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June Jessee has lived with seizures, dozens almost every day, for her entire 23-month life. After other options failed, a neurologist recommended a hormone treatment. "The doctor told me it could kill her – but he was still recommending it," said June's mother, Genny Jessee. June was diagnosed early on with infantile spasms that have left her developmentally like a four-month-old, her mother said. June's not yet crawling, doesn't typically sit up and has trouble sleeping because of the seizures, which intensify when she's drowsy.
"The brain isn't making the connections," Genny Jessee said. "It must be so hard to understand what's going on when your brain is constantly hitting the pause button." The hormone treatment didn't work. Then the family turned its attention to a promising new therapy using an oil derived from marijuana. But the treatment is illegal in Missouri. When the Jessee family learned the therapy is legal in Colorado, they decided to leave their home in Brentwood and move there. June's father, a lobbyist with the St. Louis-based law firm Bryan Cave, mentioned the move to a friend, state Rep. Caleb Jones, R-Columbia. Jones asked what he could do to help.
Change the law, Matt Jesse told Jones. That exchange led Jones to sponsor a bill passed by the Missouri House last week that would allow patients such as June access to the therapy. The bill now heads to the Senate. The oil involved in the treatment is extracted from cannabis plants with low amounts of THC, the chemical that gets people high, and high amounts of cannabidiol, or CBD. The bill applies solely to people with epilepsy who have not responded to at least three other treatments and would strictly regulate the use and growing of plants for research and medical purposes. "It addresses a very narrow issue. This isn't the medical marijuana discussion," Jones said. "You can't get high on it."
The bill is part of a surprising move in the GOP-dominated Legislature toward relaxing restrictions on medicinal uses of marijuana. Separately from Jones' bill, a broader model of medical marijuana regulations was recently unanimously approved by a Senate committee. The debate has shifted from marijuana's potential downsides and law enforcement's opposition to focus on medical uses and ways to decrease the risk of abuse. Jones' bill would allow the state's agriculture department to oversee growth of hemp, defined as cannabis plants with less than 0.3 percent THC and more than 5 percent CBD. The plants would then be processed into an oil and sold at designated locations.
The state Department of Health would issue cards to patients certified by a neurologist who could obtain and possess oil extracts with CBD, which has shown promise in treating children with severe epilepsy. Some other conservative states, including Wisconsin, have moved forward with similar proposals. Alabama will conduct medical research into CBD oil at a university and allow patients to use it. Utah will allow people to possess the oil, which could be obtained in neighboring Colorado. "By dealing with a very specific issue it has allowed myself and others to educate members," Jones said.
In Illinois, medical marijuana became available this year but is legal only for adults. A bill introduced there would allow children with seizures access to marijuana-based therapy. In Missouri, Jones said, lawmakers were initially hesitant. But once they understood the issue and the effect it could have for individuals, he said, there was little opposition. But some opponents say clinical trials are necessary to ensure the drug is safe and effective.
Jason Grellner, vice president of the Missouri Narcotics Officers Association, said a legitimate drug containing CBD oil was now in clinical trials. He said Missouri should try to become a testing site for the drug, produced by GW Pharmaceuticals from cannabis plants. "That is what we do to test medicine in the United States. We don't use politics to define medicine, we use science to define medicine," Grellner said. "We don't need to get caught up in the rhetoric and the politics of marijuana legalization. Science needs to rule the day."
During the House hearing on Jones' bill, Rep. Ron Hicks, R-St. Peters, said too much testing had bogged down potentially life-saving drugs. "As far as sitting idly by and waiting another 10 years for the tests or whatever tests have to be done, how many children do we lose, how many parents are having to bury their children?" Hicks asked. Jessee said trying CBD oil was little different than trying a range of front-line medications for seizures that have dangerous side effects – and, for June, have not been successful. At this point, the family is willing to try anything.
"We've tried everything else and we never knew if it was going to work," Jessee said. "It's not any different." The federal Centers for Disease Control estimates that about 468,000 children in the United States have epilepsy, and the National Epilepsy Foundation says that 30 percent of those diagnosed with the condition are children. The Epilepsy Foundation released a statement in February supporting the rights of epileptic patients to access physician directed care, including medical marijuana. But it also calls for more studies. Darla Templeton, chief executive of the Epilepsy Foundation of Missouri and Kansas, said there was limited research on the effects of marijuana on seizures. What evidence there is, she said, is mostly anecdotal. The long-term effects are unknown.
Part of the problem, Templeton said, is the classification of marijuana as a Schedule 1 drug, the most strictly regulated. The national foundation is working to get 100,000 signatures on a petition that calls for moving marijuana to a lower level to allow more medical research into its potential. While Jones' bill has broad, bipartisan support, the same is not true for a measure to allow medical marijuana in Missouri. Sen. Jason Holsman, D-Kansas City, said his bill to allow medical marijuana in certain forms was very narrow to alleviate concerns lawmakers have expressed about secondhand smoke, driving under the influence, increased use of marijuana and abuse by people with no medical needs.
"We're trying to make it palatable to the Republican majority and still provide relief," he said. "If we do get it passed, it will be as much as we could get passed." The Senate bill would allow licensed businesses to grow and process marijuana plants, which could be sold in only their processed form – oils, topical creams or ingestible products – to patients. The bill does not reference marijuana and instead refers to the compounds in marijuana, cannabinoids. "This is as narrow of a medical marijuana bill as you can get and still allow patients with terminal illnesses to access it," Holsman said.
During the hearing on the initial version of Holsman's bill, senators expressed concern about the way the marijuana might be consumed if it was available in a raw form. Holsman said that's why he removed any allowance for smoking the marijuana. The main difference between his and Jones' epilepsy-only bill, Holsman said, was that his measure would allow adults with more diagnosed health problems access to it.
As for Jones' measure, the Jessee family still plans to move to Colorado, even if the bill is passed into law. Genny Jessee said she wanted to start June on the CBD oil as soon as possible. The family has been thinking about moving to Colorado for about a year, ever since they learned about the treatment. "I remember thinking, 'Why can I give her something that can kill her but I can't give her this?' " Jessee said. "It just didn't make sense." She said she hoped the law changed because now, the family would not be able to travel outside of Colorado with June's oil. "We'd like to come back," Jessee said.
News Moderator - The General @ 420 MAGAZINE ®
Source: Stltoday.com
Author: By Marie French
Contact: St. Louis Post-Dispatch contact information : Stltoday
Website: Hemp oil treatment for children with epilepsy gains traction in Missouri : News
"The brain isn't making the connections," Genny Jessee said. "It must be so hard to understand what's going on when your brain is constantly hitting the pause button." The hormone treatment didn't work. Then the family turned its attention to a promising new therapy using an oil derived from marijuana. But the treatment is illegal in Missouri. When the Jessee family learned the therapy is legal in Colorado, they decided to leave their home in Brentwood and move there. June's father, a lobbyist with the St. Louis-based law firm Bryan Cave, mentioned the move to a friend, state Rep. Caleb Jones, R-Columbia. Jones asked what he could do to help.
Change the law, Matt Jesse told Jones. That exchange led Jones to sponsor a bill passed by the Missouri House last week that would allow patients such as June access to the therapy. The bill now heads to the Senate. The oil involved in the treatment is extracted from cannabis plants with low amounts of THC, the chemical that gets people high, and high amounts of cannabidiol, or CBD. The bill applies solely to people with epilepsy who have not responded to at least three other treatments and would strictly regulate the use and growing of plants for research and medical purposes. "It addresses a very narrow issue. This isn't the medical marijuana discussion," Jones said. "You can't get high on it."
The bill is part of a surprising move in the GOP-dominated Legislature toward relaxing restrictions on medicinal uses of marijuana. Separately from Jones' bill, a broader model of medical marijuana regulations was recently unanimously approved by a Senate committee. The debate has shifted from marijuana's potential downsides and law enforcement's opposition to focus on medical uses and ways to decrease the risk of abuse. Jones' bill would allow the state's agriculture department to oversee growth of hemp, defined as cannabis plants with less than 0.3 percent THC and more than 5 percent CBD. The plants would then be processed into an oil and sold at designated locations.
The state Department of Health would issue cards to patients certified by a neurologist who could obtain and possess oil extracts with CBD, which has shown promise in treating children with severe epilepsy. Some other conservative states, including Wisconsin, have moved forward with similar proposals. Alabama will conduct medical research into CBD oil at a university and allow patients to use it. Utah will allow people to possess the oil, which could be obtained in neighboring Colorado. "By dealing with a very specific issue it has allowed myself and others to educate members," Jones said.
In Illinois, medical marijuana became available this year but is legal only for adults. A bill introduced there would allow children with seizures access to marijuana-based therapy. In Missouri, Jones said, lawmakers were initially hesitant. But once they understood the issue and the effect it could have for individuals, he said, there was little opposition. But some opponents say clinical trials are necessary to ensure the drug is safe and effective.
Jason Grellner, vice president of the Missouri Narcotics Officers Association, said a legitimate drug containing CBD oil was now in clinical trials. He said Missouri should try to become a testing site for the drug, produced by GW Pharmaceuticals from cannabis plants. "That is what we do to test medicine in the United States. We don't use politics to define medicine, we use science to define medicine," Grellner said. "We don't need to get caught up in the rhetoric and the politics of marijuana legalization. Science needs to rule the day."
During the House hearing on Jones' bill, Rep. Ron Hicks, R-St. Peters, said too much testing had bogged down potentially life-saving drugs. "As far as sitting idly by and waiting another 10 years for the tests or whatever tests have to be done, how many children do we lose, how many parents are having to bury their children?" Hicks asked. Jessee said trying CBD oil was little different than trying a range of front-line medications for seizures that have dangerous side effects – and, for June, have not been successful. At this point, the family is willing to try anything.
"We've tried everything else and we never knew if it was going to work," Jessee said. "It's not any different." The federal Centers for Disease Control estimates that about 468,000 children in the United States have epilepsy, and the National Epilepsy Foundation says that 30 percent of those diagnosed with the condition are children. The Epilepsy Foundation released a statement in February supporting the rights of epileptic patients to access physician directed care, including medical marijuana. But it also calls for more studies. Darla Templeton, chief executive of the Epilepsy Foundation of Missouri and Kansas, said there was limited research on the effects of marijuana on seizures. What evidence there is, she said, is mostly anecdotal. The long-term effects are unknown.
Part of the problem, Templeton said, is the classification of marijuana as a Schedule 1 drug, the most strictly regulated. The national foundation is working to get 100,000 signatures on a petition that calls for moving marijuana to a lower level to allow more medical research into its potential. While Jones' bill has broad, bipartisan support, the same is not true for a measure to allow medical marijuana in Missouri. Sen. Jason Holsman, D-Kansas City, said his bill to allow medical marijuana in certain forms was very narrow to alleviate concerns lawmakers have expressed about secondhand smoke, driving under the influence, increased use of marijuana and abuse by people with no medical needs.
"We're trying to make it palatable to the Republican majority and still provide relief," he said. "If we do get it passed, it will be as much as we could get passed." The Senate bill would allow licensed businesses to grow and process marijuana plants, which could be sold in only their processed form – oils, topical creams or ingestible products – to patients. The bill does not reference marijuana and instead refers to the compounds in marijuana, cannabinoids. "This is as narrow of a medical marijuana bill as you can get and still allow patients with terminal illnesses to access it," Holsman said.
During the hearing on the initial version of Holsman's bill, senators expressed concern about the way the marijuana might be consumed if it was available in a raw form. Holsman said that's why he removed any allowance for smoking the marijuana. The main difference between his and Jones' epilepsy-only bill, Holsman said, was that his measure would allow adults with more diagnosed health problems access to it.
As for Jones' measure, the Jessee family still plans to move to Colorado, even if the bill is passed into law. Genny Jessee said she wanted to start June on the CBD oil as soon as possible. The family has been thinking about moving to Colorado for about a year, ever since they learned about the treatment. "I remember thinking, 'Why can I give her something that can kill her but I can't give her this?' " Jessee said. "It just didn't make sense." She said she hoped the law changed because now, the family would not be able to travel outside of Colorado with June's oil. "We'd like to come back," Jessee said.
News Moderator - The General @ 420 MAGAZINE ®
Source: Stltoday.com
Author: By Marie French
Contact: St. Louis Post-Dispatch contact information : Stltoday
Website: Hemp oil treatment for children with epilepsy gains traction in Missouri : News
