Mo Barnhart knows what it is like to wait for answers, to see her child suffer, to cling to hope and try anything that might make it better. The mothers of sick children grow strong in many ways… They take little for granted, they learn fast, they love hard, and usually break down in private. Some of them become the voice of their children.
Along with Jacel Delgadillo, and Renee Petro, Barnhart helped found the group Cannamoms, a network of mothers who provide support for other parents, do public speaking and fight for common sense legislation. One of many reasons why Barnhart felt compelled to challenge Florida’s Compassionate Medical Cannabis Act of 2014, a bill that the state is struggling to implement. The Compassionate Medical Cannabis Act authorizes the use of Charlotte’s Web, a high CBD strain of cannabis that produces no high, for people with cancer and severe epilepsy. But the bill does not address key issues, like pricing and testing regulations.
In a statement on the Cannamom’s website, Barnhart writes, “In addition to the lack of minimum nursery qualifications, the DOH (Department of Health) also failed to set regulatory cost guidelines, failed to ensure patients could afford the medicine, failed to set minimum testing requirements for the medicine, and created no stipulations to ensure no pesticides or contaminants would be in the medicine. People have argued that these things could be perfected after these kids got their medicine. Firstly,
the quality and affordability of the medicine have to be ensured before these children have access. The ugly truth is, these flaws would likely have led to chaos which would have further delayed the medicine. Needless to say, when the statement was made that the rule would be submitted without any further modifications, I knew I had no choice but to step up to the plate, take the bullet, and challenge it.”
Attorney Ian Christensen filed a motion with the state of Florida challenging the Compassionate Medical Cannabis Act on behalf of Barnhart’s 4-year old daughter, Dahlia, who suffers seizures due to an inoperable brain tumor, and who would qualify for the medicine. The proposed regulations for Charlotte’s Web are inadequate to help suffering patients, Christensen contends. He also claims that the rule is invalid because it “fails to provide any assurances that there will be reasonable access to this medicine. Christensen takes issue with the selection process for “dispensing organizations,” which would grow, process and dispense cannabis. It also said that the proposed rule contains no minimum standards for those dispensing organizations.
“Throughout this process, we have waited patiently – believing that some major transformations were on the horizon.” Barnhart stated, “To be honest, the process confused many of us. The moms who have no nursing or other options for their critically-ill children were unable to attend meetings and hearings around the state. We believed our collective voice would be heard; but by the end of this process, we did not see that happen. Many of us have sent emails or made phone calls that went unanswered. The Florida Legislature Joint Administrative Procedures Committee submitted a 14-page letter of concerns and objections to the rule created for the implementation of this bill… and even that letter went almost entirely unaddressed!”
Fixing the bill might delay an already delayed process, according to a statement posted on The Florida Department of Health website said, “This legal action will unfortunately delay the department’s attempts to deliver this product, already authorized by the Florida Legislature, to Florida’s
children and patients who need it. The department will review the challenge immediately and act promptly to move the process forward.”
Patricia Nelson, director of the department’s Office of Compassionate Use, said in her prepared statement, “We have maintained an unprecedented, open process for developing this rule framework. The department will take every possible action to minimize the delay this rule challenge has c
reated in getting this product to Florida’s children who need it.”
Sen. Rob Bradley, sponsor of the Compassionate Medical Cannabis Act of 2014 said, “The latest challenge is probably the last straw for many in the legislature. I expect the Regulated Industries Committee will have a serious discussion very soon about what we need to get this substance in the hands of suffering families.”
According to Sen. Bradley, implementation of the Compassionate Medical Cannabis Act will be scheduled for a committee meeting in two or three weeks. “We passed a law that things were going to be in place January first that has not occurred. I don’t think it is fair to anyone to make any promises,” said Bradley. “What I can say is that I’m going to use my best efforts to get this medicine into their hands as soon as possible.”
Everyone’s best efforts will come too late for 10-year old Isaac Carew from Pensacola. He died on March 4, 2015 from with Alpers Disease, a rare neurodegenerative disease that most do not survive past their first decade of life. Carew joins the growing number of children who have died waiting on medicine.
A wait that would have not ended any time soon, Barnhart said, “Not only were they estimating an additional 10 month delay in access if everything had gone through as planned, there were still no minimum qualifications set forth for the organizations who would potentially be producing medicine for the most vulnerable of our citizens – our sick children! They wanted to use scorecards, and base the decision of who would be chosen to be the 5 dispensing organizations based on comparing one applicant to the next. This isn’t a basketball game where if both teams play crappy, one team still wins.”
She adds, “In the State of Florida, we have worked hard to see that these babies’ lives are taken seriously.”