CIN

Dr. Michael D. Privitera is a professor of neurology and director of the the Epilepsy Center at the UC Neuroscience Institute.

What can be more difficult than to be a parent watching your child succumb to a devastating illness when multiple medications have failed? Yet this is a common scenario for many parents of children with medication-resistant epilepsy. Many parents have moved all or part of their families to Colorado to try a special extract of marijuana with high concentrations of cannabidiol (CBD) that has been said to improve some of the most resistant cases of epilepsy. Who might this treatment help and how can we expedite research to better understand the risks and benefits of CBD?

Some 2.8 million Americans live with epilepsy, a neurological condition that includes recurring seizures. More than 1 million of them live with seizures uncontrolled by medication. Some of these people may be helped by surgery or other nondrug treatments, but for many, no answers have yet been found. There have been several stories of dramatic responses to CBD in the media, but rigorous research on CBD in adults and children is lacking.

The first step a person with epilepsy should consider before trying CBD or marijuana is a comprehensive evaluation at an epilepsy center staffed by experts in epilepsy care. The Epilepsy Center at the University of Cincinnati Neuroscience Institute is a Level 4 center that during the last 26 years has evaluated thousands of patients with epilepsy. Many patients referred to us for medication-resistant epilepsy do not have epilepsy and do not require anti-seizure medications. Other patients have their epilepsy type more precisely defined, and a simple change of treatment can have dramatic results. In selected patients, surgery for epilepsy can be curative. A careful evaluation and consideration of all available treatments should occur before any unproven treatment is prescribed.

I have spent most of my 30-year career working on research to discover new treatments for epilepsy, and I know how important rigorous research on CBD will be. First, any time a physician prescribes a drug, a decision about risks and benefits is made. Does the treatment damage liver or bone marrow? Does it impair learning, memory or behavior? Research in recreational marijuana users indicates risk for learning and behavior, so rigorous research on CBD is needed.

Second, research will test whether the treatment works better than placebo, and how it compares with existing therapies. Seizure frequency can vary for unknown reasons, and physicians and patients often are fooled into believing that a spontaneous improvement in seizures is due to a medication change we made. Many other factors – including stress – can make seizures worse. And because some medications work well for a month or two and then wear off, this possibility must also be carefully weighed in a risk-benefit decision to try a new treatment.

Third, research is needed to determine the best doses as well as a formulation that gives the same effect every day. We also need to understand how a new treatment might interfere with the effectiveness of any treatments the patient is already receiving (what are called drug-drug interactions). Before we can declare that CBD is an effective treatment for epilepsy that can be widely recommended, researchers must first answer these questions.

Research on marijuana has been hampered by U.S. Drug Enforcement Administration restrictions on using marijuana because of its abuse potential. Marijuana clearly has a high potential for abuse, but most of us in the epilepsy community believe the DEA should loosen restrictions on research for marijuana.

But for some children or adults who continue to suffer seizures after undergoing a comprehensive evaluation and appropriate treatments, the wait for completed research may be too long. Seizures are not good for the brain, especially in children, who risk falling far behind in their education.

Trying CBD is a very important, difficult and personal decision that should be made by a patient and family working with the epilepsy team. Like any other experimental treatment, the decision should weigh the severity of the disease, the risks and the possible benefits of treatment, guided by the physician’s principle of “first do no harm.”

I hope that new, more effective treatments are available to my patients in the coming years, and perhaps CBD may be one of them. For now, there are only tough choices. ■