POLITICS

Young Girl Could Treat Her 'Uncontrolled' Epilepsy With Medical Marijuana -- If Only She Had Access To It

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."

For the Nazzarines and other Ohio patients seeking marijuana for medical purposes, the plant remains illegal for all uses. And Ohio Gov. John Kasich (R) has explicitly said he's against legalization.

"No, I don't think that's what we need to do," Kasich 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.

HuffPost

BEFORE YOU GO

  • Maggie, 20 months old
    Maggie has been suffering from seizures since she was six weeks old, and has <a href="http://faceofcannabis.wordpress.com/201
    Nichole Montanez
    Maggie has been suffering from seizures since she was six weeks old, and has hundreds of seizures on any given day. Her family relocated from Tennessee to Colorado late last year to use a combination of intensive therapy and cannabis oil to treat her symptoms.
  • Hunter, 7 years old
    Hunter suffers from intractable epilepsy and developmental delay. He's been on numerous medications that have failed to allev
    Nichole Montanez
    Hunter suffers from intractable epilepsy and developmental delay. He's been on numerous medications that have failed to alleviate his seizures and he continues to decline "cognitively, physically and emotionally," according to his mother. He recently started cannabis treatments in the hopes that cannabidiol can provide relief.
  • Piper, 2 years old
    Piper was born with a rare genetic disorder that causes her to suffer from seizures and has rendered her non-verbal, unable t
    Nichole Montanez
    Piper was born with a rare genetic disorder that causes her to suffer from seizures and has rendered her non-verbal, unable to crawl or walk and visually impaired. She has been on nine medications to try to treat her symptoms, and started taking cannabis oil last October. Since she began taking a low dose of cannabis, her family has begun to see small improvements.
  • Calvin, 14 years old
    Calvin has an extreme form of autism that has rendered him nonverbal. After 22 days of taking cannabis, he has begun using wo
    Nichole Montanez
    Calvin has an extreme form of autism that has rendered him nonverbal. After 22 days of taking cannabis, he has begun using words to communicate. According to his mother, he used to have up to 20 head-beating episodes per day, and has only had one episode total in the three weeks he's been using cannabis. "I cried everyday for the first week of him using cannabis," his mother wrote on Montanez's blog. "We no longer had to pull over and restrain him on our way to therapy."
  • Sydni, 9 years old
    Sydni suffers from Doose syndrome, which causes her to have up to thousands of seizures each day. She functions at the academ
    Nichole Montanez
    Sydni suffers from Doose syndrome, which causes her to have up to thousands of seizures each day. She functions at the academic level of a three-year-old and takes nine different medications. Her family recently started her on cannabis oil in the hopes that it will reduce her seizures.
  • Emily, 4 years old
    Emily suffers from a <a href="http://faceofcannabis.wordpress.com/2013/10/19/120/" target="_blank">debilitating form of epile
    Nichole Montanez
    Emily suffers from a debilitating form of epilepsy that has yet to be diagnosed. Her family recently moved from Indiana to Colorado in the hopes that a cannabis prescription will help ease her seizures.
  • Jordan, 18 years old
    Jordan was diagnosed with Dravet syndrome when she was six months old and has <a href="http://faceofcannabis.wordpress.com/20
    Nichole Montanez
    Jordan was diagnosed with Dravet syndrome when she was six months old and has suffered from seizures for her entire life. On her worst days, she's unable to eat, drink or function. Her family recently relocated from Cleveland to Colorado to try cannabis treatments.
  • Tyler, 11 years old
    Tyler has a rare, drug-resistant form of epilepsy called Lennox-Gastaut Syndrome. He has spent <a href="http://faceofcannabis
    Nichole Montanez
    Tyler has a rare, drug-resistant form of epilepsy called Lennox-Gastaut Syndrome. He has spent months living in the hospital and has been placed in two medically induced comas. He began taking a low dose of cannabis in October and his family has begun to see "small victories."
  • Kennedee, 2 years old
    Kennedee was born with Walker-Warburg Syndrome, a severe and rare form of muscular dystrophy that claimed her older sister's
    Nichole Montanez
    Kennedee was born with Walker-Warburg Syndrome, a severe and rare form of muscular dystrophy that claimed her older sister's life when she was just two months old. When Kennedee was born, she was only given a few months to live. Since starting her cannabis treatment, "we have seen a personality we didn't know she had," her mother wrote on Montanez's blog.
  • Charlie, 6 years old
    Charlie suffers from Dravet Syndrome and has <a href="http://faceofcannabis.wordpress.com/2013/11/08/charlie/" target="_blank
    Nichole Montanez
    Charlie suffers from Dravet Syndrome and has seizures in the middle of the night, every night. His family hopes his use of cannabis oil will make him able to communicate and reduce his dependence on other drugs.
  • Cora, 6 years old
    Cora was born with a rare multiple-malformation syndrome that causes her to have body and head overgrowth and various abnorma
    Nichole Montanez
    Cora was born with a rare multiple-malformation syndrome that causes her to have body and head overgrowth and various abnormalities of her brain, limbs and vascular system. She also suffers from dozens of seizures a day, has undergone multiple surgeries and uses a head switch to communicate. Her parents are beginning to explore cannabis treatments as a means for relief.
  • KC, 9 years old
    KC has suffered from multiple daily seizures since he was three years old and has yet to respond to any treatments. After two
    Nichole Montanez
    KC has suffered from multiple daily seizures since he was three years old and has yet to respond to any treatments. After two weeks using cannabis, he began exhibiting progress. "A boy who would previously wobble and stumble as he walked was now running up hiking trails and jumping into his dad's arms," his mother wrote on Montanez's blog. "He has even been cracking jokes!"
  • Charlotte, 7 years old
    Charlotte used to suffer from more than 40 seizures per day, and now, <a href="http://faceofcannabis.wordpress.com/2013/10/24
    Nichole Montanez
    Charlotte used to suffer from more than 40 seizures per day, and now, according to her mother, "her wheelchair and seizure helmet are in storage collecting dust." Charlotte was the first child in Colorado to be treated with cannabis oil, and her story inspired the name "Charlotte's Web," which is the high-cannabidiol, low-THC strain used to treat other children with similar conditions.
  • Zaki, 10 years old
    Since he was just a few months old, Zaki suffered from up to thousands of seizures per day. <a href="http://faceofcannabis.wo
    Nichole Montanez
    Since he was just a few months old, Zaki suffered from up to thousands of seizures per day. He has been seizure-free since he started taking cannabis oil more than a year ago.
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