Parents of 14-year-old Alabama girl with rare disorder demand medical cannabis access
Four years after Alabama passed the to provide medical cannabis access to patients with serious conditions, families are suing the for not establishing a patient registry as required by law.
Earlier this week, five parents of minor children who would greatly benefit from cannabis treatments filed a lawsuit against the commission, claiming it failed to meet its mandatory duty.
The Chandlers are one of the families involved in the complaint. They are extremely frustrated with the lack of progress and say they are losing hope.
For the Chandlers, every day centers around caring for their daughter Carly.
"Carly's got a disorder called CDKL5 deficiency disorder. It is a multifaceted disorder. It's a rare genetic disorder. It causes her to have intractable epilepsy, which is typically not controlled by conventional medicine," Dustin Chandler, Carly's father, said.
She's suffered from violent seizures since she was a baby, and as she continues to grow, managing them is getting harder.
"She's nonverbal. You know, she's still in diapers. She's 14, so she is 24-hour care," Chandler said.
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When the Compassion Act passed in 2021, the Chandlers hoped medical cannabis could be an additional treatment, if only they could access it. Since it passed, several lawsuits have been filed, challenging the way licenses are distributed.
"And the physicians I've talked to, you know, people that we're really close to, have said that yes, it's showing great promise and stopping them, even as a rescue med," Chandler said.
But four years later, the program still isn't available to patients. Now, the Chandlers are among five families also suing the state. They say the law that was passed still doesn't exist, and they want a judge to force the commission to act.
"And it's been four years too long and now it's time to really, you know, bring the focus back to the patient and my daughter and many like her around the state," Chandler said.
Director of the Alabama Medical Cannabis Commission John McMillan said everything is in place, and has been, but court challenges are the hold-up.
"It has been there for a good while and litigation has held all this up for many months, but yes, we do have a contract with a company called Tarleton Technology, right here in Alabama. We have had it since 22 or early 23," McMillan said.
McMillan said once the courts allow it, the process will move quickly.
"You go to the doctor, you get a recommendation, you're in the system that day, and then you're fixed," he said. "As soon as doctors are certified and start taking patients, it'll be a same-day deal."
However, Chandler said patients and doctors have had no guidance, and even if the commission was given the green light tomorrow, they wouldn't know how to get their daughter signed up.
"The physician we have has not gone through any type of process or know of any process. So how many months out does that take to get a card? Tell us how to do that now, where we will be prepared as patients for when there is product we can go in with our card how the law states that we can do that," Chandler said.
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The Chandlers say they just want access to something that might improve their daughter's quality of life.
"When Carly has a rough seizure where she is just convulsing nonstop for several minutes, it's your other kids involved, too. It's the stress that it puts on my oldest son, my youngest daughter, obviously Amy, my wife, me. The entire family is just stressed out, and that is what it's hard to explain to people," Chandler said.
McMillan expressed optimism about the program's future.
"I'm going to go out on a limb only to say, if we can just get through this litigation and get the investigative hearing process going, that we'll be pretty close by the end of the year to have something, have a program up and running," he said.
The commission says it's doing all it can, but it's ultimately up to the courts to clear the way. Until then, families like the Chandlers are still waiting and wondering "what if."
This is a developing story and will be updated as information becomes available. Stay updated on the latest stories with the 米兰体育 13 app. You can download it here.