Bill would allow marijuana oils for Del. kids with seizures

Rylie Maedler's seizures started after 2013 surgery to remove a benign but aggressive tumor that spread from her jaw to the palate of her mouth.

Now Maedler's seizures come and go, but can have a devastating impact.

They leave the Rehoboth Beach 9-year-old dizzy, her legs numb and immobile, and with headaches that can last for days.

But drugs used to treat the seizures have had their own troubling effects. One of the medicines doctors prescribed made her lethargic and unwilling to participate in normal activities.

"Like a zombie," says Janie Maedler, Rylie's mother.

Another drug's symptoms were even more concerning. The medicine caused her to become extremely agitated, and fight bouts of depression that caused changes in her personality.

"With all of the health issues that she has, the pharmaceuticals actually work against her health issues," Maedler says, adding that the drugs also worsened Rylie's jaw pain and caused degeneration in her teeth.

Now the Maedlers are helping to change the law in Delaware to allow children to legally access marijuana-extracted oils for the treatment of seizures.

Maedler said allowing legal access to marijuana oils "means a chance at a normal life" for Rylie.

Across the country, some parents have turned to marijuana oils to help treat seizures, even though there is little scientific evidence to back up its anecdotal therapeutic benefits.

Delaware Sen. Ernie Lopez, a Lewes Republican, is sponsoring the legislation that would narrowly open Delaware's medical marijuana program to minors by allowing access to the oils.

Lopez's bill would specifically allow doctors to certify minor patients to use marijuana for the treatment of intractable epilepsy or "involuntary muscle contractions that cause slow, repetitive movements or abnormal postures."

The proposal would allow Delaware children to use two oils extracted from marijuana to help treat seizures – cannabidiol oil and THC-A oil. Children would not become intoxicated from using the oils, advocates say.

Delawareans under 18 are blocked from using marijuana under the state's current medical marijuana program.

If lawmakers pass the measure, which also would allow adults with epilepsy to obtain medical marijuana, parents could seek certification from a Delaware doctor and obtain the oils from medical marijuana dispensaries licensed by the state.

The first dispensary is scheduled to open next month outside of Wilmington.

Two dozen lawmakers, including Democrats and Republicans and members of leadership, are backing Lopez's measure.

"We can't tell parents of a child that we're allowing medicinal marijuana for adults, and not for children anymore," Lopez said in an interview. "That's the real concern, which is why we want to make the change and move forward."

Fourteen states have approved cannabis oil for the treatment of epilepsy and other serious conditions. The list includes Virginia, where lawmakers earlier this year passed legislation allowing residents, including children, to use marijuana oils to treat seizures.

Lopez's bill was modeled after the Virginia legislation.

Lawmakers on the Senate Health and Social Services Committee approved Lopez's bill on Wednesday, moving it to the full Senate for consideration. Lopez expects it will go before the full Senate in early June.

"If I had the medicine, I would be almost normal again," Rylie Maedler said in an interview after the committee hearing. "I would be able to have play dates and sleepovers."

But there are still question marks. Officials at the Delaware Department of Health and Social Services, who oversee Delaware's medical marijuana program, are not throwing their support behind the effort.

"DHSS recognizes the compassionate intentions behind the bill, and we are in the process of reviewing the legislation and available medical research," says Emily Knearl, a state public health spokeswoman.

The Medical Society of Delaware also is remaining neutral, saying they are awaiting scientific evidence that marijuana oils can be beneficial.

Because marijuana has remained illegal federally, research on the drug's benefits has been difficult to pursue and is limited.

Researchers at the University of Colorado are now seeking to study the effects of marijuana on patients with a type of epilepsy called Dravet Syndrome, noting a "tremendous curiosity about medical marijuana and the treatment of epilepsy."

A spokesman for the Medical Society of Delaware said the group is following that research, which is expected to be complete in February 2016.

"We hope that this bill takes as narrow and incremental approach as possible while reliable data and results come back in 2016," Mark Thompson, the Medical Society spokesman, said of the Delaware legislation.

"It's only prudent to see the scientific evidence."

Contact Jonathan Starkey at (302) 983-6756, on Twitter @jwstarkey or at jstarkey@dealwareonline.com.