PHOTO: Renee Petro
In recent weeks, there has been an explosion of newly proposed legislation on CBD-rich cannabis extracts, the type of medical marijuana featured as a treatment for epilepsy in Sanjay Gupta’s “Weed” special in the summer of 2013. Parents fighting for the lives of their epileptic children are desperate for treatment that works, and the power with which these parents can fight should not be underestimated. One would imagine their strong voices would be a huge boon to the reform movement, but instead what has happened is the creation of a great divide: CBD-only vs. whole plant medical marijuana. And in the pediatric cannabis advocacy community, the debate has gotten really ugly.
While advocates for broader medical marijuana legislation often cite a “no child left behind” policy – meaning that children with cancer, autism, and other conditions would respond better to medicine with higher levels of THC – there is another part of the debate that has been largely missing from the media coverage:
According to parents who have been effectively treating their children’s epilepsy with cannabis for years, CBD-rich extracts alone are unlikely to provide adequate seizure control without THC supplementation.
“Initially, when I leaned about CBD I would hear high CBD, low THC is the way to treat seizures,” says Renee Petro, a Florida advocate whose son Branden suffers from FIRES, a form of intractable pediatric epilepsy. “I lobbied for CBD-only legislation because I thought it would save Branden’s life. But as I learned more, I realized that was wrong.”
While Petro acknowledges the importance of broader legislation to help kids with conditions like cancer – “we don’t want to help just ourselves, we want to help everybody,” she says – as Petro learned more about cannabis, she also realized that Branden would likely need more THC than the law would allow in order to control both his seizures and the other symptoms of his disease.
One of the people who helped Petro learn about medical cannabis was Rebecca Hamilton-Brown, whose son Cooper has Dravet Syndrome, the same form of pediatric epilepsy as Charlotte, the namesake of the CBD-rich Charlotte’s Web strain. Hamiton-Brown has been treating Cooper with medical cannabis for two years, so she has had more experience with this treatment than most of the parents in the online Pediatric Cannabis Therapy (PCT) group she founded with a handful of other parents in early 2012. The group has now grown to more than 3,000 members, and is a virtual hotbed in the debate over CBD vs. THC.
When she first learned about medical cannabis treatment for epilepsy, says Hamilton-Brown, “I drank the kool-aid. It was all about CBD, it was going to be a cure, and I preached it to anyone who would listen.” She located a strain in her home state of Michigan with the highest CBD:THC ratio she could find.
“In February 2012 there were only a handful of us doing it,” recalls Hamilton-Brown. “I started PCT because we had no idea what we were doing and we needed other parents to talk to, to ask what are you using? What’s working? and hammer our way through it.”
What Hamilton-Brown found was that no two children seemed to have the same exact response to treatment, nor did even the same child at different times. “This is not a therapy that’s like going to a pharmacy for a pill,” she explains. “It’s something you have to tinker with and as your child is on it longer, you need to adjust it, not just in dosage but in terms of THC content. There are a lot of factors that create a need to change the regiment. If you want the best seizure control, there’s not necessarily a dose you can always just stick with. You need to be open-minded.”
Currently, Hamilton-Brown is treating her son with both a 25:1 and a 2:1 strain. “We give (higher THC oil) to him as needed,” she explains. “Anything that causes stress or excitement is a (seizure) trigger for him, and THC takes the edge off and helps him not to have a seizure.” Hamilton-Brown says factors like puberty, medication changes, minor illnesses, and any type of excitement in her home can cause stress which leads to increased seizure activity; she supplements Cooper with higher THC during stressful times.
But regardless of ample evidence that adding THC can help control seizures, many parents are reluctant to consider anything but CBD-rich strains for their child. “People in Colorado are doing the same thing (adding THC), but they are reluctant to talk about it,” says Hamilton-Brown, who believes that many parents are fearful of making their children “high.”
This is no wonder, considering that one of the powerful political arguments for CBD-only legislation is that such strains are not psychotropic, and parents who have watched their children suffer through highly psychotropic pharmaceutical treatments are clinging to the hope that seizure control can be achieved without any psychoactivity. It’s a belief system that Hamilton-Brown says is highly unrealistic.
“They hear CBD and think that’s all they need, and it’s not,” she says. “Their lack of experience and lack of knowledge is being used to shape legislation that will affect a lot of people.”
Indeed, if CBD-only legislation is passed, there are likely to be a lot of disappointed parents who realize that the formula isn’t working for their child. And “baby steps” legislation is dangerous, as it can be very difficult to change such laws once a precedent has been set. “What if they get it passed and the ratio doesn’t work for their kid?” Hamilton-Brown asks. “Then what? I don’t want them to have to learn the hard way. ”
Renee Petro agrees. “What they’re doing at Realm of Caring is just wonderful,” she says. “They have done so much to help people. But the perfect picture is not the way it is – it’s not everyone’s reality. It’s misleading.”
“While Charlotte’s Web is helping many, it’s not the only option out there,” says Petro. “One particular thing isn’t going to work perfectly for everyone because all these kids are different.”
So should parents who have advocated for CBD-only legislation change their tune and instead fight for broader medical marijuana laws? Absolutely, says Dana Ulrich, one of the parents leading the push for medical marijuana in Pennsylvania.
“Of course CBD-only legislation was discussed among parents here because we wanted to make sure we explored every option,” says Ulrich. “We quickly decided that eliminating THC or any other components and not fighting for whole plant therapy would leave so many people in Pennsylvania without the help they need and deserve.”
The key, Ulrich believes, is education – listening to experienced parents like Hamilton-Brown. “I truly believe that when people take the time to be educated on the science behind cannabis therapy, they have no other choice than to jump, enthusiastically, on board,” says Ulrich.
Petro, Hamilton-Brown, and Ulrich all agree that not only will broader legislation help their own children, it’s important to consider the other patients who will be affected.
“We don’t want to do what’s right for just a small amount of people because we’re desperate,” says Petro. “I have a friend whose child has an auto-immune disease. He needs THC. How could I look my friend in the eye and say sorry, you’re out of luck, my kid’s more important than your kid?”
But once lawmakers are on track for CBD-only legislation, can parents change their minds?
“The politicians wouldn’t be in power if it wasn’t for us so they will listen to us,” says Petro. “You can’t be afraid to say what you believe. They will listen.”
“These parents get sucked into the idea that their legislators have the power,” says Hamilton-Brown, “But we as parents have the power.”
“What happened to digging in and fighting? All kids deserve for us to fight for them so they can have this medication.”