Jacob Redmond
Well-Known Member
The University of Alabama at Birmingham's announcement Tuesday that trials would soon begin to study the effects of the marijuana-derived cannabidiol medication to treat severe seizure disorders brought hope to parents for their children but also concern.
The institution's study under last year's state-approved legislation known as Carly's Law has an initial patient cap of 50 children and 50 adults. The limitation is due to the supply of the drug provided to Alabama for the study.
During a press conference on Tuesday about the study receiving federal approval to begin, Dr. David Standaert, chairman of UAB's Department of Neurology, addressed the supply issue resulting in the initial limitation on participants.
"At the moment we have an agreement with the vendor to supply enough medication to treat 50 children and 50 adults. That's an initial agreement," Standaert said. "It may be that we have more demand than that. I won't be surprised if we have more demand than that. If we arrive at that point, we'll have to talk with our vendor or possibly other vendors at that point to see if we can expand the supply."
Standaert praised the medication's supplier for giving the substance, which will be delivered to patients orally in an oil form, free to the state for the program. "The vendor has agreed to supply this at no charge. This is really a tremendous benefit to the state. I don't know what this would cost. ... It certainly would not be cheap," he said.
"I think that the vendor has done a great service to us by offering and providing enough medication to treat the first 100 patients for free," Standaert added.
But some parents have expressed concern about whether their child would be accepted into the program.
"It's very exciting and encouraging that we're at this point, but UAB placed a cap on it -- 50 kids and 50 adults -- which I wasn't expecting. I kind of feel like it's the Civil War now because I don't want people to turn on each other because there's only 50 spots for kids," Prattville mother Robin Pass said.
Pass' son 3-year-old son, Gabriel, has upwards of 20 seizures a day, sometimes more, due to brain trauma that resulted from his birth mother's injuries while pregnant with him. "He's doing well. He's healthy and still having seizures, but it's part of life," Pass said.
Pass is like many parents in Alabama who want the opportunity to try cannabidiol, also known as CBD, to treat the seizures that conventional medication has not controlled.
"I'm at the mercy of what they decide. My child, we hope that we qualify, but at the same time that we hope that we qualify, that means another kid doesn't," Pass said. "I don't want Gabriel to benefit from it and it costs someone else their life."
Amy Young of Wetumpka, whose 3-year-old daughter, Leni, suffers from seizures, is anxiously awaiting a decision to see if her child will participate in the study. We'll "wait for the them to review all of our information and hope that we're one of the lucky ones," she said.
CBD is a substance derived from marijuana, but it does not share the intoxicating properties. UAB's study will be one of the largest in the nation to see whether the medication can help treat severe seizures.
The Birmingham area's Dustin Chandler, who pushed the Carly's Law legislation that is named after the 4-year-old daughter he has with his wife, Amy, understands the concerns of parents hoping their child will be accepted.
"This is a supply issue and nobody is trying to leave anyone out," Chandler said. "Carly has received no preferential treatment. Carly has gone through the exact procedure that everyone else has gone through."
Informational packets are available for parents and others interested in participating in the study. A medical panel will review the prospective patients and decide who will participate in the study, Chandler said.
"Really it boils down to supply. UAB has been promised a certain amount to be able to supply a certain amount of patients. It is important to note if demand exceeds supply, UAB will be able to go back to the company and say, 'We need more oil.' If they say no, they reserve the right to go talk to other people," he said.
"UAB can't overpromise and under-deliver in a situation like that," he added. "It's a supply thing. If companies are out there that can supply this oil to UAB and meet their standards ... by all means get in touch with UAB and see if they can supply them with that oil."
Chandler emphasized that Carly's Law represents the beginning of a new chapter for research in Alabama. "This is a great first step. This is only the starting point that I think is going to lead to bigger and better things in a responsible manner," he said.
Pass said positive results from the study may prompt Alabama lawmakers to expand availability of CBD. "Even if my kid is not part of this 50 and this 50 can show it can make a difference, hopefully it will encourage more legislation. I just pray it won't be too late for my child by the time that this happens," she said.
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Parents worry if their child will be in Carly's Law study of marijuana-derived CBD oil | AL.com
Author: Martin J. Reed
Contact: mreed@al.com
Photo Credit: Martin J. Reed
Website: Alabama Local News, Breaking News, Sports & Weather - AL.com
The institution's study under last year's state-approved legislation known as Carly's Law has an initial patient cap of 50 children and 50 adults. The limitation is due to the supply of the drug provided to Alabama for the study.
During a press conference on Tuesday about the study receiving federal approval to begin, Dr. David Standaert, chairman of UAB's Department of Neurology, addressed the supply issue resulting in the initial limitation on participants.
"At the moment we have an agreement with the vendor to supply enough medication to treat 50 children and 50 adults. That's an initial agreement," Standaert said. "It may be that we have more demand than that. I won't be surprised if we have more demand than that. If we arrive at that point, we'll have to talk with our vendor or possibly other vendors at that point to see if we can expand the supply."
Standaert praised the medication's supplier for giving the substance, which will be delivered to patients orally in an oil form, free to the state for the program. "The vendor has agreed to supply this at no charge. This is really a tremendous benefit to the state. I don't know what this would cost. ... It certainly would not be cheap," he said.
"I think that the vendor has done a great service to us by offering and providing enough medication to treat the first 100 patients for free," Standaert added.
But some parents have expressed concern about whether their child would be accepted into the program.
"It's very exciting and encouraging that we're at this point, but UAB placed a cap on it -- 50 kids and 50 adults -- which I wasn't expecting. I kind of feel like it's the Civil War now because I don't want people to turn on each other because there's only 50 spots for kids," Prattville mother Robin Pass said.
Pass' son 3-year-old son, Gabriel, has upwards of 20 seizures a day, sometimes more, due to brain trauma that resulted from his birth mother's injuries while pregnant with him. "He's doing well. He's healthy and still having seizures, but it's part of life," Pass said.
Pass is like many parents in Alabama who want the opportunity to try cannabidiol, also known as CBD, to treat the seizures that conventional medication has not controlled.
"I'm at the mercy of what they decide. My child, we hope that we qualify, but at the same time that we hope that we qualify, that means another kid doesn't," Pass said. "I don't want Gabriel to benefit from it and it costs someone else their life."
Amy Young of Wetumpka, whose 3-year-old daughter, Leni, suffers from seizures, is anxiously awaiting a decision to see if her child will participate in the study. We'll "wait for the them to review all of our information and hope that we're one of the lucky ones," she said.
CBD is a substance derived from marijuana, but it does not share the intoxicating properties. UAB's study will be one of the largest in the nation to see whether the medication can help treat severe seizures.
The Birmingham area's Dustin Chandler, who pushed the Carly's Law legislation that is named after the 4-year-old daughter he has with his wife, Amy, understands the concerns of parents hoping their child will be accepted.
"This is a supply issue and nobody is trying to leave anyone out," Chandler said. "Carly has received no preferential treatment. Carly has gone through the exact procedure that everyone else has gone through."
Informational packets are available for parents and others interested in participating in the study. A medical panel will review the prospective patients and decide who will participate in the study, Chandler said.
"Really it boils down to supply. UAB has been promised a certain amount to be able to supply a certain amount of patients. It is important to note if demand exceeds supply, UAB will be able to go back to the company and say, 'We need more oil.' If they say no, they reserve the right to go talk to other people," he said.
"UAB can't overpromise and under-deliver in a situation like that," he added. "It's a supply thing. If companies are out there that can supply this oil to UAB and meet their standards ... by all means get in touch with UAB and see if they can supply them with that oil."
Chandler emphasized that Carly's Law represents the beginning of a new chapter for research in Alabama. "This is a great first step. This is only the starting point that I think is going to lead to bigger and better things in a responsible manner," he said.
Pass said positive results from the study may prompt Alabama lawmakers to expand availability of CBD. "Even if my kid is not part of this 50 and this 50 can show it can make a difference, hopefully it will encourage more legislation. I just pray it won't be too late for my child by the time that this happens," she said.
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Parents worry if their child will be in Carly's Law study of marijuana-derived CBD oil | AL.com
Author: Martin J. Reed
Contact: mreed@al.com
Photo Credit: Martin J. Reed
Website: Alabama Local News, Breaking News, Sports & Weather - AL.com
