Alexis Poche 4B Question: Is marijuana actually helping epileptic children cope with their seizures?
ARTICLE I Moving for marijuana: Families with seizure-stricken kids relocating to Colorado for strain of potThe strain, which is now called Charlotte's Web, has been cited as a 'miracle' cure for children with seizure disorders. Even though doctors are skeptical about the drug, an influx of families from others states are putting down roots in Colorado with the hope the cannabis treatment will help their kids. COLORADO SPRINGS, Colo. The doctors were out of ideas to help 5-year-old Charlotte Figi. Suffering from a rare genetic disorder, she had as many as 300 grand mal seizures a week, used a wheelchair, went into repeated cardiac arrest and could barely speak. As a last resort, her mother began calling medical marijuana shops. Two years later, Charlotte is largely seizure-free and able to walk, talk and feed herself after taking oil infused with a special pot strain. Her recovery has inspired both a name for the strain of marijuana she takes that is bred not to make users high Charlottes Web and an influx of families with seizure-stricken children to Colorado from states that ban the drug. She can walk, talk; she ate chili in the car, her mother, Paige Figi, said as her dark-haired daughter strolled through a cavernous greenhouse full of marijuana plants that will later be broken down into their anti-seizure components and mixed with olive oil so patients can consume them. So Ill fight for whomever wants this. Doctors warn there is no proof that Charlottes Web is effective, or even safe. In the frenzy to find the drug, there have been reports of non-authorized suppliers offering bogus strains of Charlottes Web. In one case, a doctor said, parents were told they could replicate the strain by cooking marijuana in butter. Their child went into heavy seizures. We dont have any peer-reviewed, published literature to support it, Dr. Larry Wolk, the state health departments chief medical officer, said of Charlottes Web. Still, more than 100 families have relocated since Charlottes story first began spreading last summer, according to Figi and her husband. The relocated families have formed a close-knit group in Colorado Springs, the law-and- order town where the dispensary selling the drug is located. They meet for lunch, support sessions and hikes. Its the most hope lots of us have ever had, said Holli Brown, whose 9-year-old daughter, Sydni, began speaking in sentences and laughing since moving to Colorado from Kansas City and taking the marijuana strain.Amy Brooks-Kayal, vice president of the American Epilepsy Society, warned that a few miraculous stories may not mean anything epileptic seizures come and go for no apparent reason and scientists do not know what sort of damage Charlottes Web could be doing to young brains. Until we have that information, as physicians, we cant follow our first creed, which is do no harm, she said, suggesting that parents relocate so their children can get treated at one of the nations 28 top-tier pediatric epilepsy centers rather than move to Colorado. However, the society urges more study of pots possibilities. The families using Charlottes Web, as well as the brothers who grow it, say they want the drug rigorously tested, and their efforts to ensure its purity have won them praise from skeptics like Wolk.For many, Charlottes story was something they couldnt ignore. Charlotte is a twin, but her sister, Chase, doesnt have Dravets syndrome, which kills kids before they reach adulthood. In early 2012, it seemed Charlotte would be added to that grim roster. Her vital signs flat-lined three times, leading her parents to begin preparing for her death. They even signed an order for doctors not to take heroic measures to save her life again should she go into cardiac arrest. Her father, Matt, a former Green Beret who took a job as a contractor working in Afghanistan, started looking online for ways to help his daughter and thought they should give pot a try. But there was a danger: Marijuanas psychoactive ingredient, THC, can trigger seizures. The drug also contains another chemical known as CBD that may have seizure-fighting properties. In October, the Food and Drug Administration approved testing a British pharmaceutical firms marijuana-derived drug that is CBD-based and has all its THC removed.
Few dispensaries stock CBD-heavy weed that doesnt get you high. Then Paige Figi found Joel Stanley. One of 11 siblings raised by a single mother and their grandmother in Oklahoma, Stanley and four of his brothers had found themselves in the medical marijuana business after moving to Colorado. Almost as an experiment, they bred a low-THC, high-CBD plant after hearing it could fight tumors. Stanley went to the Figis house with reservations about giving pot to a child. But she had done her homework, Stanley said of Paige Figi. She wasnt a pot activist or a hippy, just a conservative mom. Now, Stanley and his brothers provide the marijuana to nearly 300 patients and have a waitlist of 2,000. The CBD is extracted by a chemist who once worked for drug giant Pfizer, mixed with olive oil so it can be ingested through the mouth or the feeding tube that many sufferers from childhood epilepsy use, then sent to a third-party lab to test its purity. Charlotte takes the medication twice a day. A year ago, she could only say one word, her father said. Now she says complete sentences.The recovery of Charlotte and other kids has inspired the Figis and others to travel the country, pushing for medical marijuana laws or statutes that would allow high-CBD, low-THC pot strains.Donald Burger recently urged a New York state legislative panel to legalize medical marijuana while his wife, Aileen, was in the familys new rental house in Colorado Springs, giving Charlottes Web to their daughter Elizabeth, 4. The family only relocated to Colorado after neurologists told them Elizabeths best hope brain surgery could only stop some of her seizures.Its a very big strain being away from the rest of our family, Aileen Burger said recently while waiting for her husband to return from a trip to sell their Long Island house. But she doesnt have to have pieces of her brain removed. Ray Mirazabegian, an optician in Glendale, Calif., brought Charlottes Web to his state, where medical marijuana is legal. He convinced the Stanley brothers to give him some seeds he could use to treat his 9-year-old daughter Emily, who spent her days slumped on the couch. Now, shes running, jumping and talking. Mirazabegian is cloning the Charlottes Web seeds and has opened the California branch of the Stanleys foundation. Mirazabegian has begun to distribute the strain to 25 families and has a waitlist of 400. It includes, he said, families willing to move from Japan and the Philippines.
ARTICLE II Alabama Just Approved Cannabis Extracts For Epileptic Kids Medical cannabis has finally taken root in the Deep South. On Thursday, Alabama's State Legislature unanimously passed Carlys Law, a measure that will make cannabis-derived medicine available to severely epileptic children as part of a university-led research study. The bill, which Governor Robert J. Bentley has said he will sign into law, will also shield patients and their caregivers from prosecution for unlawful possession of marijuana in the state, provided they have a debilitating epileptic condition and use or possess cannabidiol (CBD) pursuant to a prescription authorized by The University of Alabama at Birminghams Department of Neurology. Which means Carlys Law doesnt actually legalize medical use of marijuana in its raw form instead, it allows certain doctors to prescribe a non-psychoactive, high-CBD extract of cannabis with less than 3% THC. The legislation also provides $1 million from Alabamas education trust fund to support a five-year study of pediatric epilepsy patients who are given CBD medicine. CBD is one of more than 80 unique chemical compounds found naturally in cannabis, and has shown tremendous efficacy as an anti-seizure treatment, among many other therapeutic uses, while providing no high to users. International researchers have been studying CBD as a medicine for at least three decades, but most Americans learned of its existence last August, when CNN aired a documentary that showed concentrated CBD to be over 99% effective in stopping the seizures of a six-year-old girl for whom all other remedies had failed. That broadcast sparked a literal migration of epileptic children. Families relocated to Colorado from across the country in search of a marijuana miracle, which in turn generated more and more interest within the epilepsy community. Meanwhile, in the small Birmingham suburb of Pelham, Alabama, Dustin and Amy Chandler thought about moving to Colorado too, but ultimately decided to find a way for their three-year old daughter Carly, who suffers from an extremely rare form of epilepsy called CDKL5, to get CBD legally without having to relocate. Prior to CNNs special, no neurologist had ever so much as mentioned CBD to them as a way to potentially control Carlys severe seizures, which typically come several times a day. Once we learned CBD was an option, we kept on asking about it, but our doctors really just couldnt discuss it at that time, Dustin Chandler told VICE News. So I think the University of Alabama-Birmingham researchers must be really excited, because now they can actually study this, and hopefully even investigate treatment options for disorders beyond epilepsy. The law does not specify who will produce the CBD medicine prescribed to patients, but one option would be finding a legal way to transport the Charlottes Web oil featured on CNN directly from Colorado to Alabama. Theres also a federally-approved clinical trial underway at multiple US university hospitals using Epidiolex, a cannabis-derived CBD anti-seizure medicine made by GW Pharmaceuticals, a British corporation with ties to the worlds largest drug companies.
ARTICLE III Back in November 2013, Democratic State Representative Patricia Todd became the first lawmaker to champion Carlys Law in the legislature, after meeting with the Chandlers and seeing firsthand the pain and suffering endured by their family. Todd, the only openly gay elected official in Alabamas history, had previously sponsored a bill to fully legalize recreational marijuana in Alabama, including home cultivation a mostly symbolic effort that never made it out of committee. This time she recruited fellow Representative Allen Farley, a Republican with more than three decades of law enforcement experience, to take over sponsorship of the bill in the House and win conservative support. Parents with severely ill children shouldnt have to sell everything they own and move to Colorado, Farley told VICE News after the bills historic passage. Most of these patients are kids like Carly, whos three years old and has taken eight different FDA-approved drugs. Some so strong it says right on the label that the pills could kill you. A number of these kids are on hospice because their next seizure might be fatal. And then you read about CBD having an incredible success rate while causing absolutely no harm to anybody. After meeting families from all over Alabama with severely epileptic children, Farley and his wife Muriel became deeply passionate about the issue, personally researching the science behind cannabis and CBD, while working tirelessly to convince skeptical colleagues in the legislature. Muriel would gather parents and their afflicted children in the statehouse, and then go from office to office cajoling lawmakers to meet with them, if only briefly. She told them, You need to go look into the faces of these children. Farley said. Support grew in both parties, but the votes to pass Carlys Law still didnt add up. So Farley, Todd, the Chandlers, and their supporters threw a public rally to put pressure on those still opposed. It breaks my heart because we can help children right now, Patricia Todd told a crowd of hundreds in Carlys hometown. By the end of next month, we could have the oil available. It could decrease seizures, and increase quality of life, and the only thing stopping it is 35 people in the Senate. Were running out of days in the Legislature, and these kids dont have another year to wait. Farley said the turning point came when both the University of Alabama and the Speaker of the House threw their weight behind the effort. He then felt sure they had the votes, but still worried that partisan rancor in the statehouse would prevent passage of the bill. The critical vote came well after midnight, on one of the legislative sessions final days. Its 2 AM, and the speaker calls my name and the bill. Farley recalled. I go down to the podium, and Ive got my iPad under my arm, ready to pull out my talking points to answer any oppositional questions. Then I looked around that chamber, and said, Ladies and Gentlemen, I bring to you this morning Senate Bill 174, Carlys law. And the cheering was like being at a college basketball game or the Super Bowl. The chant went up, Vote! Vote! Vote! Vote! After tearing up at the unexpected show of unity, he finally returned home to his wife around 3:30 AM. Farley recalled thinking, as they lay in bed, that this is just the first chapter of a book thats going to be miracle, after miracle, after miracle. He described working with his wife to pass the law as part of their Christianity. God created this Earth, all of it, and everything thats on it, he said. And the Bible tells us that if God created something, its good. Now, there are some miraculous uses for this plant, that a lot of the population has seen as coming from the Devil himself. It has divided people, and caused people to be imprisoned or lose their homes and families. And do you think that maybe in all our feeble attempts to do things, its somehow taken us this long to figure out why God put this plant on the Earth? Because I think theres a real possibility people will start to say, You know, there's a lot of bad things weve heard about people who use marijuana, but it just might be that something good can come out of weed or cannabis-based drug developed to treat childhood-onset epilepsy, GW Pharmaceuticals announced last week.Although not full FDA approval -- its maker still must demonstrate the efficacy of the drug in clinical trials -- the orphan drug designation represents a tremendous step forward for cannabis-based medicine.The drug, called Epidiolex, contains a highly purified, plant-derived form of cannabidiol (CBD), a non-psychoactive compound found in marijuana that doesn't produce the "high" sensation associated with THC, the plant's main psychoactive ingredient. CBD has long been used as a treatment for Dravet syndrome, a rare and severe form of epilepsy in children, and GW Pharmaceuticals sees Epidiolex as useful in treating both Dravet and Lennox-Gastaut syndrome (LGS), another rare form of childhood epilepsy.The FDA grants the orphan drug designation to drugs intended to treat rare disorders. It qualifies the maker of the drug for certain tax incentives related to clinical testing as well as an exclusive marketing period for the drug.Currently, the federal government classifies marijuana as a Schedule I substance, but its compounds, like CBD and THC, can be reclassified at a lower level of risk if approved for medical use by the FDA. The agency's approval of the synthetic THC-based drug Marinol in 1985, for example, resulted in THC becoming a Schedule III substance.The classification of marijuana as Schedule I puts the plant into "the most dangerous"category of illegal substances "with no currently accepted medical use." The Schedule I status is why the Obama administration continues to raid medical marijuana dispensaries and prosecute their owners and workers. It's also part of the problemscientists have in obtaining cannabis, and funding, to conduct legal research on the drug in the U.S.If marijuana were reclassified as Schedule III -- like THC -- it would be officially recognized as having an accepted medical use and presenting less potential for abuse. Universities and labs that receive federal funding would find it much easier to conduct research on its potential benefits.According to the National Institutes of Health, Dravet syndrome typically appears in children within their first year of life. Along with frequent seizures, those affected often exhibit poor language development, hyperactivity and difficulty relating to others.Seizures for children affected by Lennox-Gastaut syndrome usually begin before the age of four. The majority of children with the syndrome also experience some degree of impaired intellectual functioning or information processing as well as behavioral disturbances, according to NIH.Currently, there is no cure for either disorder, and FDA-approved medications to treat epilepsy can cause children to become nauseated and develop rashes or, in some cases, depression or hyperactivity. Those drugs may not even effectively treat the seizures the children suffer from. "We are now in active discussions with the FDA regarding the US regulatory pathway for Epidiolex and believe that this medicine has the potential to meet the significant unmet need of children suffering with severe seizures where all options to control those seizures have been exhausted," GW Pharmaceuticals CEO Justin Gover said in a statement after the orphan drug announcement. "GW is responding to this need with the goal of providing an FDA-approved prescription CBD medicine that physicians have confidence in prescribing and parents can trust for quality, consistency and access."Marijuana has a long history of effectively treating seizures. In 1843, British Army doctor William O'Shaughnessy documented his use of cannabis oil to stop an infant's near- constant convulsions. Today, in the 20 U.S. states with legal medical marijuana, many families have been experimenting with a high-CBD, low-THC strain of cannabis to help treat their children who have debilitating seizures.The popular "Charlotte's Web" strain, named after 7-year-old Charlotte Figi and developed by non-profit medical marijuana group Realm of Caring, is being used to treat more than 300 patients suffering from epilepsy in Colorado. Charlotte, who used to suffer from hundreds of seizures a week, was the first child in Colorado to be legally treated with cannabis since medical marijuana was legalized. Her recovery has been miraculous, her mother, Paige Figi, told The Huffington Post. "She is getting a re-do of all the years she was robbed by epilepsy," Figi said.Charlotte's Web and similar medical strains are administered in liquid or capsule form and, according to doctors, produce little to no side effects. Because of the low THC count, users don't experience the high associated with traditional marijuana.In recent years, a number of studies have shown the medical promise of marijuana. Purified forms of cannabis can be effective at attacking some forms of aggressive cancer and may help slow the spread of HIV. Legalization of the plant for medical purposes may even lead to lower suicide rates.Although marijuana appears to be helping many people, some doctors remain cautious.I worry that we just dont know enough about it, Dr. Sharon Levy, of the Boston Childrens Hospital at Harvard Medical School, told NBC News. I think theyre putting their child at risk of long-term consequences of marijuana use that we dont fully understand.Down the road, FDA approval of Epidiolex may produce a cannabis-based drug that skeptical doctors would be comfortable prescribing to their patients.This isn't GW Pharmaceuticals' first foray into marijuana-derived drugs. The company has been developing and testing multiple cannabinoid drugs, including the world's first cannabis plant-derived prescription drug, Sativex, which is used for the treatment of spasticity due to multiple sclerosis in 25 countries. Sativex is not approved by the FDA but is in clinical trials in the U.S.
CONTACTS (no responces)
To: clh42@columbia.edu From: alxpo73@yahoo.com
Greetings Cart Hart, My name is Alex Poche and I am doing a school project on epilepsy and marijuana. I am aware about your research in the field of marijuana and other psychoactive drugs and their effects on the human brain and body. I was wondering if you, as an expert in the field, would recommend that marijuana be used for epileptic children. Specifically strands that are bred low in THC and high in CBD, like the strand Charlottes Web. It apears to be working to the people who tried it but do you feel that there is a still unpredictable factor to the medicine?
epilepsybr@mindspring.com From: alxpo73@yahoo.com
Hello, My name is Alex Poche and I am doing a project in school about epilepsy. Your group brings comfort and helps the members cope with their medical condition. I was wondering how the group felt on the topic of using the CBD chemical in marijuana as a way to help seizures.
To: mechou@cc.huji.ac.il From: alxpo73@yahoo.com
Hello Mr.Raphael Mechoulam, My name is Alex Poche and I am doing a project on marijuana. You have several awards in science because of your advancements in technology with cannabis and your creation of synthetic cannabis. However, In America, many children suffer with epilepsy and the government is attempting to pass bills in order for them to use marijuana to help the patients feel better. I know that you might think this will work but however what are risks that could come across this dilemma.