Child dies while state wrangles with Charlotte’s Web rules

funeral

On March 4, a 10-year-old boy died. Isaac had been battling severe seizures for years. His parents, Ben and Emily Carew, were part of the grassroots effort that got Charlotte’s web legalized in hopes it would help their son deal with intractable epilepsy. Unfortunately the Florida Department of Health failed to get the rules for the special strain of marijuana established in time for Issac to ever use it.

The latest set of DOH rules has been published and were close to being activated. However, those rules were challenged yesterday, which will place even more young lives at risk.

The News Service of Florida reported that Jacksonville attorney Ian Christensen filed the challenge on behalf of 4-year-old Dahlia Barnhart, who the document says has an inoperable brain tumor, and it alleges that the department did not follow the law in drawing up the proposed rule.

In part, the challenge takes issue with the way the department proposes selecting five “dispensing organizations,” which would grow, process and dispense the cannabis. It said the proposed rule lacks minimum standards for the dispensing organizations and does not provide assurances to patients about statewide access to the drugs.

“Overall, the proposed rule fails to provide any objective methods to determine whether an eligible (dispensing organization) applicant is superior at growing low-THC cannabis or filling out a lengthy application,” the challenge says. “This ‘red-tape’ ensures only the most politically connected, not the best qualified applicant, are approved.”

The Department of Health defended the proposed rule during a hearing early this month. But the challenge presents at least a temporary obstacle and comes after Administrative Law Judge W. David Watkins in November rejected the department’s first attempt at a rule to carry out the marijuana law.

In other words, the attorney’s protest of ‘red tape’ will add even more delays to a law that was supposed to be enacted by Jan. 1.

Locally, Peyton and Holley Moseley have been fighting to make Charlotte’s Web available for their daughter RayAnn, who also suffers from intractable epilepsy. Holley served on the last DOH panel that came up with the rules that the Jacksonville attorney challenged.

Their spokesperson, Ryan Wiggins, issued the following statement this morning:

“The Moseleys are heartsick to learn of the challenge to the Charlotte’s Web rule. Following the last hearing, they felt confident that all of the stakeholders in the rulemaking process were happy and ready to move forward.

“It is disappointing that a mother who is using cannabis illegally and has not been involved in the rulemaking process, would block the access to Charlotte’s Web for thousands of families who are trying to go about getting the life-saving product for their children the right way.

“How many other children will lose their lives because of this challenge? Florida families cannot wait any longer for access to Charlotte’s Web and we implore the legislature to intervene at this point.

“Our hearts, thoughts and prayers are with the Carews. Their son’s death will not be in vain. We will not stop fighting for these families until Charlotte’s Web is readily available.”

When I interviewed State Senator Don Gaetz for Pensacola Speaks and Inweekly, he warned what might happen if a child died waiting for Charlotte’s Web:

“If we can’t get this good law that we passed last year implemented, if kids suffer, and they are, if kids die, God forbid, then what’s going to happen is there will be an irresistible push to just legalize marijuana for any reason in Florida, and I think that use is a jackhammer, when what we needed was a tack hammer.”

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Ryan Wiggins will be on Pensacola Speaks this afternoon to talk about this issue. Pensacola Speaks airs weekdays from 5-6 p.m. on News Talk 1370 WCOA. Call in @ 850-478-3116. You can listen online on their website or download their App from Apple or Google Play.

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