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?

Spider web
National Journal
Add to Briefcase
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.”


Welcome to National Journal!

You are currently accessing National Journal from IP access. Please login to access this feature. If you have any questions, please contact your Dedicated Advisor.