Jacob Redmond
Well-Known Member
It's been a good year for Tatyana "Tuffy" Rivera.
Diagnosed at 10 months with a severe form of epilepsy called Lennox-Gastaut syndrome, the Camden County girl once suffered up to 300 seizures a day, some lasting 10 minutes or more. Powerful prescription drugs did little to calm the electrical storms raging in her brain. She wore a helmet to protect her head, and spent most of her days on the couch or in bed.
Since last spring when she started taking oil infused with marijuana three times a day, the little girl has improved dramatically and now suffers just one seizure every two to three weeks. She's learned how to say "no," the first word she's spoken since she was a baby. On her eighth birthday, she went to an indoor water park for the first time, screaming her new word when it was time to leave.
"These things are amazing," said her father, Ricardo Rivera.
And they aren't understood by doctors.
Though roundly criticized by patients and their advocates for its restrictions, New Jersey's medical marijuana program is ahead of the science that could explain why the herb has had such a dramatic effect on Rivera's daughter.
Left to experiment with marijuana strains and cooking methods, parents like Rivera are fighting for changes in state and federal laws that would make it easier for patients to access the drug and easier for researchers to study it.
"I have to come home, go onto the stove and act like a pharmacist, which I'm not," said Rivera, who turned to the Internet to learn how to infuse coconut oil with the dried marijuana he buys each month from a state-approved dispensary an hour away. "I'm actually considering leaving the state because this program (is) a joke, a complete joke."
Last month, U.S. Sen. Cory Booker, D-N.J., Sen. Rand Paul, R-Ky., and Kirsten Gillibrand, D-N.Y., introduced the Compassionate Access, Research Expansion and Respect States Act, or CARERS Act. If enacted, the legislation would make it illegal for federal agencies to interfere with state laws permitting medical marijuana. Among other measures, it would reschedule marijuana as a Schedule II drug, making it easier for researchers and pharmaceutical companies to study it.
New Jersey has legalized marijuana use for certain medical conditions, including seizure disorders, but cannabis is still classified as a Schedule I drug under federal law. The U.S. Drug Enforcement Administration considers marijuana among the most dangerous drugs, with a high potential for abuse and addiction, and with no accepted medical use - along with heroin, ecstasy, peyote and LSD.
That means it's harder for researchers to study marijuana's possible use as medicine. New Jersey's tightly regulated medical marijuana program is dispensed from three alternative treatment centers, but the state's registered doctors and their patients have little information about marijuana's side effects, interactions with other medications, or proper dosage.
It's also difficult to access. Of the 3,727 patients registered in New Jersey's medical marijuana program last year, about 7 percent, or 258 people, have seizure disorders, according to a recent annual report issued by the state Department of Health.
Dr. Michael Goodman, a pediatric neurologist and chief of pediatrics at Cooper University Health Care, isn't among the 33 neurologists in New Jersey registered to prescribe medical marijuana, though he has referred two of his patients with severe epilepsy to seek it out. Marijuana did not improve their seizures.
"I'm encouraged to hear someone's having a good response," Goodman said. "But I don't think we have good enough medical understanding of who's going to respond, how they're going to respond, and what makes the response."
"We need to figure out what makes it work."
The American Epilepsy Society agrees. About one-third of the 3 million Americans with epilepsy have treatment-resistant seizures, and well-controlled studies are needed to find better answers, it reports. The organization does not support the use of marijuana for seizures due to a lack of information about marijuana's safety and efficacy.
However, it is urging government and private organizations to fund marijuana research, and argues "current restrictions on the use of medical marijuana for research continue to stand in the way of scientifically rigorous research into the development of cannabinoid-based treatments."
For desperate parents, there is no time to wait.
Tina DeSilvio of Franklin Township said her 15-year-old daughter, Jenna, has thrived since starting a regular regimen of medical marijuana to treat her seizure disorder. She now plays sports, gets herself ready for school, and can do chores around the house, things she wasn't able to do not so long ago because of her disorder.
"The humor that she has is coming back," DeSilvio said. "She likes to joke and be silly, and that beautiful smile we didn't see for so long has been shining."
But her mother keeps a spreadsheet to track Jenna's progress and medications. Of the 49 strains of marijuana cultivated in the state's dispensaries, 33 are available to patients, with varying levels of tetrahydrocannabinolic acid (THCA) and cannabidiol (CBD). Like Rivera, DeSilvio makes an oral preparation for Jenna in her home kitchen.
"We've tried different strains," DeSilvio said. "Some were good, some were not so good. It's just a trial and error. Once you get to a sweet spot, you stay there for a while."
Indeed, some strains with higher levels of CBD triggered more seizures, a costly experiment for families who pay $535 per ounce of marijuana each month.
Rivera and DeSilvio are among those lobbying lawmakers like Booker for legislative changes that would help not just their children, but other patients, as well. They believe New Jersey's laws aren't enough.
"It's not treated like a medical marijuana program," argued Rivera. "It's treated like an illegal thing to do."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: South Jersey parents: Cory Booker bill would make it easier to study medical marijuana
Author: Kim Mulford
Contact: kmulford@courierpostonline.com
Photo Credit: John Ziomek
Website: Courier-Post | South Jersey local news, video, photos, entertainment, community information, and classifieds | courierpostonline.com
Diagnosed at 10 months with a severe form of epilepsy called Lennox-Gastaut syndrome, the Camden County girl once suffered up to 300 seizures a day, some lasting 10 minutes or more. Powerful prescription drugs did little to calm the electrical storms raging in her brain. She wore a helmet to protect her head, and spent most of her days on the couch or in bed.
Since last spring when she started taking oil infused with marijuana three times a day, the little girl has improved dramatically and now suffers just one seizure every two to three weeks. She's learned how to say "no," the first word she's spoken since she was a baby. On her eighth birthday, she went to an indoor water park for the first time, screaming her new word when it was time to leave.
"These things are amazing," said her father, Ricardo Rivera.
And they aren't understood by doctors.
Though roundly criticized by patients and their advocates for its restrictions, New Jersey's medical marijuana program is ahead of the science that could explain why the herb has had such a dramatic effect on Rivera's daughter.
Left to experiment with marijuana strains and cooking methods, parents like Rivera are fighting for changes in state and federal laws that would make it easier for patients to access the drug and easier for researchers to study it.
"I have to come home, go onto the stove and act like a pharmacist, which I'm not," said Rivera, who turned to the Internet to learn how to infuse coconut oil with the dried marijuana he buys each month from a state-approved dispensary an hour away. "I'm actually considering leaving the state because this program (is) a joke, a complete joke."
Last month, U.S. Sen. Cory Booker, D-N.J., Sen. Rand Paul, R-Ky., and Kirsten Gillibrand, D-N.Y., introduced the Compassionate Access, Research Expansion and Respect States Act, or CARERS Act. If enacted, the legislation would make it illegal for federal agencies to interfere with state laws permitting medical marijuana. Among other measures, it would reschedule marijuana as a Schedule II drug, making it easier for researchers and pharmaceutical companies to study it.
New Jersey has legalized marijuana use for certain medical conditions, including seizure disorders, but cannabis is still classified as a Schedule I drug under federal law. The U.S. Drug Enforcement Administration considers marijuana among the most dangerous drugs, with a high potential for abuse and addiction, and with no accepted medical use - along with heroin, ecstasy, peyote and LSD.
That means it's harder for researchers to study marijuana's possible use as medicine. New Jersey's tightly regulated medical marijuana program is dispensed from three alternative treatment centers, but the state's registered doctors and their patients have little information about marijuana's side effects, interactions with other medications, or proper dosage.
It's also difficult to access. Of the 3,727 patients registered in New Jersey's medical marijuana program last year, about 7 percent, or 258 people, have seizure disorders, according to a recent annual report issued by the state Department of Health.
Dr. Michael Goodman, a pediatric neurologist and chief of pediatrics at Cooper University Health Care, isn't among the 33 neurologists in New Jersey registered to prescribe medical marijuana, though he has referred two of his patients with severe epilepsy to seek it out. Marijuana did not improve their seizures.
"I'm encouraged to hear someone's having a good response," Goodman said. "But I don't think we have good enough medical understanding of who's going to respond, how they're going to respond, and what makes the response."
"We need to figure out what makes it work."
The American Epilepsy Society agrees. About one-third of the 3 million Americans with epilepsy have treatment-resistant seizures, and well-controlled studies are needed to find better answers, it reports. The organization does not support the use of marijuana for seizures due to a lack of information about marijuana's safety and efficacy.
However, it is urging government and private organizations to fund marijuana research, and argues "current restrictions on the use of medical marijuana for research continue to stand in the way of scientifically rigorous research into the development of cannabinoid-based treatments."
For desperate parents, there is no time to wait.
Tina DeSilvio of Franklin Township said her 15-year-old daughter, Jenna, has thrived since starting a regular regimen of medical marijuana to treat her seizure disorder. She now plays sports, gets herself ready for school, and can do chores around the house, things she wasn't able to do not so long ago because of her disorder.
"The humor that she has is coming back," DeSilvio said. "She likes to joke and be silly, and that beautiful smile we didn't see for so long has been shining."
But her mother keeps a spreadsheet to track Jenna's progress and medications. Of the 49 strains of marijuana cultivated in the state's dispensaries, 33 are available to patients, with varying levels of tetrahydrocannabinolic acid (THCA) and cannabidiol (CBD). Like Rivera, DeSilvio makes an oral preparation for Jenna in her home kitchen.
"We've tried different strains," DeSilvio said. "Some were good, some were not so good. It's just a trial and error. Once you get to a sweet spot, you stay there for a while."
Indeed, some strains with higher levels of CBD triggered more seizures, a costly experiment for families who pay $535 per ounce of marijuana each month.
Rivera and DeSilvio are among those lobbying lawmakers like Booker for legislative changes that would help not just their children, but other patients, as well. They believe New Jersey's laws aren't enough.
"It's not treated like a medical marijuana program," argued Rivera. "It's treated like an illegal thing to do."
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: South Jersey parents: Cory Booker bill would make it easier to study medical marijuana
Author: Kim Mulford
Contact: kmulford@courierpostonline.com
Photo Credit: John Ziomek
Website: Courier-Post | South Jersey local news, video, photos, entertainment, community information, and classifieds | courierpostonline.com
