Epilepsy Foundation Position Statement

Updated 11/29/17

Lifting Barriers to Cannabis:
Increasing Research & Improving Safe, Legal Access
for Intractable Epilepsy

Position: The Epilepsy Foundation is committed to supporting physician-directed care and to exploring and advocating for all potential treatment options, including medical cannabis and cannabidiol (CBD). We support lifting federal barriers to research on cannabis and CBD and support access to these potential therapies, through state-regulated programs, for individuals when other treatment options have failed. If a patient and their healthcare team feel that the potential benefits of medical cannabis for uncontrolled epilepsy outweigh the risks, then the patient should have safe, legal access to medical cannabis.

Protecting State Actions: We urge Congress to again enact language in appropriation bills to prohibit the Department of Justice (DOJ) from interfering with medical cannabis programs legally operating in the states. This language has previously been included in the Commerce, Justice, Science and Related Agencies Appropriations Act.

Eliminating Barriers to Federal Research: Currently, it is difficult and expensive to conduct research into the connection between cannabis and seizures. There are restrictions for all Schedule I substances, and there are additional barriers exclusive to cannabis. The Epilepsy Foundation supports the reintroduction of legislation that would lift federal barriers to research on cannabis. We also support legislation that provides access to treatment options for patients and protects patients in states with medical cannabis programs. We support the Compassionate Access Act (H.R. 715), which would accomplish these goals by directing the Drug Enforcement Administration to move cannabis and CBD out of Schedule I, allowing researchers to access cannabis for study of its potential medical use, and prohibiting federal interference under the Controlled Substances Act with state laws that establish medical cannabis programs.

About Epilepsy: The Epilepsy Foundation is the leading national voluntary health organization that speaks on behalf of more than 3 million Americans with epilepsy and seizures. We foster the wellbeing of children and adults affected by seizures through research programs, educational activities, advocacy, and direct services. Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. Approximately 1 in 26 Americans will develop epilepsy at some point in their lifetime.

Background: There is no “one size fits all” treatment for epilepsy, and about a third of people living with epilepsy suffer from uncontrolled or intractable seizures, despite available treatments. Uncontrolled seizures can lead to disability, injury, and even death. This is why people living with uncontrolled seizures turn to medical cannabis and CBD when other options have failed. Medical use of cannabis and/or CBD is legal per state law in 45 states and the District of Columbia, and some people living with uncontrolled seizures have reported beneficial effects and reduced seizure activity when using medical cannabis, especially strains rich in CBD, or CBD. Not everyone with epilepsy should or would consider medical cannabis as a treatment option, and further research is needed on the connection between cannabis and seizures. This is why we advocate for rescheduling cannabis and lifting barriers to research.

If you have any questions or concerns, please contact Angela Ostrom, Chief Legal Officer & Vice President Public Policy at aostrom@efa.org or 301-918-3766.

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Updated 01/16/16


Medical Marijuana: We Need Proof and Compassion

Orrin Devinsky, M.D., Professor of Neurology, Neurosurgery and Psychiatry, Director, NYU Comprehensive Epilepsy Center

Member of Epilepsy Foundation National Board of Directors

There is an enormous unmet need for better treatments for children and adults with epilepsy. Approximately one-third of people with epilepsy continue to suffer from seizures despite the best medical, dietary, and surgical therapies. For those with treatment-resistant epilepsy, the enormous toll includes the direct and potentially deadly consequences of the seizures, which are compounded by the disabling physical, cognitive and behavioral side effects from high doses of multiple antiepileptic drugs. Despite advances in epilepsy therapy over the past decades, our progress remains painfully slow and disappointing. Medical care and research fails many patients. The statement by Phil Gattone and Warren Lammert of the Epilepsy Foundation strongly advocates that there should be legal access for all epilepsy patients and their doctors who feel that marijuana is their best treatment option. I agree.

In a recent Op-Ed piece in the New York Times, my colleague Daniel Friedman and I emphasized 1) the need for randomized controlled trials, considered the gold standard for clinical trials, to better understand the safety and effectiveness of any drug or combination of drugs – whether derived from a marijuana plant or synthesized in a lab, 2) the need for changes in how the Drug Enforcement Agency classifies marijuana and its constituents as Schedule 1 drugs. This is much too restrictive based on the scientific data, especially for cannabidiol (CBD) – the major non-psychoactive component of marijuana, and 3) while we await scientific studies, that marijuana products be made available to pediatric and adult patients with treatment-resistant epilepsy.

Charlotte Figi, who has brought this story to the forefront, suffers from Dravet Syndrome, a genetic disorder that often causes severe epilepsy. Medical marijuana, high in CBD and low in THC, has been reported to cause a dramatic reduction in her seizures and eliminate her need for seizure medications. Caring for epilepsy patients for 25 years, I have seen firsthand the devastation that uncontrolled epilepsy can bring. In the last 2 years, two of my patients with Dravet Syndrome died from sudden unexpected death in epilepsy (SUDEP).

Data from animal studies showing CBD and THC can stop seizures, stories like Charlotte’s, and the tremendous unmet need led me to organize the first international symposium on cannabidiol for epilepsy at NYU in October 2013, to provide testimony for compassionate use for marijuana to several state legislatures, and to work as a researcher (without consulting fees or salary support) to assess CBD as an epilepsy therapy. For our initial study for 25 pediatric and young adult patients, we have received inquiries from more than 500 families and patients.

We stand at an unusual inflection point where families are demanding access to a medication that may or may not be beneficial, and for which the side effects may be less than many medications prescribed by doctors; the medical community lacks convincing efficacy or safety data for children with epilepsy; and the Drug Enforcement Agency’s overly conservative scheduling of marijuana hamstrings research and access. Yet there should be caution for both expectations and potential side effects. Humility is essential in trying to understand something for which we lack solid evidence. Both doctors and patients are equally biased and the greater the expectation, the greater the potential for bias. We urgently need data from randomized controlled trials where the biases of companies, doctors, patients, and parents are meticulously removed.

We need to make a balanced decision about compassionate use. If I were Charlotte Figi’s parents and lived in Colorado I would have done exactly what they did. And as a doctor, I would gladly prescribe marijuana products for many of my patients who failed existing therapies if it were legal in my state. Trying marijuana or related compounds should be regarded like any other experimental treatment – a shared decision between patient/parent and doctor, that takes into account the severity of disease, risk and benefits of treatment, and existence of alternate treatment options, all guided by the principle of “first do no harm”. Until we have the scientific data, we should make medical marijuana available to physicians who care for people with treatment-resistant epilepsy and their patients.