The Case for Legalizing Medical Cannabis for Kids

Cannabidiol comes from marijuana plants. It doesn’t cause highs but it may treat life-threatening epilepsy. Shouldn’t it be legal?

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Brian Resnick
April 23, 2015, 4 a.m.

Hemp oil, used to treat neur­o­lo­gic­al dis­orders, comes from the can­nabis plant. But don’t call it med­ic­al marijuana.

“People as­so­ci­ate med­ic­al and re­cre­ation­al marijuana with THC, with a street drug, and with get­ting high,” Paige Figi says on a re­cent phone call. “This has none of those things.”

Figi, spe­cific­ally, is talk­ing about an oil de­rived from “Char­lotte’s Web”—a strain of can­nabis that saved her daugh­ter, Char­lotte, and now bears her name. Un­like com­mon strains of marijuana, Char­lotte’s Web con­tains very little (less than .3 per­cent) THC—the psy­cho­act­ive sub­stance that brings about marijuana’s dis­tinct­ive high. In­stead, the plant pro­duces a high­er con­cen­tra­tion of can­na­bi­d­i­ol (here­after re­ferred to as CBD), a chem­ic­al that has shown prom­ise treat­ing the most de­bil­it­at­ing epi­lepsy in chil­dren. Char­lotte, who has Dravet syn­drome—a form of epi­lepsy with no cure—was suf­fer­ing through 300 seizures a week be­fore her treat­ment with the CBD-laden oil. Now, her mom says, it’s just two per month.

It’s no won­der why Figi wants to turn the con­ver­sa­tion away from med­ic­al marijuana. A re­cent sur­vey from the Uni­versity of Michigan found that while 63 per­cent of Amer­ic­ans say med­ic­al marijuana should be avail­able to adults, only 36 per­cent say chil­dren should also have ac­cess. In New Jer­sey, in 2013, New Jer­sey Gov­ernor Chris Christie was con­fron­ted by a par­ent of a child with Dravet syn­drome. “Don’t let my daugh­ter die,” the par­ent yelled at Christie, whose of­fice lim­ited the num­ber of can­nabis strains avail­able to three, none of which were like Char­lotte’s Web. Christie soon­after changed his mind on the policy. But the epis­ode showed how the push for CBD leg­al­iz­a­tion can be con­foun­ded in the shad­ow of marijuana polit­ics. And as politi­cians de­bate, par­ents wait, anxiously.

Sally Schaef­fer waited.

Schaef­fer’s daugh­ter, Ly­dia, suffered from a rare form of epi­lepsy that caused seizures in her sleep. “My hus­band and I would al­ways say we hated put­ting her to sleep,” Schaef­fer says, “be­cause we had no idea if she was seiz­ing or how much she was seiz­ing.”

For these parents—who have often exhausted every other medical option—Figi says they should have the right to an exception.  

Par­ents like Schaef­fer are caught in an epic di­lemma: Keep their chil­dren on strong phar­ma­ceut­ic­als that only mar­gin­ally help—while caus­ing severe side ef­fects of their own (Schaef­fer says doc­tors were re­com­mend­ing Ly­dia have a por­tion of her brain re­moved)—or pack up and move to states where CDB-pro­du­cing can­nabis plants are leg­al.

Col­or­ado, where Figi lives, has seen an in­flux of hun­dred of fam­il­ies, dubbed “med­ic­al refugees.”

“When we had the first med­ic­al-refugee fam­ily move here, after they heard the story and came to Col­or­ado, that’s when we star­ted the polit­ic­al work,” Figi says. After a 2013 CNN doc­u­ment­ary made her the face of the CBD-ac­cess move­ment, Figi star­ted two non­profits, Realm of Caring and the Co­ali­tion for Ac­cess Now, to pro­mote re­search and ad­voc­ate for le­gis­la­tion. What began as a grass­roots move­ment of par­ents all over the coun­try—com­mu­nic­at­ing to one an­oth­er via so­cial me­dia, trad­ing stor­ies and treat­ment op­tions—has made waves in na­tion­al polit­ics. In 2014 and 2015, 13 states passed laws to ex­pand ac­cess to CBD. Figi says 13 more state laws are be­ing draf­ted.

Mov­ing to Col­or­ado was not an op­tion for Schaef­fer. “We own a small busi­ness here in Wis­con­sin, it’s not mov­able,” she says. That’s when she joined up with Figi’s ad­vocacy to push for CBD le­gis­la­tion in her home state. 

She won. In April 2014, Wis­con­sin Gov­ernor Scott Walk­er signed a bill leg­al­iz­ing CBD oil, and Schaef­fer was told she might be able to get some CBD oil for Ly­dia by the com­ing fall. But the vic­tory was plagued by loss.

“My daugh­ter passed away on Moth­er’s Day last year,” Schaef­fer says. Ly­dia was sev­en years old. “We found her dead in her bed when we went in the morn­ing. The chal­lenge is get­ting this done ex­ped­i­tiously. And mak­ing people real­ize that in­di­vidu­als are dy­ing from epi­lepsy.”

As it stands, CBD is still il­leg­al un­der fed­er­al law. “[Marijuana] means all parts of the plant Can­nabis sativa L., wheth­er grow­ing or not,” the text of the Con­trolled Sub­stances Act states. Can­nabis is can­nabis: There is no ex­cep­tion for plants bred to have little to no THC.

In March, Rep. Scott Perry, a Re­pub­lic­an from Pennsylvania, in­tro­duced to Con­gress the “Char­lotte’s Web Med­ic­al Ac­cess Act of 2015,” which would ex­empt plants with less than .3 per­cent THC from the Con­trolled Sub­stances Act. Char­lotte’s Web would be­come a di­et­ary sup­ple­ment—like fish oil or echin­acea—reg­u­lated out­side the FDA. “We don’t want to spend an­oth­er 10, 15 years and hun­dreds of mil­lions of dol­lars [in FDA clin­ic­al drug tri­als] while chil­dren’s lives are be­ing shortened be­cause they can’t gain ac­cess,” Perry says. The bill has found bi­par­tis­an sup­port. Re­pub­lic­an Rep. Paul Ry­an and Demo­crat Rep. Chris Van Hol­len both are among the co­spon­sors.

When Perry pitches the bill to con­gres­sion­al col­leagues, he says, “I feel com­pelled to start out with the fact that [this bill] in no way fed­er­ally leg­al­izes marijuana.” He wants a nar­row fight, free stand­ing of the lar­ger polit­ic­al war over marijuana. The bill was first in­tro­duced in the last Con­gress, with the name “Char­lotte’s Web Med­ic­al Hemp Act of 2014.” This time, Perry in­ten­tion­ally left “hemp” out. “If people have an im­me­di­ate aver­sion [to hemp], that is ob­vi­ously a bar­ri­er to hav­ing an open-minded dis­cus­sion.”

Figi knows CBD is not a cure-all. She does not like us­ing the term “mir­acle,” and she does not think CBD can ab­so­lutely pre­vent tra­gedies like Schaef­fer’s. “It’s not a cure and it’s not work­ing for every­one,” she says. “It’s very dan­ger­ous to cre­ate false hope.” All she wants is for par­ents to have the op­tion to try: to see if the turn­around Char­lotte ex­per­i­enced can be rep­lic­ated.

“There is an ur­gency to this be­cause in­di­vidu­als are dy­ing,” Schaef­fer says. “I’m ap­proach­ing an­oth­er Moth­er’s Day with hor­rif­ic thoughts in mind. We don’t want any more in­di­vidu­als in my shoes.”

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