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As the political debate surrounding medical marijuana continues in Pennsylvania, one West Manheim Township girl with epilepsy has already started taking a compound the drug as part of a clinical study. Twelve-year-old Lili Gilmore suffers from a severe form of epilepsy and recently started taking a marijuana compound through a study conducted by New York University's Langone Medical Center. Lili began taking cannabidiol oil, or CBD, on Feb. 28 to help treat the epileptic seizures associated with Lennox-Gastaut syndrome, said her mother, Natalie Gilmore. She is legally permitted to use the compound of the drug because she is part of the medical center's study.
Headed by Dr. Orrin Devinsky, a physician at the university's Comprehensive Epilepsy Center, the study has Lili taking Epidiolex, a form of cannabidiol oil that some parents of children with epilepsy think could give their kids better lives. But until the federal government loosens its policies that restrict studies and use of medical marijuana, Pennsylvanians will likely remain unable to use the drug. After Lili's 16-month study, Natalie and her husband, John Gilmore, hope the laws will have changed. U.S. Rep. Scott Perry, R-York County, said he opposes recreational marijuana and any use of smoked marijuana, but he would support legalizing cannabidiol oil to treat children's epileptic seizures.
There has been a recent effort by a handful of Pennsylvania state senators to legalize Charlotte's Web, a marijuana strain with high levels of cannabidiol oil and low levels of tetrahydrocannabinol, THC, the psychoactive ingredient that gets users high. But with the drug classified by the federal government as a Schedule 1 controlled substance, some lawmakers are reluctant to legalize something they say requires more research. Perry has met with parents of children who have epilepsy and said he senses their frustrations of seeing a solution that is blocked by their government. "It's the 21st century and there should be a way to control this substance," Perry said.
And that control, he noted, is precisely why he would not put a timestamp on his effort to cut through the bureaucratic red tape holding up the legalization of marijuana for medical use. "Legislation is something you want to get as close to perfect as you can," Perry said. "An arbitrary timetable wouldn't hit the mark as far as being responsible. I'm trying to do something that is pragmatic and a solution for some people." The Gilmores have watched their daughter suffer countless seizures. Doctors have told the couple that Lili has some form of seizure activity in her brain every four seconds. Since taking Epidiolex, a cannabidiol oil compound, Natalie said Lili is more alert and responsive. Additionally, Lili's seizures have not increased and Natalie said she has not noticed any negative or lethargic side effects.
The oil is obtained through GW Pharmaceuticals, a British company, she said. The Gilmores met with Perry's staff several weeks ago to discuss what the freshman congressman could do to help them gain access to medical marijuana. While Perry's staff did not know much about medical marijuana to treat seizures initially, she said they were supportive and open to hearing about why it is important to her family. Since their meeting, someone from Perry's staff has called several times to check in with the Gilmores and learn about the progress of Lili's clinical trial.
Starting on a low dose of cannabidiol oil, the amount Lili takes will increase as she is able to tolerate it, Natalie said. Her blood levels are evaluated regularly – every two weeks for the first month, once a month until July and every three months after that. It is encouraging to know Perry is working on legalizing some form of medical marijuana on the federal end, she said. Angie Sharrer has also dealt with Perry's staff. Sharrer, a Tyrone Township mother whose 9-year-old daughter, Annie, suffers multiple seizures every week, said she was encouraged to hear of Perry's recent legislative efforts. What that legislation may do, however, is indeterminate. Congressmen cannot tell state legislators what to do. But reclassifying marijuana from an unsafe drug to one that has potential for medical use would require federal legislation. And that shift could be cause for some hesitant Pennsylvania lawmakers to change their minds.
"We have had some conversation that they looked into rescheduling CBD oil," Sharrer said about talking with Perry's staff members. "It's pretty much impossible to do since it's a derivative of the marijuana plant." Perry said his staff is talking with attorneys, health organizations, drug researchers and advocacy groups in determining the potential for legalizing medical marijuana and using it safely. "The fact that you can't grow marijuana in this country legally presents the problem of getting the oil out of a plant you can't grow legally," Perry said. "How do you legislate that? These are things that take time." But Perry said he is determined to move as quickly as he can to help families who are suffering. "My timetable is as soon as possible," Perry said. "Families are wanting out there. "Maybe we don't use the marijuana plant, maybe we use the hemp plant. You have to look everywhere. There is a component in it that could be life-changing. But every day that goes by is a day their child is not realizing their full potential and is horribly afflicted."
News Moderator - The General @ 420 MAGAZINE ®
Source: Eveningsun.com
Author: Mark Walters
Contact: Contact Us - Evening Sun
Website: Medical marijuana: West Manheim girl starts cannabis trial - Evening Sun
Headed by Dr. Orrin Devinsky, a physician at the university's Comprehensive Epilepsy Center, the study has Lili taking Epidiolex, a form of cannabidiol oil that some parents of children with epilepsy think could give their kids better lives. But until the federal government loosens its policies that restrict studies and use of medical marijuana, Pennsylvanians will likely remain unable to use the drug. After Lili's 16-month study, Natalie and her husband, John Gilmore, hope the laws will have changed. U.S. Rep. Scott Perry, R-York County, said he opposes recreational marijuana and any use of smoked marijuana, but he would support legalizing cannabidiol oil to treat children's epileptic seizures.
There has been a recent effort by a handful of Pennsylvania state senators to legalize Charlotte's Web, a marijuana strain with high levels of cannabidiol oil and low levels of tetrahydrocannabinol, THC, the psychoactive ingredient that gets users high. But with the drug classified by the federal government as a Schedule 1 controlled substance, some lawmakers are reluctant to legalize something they say requires more research. Perry has met with parents of children who have epilepsy and said he senses their frustrations of seeing a solution that is blocked by their government. "It's the 21st century and there should be a way to control this substance," Perry said.
And that control, he noted, is precisely why he would not put a timestamp on his effort to cut through the bureaucratic red tape holding up the legalization of marijuana for medical use. "Legislation is something you want to get as close to perfect as you can," Perry said. "An arbitrary timetable wouldn't hit the mark as far as being responsible. I'm trying to do something that is pragmatic and a solution for some people." The Gilmores have watched their daughter suffer countless seizures. Doctors have told the couple that Lili has some form of seizure activity in her brain every four seconds. Since taking Epidiolex, a cannabidiol oil compound, Natalie said Lili is more alert and responsive. Additionally, Lili's seizures have not increased and Natalie said she has not noticed any negative or lethargic side effects.
The oil is obtained through GW Pharmaceuticals, a British company, she said. The Gilmores met with Perry's staff several weeks ago to discuss what the freshman congressman could do to help them gain access to medical marijuana. While Perry's staff did not know much about medical marijuana to treat seizures initially, she said they were supportive and open to hearing about why it is important to her family. Since their meeting, someone from Perry's staff has called several times to check in with the Gilmores and learn about the progress of Lili's clinical trial.
Starting on a low dose of cannabidiol oil, the amount Lili takes will increase as she is able to tolerate it, Natalie said. Her blood levels are evaluated regularly – every two weeks for the first month, once a month until July and every three months after that. It is encouraging to know Perry is working on legalizing some form of medical marijuana on the federal end, she said. Angie Sharrer has also dealt with Perry's staff. Sharrer, a Tyrone Township mother whose 9-year-old daughter, Annie, suffers multiple seizures every week, said she was encouraged to hear of Perry's recent legislative efforts. What that legislation may do, however, is indeterminate. Congressmen cannot tell state legislators what to do. But reclassifying marijuana from an unsafe drug to one that has potential for medical use would require federal legislation. And that shift could be cause for some hesitant Pennsylvania lawmakers to change their minds.
"We have had some conversation that they looked into rescheduling CBD oil," Sharrer said about talking with Perry's staff members. "It's pretty much impossible to do since it's a derivative of the marijuana plant." Perry said his staff is talking with attorneys, health organizations, drug researchers and advocacy groups in determining the potential for legalizing medical marijuana and using it safely. "The fact that you can't grow marijuana in this country legally presents the problem of getting the oil out of a plant you can't grow legally," Perry said. "How do you legislate that? These are things that take time." But Perry said he is determined to move as quickly as he can to help families who are suffering. "My timetable is as soon as possible," Perry said. "Families are wanting out there. "Maybe we don't use the marijuana plant, maybe we use the hemp plant. You have to look everywhere. There is a component in it that could be life-changing. But every day that goes by is a day their child is not realizing their full potential and is horribly afflicted."
News Moderator - The General @ 420 MAGAZINE ®
Source: Eveningsun.com
Author: Mark Walters
Contact: Contact Us - Evening Sun
Website: Medical marijuana: West Manheim girl starts cannabis trial - Evening Sun
