It is hard to be told that your child will never learn to read or write, he won't graduate from high school or go on a mission or get married. As we come to understand this disease and we love him unconditionally, we are grateful we have what we have. —April Sintz
SALT LAKE CITY — Isaac's family is prepared for the worst. They know that any one of the dozens of epileptic seizures he has each day may take the 7-year-old's life.
"It is hard to be told that your child will never learn to read or write, he won't graduate from high school or go on a mission or get married," Isaac's mother, April Sintz, said Tuesday. "As we come to understand this disease and we love him unconditionally, we are grateful we have what we have.
"We love him, but we live our lives in crisis mode every day," she said.
Sintz, of South Jordan, is one of several Utah moms asking the state's Controlled Substance Advisory Committee for an exception on a hemp-based supplement that would likely put an end to her son's epileptic seizures.
Alepsia, cultivated by the Colorado nonprofit Realm of Caring Foundation is a derivative of a specialized hemp plant that has shown efficacy in small clinical trials in reducing epileptic activity. It differs from medical marijuana in that it contains only a fraction of the amount of the chemicals in marijuana that produce a high, and very few, if any, side effects.
The oil extract is high in cannabidiol (CBD) but low in tetrahydrocannabinol (THC), making it non-psychoactive, according to Alepsia creator, Josh Stanley, of Colorado Springs.
Stanley said the product is as legal as other hemp products already sold in stores across Utah, including other oils, clothing and hand creams, but is illegal, federally, to take across state lines.
"The purpose of this isn't to add to the gross domestic product," he said, but it has become "a health situation" for a number of families here.
There are more than 100,000 Utahns with epilepsy and approximately 33,000 have a type of the disease that is resistant to drug treatment, requiring frequent changes in dosing and administration, resulting in a "magic cocktail" of medications that is different for everyone and ultimately takes a physical toll on the body, according to Annette Maughan, president of the Epilepsy Association of Utah and the mother of an epileptic.
Maughan said about 10,000 Utahns suffering recurrent seizures are children.
"It tears your heart out every time it happens," she said. "And then there is the roller-coaster ride that is associated with the hope you have every time you think a new drug is working and then find out it doesn't.
Maughan said she is "as upstanding as they come," but she wouldn't blink at giving her 11-year-old son the cannabis extract to control his seizures. She would not, however, permit the use of medical marijuana in her son.
A leading pediatric neurologist who has cared for children with epilepsy in Utah for more than 25 years came out in support of the use of cannabidiol oil Tuesday, saying cannabidiol oil "holds great promise as an anti-epileptic agent."
"I would like to express my strong belief that CBD-based oils should be available as soon as possible to Utah children with severe epilepsy," Dr. Francis Filloux, University of Utah professor of pediatric neurology, wrote in a letter delivered to the committee Tuesday. "The substance is not psychoactive or hallucinogenic, it contains less THC than do other materials that can be legally purchased in Utah, and it has absolutely no abuse potential."
Filloux said that if allowed, the extract's use would be closely monitored by physicians familiar with the disease. If it isn't allowed, "as a community, we would be making the decision to limit access of our children to a potentially life-improving therapy," he said.
Medical marijuana use is permitted in 20 states, including Colorado, and Stanley said he knows of hundreds of families moving to his state just to be able to purchase the product he and his brothers have carefully cultivated.
"We don't have time to wait for FDA approval," Sintz said. "This is not something we can wait years for. This is a life or death situation now."
The Realm of Caring Foundation sells its product for 5 cents per milligram, and a typical child's dose is about 2 to 3 milligrams per pound of the child's weight per day. In some cases, it is provided on a sliding scale or free of charge, depending on the family's ability to pay.
Jennifer May and other mothers of children with a particularly debilitating form of epilepsy, Dravet syndrome, have contemplated establishing a shared residency in Colorado, but it would mean giving up residency benefits in Utah, which many families cannot do.
"Not one of us has left this state to get this supplement," May told members of the committee. "We are waiting to do this the right way by not breaking laws or keeping information from our physicians about how we are treating our children."
"It's a terrible, destructive, degenerative disease," said Cameron May, adding that he and his wife are "not naturalists" after the next great plant-based remedy for their son, but are fighting for a cause.
"People do not uproot their families, sell their homes and move their entire lives on a hope," he said. "The long-term effects of not doing this can be severe disability, mental retardation and death."
The advisory committee does not have the last say in whether the product can be made available in Utah, but the group of physicians, pharmacists, law enforcement officers and others do provide input to state leaders who can make changes to state law.
Rep. Gage Froerer, R-Huntsville, said Tuesday's meeting was the first step in the process of pursuing legislation that would not legalize medicinal marijuana in Utah but would standardize THC levels in legalized products, establish the logistics of interstate commerce, and pave the way for academic institutions in the state to conduct further research on the use of cannabidiol oil and its naturally occurring chemical elements.
"This is far safer than anything we're giving my son right now," Sintz said. "We have no choice. (His medications) are not controlling his seizures, and yet they are causing kidney damage. The medicine he is on right now is horrible."
Sintz said she believes Alepsia could curb further damage to her son's kidneys and also give her son, whose epilepsy was caused by a spontaneous genetic mutation, as much of a normal life as he is capable of living with the progressive form of the disease.
"This is going to help us tremendously," she said. "It is absolutely better than what we're dealing with now."