By Anne Pyburn Craig
Jobe Publishing, Inc.
Growing up, Kristin Wilcox of Morgantown had a dream of what life could be. “I was going to become a doctor,” she says. “And have a whole houseful of kids, grow our own food, be self-sufficient.”
She got her undergraduate pre-med studies done, and then had her daughter Shelby. And when Shelby was just four months old, everything changed. “She had her first seizure at four months, and by the time she was five months old, she was having hundreds of them a day,” says Wilcox. “She spent her first three Christmases and birthdays in the hospital. By the time she was four, she’d been Life Flighted 26 times.”
Sometimes you have no choice but to put dreams on hold. In 2008, a trip to the Cleveland Clinic finally brought a diagnosis: Dravet’s syndrome, a rare and severe form of epilepsy. Dravet’s patients require constant care, many die before the age of ten. It was awful news, but it gave Wilcox a lead to follow in her endless investigation. “I lie in bed with her cuddled up to me every night — I can’t let her sleep alone in case she seizes — and I’m all over Google, WebMD, obscure research sites,” she says. “Any little clue I find, I’ll follow to the end.”
One day she came across the story of Charlotte Figi, a Dravet’s patient from Colorado whose story sounded a lot like Shelby’s: an endless search for medication that would calm the neurological storms that were dominating her life. After being told there was nothing left to be done, Charlotte’s parents heard of a California patient who’d gotten relief from low-THC, high-CBD marijuana, and when Charlotte became Colorado’s youngest medical marijuana patient, her seizures let up.
“The next time we saw her primary neurologist, I asked him about it, and he said they’d been talking about marijuana and epilepsy even when he was in med school,” she says. “His enthusiasm led me to more research, and I found Dravet’s families in California who said it was like a wonder drug. Their kids were learning to walk and talk, playing sports.”
As a Kentuckian, Wilcox knew that marijuana was not a legal option, and even though some suggested she try it anyway, she didn’t dare. “What happens if Shelby gets sick and they do urinalysis? I was worried the state would take her away,” she says.
Then she found GW Pharmaceuticals, a world leader in plant-based cannabis medicines, and Dr. Gregory Barnes, a pediatric neurologist and Director of University of Louisville’s Autism Center who had been running trials of cannabis-based Epidolux in other states. The studies were only possible because of a 2014 Kentucky law legalizing CBD oil, and the results were promising. Wilcox started pushing and didn’t let up until in March 2016, Shelby got her first dose of CBD.
CBD, or cannabidiol, doesn’t have the psychoactive effect of THC (tetrahydrocannabinol), the compound that makes marijuana users feel “stoned.” But even if it had, Wilcox knew that conventional prescriptions were far from safe. “Shelby has been on over 40 different drugs, most of them toxic to her liver,” she says. “She was given a pill one time that knocked her out for three solid days. Talk about wasted. I could never do that to her again.”
Epidolux proved to be different. Twenty-nine days after her first dose, Shelby was able to do things she’d never done before — sit in a chair unaided, feed herself. At twelve, Shelby is increasingly verbal. “I lost my girl at four months and she is finally back,” says Wilcox. “Her dad made her a ring and she is starting to like makeup and jewelry. She’s got a personality now! She can be hilarious and sarcastic, sneaky and manipulative. I see a lot of me in her.”
So this year, as Kentucky legislators consider HB 166 — the latest in a series of attempts to legalize medical marijuana — Wilcox is wielding her Facebook like a battle sword, making sure those legislators see before and after videos of Shelby, writing resolutions she wants to see introduced in Butler County and Morgantown, speaking up to anyone who will listen.
“I don’t expect the local resolutions to pass,” she says. “But I want the people who are against this to have to look me in the eye and explain why not, in front of the people who vote for them. If these don’t pass, I’m going to try to get something through the Farm Bureau — they’re all on board, but they’re scared.”
Across the state, in the Mason County countryside, Michelle and Eric Crawford have been fighting this battle since 2013. Eric, quadriplegic since an accident at age 22, finds cannabis the best source of relief from his muscle spasms. And the couple believes it may be his best hope in saving his vision from glaucoma, which threatens to blind him in his forties.
“If this were about getting high, he could just take the prescription drugs that his doctors would openly and willingly prescribe,” says Michelle. “But pain pills change his whole personality. This doesn’t.”
The use of medical marijuana to treat glaucoma is well settled, as is its effectiveness in treating chronic pain and the nausea that comes with chemotherapy. CBD and THC are just two of over a hundred active compounds in cannabis, which has been used medicinally in other cultures for thousands of years and was part of the US pharmacopeia until it was banned in 1937. Its current status as a Schedule 1 narcotic frustrates researchers, who say that much remains to be learned about both its benefits and risks. The human body actually makes cannabinoids — called endocannabinoids — and has specialized receptors for the drug.
Both the Kentucky State Police and the Kentucky Association of Chiefs of Police have come out in opposition to HB 166, citing threats to public health and safety. But supporters like the Crawfords, who lead Kentuckians for Medical Marijuana with Louisville cerebral palsy sufferer Jaime Montalvo, point out that the 29 states where medical marijuana is allowed have seen opioid prescriptions fall by 11 percent, overdoses by 25 percent, and no huge increases in teen use.
HB 166 would establish a regulatory framework that supporters hope would take the plant out of the hands of the black market and offer relief to addicts in withdrawal, cancer patients, and those with seizure disorders. Even though CBD oil is legal in Kentucky, its federal Schedule 1 status means that doctors can’t prescribe it outside of clinical trials like Shelby’s. Under HB 166, that would not change, but Kentucky doctors would be able to suggest it and patients would have safe access.
“If the bill passes, we’ll be able to find the exact strains that are best for my daughter,” says Wilcox. “Kentucky has the highest per capita rate of children with seizure disorders and autism in the US. And not to be a smart aleck, but marijuana is a huge cash crop of long standing here. Yet there’s a lot of fear around supporting legalization.”
“If we had 1000 moms speaking out like Kristin, this would already be legal,” says Michelle. “We’ve been all over the state holding educational town halls, we go to Frankfort all the time. One leading legislator says you can find our picture in the dictionary under ‘persistent.’ We’re not hippies, we’re not malcontents; we’re just regular country people wanting the best possible health and safety. We started this for Eric’s pain and his vision, but there are little kids all over Kentucky who need this. And cancer patients. And veterans. States with medical cannabis are seeing fewer veterans lost to suicide, and with 22 dying from it every day, how can we deny them relief? Because you’re afraid people will be getting high on every corner? People who just want to get high are already doing that — it’s the law-abiding souls who get stuck with no relief.”
The medical marijuana proposal is currently before the House Judiciary Committee. To have your say for or against HB 166, call the legislature at 1-800-372-7181.