United States News
See other United States News Articles
Title: Jeff Sessions’s War On Pot Goes To Court, Attorney General Will Fight 12-Year-Old With Epilepsy
Source:
FromThe Trenches
URL Source: http://fromthetrenchesworldreport.c ... -year-old-with-epilepsy/216564
Published: Jan 18, 2018
Author: Kate Sheridan
Post Date: 2018-01-19 05:32:03 by Deckard
Keywords: None
Views: 2731
Comments: 55
A 12-year-old suing the federal government may have a whiff of adorableness. But for Alexis Bortell, who filed a lawsuit against Attorney General Jeff Sessions last fall, it’s a choice she had to make to save her life. Alexis has epilepsy, and Sessions has made it his mission to make it impossible for her to access the only drug that has kept her seizures at bay: cannabis. Alexis doesn’t remember her first seizure. But her father, Dean Bortell, does. “We were literally folding clothes, and Alexis was sleeping on the couch,” Bortell told Newsweek. “All of a sudden, I heard her make this shriek—I mean, it was a scream of terror,” he said. “I look over, and Alexis is stiff as a board, on her back, spasming.” After several months in the dark—at first, Bortell suspected his daughter had a brain-eating amoeba on account of headlines about them that summer—Alexis was diagnosed with epilepsy in 2013. Three years ago, Alexis began taking medical marijuana, and her seizures disappeared. But that treatment option is threatened by an aggressive federal crackdown on medicinal cannabis led by Sessions, who is also the acting director of the Drug Enforcement Administration. Her day in court—February 14, at a New York City federal courthouse—is fast approaching. Alexis won’t be there in person, but her lawyer, Michael Hiller, thinks the ruling will go their way. “We are very optimistic that the case is going to come out the way it should, which is that the Controlled Substances Act is going to be found unconstitutional,” Hiller said. Several other plaintiffs—a former professional football player, a veteran and another child—are also included. Alexis Bortell stands in a field in this undated photo.COURTESY OF THE BORTELL FAMILY The basic outline of Alexis’s story has been well reported: Horrible seizures forced her family to move to Colorado from Texas, where she could use products with compounds derived from marijuana. But due to the concentration of THC, also known as tetrahydrocannabinol, in one of the products she uses, Alexis is unable to cross state lines, board an airplane or set foot on a military base or in other federal buildings and lands. Biologically, Alexis’s problem begins in the left frontal lobe of her brain. Normally, brain cells communicate with one another using electrical and chemical signals. Epileptic seizures happen when those signals go haywire. Anyone familiar with epilepsy knows that’s a fairly muted description. These rogue cells can create something terrifying to experience or watch, and you can’t know when the next seizure will strike. It can be “frustratingly random,” Bortell said. These brain signals can also spark a long-term relationship with one’s local neurologist or hospital as patients and doctors figure out what is happening. But that’s only half the battle; controlling the seizures is the other. For many people with epilepsy, one of the various kinds of prescription drugs available will work. But finding the right one or the right combination can take time. “They try to go mild to wild,” Bortell said. At home in Texas, none of the mild stuff worked for Alexis. Giving two medications a real shot and having them both fail is usually enough for doctors to call a person’s epilepsy intractable; in other words, unresponsive to drugs. Alexis tried at least 20 different doses or combinations, her father said. She also experienced some extreme side effects from conventional medications. She had two final options in Texas: See if she was a candidate for surgery to remove the brain tissue where the seizures began or try one last medication, Felbatol. This drug carries a “black box warning,” the most serious kind the U.S. Food and Drug Administration will put on a label to flag extremely dangerous side effects. In this case, Felbatol has been associated with a serious bone marrow disorder and liver failure. The family decided on Felbatol. But on the way to fill the prescription, their pediatrician called them and suggested they try something else. Weeks later, the Bortells packed their bags and drove to Colorado, ready to try a different course of treatment: a tincture of cannabidiol (a compound found in marijuana that isn’t responsible for a high) and a spray with THC (the compound that is). The CBD tincture tastes “bad and earthy,” Alexis told Newsweek, but it’s been working. She still gets auras, the warning signs that a seizure is about to hit, but she hasn’t had a full-blown episode in the past three years. Her father says the only side effect is the constant threat of federal law enforcement. Alexis Bortell, left, and her mother stand in a hemp greenhouse in this undated photo.COURTESY OF THE BORTELL FAMILY Some science backs up Alexis’s treatment plan. Clinical trials have shown that CBD can be useful to treat seizure disorders, but we’re still learning why it works. CBD could be working along about a dozen different pathways and receptors, said Dr. Jerzy Szaflarski, the director of the epilepsy center at the University of Alabama at Birmingham. (Coincidentally, that’s the same state university system from which Sessions earned his law degree.) Exactly how many might be related to epilepsy isn’t entirely clear. “The evidence for each and every one of those pathways is there but it’s relatively weak,” Szaflarski said. “It’s going to take a while before we sort this out.” The evidence is stronger for CBD as an anti-seizure medication than for THC, he noted. “It doesn’t mean that THC doesn’t work for seizures,” said Szaflarski. “It just means that we have much less data because we’ve been studying this much less.” Despite their utility, these products aren’t without risk, Szaflarski noted. The concentration of CBD in some products available on store shelves can vary from batch to batch. These drugs may interact with traditional anti-seizure medications, changing the amount of the drug found in a person’s blood. And some studies have linked early THC exposure to lower IQs and behavioral problems. But, Szaflarski noted, “the question is, Do these problems that we see that develop through the use of cannabis outweigh the risk of epilepsy?” For Alexis, the answer is clear: Her drugs are safer than having continued seizures. The government disagrees. It says marijuana has no medical applications whatsoever and is accordingly listed by the DEA as a Schedule 1 drug under the Controlled Substances Act, first passed in 1970. That entire act is what Alexis, her co-plaintiffs and Hiller, her lawyer, are challenging. Hiller took the case pro-bono and has written a brief that, at 98 pages, is the longest of his career. The document lays out the basic reasons why he believes the act is unconstitutional. Specifically, the case claims the act violates Americans’ fundamental right to travel, as well as the Commerce Clause of the Constitution and the First, Fifth, Ninth and 14th amendments. Hiller believes the case could end up in the U.S. Supreme Court. It’s impossible to say what the outcome of the case will actually be until a judge hears the arguments and makes a ruling. But while Alexis and her family wait for that outcome, they are on increasingly uncertain ground. On January 4, Sessions rescinded the Cole memorandum, an Obama-era directive to U.S. attorneys ordering them to focus on prosecuting major distributors and more serious marijuana-related offenses, such as selling to minors. The Rohrabacher-Blumenauer amendment, renewed in December, is also set to expire on January 19. That amendment prevents the Justice Department from using its funding to keep states from implementing medical marijuana laws. That amendment is likely to be renewed, Hiller said. Senator Elizabeth Warren has also announced plans to introduce legislation that could have the same effect as the Cole memo. But that’s little comfort to the Bortells—a family that just wants to help their child use the one thing that’s worked for her epilepsy. “No one else is living memo to memo or administration to administration,” Bortell said. “I don’t think asking for my daughter to have that long-term plan for her life—I don’t think that’s asking too much.” A Scream of Terror
Out of Options
Safer Than Seizures
A Violation of the Constitution
Post Comment Private Reply Ignore Thread
Top • Page Up • Full Thread • Page Down • Bottom/Latest
Begin Trace Mode for Comment # 35.
#2. To: Deckard (#0)
Small price to pay, eh?
Small price to pay, eh? In order to live a normal life without epileptic seizures? You bet it is!
A guy I knew died from drowning in a bathtub during a seizure. Hell yes, it's worth using cannabis to minimize the chances of something like that happening!
Hell yes, it's worth using cannabis to minimize the chances of something like that happening! One of my best friends in HS developed severe epilepsy as an adult. He had a hemispherectomy in his mid-thirties because he could get no relief from any of the drugs and had become unable to work to support his wife and kids. Yes, they chopped out and removed half of his brain to bring his seizures under control. Surprisingly, his personality was not much altered including more subtle features of intellect like wry insights, irony, humor, etc. I always wondered if he suffered any math impairment but decided I shouldn't ask such things. But, of course, it is far better to chop out half of these untreatable epilectics' brains rather than allow people to use CBD treatments (like Charlotte's Web that contains 0.3% THC) rather than to have Gatlin and misterwhite shitting their Depends at the thought that someone somewhere might be getting high.
Rush Limbaugh has half his brain tied behind his back. Did you know the human head weighs eight pounds?
I really don't think you and Gatlin grasp the level of suffering by these hard-case epileptics. Some kids can have dozens of micro-seizures per hour. Adults, like the guy I knew, would have several grand mal seizures per hour. People like this, their lives simply are not worth living. So they resort to these truly toxic drugs or radical brain surgery just to get some relief and something like a normal life. But let them try to use CBD oil with 0.3% THC content? Oh, hell no, that would mean those damned hippies have finally won. Give it up. The Drug War is over, as far as medical marijuana is concerned. Hell, even Gatlin and GrandIsland are bent on profiting from their occasional speculation on a major Canadian medical marijuana corporation (Cronos).
I buy marijuana stocks and I also buy stocks in casket, funeral and cemetery companies. Thus, I “make a killing” covering both ends.
I wasn't complaining or trying to point fingers. I just thought it was worth pointing out that investing in a CBD company can't really be compared to trying to sell heroin or opiates to kids. I object to people trying to pretend CBD is heroin or possibly worse. As coincidence would have it, one of the regular writers wrote an update to his own sudden mid-life epilepsy. Out of the blue, he woke up after his first seizure and found he had dislocated and broke his shoulder. He's had surgeries, he's taking one of the epilepsy drugs with some side effects. AoS: The Cold Shoulder, October 2017 AoS: Aftermath of surgery and physical therapy, today I don't understand trying to deprive severe epileptics of a chance to take something that many other known epileptics say has helped them to lead normal lives and who are backed by their doctors on it.
I generally regard anecdotal evidence collected in an informal and extremely casual manner to be hap hazard and therefore since it relies entirely on personal testimony...it is to be of very limited or no value due to any number of potential weaknesses. It has absolutely no scientific value because by its very nature it is prevented from being investigated and verified by any scientific method. This is especially true when only a few anecdotes are presented because there is a much greater chance that are unreliable due to being cherry-picked and are non- representative samples of any typical cases. It is human nature for people to have a cognitive bias to cause them to more likely remember notable an unusual cases rather than typical examples. We always hear from the ones who testify that marijuana stops seizures but we never hear from perhaps the thousands it did not. From the pot legalization promoters who parrot these few testimonies of unconfirmed successes, there is an attempt to make every one surmise marijuana will stop all epileptic seizures. I would be happy to learn if that ever happens....but I am never going to believe it from the unsupported testimony of a few. So, because of the way the information is gathered and presented, I find its reliability by any objective assessment to be in doubt. I am being told by the pot advocacy lords to accept testimony without having any verification and I am told I must believe the credibility of the individual presenting the testimony. This is something that goes entirely against my training and human nature....and it is something I simply cannot do.
Marijuana Treatment Reduces Severe Epileptic Seizures (Scientific American) A rigorous study validates a cannabis-derived treatment for a rare, drug-resistant childhood epilepsy Published in The New England Journal of Medicine, the findings stem from a double-blind, placebo-controlled study—the most scientifically rigorous type of investigation possible. “This study clearly establishes cannabidiol as an effective anti-seizure drug for this disorder and this age group," says principal investigator Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University Langone Medical Center. “It certainly deserves to be studied in other types of epilepsy.”
And you really expect me to believe them...ROTFLMAO.
Published in The New England Journal of Medicine, the findings stem from a double-blind, placebo-controlled study—the most scientifically rigorous type of investigation possible. “This study clearly establishes cannabidiol as an effective anti-seizure drug for this disorder and this age group," says principal investigator Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University Langone Medical Center.
Published in The New England Journal of Medicine, the findings stem from a double-blind, placebo-controlled study—the most scientifically rigorous type of investigation possible. “This study clearly establishes cannabidiol as an effective anti-seizure drug for this disorder and this age group," says principal investigator Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University Langone Medical Center. You omitted point out and stress that this was done by an “advocacy group” [their words, not mine] whose mission is ... Some advocacy groups have been accused of manipulation and in some instances have been found guilty of corruption, fraud, bribery, and other serious crimes. I am in no way saying or suggesting that is what is being done here. I am however strongly reminding your that just because you read something official looking on the Web does not make it true. In your case, it only makes believe more strongly what you already want to believe. I will pay no attention or give any credence to something an advocacy group has to say in during any efforts to influence public opinion to support the legalization and use of marijuana. You can, you do, and that is fine for you....you gullible asshole.
You're not being honest. Your claim that a group called "Realm of Caring" was responsible for this study is complete bullshit. In fact the only time the SA article mentions them is when they talk about Sam Riggio, who happens to be the director of operations for Realm of Caring and who has a child with epilepsy. But by all means - continue to post your lies - it's very educational to see your full-blown ignorance in action.
There are no replies to Comment # 35. End Trace Mode for Comment # 35.
Top • Page Up • Full Thread • Page Down • Bottom/Latest"But due to the concentration of THC ... in one of the products she uses, Alexis is unable to cross state lines, board an airplane or set foot on a military base or in other federal buildings and lands."
#8. To: misterwhite (#2)
"But due to the concentration of THC ... in one of the products she uses, Alexis is unable to cross state lines, board an airplane or set foot on a military base or in other federal buildings and lands."
#9. To: Deckard, misterwhite, A K A Stone (#8)
Small price to pay, eh?
#13. To: hondo68, Gatlin, misterwhite, sneakypete, Deckard (#9)
A guy I knew died from drowning in a bathtub during a seizure.
Hemispherectomy is a very rare neurosurgical procedure in which a cerebral hemisphere (half of the brain) is removed, disconnected, or disabled. This procedure is used to treat a variety of seizure disorders where the source of the epilepsy is localized to a broad area of a single hemisphere of the brain, notably Rasmussen's encephalitis. About one in three patients with epilepsy will continue to have persistent seizures despite epileptic drug therapy. Hemispherectomy is reserved for the most extreme cases of this one-third in which the individual’s seizures are irresponsive to medications or other less invasive surgeries and significantly impair functioning or put the patient at risk of further complications. The procedure successfully cures seizures in about 85%-90% of patients. Additionally, it is also known to often markedly improve the cognitive functioning and development of the individual.
#15. To: Tooconservative (#13)
Hemispherectomy is a very rare neurosurgical procedure in which a cerebral hemisphere (half of the brain) is removed, disconnected, or disabled.
#16. To: misterwhite, Gatlin, GrandIsland (#15)
#22. To: Tooconservative, misterwhite (#16)
Gatlin and GrandIsland are bent on profiting from their occasional speculation on a major Canadian medical marijuana corporation
I am an equal opportunity swing trader.
#23. To: Gatlin (#22)
#28. To: Tooconservative (#23)
#29. To: Gatlin (#28)
I am being told by the pot advocacy lords to accept testimony without having any verification and I am told I must believe the credibility of the individual presenting the testimony.
#30. To: Deckard (#29)
Realm of Caring, a cannabis research, education and advocacy group
Research conducted by pot legalization advocacy group….LMAO.
#31. To: Gatlin (#30)
(Edited)
Realm of Caring,
#33. To: Deckard (#31)
Realm of Caring,
#35. To: Gatlin (#33)
(Edited)
You omitted point out and stress that this was done by an “advocacy group” [their words, not mine] whose mission is ...
Replies to Comment # 35.
[Home] [Headlines] [Latest Articles] [Latest Comments] [Post] [Mail] [Sign-in] [Setup] [Help] [Register]