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CBD products may help some people with epilepsy, but obtaining the right treatments can be difficult. Research continues into the benefits of medical cannabis and CBD for people living with epilepsy. Read about advocacy efforts at the Epilepsy

Epilepsy patients navigate a murky, unregulated CBD market

The products may help some people with the neurological disorder, but obtaining the right treatments can be difficult

CBD oils at Empire Standard, a hemp extract processing and distribution plant in Binghamton, N.Y. (Angela Weiss/AFP/Getty Images)

In 2013, Tonya Taylor says, she was suicidal because her epileptic seizures kept coming even though she was taking a long list of medications.

Then a fellow patient at a Denver neurologist’s office mentioned something that gave Taylor hope: a CBD oil called Charlotte’s Web. The person told her the oil helped people with uncontrolled epilepsy. The doctor, however, would discuss it only “off the record” because cannabidiol was illegal under federal law, and he worried about his hospital losing funding, Taylor said.

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The federal government has since legalized CBD, and it has become a multibillion-dollar industry. The Food and Drug Administration also has approved one cannabis-derived prescription drug, Epidiolex, for three rare seizure disorders.

But not much has changed for people with other forms of epilepsy like Taylor who want advice from their doctors about CBD. Joseph Sirven, a Florida neurologist who specializes in epilepsy, said all of his patients now ask about it. Despite the buzz around it, he and other physicians said they are reluctant to advise patients on over-the-counter CBD because they do not know what is in the bottles.

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The FDA does little to regulate CBD, so trade groups admit that the marketplace includes potentially harmful products and that quality varies widely. They say pending bipartisan federal legislation would protect those who use CBD. But some consumer advocacy groups say the bills would have the opposite effect.

Caught in the middle are Taylor and other patients desperate to stop losing consciousness and having convulsions, among other symptoms of epilepsy. They must navigate the sometimes-murky CBD market without the benefit of regulations, guidance from doctors or coverage from health insurers. In short, they are “at the mercy and the trust of the grower,” said Sirven, who practices at the Mayo Clinic in Jacksonville, Fla.

Although the CBD industry is new territory for the FDA, people have used cannabis to treat epilepsy for centuries, according to a report co-written by Sirven in the journal Epilepsy & Behavior.

More than 180 years ago, Irish physician William Brooke O’Shaughnessy administered drops from a hemp tincture to an infant experiencing severe convulsions. “The child is now in the enjoyment of robust health, and has regained her natural plump and happy appearance,” O’Shaughnessy wrote at the time.

Much of the recent interest in CBD stemmed from the 2013 CNN documentary “Weed,” which featured Charlotte Figi, then 5, who had hundreds of seizures each week. With the use of CBD oil, her seizures suddenly stopped, CNN reported. After that, hundreds of families with children like Charlotte migrated to Colorado, which had legalized marijuana in 2012. Then in 2018, the federal government removed hemp from the controlled substances list, which allowed companies to ship CBD across state lines and meant families no longer needed to relocate.

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Advocacy: Medical Cannabis CBD

While not everyone with epilepsy should or would consider medical cannabis or cannabidiol (CBD) as a treatment option, some people living with uncontrolled seizures have reported beneficial effects and reduced seizure activity when using medical cannabis, especially strains rich in CBD. Further research is needed on the effects of medical cannabis on epilepsy, but when recommended by a treating physician, medical cannabis may be the best alternative for some individuals living with drug-resistant epilepsy and uncontrolled seizures.

Access to medical cannabis will support increased research efforts and allow individuals who have failed to gain seizure control an option for treatment.

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Position

The Epilepsy Foundation is committed to supporting physician-directed care, and to exploring and advocating for all potential treatment options for epilepsy, including cannabidiol (CBD) oil and medical cannabis. We support safe, legal access to medical cannabis and CBD if a patient and their health care team feel that the potential benefits of medical cannabis or CBD for uncontrolled epilepsy outweigh the risks.

We also support breaking down barriers to research to better understand the potential therapeutic benefits and harms of cannabis. The Epilepsy Foundation does not have a policy position on adult use recreational cannabis programs – however, under these laws, individuals and their physicians are able to work together to access cannabis to control seizures when medically appropriate.

Status

As of November 2020, 48 states and the District of Columbia have legalized either the recreational or medical use of cannabis on the local level. Under federal law, cannabis remains a Schedule I controlled substance, and illegal to use, buy, sell, or possess. The restrictive Schedule I status also creates a significant barrier to conducting medical research on the benefits or harms of cannabis as a treatment option for epilepsy and seizures as well as other complex, chronic conditions.

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During the November 2020 elections, Arizona, New Jersey, South Dakota, and Montana residents approved ballot measures to allow for the adult recreational use of cannabis. Mississippi and South Dakota residents approved ballot measures to allow for the medical use of cannabis as well. The Arizona law will take effect on November 30, 2020 when election results are certified, and public sale of cannabis could begin as soon as March 2021. New Jersey’s constitutional amendment takes effect January 1, 2021 and will issue regulations and licenses for cannabis businesses in the coming months. On February 2, 2022, Mississippi became the 37th state to adopt medical cannabis laws when Governor Tate Reeves signed SB 2095 into law.

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