The epilepsy community is ecstatic after the FDA approves the first cannabis-based drug



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Members of the Chicago-area epileptic community have been encouraged by the recent approval by the Food and Drug Administration of the first cannabis-based prescription drug, a hope that will lead to a search. more on the medical effects of marijuana. Last month, the FDA approved Epidiolex to treat two rare forms of epilepsy in children 2 years old or older. Strawberry flavored syrup uses cannabidiol – or CBD, a form of non-psychoactive cannabis to control seizures, but it is unclear exactly how. Prior to the marketing of Epidolex, the Drug Enforcement Administration must officially reclassify CBD in a class of drugs that have received medical clearance. The agency is expected to announce a decision in the coming months.

Ayesha Akhtar, the director of education at the Greater Chicago Epilepsy Foundation, said that the organization saw a flood of requests from people who were "ecstatic" about from the FDA. ad.

"If you just visited our Facebook page the day we posted, so many families were saying," Finally! When can I get it? How can I get it? I can not wait until it is also approved for my type of epilepsy, "said Akhtar.

She added that the drug's approval marks a" radical change "for treatment Epilepsy Medication management has generally been the first treatment after a diagnosis of epilepsy, which can often be difficult to treat because traditional antiepileptic drugs do not work for many people who suffer from it. The next approach could be a switch to a new diet – such as the ketogenic diet high in fats and carbohydrates – or even surgery.

Ayesha Akhtar | Foundation of Grand Epilepsy Chicago

The experts can now CBD as a viable treatment option earlier in the process.

"It's really exciting for us to push that earlier in the conversation," said Akhtar, who thinks the potential reclassification of the CBD could lead to further research on how treatments based on cannabis interact with traditional medicines. She is also convinced that more drugs like Epidiolex will eventually be approved by the federal government.

"I think it's the government's way of saying," Yes, we understand, [anti-epileptic drugs] does not work for 30% of the population, let's try to find an alternative therapy. "

12-year-old Ashley Surin began having epileptic seizures after being diagnosed with leukemia in 2008. After eight years of unsuccessful cycling with traditional drugs, she began taking medicine, cannabis to manage his condition, his mother, Maureen Surin, now calls the drug a "medical miracle" and sees the FDA decision as a step in the right direction.

"There are so much value in the CBD that we need research to go, "said Maureen Surin." We need the government behind. "

Although encouraged by the prospect of the DEA reclassifying the CBD , the mother is not completely sold on Epidiolex.After her daughter's neurologist recommended the drug, she examined it and was extinguished by the synthetic ingredients and side effects, which include diarrhea , vomit fatigue, and sleep problems.

"I'm happy that they"

In January, Surin and her husband, Jim, filed a federal lawsuit against the state and Schaumburg School District 54 after Ashley would have been excluded from the class. for the drug with the drug. The following month, state representative Lou Lang, D-Skokie, introduced the "Ashley's Law," a bill would allow parents or guardians to treat their children with cannabis while They are at school. In April, a federal judge finally ruled in favor of the family and Lang's measure is currently under review by Gov. Bruce Rauner after getting overwhelming bipartisan support in both Houses of the Legislative Assembly .

Maureen and Ashley Surin | Photo courtesy

Meanwhile, Ashley continues to take a cannabis blend containing 95% CBD and 5% tetrahydrocannabinol – or THC, the ingredient in marijuana that has psychotropic effects. While the DEA could declassify the CBD in a few months, there is no such plan for the psychoactive THC, which according to some experts is needed to open the CBD receptors to stop the convulsive effects of the drug. epilepsy.

Nevertheless, Surin is pleased with her "[TRADUCTION]" My daughter has a beautiful, normal life, with no side effects and no crisis, "she said. "How could I improve on this?"

Unfortunately for the family, health insurance providers do not cover cannabis products and their costs increase. Surin estimates that they spent about $ 6,000 this year on her daughter's cannabis-based drugs.

Like Akhtar, the mother hopes that the FDA announcement will lead to further research and approval of more drugs for cannabis. covered by insurance providers. She also hopes that this measure marks changes in other federal restrictions that prohibit most doctors from prescribing medical cannabis and prohibit patients with medical cannabis from going out of the state with their medications. "Laws must catch up with reality."

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