A video released Wednesday tells a powerful and all-too-common story. A child who suffers from severe seizures can’t find relief using traditional medicine. Her family wants to try medical marijuana, a substance that has been proven to treat children with similar disorders. But her state bans them from obtaining it.
The video, produced by Learn Liberty at the Institute for Humane Studies at George Mason University and sponsored by Drug Policy Alliance, tells the story of a 7-year-old girl from Ohio named Sophia Nazzarine who was diagnosed as an infant with “uncontrolled†epilepsy — a form of of the disease that is so severe that anti-seizure medications on the market can’t effectively treat the condition.
Before Sophia was one year old, she suffered up to 20 seizures a day, and as her parents explain in the video, they have tried every available traditional medical option to help their daughter. For most of her life, Sophia has routinely taken multiple pharmaceutical medications, but the drugs fail to stop her seizures. By the time she was 6 years old, Sophia already had two brain surgeries to remove portions of her frontal lobe to help reduce the severity of her form of epilepsy. But a month after her final surgery, the seizures returned.
Desperate for help, Sophia’s parents want to try medical marijuana. They hope that their daughter might find similar results that the Figi family found for their daughter Charlotte, a Colorado girl with a rare form of epilepsy who has seen her debilitating seizures dramatically reduced Charlotte’s Web, a now-famous strain of medical cannabis named in her honor.
“We’ve tried everything else that they could come up with to try and stop these seizures — none of it has worked,†Sophia’s dad, Scott, says in the video. “We should be able to try a pretty benign plant before you take out a quarter of my daughter’s brain. This is the last effort for us; It should have been the first one. The first one we should have been able to do is try a plant.â€
For the Nazzarines and other Ohio patients seeking marijuana for medical purposes, the plant remains illegal for all uses. And Ohio Gov. John Kashich (R) has explicitly said he’s against legalization.
“No, I don’t think that’s what we need to do,†Kashich said in 2012 when asked by reporters if he would support a medical marijuana measure in Ohio.
Sophia is not alone. Roughly 3 million people in the U.S. suffer from some form of epilepsy, and according to the Epilepsy Foundation, at least 1 million people in the U.S. live with uncontrolled epilepsy like Sophia’s. And many children with similar conditions have successfully used medical cannabis to treat their symptoms.
To date, 23 states have legalized marijuana for medical purposes and 13 others have limited laws that allow for the legal use of purified marijuana extracts for some medical purposes. But those state laws are in conflict with federal law, classifies the plant as Schedule I, along with heroin and LSD. Schedule I drugs, according to the government system, have high potential for abuse and no accepted medical use.
“It’s kind of absurd that your zip code determines whether you can get a treatment or not get a treatment that you think might be effective,†said Dr. Michael Privitera, professor at the University of Cincinnati Neuroscience Institute and director of their epilepsy center in the video about Sophia.
Some families, desperate for help, have uprooted their families and relocated to states where medical marijuana is legal. Many are in search of strains rich in CBD, a non-psychoactive compound believed to be effective at reducing seizures, and low in THC, the component that causes users to feel the “high†sensation.
Meanwhile, attitudes continue to evolve around marijuana policies. This week, Paige Figi, Charlotte’s mother, along with more than 1,000 other families with sick children, kicked off a campaign to support a congressional bill that would remove CBD strains from the list of federally banned substances. In March, Sens. Cory Booker (D-N.J.), Rand Paul (R-Ky) and Kirsten Gillibrand (D-N.Y.) introduced the CARERS Act in the U.S. Senate, a historic bill that seeks to drastically reduce the federal government’s ability to crack down on state-legal medical marijuana programs, encourage more research into the plant and reclassify marijuana as a less dangerous drug.
A federal spending bill signed by President Barack Obama in December prohibits the Department of Justice from using funds to crack down state-legal medical marijuana programs.
And just last year, the Epilepsy Foundation announced support for medical marijuana and called on the Drug Enforcement Administration to end restrictions that limit clinical trials and research into medical marijuana as a treatment for epilepsy.
The DEA has long been charged with obstructing the science around marijuana. A scathing 2014 report from Drug Policy Alliance alleged that the agency repeatedly failed to act in a timely fashion when faced with multiple petitions to reschedule the drug. The report also criticized the agency for creating a “regulatory Catch-22? by arguing there is not enough scientific evidence to support rescheduling marijuana while simultaneously impeding the research that would produce such evidence.
Studies have shown that marijuana can produce a range of potential medical benefits, such as combatting aggressive cancer, slowing the spread of HIV and stunting the progression of Alzheimer’s disease.
Last year, the Food and Drug Administration approved a series of clinical trials to test a new marijuana-derived drug aimed at treating severe epilepsy. Last week, the American Academy of Neurology released preliminary data from the drug’s open label testing stage, revealing that more than 50 percent of the 137 epileptic children and young adults continually treated with Epidiolex over a period of three months saw a reduction in their seizures.
Recent polls suggest a vast majority of Americans approve of legalizing, or at least decriminalizing, medical marijuana. And a 2013 survey found that 76 percent of doctors around the world would approve the use of medical marijuana.
Learn more about Sophia’s story here.