Image of Charlotte Figi
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Rep. Scott Perry (R-Pa.) first introduced the Charlotte’s Web Medical Access Act, named for 8-year-old Charlotte Figi, who successfully treats her debilitating seizure disorder with a non-psychoactive form of marijuana, last year. The measure, re-introduced in March after revisions, would remove similar types of medical cannabis from the federal list of Schedule I substances, which the federal government considers to have no medicinal value. All forms of marijuana are currently illegal under federal law.
 
“We’re not trying to do something fringe here,” Charlotte’s mother, Paige Figi, who's spearheading the campaign, told The Huffington Post by phone in advance of the launch. “This is a human rights issue. This has been lifesaving for my daughter.”
 
The campaign, dubbed the Coalition for Access Now, kicked off with an event at the National Press Club in Washington. In the coming months, the group plans to educate lawmakers and the public about the benefits of therapeutic hemp oil, which is derived from the marijuana plant and has been used to treat thousands of children with uncontrolled epilepsy.
 
Before Charlotte began using cannabis oil, she suffered sometimes hundreds of seizures a day. She had been treated with a cocktail of pharmaceuticals that produced an array of side effects, but failed to ease her convulsions. Three years ago, feeling like they were out of options, Figi and her husband learned about a strain of medical marijuana rich in CBD, a compound that doesn’t produce the “high” commonly associated with smoking pot. They decided to try it.
 
“She’s 99.9 percent seizure-controlled now,” Figi said of her daughter. “She’s walking and talking and going to dance class. It worked.”
 
Figi decided to share her daughter’s story on Dr. Sanjay Gupta’s groundbreaking CNN documentary “Weed” in 2013. Hundreds of families in similar situations swarmed the family's home in Colorado, where marijuana is legal for both medical and recreational purposes. The purveyors of the strain used to treat Charlotte, which is administered in an oil or capsule form, named it Charlotte’s Web in her honor.
 
“We had this big influx of medical refugees,” Figi said of the families who upended their lives to relocate to Colorado. “We saw the same thing over and over again. Now, thousands of children are controlling their conditions with this.”
 
In the year and a half since Charlotte’s story first made waves, 13 states have passed laws allowing children with intractable epilepsy to treat their conditions with CBD-rich strains of cannabis, including conservative strongholds like Georgia and Utah. Thirteen more are mulling similar legislation. Research on a drug derived from CBD is underway, but for now most doctors consider the substance's success anecdotal.
 
But the plant’s illegal status under federal law creates significant barriers. Families can’t cross state lines with the oil in their possession. And it can’t be shipped between states, meaning all the cannabis consumed in one state must also be grown and produced there.
 
Moreover, each state law is written differently. In Utah, in-state cultivation is prohibited, forcing families who want to treat their children with cannabis to procure it at their own risk. New York, which passed one of the nation's strictest medical marijuana laws last year, won’t provide it to patients until after a grace period.
 
“Until the federal law passes, state laws don’t allow you to do much of anything,” Figi said. “They’re too limiting.”
 
Children are dying in the meantime. Wisconsin resident Sally Schaeffer lost her 8-year-old daughter, Lydia, to a seizure in her sleep on Mother’s Day last year, one month after her state adopted its own CBD law. The Wisconsin legislation, which Schaeffer lobbied for and which Gov. Scott Walker named Lydia’s Law in her honor, contains an amendment that prohibits children from using the cannabis oil outside of a clinical trial. No hospital has yet signed on to conduct any trials.
 
“I fought so hard, and now my husband and I -- all we have is a headstone,” Schaeffer, who is working with Figi in support of the federal bill, told HuffPost through tears by phone. “I don’t want anyone to end up in our shoes. I don’t want anyone to have to bury their own child.”
 
Last summer, 9-year-old New York resident Anna Conte, whose family championed New York's medical marijuana law, died from complications from her severe epilepsy. New York lawmakers had already passed the legislation at the time, but it won't go into effect until early 2016.
 
On Wednesday, the Drug Policy Alliance released a video that tells the story of 7-year-old Ohio resident Sophia Nazzarine, whose parents are desperate to treat her seizure condition with medical cannabis, but are prohibited from doing so in their state.
 
Figi said her goal is to have the Charlotte's Web Medical Access Act signed into law by July. Some conservative lawmakers, including Perry and Rep. Paul Ryan (R-Wis.), who oppose other forms of medical marijuana, have already voiced their support. Figi said the coalition will spend the next few months lobbying other Republican leaders.
 
“We don’t have a full year or two years to go through all the committees -- we’re making calls every day,” Figi said. “A mistake has been made and we’re trying to fix it. With enough eyes and ears on this issue we can fix it.”
 
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