- Associated Press - Thursday, March 6, 2014

SALT LAKE CITY (AP) - A Senate committee Thursday unanimously approved a bill allowing Utah parents of children with severe epilepsy to legally obtain a marijuana-derived extract they say helps with seizures.

After receiving a 4-0 vote from the Senate Health and Human Services Committee, the legislation now moves to the full Senate for consideration. Approval there would clear the way for the bill to reach Gov. Gary Herbert’s desk.

The measure, sponsored by Huntsville Republican Rep. Gage Froerer, deals specifically with a cannabis-extract oil, which is believed by many to help children with a rare form of epilepsy known as Dravet syndrome.

The oil is grown in neighboring Colorado, but state and federal law do not allow it to be brought into Utah.

Froerer’s bill would allow the oil to be brought back to Utah from Colorado with a neurologist’s consent.

“Basically, it would allow it up to them to seek out this product wherever it may be,” Froerer said. “There’s no distribution in the state of Utah.”

The bill is restricted to those with severe epilepsy for whom the regular treatments are not effective.

“We’re not talking about the 70 percent of people that are responding to medications,” Annette Maughan, president of the Epilepsy Association of Utah, told lawmakers Thursday.

Maughan said her 11-year-old son has the disease, which “causes a great deal of deterioration, both mentally and physically.”

“We didn’t think he was going to make it to 11,” she said.

Other products similarly derived from hemp, such as lotions and drinks, can be purchased in Utah, but those are generally products from Canada, she said.

But because of conflicting federal laws dealing with international trade and controlled substances, Maughan said similar products such as the cannabis extract they’re seeking are not allowed to be imported from nearby Colorado.

Doctors and others have warned that there’s no proof yet that the extract is effective at treating epilepsy or even safe.

In Colorado, the state health department’s chief medical officer has warned there’s no peer-reviewed, published research to support the claims.

The American Epilepsy Society has cautioned that reports of the extract helping to treat epilepsy are only anecdotal and encourages people to consult a specialist.

Froerer acknowledges there’s no information about what the long-term effects of the drug might be, but said there are so few options for those with the disease that another treatment should be available.

“If we continue down the same path, and we only give these parents the option to use existing drugs, they have a very short lifespan. Most of these kids will only live to be 18 or 21,” he said. “If we can give them a day, a week or a month of a higher quality of life, then I feel that the state of Utah owes these parents that opportunity to seek this out.”

Jennifer May of Pleasant Grove, whose 11-year-old son can suffer hundreds of seizures a day, has helped lead the push to change Utah law.

“We believe that every treatment option should be available to every child,” May told lawmakers.

May said she and other parents don’t want to break the law and don’t want to move to Colorado because they want their doctors to be able to track progress with the extract.

While Froerer’s bill clears the way in Utah law for the product to be brought in the state, lawmakers noted it would still technically be a violation of federal law, though officials with the U.S. Drug Enforcement Administration are unlikely to enforce it in these situations.

“They know very well that this may not protect them from the DEA if the federal prosecutors stepped in,” Froerer said.

Sen. Evan Vickers, R-Cedar City, framed it as another state’s rights issue, something his fellow Republicans reference in regard to marriage laws and public lands, among other issues.

“If we as a state decide this is in the best interest of our citizens,” Vickers said, “We should have the right to let our citizens do it.”

The extract contains less than half a percent of THC, the hallucinogenic chemical found in marijuana.

Utah’s Republican-led legislature has traditionally been opposed to efforts to decriminalize marijuana, and lawmakers Thursday were careful to note that they’re still opposed to that and allowing further use of medical marijuana in the state.



HB 105: https://1.usa.gov/1niCOb4

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