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For Brandy Johnson, it is a small battle won. For her son Tres, it is a war that can't end soon enough. Missouri Governor Jay Nixon signed a bill on Monday, July 14, which will permit marijuana to be grown legally in the state of Missouri for the first time since cannabis prohibition began, and which will allow cannabidiol (CBD) to be extracted from those plants and provided to patients with intractable epilepsy.
The problem? "It won't be until this time next year, at the earliest, that anyone can get (CBD)," exclaimed Johnson. Johnson's son, Tres, suffers from a condition named Diprosopus and is commonly referred to as cranial duplication. Of only 35 cases in the world, Tres is the only one with his particular condition. According to his mother, Tres has no duplication on both sides of his brain. As a result, Tres suffers from debilitating seizures with an average of 120 a day. Sometimes he has more.
"I've had to resuscitate him a couple times," Johnson explained. "He has so many seizures, but one is too many for any child to have to bear." According to Johnson, several months ago she started doing research into what methods and treatments might help her son. She had to drop out of nursing school in order to devote herself to caring for Tres; and, her research yielded something she hadn't anticipated.
"I read the story about Charlotte Figi," Johnson explained. Figi is a little girl in Colorado who suffered from a major seizure disorder that was successfully treated with CBD. "I read how her seizures just completely stopped and how she could speak and do things she hadn't done before." Johnson wanted that for her son; but there was a small problem: it was illegal. Johnson got involved and went to Jefferson City and boldly spoke to her representatives. She even spoke to Governor Nixon. "I'm very pleased that Nixon signed the bill," Johnson said. "I just don't like that he waited to the last minute to sign it."
Had he not signed it, the bill would have become law, anyway, because of a emergency provision in the bill. It is believed that, had Nixon vetoed the bill, the legislature would have overridden the veto "The problem with him taking so long to sign the bill is it makes it that much longer for everything to go into effect," lamented Johnson. "There are still plenty of obstacles."
One such obstacle is the lack of Schedule I physicians at Barnes Children's Hospital in St. Louis. "There are't any who can prescribe (CBD) there," Johnson explained. "And it still needs to be settled who can produce the plants and where they can do it. Licenses have to be issued, and the state has to figure out how they're going to regulate it." One concern that prompts the need for regulation is the need for the CBD that is sold to actually be what its makers claim it to be.
"It's sad to think that there are people out there who would take advantage of something like this," exclaimed Johnson. While she patiently waits for the regulation of the law to be settled, she said she is not giving up on her advocacy for marijuana legalization at the federal level. "It's great that the law passed here but it's going to be at least a year before we can do anything," Johnson explained. "I mean, we could get stuff illegally; but what good would that do? How would that help? You have to go about things the right way.
"I believe the legislature is extremely out of touch. Unless any of them have been personally affected by this issue, then they don't want anything to do with it." Johnson said she had been told by some legislators in Jefferson City that their views on the subject had changed after hearing her testimony; but, she noted, they seemed hesitant to commit to anything. "It's almost like they don't want to do anything unless a big pharmaceutical company is supporting it," she remarked. "I was against (medical marijuana and CBD) at first. I laughed it off. But that's because I didn't understand it. Then I started educating myself and learning about it and how everything works; and I don't understand why our leaders won't do the same."
Johnson said she is just as passionate about the issue at the federal level as she is at the state level. One of her concerns is that, even if CBD and marijuana are rescheduled in their narcotic classification at the state level, the federal laws haven't changed and don't appear to be changing anytime soon.
Multiple Struggles
Among the difficult challenges faced by Tres and his mother is the fact that, as the only person in the world with his particular condition, every procedure done with Tres is one of a kind. "That's why, when the doctors tell me what to expect, I know they aren't for sure because they have nothing to compare it to," Johnson explained. "I'm extremely glad Tres has the doctors that he has. They really care about him. So many other doctors look at Tres as nothing more than a case study and I don't want that for my son."
Johnson said she has turned down procedures because they weren't the best decision for the long term health of her son. According to Johnson, so many parts of Tres' brain are active with seizure activity that it is difficult for his doctors to determine the best path for treatment. "His medicines, because he is the only person with his specific condition, is so expensive," Johnson explained. "And they have negative long-term effects on his health. That's another reason why I looked into alternatives." One such alternative was a CBD supplement that Johnson said actually helped Tres considerably.
"If that supplement helped him as much as it did, I can only wonder what the real thing could do for him," she exclaimed. "There are so many people in a similar type situation that need help. Unless someone knows someone else in this kind of need, they can't comprehend what it's like." Johnson said she knows there are others involved in the same fight as she; but, while some are choosing to move to states like Colorado, where marijuana has been completely legalized, moving isn't really an option for her or her family at this time. "That's why this is so important," she explained. "Because, in cases like Tres, this could be his only hope." The CBD law received support from 90% of members of the Missouri House and unanimous support in the Missouri Senate. Missouri joins ten other states which passed CBD laws this year. And, while it is considered a victory by many who lobby for marijuana legalization efforts, there are hurdles much like the ones Johnson and Tres now encounter.
"I am pleased that Governor Nixon signed H.B. 2338 into law. It will dramatically improve the lives of many patients who suffer from epilepsy and their families," said Show-Me Cannabis Executive Director John Payne in a statement. "However, those patients still have to wait for the departments of Health and Senior Services and the Department of Agriculture to write the regulations on how this cannabis will be grown and the CBD oil extracted and distributed. The process could have been expedited if legislators had spelled out more of those details in the bill, and if Governor Nixon had signed it when it was passed in May -- instead of 45 days later, on the last possible day he could sign the legislation."
Johnson said she remains hopeful on the matter, though. "I'm a firm believer that we're given struggles, not just to help ourselves, but to help others," Johnson said. "What needs to happen is that more people need to educate themselves and get involved. If they don't get involved and if they don't vote or fight for something, then who will?"
Legalization advocates say obstacles ahead
The signing of HB 2338 -- which permits marijuana to be grown legally in Missouri for the purpose of cannabidiol (CBD) to be extracted -- has many people celebrating in the state. But some advocates of the new law see more issues further ahead. John Payne, Executive Director with the Show-Me Cannabis organization, said those hoping to use CBD to treat seizure disorders will have to wait.
"As I understand it the process will take a while. It won't be immediate," Payne remarked. "Although the law is a step in the right direction, it remains far too restrictive." Research shows that CBD can also be an efficacious treatment for spasticity and neuropathic pain associated with disorders such as muscular dystrophy and multiple sclerosis. But, unless and until this law is expanded, those patients will not have legal access to this treatment."
One of the reasons Payne said the new law remains too restrictive is because of the scheduling of CBD within federal guidelines that don't meet the federal definition of hemp. "It's tricky," Payne explained. "An argument could be made either way (that it is hemp/not hemp). But according to the state of Missouri, CBD is not defined as narcotic." Another issue, according to Payne, is the limited number of licenses that will be issued by the state to grow cannabis. "As I understand it there will be only two licenses for the state," Payne explained. "We're definitely going to be lobbying to expand that and we're going to work on expanding conditions that qualify."
In a written statement, Pane said: "Legislators should also consider raising or eliminating the law's very low THC limit. THC is the main psychoactive chemical in cannabis, and it was excluded because legislators feared those just seeking to get high would abuse the system. That is an understandable concern, but if that principle were applied to all pharmaceutical products we would have to ban painkillers, anti-anxiety drugs, stimulants for ADD/ADHD, etc.
"The decisive question for a drug's medical use should always be whether it is effective for the patient. Cannabis with both THC and CBD has been used for thousands of years to treat problems including nausea, pain, and insomnia, and it is currently legal in 23 others states. "Finally, recent research shows that CBD and THC work together and complement each other in their medical application. Dr. Gil Mobley of Springfield testified at the House General Laws Committee hearing on this bill in April and urged legislators to not exclude THC because 'the synergistic power of the cannabinoids working together in various ratios to both potentiate and ameliorate specific outcomes represents one of the promising areas of modern medical research.'
"In short, the new law holds a great deal of promise and Missouri's political leaders should be applauded for finally taking this step. However, it will require a great deal of work and expansion for the law to provide help to all the patients who can benefit." Payne said his organization is optimistic about legalization efforts in Missouri for the future. In 2012, Show-Me Cannabis collected approximately 75,000 signatures on a petition to place the issue of marijuana legalization on the ballot. However, twice as many signatures were needed.
"We're better funded and more organized now," Payne said. "We'll be organizing another petition going forward to the 2016 elections. It's a narrow time frame; but we're hopeful that we will get it done in time to get the issue on the ballot." Payne said Show-Me Cannabis will be petitioning to amend the Missouri Constitution to legalize marijuana. "If the constitution is amended, the Legislature can't overturn it," Payne explained. "If the people vote to change the statute, then the Legislature can override them. But if the people vote to legalize by amending the constitution, the Legislature can't do anything to change it on their own."
Payne is hopeful there won't be too many difficulties presented by State Legislature as he said he has observed increased support from among state lawmakers. "I think people feel more confident discussing the issue now because it's so prevalent," Payne explained. "I think people have started educating themselves and know more about the issue and that helps them feel more bold about discussing it." Payne said he has seen increased support in most of the areas he has gone to in the state. "When you look at the statistics surrounding this issue, it can be really eye-opening," Payne said. "Annually, Missouri has 20,000 arrests just related to marijuana. It's a large category." Payne went on to say that some law enforcement officials have even changed their views on the matter and attend Show-Me Cannabis meetings.
News Moderator - The General @ 420 MAGAZINE ®
Source: Dailystatesman.com
Author: Jonathon Dawe Statesman
Contact: Contact Us
Website: Dexter Daily Statesman: Local News: Governor Nixon signs bill to permit legal growth of marijuana in Missouri (07/19/14)
The problem? "It won't be until this time next year, at the earliest, that anyone can get (CBD)," exclaimed Johnson. Johnson's son, Tres, suffers from a condition named Diprosopus and is commonly referred to as cranial duplication. Of only 35 cases in the world, Tres is the only one with his particular condition. According to his mother, Tres has no duplication on both sides of his brain. As a result, Tres suffers from debilitating seizures with an average of 120 a day. Sometimes he has more.
"I've had to resuscitate him a couple times," Johnson explained. "He has so many seizures, but one is too many for any child to have to bear." According to Johnson, several months ago she started doing research into what methods and treatments might help her son. She had to drop out of nursing school in order to devote herself to caring for Tres; and, her research yielded something she hadn't anticipated.
"I read the story about Charlotte Figi," Johnson explained. Figi is a little girl in Colorado who suffered from a major seizure disorder that was successfully treated with CBD. "I read how her seizures just completely stopped and how she could speak and do things she hadn't done before." Johnson wanted that for her son; but there was a small problem: it was illegal. Johnson got involved and went to Jefferson City and boldly spoke to her representatives. She even spoke to Governor Nixon. "I'm very pleased that Nixon signed the bill," Johnson said. "I just don't like that he waited to the last minute to sign it."
Had he not signed it, the bill would have become law, anyway, because of a emergency provision in the bill. It is believed that, had Nixon vetoed the bill, the legislature would have overridden the veto "The problem with him taking so long to sign the bill is it makes it that much longer for everything to go into effect," lamented Johnson. "There are still plenty of obstacles."
One such obstacle is the lack of Schedule I physicians at Barnes Children's Hospital in St. Louis. "There are't any who can prescribe (CBD) there," Johnson explained. "And it still needs to be settled who can produce the plants and where they can do it. Licenses have to be issued, and the state has to figure out how they're going to regulate it." One concern that prompts the need for regulation is the need for the CBD that is sold to actually be what its makers claim it to be.
"It's sad to think that there are people out there who would take advantage of something like this," exclaimed Johnson. While she patiently waits for the regulation of the law to be settled, she said she is not giving up on her advocacy for marijuana legalization at the federal level. "It's great that the law passed here but it's going to be at least a year before we can do anything," Johnson explained. "I mean, we could get stuff illegally; but what good would that do? How would that help? You have to go about things the right way.
"I believe the legislature is extremely out of touch. Unless any of them have been personally affected by this issue, then they don't want anything to do with it." Johnson said she had been told by some legislators in Jefferson City that their views on the subject had changed after hearing her testimony; but, she noted, they seemed hesitant to commit to anything. "It's almost like they don't want to do anything unless a big pharmaceutical company is supporting it," she remarked. "I was against (medical marijuana and CBD) at first. I laughed it off. But that's because I didn't understand it. Then I started educating myself and learning about it and how everything works; and I don't understand why our leaders won't do the same."
Johnson said she is just as passionate about the issue at the federal level as she is at the state level. One of her concerns is that, even if CBD and marijuana are rescheduled in their narcotic classification at the state level, the federal laws haven't changed and don't appear to be changing anytime soon.
Multiple Struggles
Among the difficult challenges faced by Tres and his mother is the fact that, as the only person in the world with his particular condition, every procedure done with Tres is one of a kind. "That's why, when the doctors tell me what to expect, I know they aren't for sure because they have nothing to compare it to," Johnson explained. "I'm extremely glad Tres has the doctors that he has. They really care about him. So many other doctors look at Tres as nothing more than a case study and I don't want that for my son."
Johnson said she has turned down procedures because they weren't the best decision for the long term health of her son. According to Johnson, so many parts of Tres' brain are active with seizure activity that it is difficult for his doctors to determine the best path for treatment. "His medicines, because he is the only person with his specific condition, is so expensive," Johnson explained. "And they have negative long-term effects on his health. That's another reason why I looked into alternatives." One such alternative was a CBD supplement that Johnson said actually helped Tres considerably.
"If that supplement helped him as much as it did, I can only wonder what the real thing could do for him," she exclaimed. "There are so many people in a similar type situation that need help. Unless someone knows someone else in this kind of need, they can't comprehend what it's like." Johnson said she knows there are others involved in the same fight as she; but, while some are choosing to move to states like Colorado, where marijuana has been completely legalized, moving isn't really an option for her or her family at this time. "That's why this is so important," she explained. "Because, in cases like Tres, this could be his only hope." The CBD law received support from 90% of members of the Missouri House and unanimous support in the Missouri Senate. Missouri joins ten other states which passed CBD laws this year. And, while it is considered a victory by many who lobby for marijuana legalization efforts, there are hurdles much like the ones Johnson and Tres now encounter.
"I am pleased that Governor Nixon signed H.B. 2338 into law. It will dramatically improve the lives of many patients who suffer from epilepsy and their families," said Show-Me Cannabis Executive Director John Payne in a statement. "However, those patients still have to wait for the departments of Health and Senior Services and the Department of Agriculture to write the regulations on how this cannabis will be grown and the CBD oil extracted and distributed. The process could have been expedited if legislators had spelled out more of those details in the bill, and if Governor Nixon had signed it when it was passed in May -- instead of 45 days later, on the last possible day he could sign the legislation."
Johnson said she remains hopeful on the matter, though. "I'm a firm believer that we're given struggles, not just to help ourselves, but to help others," Johnson said. "What needs to happen is that more people need to educate themselves and get involved. If they don't get involved and if they don't vote or fight for something, then who will?"
Legalization advocates say obstacles ahead
The signing of HB 2338 -- which permits marijuana to be grown legally in Missouri for the purpose of cannabidiol (CBD) to be extracted -- has many people celebrating in the state. But some advocates of the new law see more issues further ahead. John Payne, Executive Director with the Show-Me Cannabis organization, said those hoping to use CBD to treat seizure disorders will have to wait.
"As I understand it the process will take a while. It won't be immediate," Payne remarked. "Although the law is a step in the right direction, it remains far too restrictive." Research shows that CBD can also be an efficacious treatment for spasticity and neuropathic pain associated with disorders such as muscular dystrophy and multiple sclerosis. But, unless and until this law is expanded, those patients will not have legal access to this treatment."
One of the reasons Payne said the new law remains too restrictive is because of the scheduling of CBD within federal guidelines that don't meet the federal definition of hemp. "It's tricky," Payne explained. "An argument could be made either way (that it is hemp/not hemp). But according to the state of Missouri, CBD is not defined as narcotic." Another issue, according to Payne, is the limited number of licenses that will be issued by the state to grow cannabis. "As I understand it there will be only two licenses for the state," Payne explained. "We're definitely going to be lobbying to expand that and we're going to work on expanding conditions that qualify."
In a written statement, Pane said: "Legislators should also consider raising or eliminating the law's very low THC limit. THC is the main psychoactive chemical in cannabis, and it was excluded because legislators feared those just seeking to get high would abuse the system. That is an understandable concern, but if that principle were applied to all pharmaceutical products we would have to ban painkillers, anti-anxiety drugs, stimulants for ADD/ADHD, etc.
"The decisive question for a drug's medical use should always be whether it is effective for the patient. Cannabis with both THC and CBD has been used for thousands of years to treat problems including nausea, pain, and insomnia, and it is currently legal in 23 others states. "Finally, recent research shows that CBD and THC work together and complement each other in their medical application. Dr. Gil Mobley of Springfield testified at the House General Laws Committee hearing on this bill in April and urged legislators to not exclude THC because 'the synergistic power of the cannabinoids working together in various ratios to both potentiate and ameliorate specific outcomes represents one of the promising areas of modern medical research.'
"In short, the new law holds a great deal of promise and Missouri's political leaders should be applauded for finally taking this step. However, it will require a great deal of work and expansion for the law to provide help to all the patients who can benefit." Payne said his organization is optimistic about legalization efforts in Missouri for the future. In 2012, Show-Me Cannabis collected approximately 75,000 signatures on a petition to place the issue of marijuana legalization on the ballot. However, twice as many signatures were needed.
"We're better funded and more organized now," Payne said. "We'll be organizing another petition going forward to the 2016 elections. It's a narrow time frame; but we're hopeful that we will get it done in time to get the issue on the ballot." Payne said Show-Me Cannabis will be petitioning to amend the Missouri Constitution to legalize marijuana. "If the constitution is amended, the Legislature can't overturn it," Payne explained. "If the people vote to change the statute, then the Legislature can override them. But if the people vote to legalize by amending the constitution, the Legislature can't do anything to change it on their own."
Payne is hopeful there won't be too many difficulties presented by State Legislature as he said he has observed increased support from among state lawmakers. "I think people feel more confident discussing the issue now because it's so prevalent," Payne explained. "I think people have started educating themselves and know more about the issue and that helps them feel more bold about discussing it." Payne said he has seen increased support in most of the areas he has gone to in the state. "When you look at the statistics surrounding this issue, it can be really eye-opening," Payne said. "Annually, Missouri has 20,000 arrests just related to marijuana. It's a large category." Payne went on to say that some law enforcement officials have even changed their views on the matter and attend Show-Me Cannabis meetings.
News Moderator - The General @ 420 MAGAZINE ®
Source: Dailystatesman.com
Author: Jonathon Dawe Statesman
Contact: Contact Us
Website: Dexter Daily Statesman: Local News: Governor Nixon signs bill to permit legal growth of marijuana in Missouri (07/19/14)
