and dispensed in Iowa or acquired elsewhere.

Established in 2017 and launched in 2018, Iowa's medical cannabis program allows individuals with certain eligible conditions to access medical cannabis at five retail dispensaries in the state. The program allows the use of tinctures, capsules, tablets, creams and gels, suppositories and vaporized forms.

Patients are eligible to purchase 4.5 grams of THC every 90 days. After participating in the program, patients also are eligible for a waiver to the purchase limit.

Many pediatric patients use a broad spectrum oral product that contains less than 4 mg of THC per serving, but may contain greater than 10 mg of THC per container.

"Patients who possess these forms will have an affirmative defense (against) prosecution for possession, provided they are registered cardholders with the medical cannabis program," according to Health and Human Services Department.

Eligible conditions include cancer; chronic pain; terminal illness; Parkinson's disease; post-traumatic stress disorder; ulcerative colitis; AIDS or HIV; severe, intractable autism with self-injurious or aggressive behaviors; and seizures, including those characteristic of epilepsy.

Because of the rare nature of her son's non-convulsive seizures, Loeffler worries he would not be eligible under Iowa's medical cannabis program.

"When he's in the middle of a seizure, I have two options: Give him the (CBD) oil, or administer a rectal gel" used to stop repeated seizure clusters that carries a risk of overdose, she said.

"I have Narcan," Loeffler said, the brand-name medication used to reverse an opioid overdose if one were caused by the gel.

Ozias Loeffler, 2, plays with a toy May 31 at home in Cedar Rapids. He began experiencing non-convulsive seizures at 9 months old and, as they progressed, could happen up to 15 times a day. (Savannah Blake/The Gazette)

"It's upsetting. It's scary. It's heartbreaking," she said of the possibility of no longer being able to readily provide a natural health treatment option for her child — the one thing proven to control his seizures without the worrisome side effects and risks.

"I could lose my son," Loeffler said.

Should it be determined her son does qualify under Iowa's medical cannabis program, Loeffler said the new law still creates unnecessary hurdles and burdens for families like hers.

Alyssa Loeffler plays with her son, Ozias, 2, in the yard at their home in Cedar Rapids. Since he has started taking CBD, he has been seizure free for nearly a year, she said. (Savannah Blake/The Gazette)

"Now, I have to jump through hoops to get licenses and drive to who knows where to a dispensary to get the oil," she said. "Right now, I drive down the street. ... I don't have to cart my family around."

And buying through the state medical cannabis program may not be an affordable option for many, she said.

"How can you give us something that is saving lives just to take it away or make it more complicated for us?" Loeffler said. "You gave us an option for quality of life and, now, you're taking it away. It's just heartbreaking."

'A big, giant step backwards'

Erin Farquhar, of Dallas Center, shares Loeffler's concerns.

The 47-year-old mother spent a yearslong quest successfully lobbying lawmakers, doctors and hospitals in the state to allow patients with intractable epilepsy like her son, to possess CBD.

Farquhar's 11-year-old son, Abram, has a rare disorder called UBE2A Deficiency Syndrome, which can cause seizures, intellectual disability, motor delays and defects in the brain, heart or kidneys.

Abram Miller, 11, center, hugs his mother, Erin Farquhar, at right, as James Farquhar sits at left. Abram takes CBD oil from Colorado to control his seizures and behavior issues. Under a new Iowa law, that medication will become illegal for anyone under 21 years of age to consume. (Photo courtesy of Erin Farquhar)

He's non-verbal and exhibits self-harm and aggressive behavior, in addition to suffering from seizures.

Abram's doctors started him on an anti-epileptic drug. Initially, everything seemed OK, Farquhar said. But the seizures became worse. Her son's doctors prescribed more of the anti-epileptic drug, but Abram regressed, she said.

Unsure what to do, Abram's neurologist pulled her into an empty hospital room and told her that, though doctors could not prescribe it, patients like Abram had seen successful treatment from CBD.

Used in Iowa's limited medical cannabis market, it's been found in scientific studies to be useful at reducing the severity of seizures in those with complex medical conditions, like Farquhar's son.

Farquhar acquired a bottle of CBD oil in 2015, when her son was 3, from Colorado — the closest state at the time where she could get it.

While her son still has abnormal activity in his brain, Abram has not had an ambulance ride or a grand mal seizure in roughly nine years, she said.

For years, she drove to Colorado to acquire her son's CBD oil, risking prosecution due to state and federal regulations that prohibit transporting the drug across state lines. Now, she faces the prospects of breaking the law again.

The new state law bars anyone under 21 from possessing or consuming CBD, as well as makes it a crime for caregivers to give it to their child.

The new law makes it a misdemeanor to "sell, give, or otherwise distribute a consumable hemp product to a person under twenty-one years of age." It also mandates civil penalties and "unpaid community service" for people under 21 who consume or possess it.

Abram Miller, 11, left, hugs his mom, Erin Farquhar, at right. Abram takes CBD oil from Colorado to control his seizures and behavior issues. Under a new Iowa law, that medication will become illegal for anyone under 21 years of age to consume. (Photo courtesy of Erin Farquhar)

Meaning every time Farquhar gives her 11-year-old son the only medication that seems to work best, both will be breaking the law.

"There's so much wrong with this," Farquhar said. "... It seems like we took a big, giant step backwards."

While those with a medical cannabidiol registration card would have an "affirmative defense" from prosecution, Farquhar said those who take CBD for medical conditions not included under the state program could still be left in the lurch.

"Kids with serious disabilities not on the list for the medical cannabis cards are left in the dust rather than allowing them to continue to have access to a safe, legal product sold at Iowa health and wellness stores," she said.

Additionally, Iowa parents able to claim an "affirmative defense" could still find themselves tied up in court.

"I can't afford the legal fees to go to court," Farquhar said. "I just don't want to be in a legal gray area. ... Affirmative defense doesn't feel like a rational choice between my son being safe and getting into a potential legal battle. As a parent, this is scary."

There's also the added cost of applying for a medical cannabis card and purchasing products from one Iowa's five licensed dispensaries. The registration fee is $100 a year. Some may qualify for a reduced fee of $25.

Farquhar said a 2-ounce bottle of Haleigh's Hope CBD oil from Colorado, which contains about 60 mg of THC per bottle, is $150. To purchase an equivalent amount of oil from an Iowa dispensary would set her back $520, she said.

"That is a massive difference," she said. "Many families cannot afford to pay to play and go to the state, get the card and pay for very pricey oil."

Farquhar said she and others from the Epilepsy Foundation met with members of Reynolds' staff, trying to get an amendment to the bill to limit the sale of consumable hemp products to those under 21, but still allow children with medical complexities, like her son, to consume it. She said the group also asked the law be amended to allow a ratio of at least 15:1 — compared to the 10 mg per container cap in the new law — meaning there is 15 times the amount of CBD in a dose compared to THC.

"It's a scary situation to put families in, and it's not right," Farquhar said.

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