Child dies as challenge delays Charlotte's Web

As state lawmakers continue to struggle to implement the Compassionate Medical Cannabis Act of 2014 which would provide medical marijuana treatments to cancer and epilepsy patients, a new challenge to the law could delay implementation even further.

In the meantime, a 10-year-old Brevard boy has lost his life to a disorder the drugs could potentially treat.

Isaac Carew died March 4 after a battle with Alpers Disease, a rare neurodegenerative disease in which the sufferers usually don't survive beyond the first decade.

His parents, Ben and Emily, were part of a network of Florida parents with epileptic kids waiting on lawmakers to make Charlotte's Web, the non-euphoric strain of medical marijuana treatments, available for their kids.

Also in the group are the Moseleys, the Gulf Breeze family whose daughter RayAnn also suffers from intractable epilepsy. RayAnn became the face of the push to pass the medical marijuana bill last year. The Moseley's spokesperson Ryan Wiggins issued a statement on their behalf Friday morning.

"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."

That fight may prove a degree harder after Jacksonville attorney Ian Christensen this week filed a challenge in the state Division of Administrative Hearings to the department's proposed rule for carrying out the Compassionate Medical Cannabis Act.

The challenge was filed 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. The child, according to the challenge, would be a "qualified patient" under the law to receive the type of marijuana that is low in euphoria-inducing tetrahydrocannabinol, or THC, and high in cannabadiol, or CBD.

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.

On behalf of the Moseleys, Wiggins called the challenge disappointing and implored the state legislature to take action.

"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," Wiggins said. "It is disappointing that a mother who 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," she said.