Utah moms lobby Legislature for access to cannabis oil for child seizure treatment

Published: Wednesday, Nov. 20 2013 10:55 p.m. MST

Members of the Utah Health and Human Services Interim Committee on Wednesday discussed the potential of bringing a product made from cannabis plants to Utah for the treatment of epilepsy in children.

Scott G Winterton, Deseret News

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SALT LAKE CITY — A drug that has potential to help Utah children who suffer from seizures may never make its way to Utah, at least via legal routes.

But one lawmaker is hoping to change things so a product derived from marijuana plants can be used to help Utah families.

"We as a state not only should but really are required to look at this very deeply," said Rep. Gage Froerer, R-Huntsville.

Froerer said the hemp oil extract, made from the cannabis plant and called Alepsia, has been shown in small studies to reduce the number of seizures epileptic children experience on a daily basis.

Of the nearly 100,000 Utahns who suffer from epilepsy, about 33,000 have refractory, or difficult to control, seizures. Of those, about 10,000 are children, according to the Epilepsy Association of Utah.

"We need to see if we can help give these children, moms and families the opportunity to lead more normal lives," Froerer told members of the state's Health and Human Services Interim Committee on Wednesday.

However, the committee's legal counsel revealed that any product that comes from the leaves or resin of a marijuana plant would fall under the Federal Controlled Substances Act, making it illegal to posses, distribute or market in the United States.

Aside from the legalities, Rep. Mike Kennedy, R-Alpine, said, "There are a lot of unknowns associated with this new substance," and the state may not be ready or willing to accept responsibility for what could play out regarding the new substance.

"Unfortunately, medications let out after scrutiny and many years of research can end up being taken back because they've harmed or even killed people," said Kennedy, a family doctor. "Are we prepared to deal with that?"

Sen. Evan Vickers, R-Cedar City, said the makers of similar nutraceuticals often claim a lot of things, "and sometimes they are not founded."

New Colorado laws allow for the cultivation and distribution of marijuana there, and many families — from Utah and elsewhere — are moving to the neighboring state to legally purchase Alepsia for their children.

Froerer said he is not seeking to legalize marijuana or even medical marijuana, only to pave the way for Utah parents of epileptic children to have access to the hemp oil extract. He also hopes to open the gates for local research on marijuana-related medical treatments at institutions statewide.

Annette Maughan, president of the Epilepsy Association of Utah and a mother of an 11-year-old epileptic child, told the committee she would have no qualms about giving Alepsia to her son.

"For many parents, Alepsia is the next step on a journey they thought was over," she said. "It's a new future where no future existed before."

The oil extract is high in cannabidiol but low in tetrahydrocannabinol, making it non-psychoactive, according to Alepsia creator Josh Stanley, of Colorado Springs, Colo. People who have purchased the product from Stanley's Realm of Caring nonprofit organization have reported few, if any, side effects, including general fatigue.

Maughan has said fatigue would be a welcome change to the many and various side effects of the "cocktail" of medications her son takes to manage his condition.

Froerer said he is open to suggestions on how to make his legislation work for Utah families, but Rep. Paul Ray, R-Clearfield, said Wednesday that while Alepsia appears to help people with epilepsy, getting it to Utah would break all kinds of rules, including federal regulations — something lawmakers aren't likely to favor.

Email: wleonard@deseretnews.com

Twitter: wendyleonards

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