Lisa Bernard-Kuhn

lbernard@enquirer.com

Scroll down for how cannabis is administered and how it could be legalized

Two-year-old Addyson flashes a toothy grin, unaffected by her newly busted lip and black eye – injuries from her latest seizures.

"She has bite marks all up and down her arms," says Heather Benton of her blue-eyed toddler, who has hundreds of seizures a day. "We think she's weaning from Onfi, her last medication that didn't work."

The Bentons are among a growing number of families in Ohio and across the country who are uprooting their lives for the chance to help their child with a drug that might work: medical marijuana.

In December, Addyson's father, Adam Benton, became an official resident of Colorado, one of 20 states where medical cannabis is legal. Addyson is on a waiting list for a strain grown there known as Charlotte's Web. It's named after a 7-year-old who, when given the cannabis strain in an oil form, saw her seizures drastically reduced.

Since this story posted Sunday morning several conversations have started on Facebook and Reddit. Follow them here:

Facebook post #1 | Facebook post #2 | Reddit thread

The Bentons will move as soon as Addyson comes off the waiting list, which they hope will be October - leaving behind the Liberty Township home they built less than a year ago and the friends and family who have supported them.

"It's so sad to know that Addyson won't be able to see her family because there is just such a lack of understanding about medical marijuana in our government here," said Heather Benton. "Not one part of me is afraid to give Addyson medical marijuana, but I'm terrified to keep giving her the medications she's been prescribed, that haven't worked, and have all these horrible side effects."

The federal government considers marijuana a Schedule I drug, listing it among the "most dangerous" substances, alongside heroin, LSD and methamphetamine.

The classification places enormous restrictions on scientists, medical experts and pharmaceutical companies that make in-depth research and clinical trials on the drug "nearly impossible," says Dr. Amy Brooks-Kayal, vice president of the American Epilepsy Society, which supports medical cannabis research.

"We have a great need for new therapies in epilepsy, but the challenge (with medical marijuana) is that all we have is anecdotal evidence," said Brooks-Kayal, who is also a Colorado-based neurologist.

The limited research that has been done shows that marijuana can aid several conditions.

"It works well for anxiety. It works for glaucoma. People who have tremendous weight loss, it helps with appetite," said Dr. Judith Feinberg, associate chair for the Department of Internal Medicine at the University of Cincinnati's College of Medicine.

In 1999, she was among a panel of experts tapped by the Institute of Medicine to study existing data on medicinal benefits of marijuana.

But legalizing marijuana in states where it is banned, Feinberg said, may not equate to new research for ground-breaking drugs. That's because getting new drugs approved by the FDA, often first requires the interest of pharmaceutical firms, ready to spend big on research for drugs they deem will win them a profit.

"Even now that it's legal in a number of states, there doesn't seem to be a drug company that sees it's worthwhile," she said. "There doesn't seem to be enough profit margin in it for them."

Dad hopes legislators will be spurred by family stories

Stories like Addyson's hit home with Scott Nazzarine of Columbia Tusculum.

His 5-year-old daughter, Sophia, has undergone two brain surgeries. Like Addyson, she takes medications for seizures she still suffers almost weekly.

"I have clients who are abusing the same medicines my 5-year-old is taking," said Nazzarine, a lawyer in Hamilton County's Public Defender's Office. "That's terrifying to me that's she's taking drugs that are so heavy, some people want to buy them on the street."

He too has considered the move to Colorado, but hasn't progressed as far as the Bentons.

"I would bet my life that any negative effects from ingesting a small amount of medical-grade marijuana would be less harmful than the seizures my daughter continues to have despite every accepted cure we've tried," said Nazzarine.

For now, he's hoping the Ohio Legislature will be spurred to action by stories like Sophia's and Addyson's.

"I can't imagine the governor or state representatives hearing her story and thinking, 'No, we're just going to ignore this,' " he said.

While Nazzarine also supports a petition drive to put a medical marijuana referendum on Ohio's fall ballot, he believes "it would be a lot easier if the Legislature would just do it, instead of making people get hundreds of thousands of signatures and spend all this money to make it happen."

The Bentons are less optimistic about the or the ballot initiative or the possibility that the Legislature might act.

"We've sent letters to every single representative, asking for their support," said Adam Benton. "They don't know what it's like to constantly check in on your child at night, not knowing if she is still going to be breathing because she just had seizure. If it doesn't affect them personally, they don't care."

Addyson was just 8 months old when she had her first seizure. By 14 months, she was diagnosed with myoclonic epilepsy, a potentially fatal condition should her seizures become uncontrollable. Her latest prescription, Depakote, carries the risk of liver failure.

The Bentons admit that what they know about Charlotte's Web is limited to their own research, support groups and media reports about the Realm of Caring. That's the Colorado Springs-based group whose founders produce Charlotte's Web, a strain of medical marijuana that is high in cannabidiol, also known as CBD. It's a chemical in cannabis thought to have medicinal properties. The marijuana strain is also low in tetrahydrocannabinol, or THC, which is the chemical that makes users high. More than 180 epileptic children have begun treatment with Charlotte's Web, according the Realm of Caring.

In December, the Bentons visited the greenhouse, and received the sign-offs they needed from two Colorado-based physicians for Addyson's prescription. But the drug is in such high demand that the Realm of Caring has started a waiting list. By October, a new harvest is expected to be ready from a crop that's being grown exclusively for patients like Addyson.

"When we first heard about Charlotte's Web, we brushed it off, like so many people do," said Heather Benton. "But then we began researching, and hearing the stories, we were sold. Our doctors here who are seeing kids that have failed all these other medications should be telling families that there may be another option."

Medical professionals fielding questions about cannabis

The American Medical Association opposes legalizing the sale of marijuana, calling cannabis a "public health concern."

But as media reports about Charlotte's Web have increased, doctors and neurologists are getting more questions from patients about the drug's potential.

"We get hit with this question all of the time," said Dr. Bassel Shneker, an associate professor of neurology and professor of pharmacy at Ohio State University.

Dr. Michael Privitera, director of the Epilepsy Center at the University of Cincinnati Neuroscience Institute, said he tells patients and their families seeking medical marijuana that "we don't know the long-term side effects, and we don't know what the drug interactions are like."

In Colorado, Brooks-Kayal says no neurologists are prescribing Charlotte's Web, though they will continue to treat patients taking the drug.

"We still absolutely want to provide the best care for both adults and children with epilepsy," she said. "We let the families know our concerns and why we don't prescribe, but certainly if they chose to use a marijuana derivative we continue to treat them."

Privitera, who also serves as the second vice president of the American Epilepsy Society, added: "We know some people have used marijuana and their seizures have improved, but others have also taken it and haven't seen their seizures get better.

"We need to understand this compound better, and that's going to require comprehensive research and studies."

Legalizing medical marijuana in states such as Ohio, Indiana and Kentucky "will absolutely open the door for more research," said Shneker. "But the challenge will be that from Day One, patients will come in asking for it. And we still wouldn't know how much to prescribe."

MORE ON THIS STORY:

How is it administered?

Cannabis may be taken by mouth or can be inhaled.

When Cannabis is smoked and inhaled, cannabinoids more quickly enter the bloodstream.

When taken by mouth, the marijuana or hemp can be baked into food or even used as an herbal tea. With Charlotte's Web, the cannabinoid is turned into an oil that can be taken by mouth as-is or placed into an empty medicine capsule.

Source: National Institute of Health, Realm of Caring

How it could be legalized

Ohio

Ballot initiative: Of the three approved ballot initiatives, the Ohio Cannabis Rights Amendment has the most momentum. It would allow the use, possession and production of cannabis for those diagnosed with a qualifying disease. It would also allow individuals and companies to produce and sell hemp. The ballot initiative has only 50,000 of the more than 385,000 signatures it would need by July 2 to qualify for the November ballot.

Bill: Would allow patients with qualifying diseases to register to be able to grow or use cannabis for medicinal purposes with a doctor's recommendation. The bill received one committee hearing last year and is not likely to advance. Only three lawmakers, all Democrats, have signed onto the measure so far.

Joint resolution: Would legalize marijuana use – recreational or medicinal – for anyone age 21 or older. Driving under the influence would remain illegal. The resolution received a committee hearing last year and is not likely to advance. It would need a three-fifths vote in the House and Senate to get on the ballot for Ohio voters to decide its fate. Only two lawmakers, both Democrats, have signed onto the measure so far.

Kentucky

Bill: Democrats have introduced bills in both the House and Senate that would legalize medical marijuana for patients with qualifying diseases. They must register with the state and have received a doctor's recommendation. The House bill last week passed out of a committee, but even if it passes the full House, it is not likely to advance in the Senate. A bill allowing cannabidiol to be prescribed through the University of Kentucky and University of Louisville or in clinical trials approved by the U.S. Food and Drug Administration has passed the full Senate and a House committee.

Indiana

Bill: A perennial bill in the Senate would remove jail time for possessing less than two ounces of marijuana. (Ohio levies a fine, not jail time, for possessing small amounts of marijuana; jail time is a possibility in Kentucky.) The bill is not likely to advance. Still, 52 percent of Hoosiers say marijuana should be regulated like alcohol, according to an October poll of 605 adults taken by Ball State University and WISH-TV, an Indianapolis station.

Who could use it

The use of medical cannabis in Greater Cincinnati would likely be limited to the residents of whichever state were to act first.

For example, the Ohio Cannabis Rights Amendment would allow Ohio adults, or children who have the consent of a parent, to use, possess, produce and acquire cannabis if they've been diagnosed with a "debilitating medical condition." Qualifying diseases would include glaucoma, cancer, AIDS, Crohn's disease and chronic pain or nausea.

After receiving the diagnosis from a doctor, patients would take their medical records to a state agency to receive a card that certifies them to use medical marijuana. A new state commission would determine which medical conditions beyond the initial list are eligible for marijuana use, such as seizures or attention deficit hyperactivity disorder.

The commission would also have the authority to grant reciprocity with other states that have medical marijuana, such as Michigan, or otherwise expand the amendment's reach.

The medical marijuana bills introduced in Ohio and Kentucky would allow non-resident patients to use pot for medicinal purposes, but only if they received a card from their home state that certifies them to use medicinal cannabis. So residents of states where pot is still illegal wouldn't be allowed to use the drug.

- Chrissie Thompson

I cover the health care industry and how it affects you and your family. You can reach me at lbernard@enquirer.com.