A year after passing Carly’s Law, Alabama still waits for the marijuana medicine they were promised

The night CNN aired the special called Weed by Dr. Sanjay Gupta the country fell in love with a little girl named Charlotte Figi, who had a severe form of epilepsy known as Dravet Syndrome. Charlotte began speaking and had a major reduction in her seizures after taking CBD, or cannabidiol, an extract of marijuana. Unlike THC, the psychoactive chemical in cannabis, CBD is non-psychoactive. According to Dr. Gupta’s report, CBD was effective at controlling Charlotte’s violent seizures with minimal intoxication, even where prescription medications had failed. Charlotte’s mother Paige found CBD oil in Colorado, where medical marijuana is legal. The strain of cannabis that worked for her, which was high in CBD and low in THC, became known as Charlotte’s Web.

Parents and caretakers all over the country sat up and took notice.

An unlikely medical marijuana activist

Dustin and Amy Chandler of Pelham, Alabama, were two of those parents. Their daughter Carly was diagnosed with CDLK5, a rare genetic disorder with no known cure. Carly is blind and suffers from developmental delays, as well as frequent and violent seizures that pharmaceutical medication cannot control. The Chandler’s wondered if CBD might help Carly.

Not the most likely advocate for cannabis use, Dustin Chandler was a Pelham police officer. But he was also a loving, desperate father who watched his child suffer every day of her life. In October 2013, Dustin went to meet with Governor Robert Bentley to discuss the use of CBD for the treatment of Carly’s seizures. He also started a Change.org petition, asking the Governor and other state lawmakers to support legislation which would allow the use of CBD oil to treat people who suffer from seizure disorders that pharmaceuticals could not control. People like Carly.

“It would not necessarily help Carly’s disorder and make it go away. It’s just the quality of life. It’s a treatment for the epilepsy and giving them a better quality of life,” told Al.com. “So many parents are struggling to push to at least give us the chance to try it, because there is no medicine out there that works on these seizures. She’s tried the heaviest of the heavy and they don’t work. Now there’s studies coming out saying this does help.”

So Dustin partnered with Republican state Rep. Mike Ball, a former state trooper himself, and House Bill 104, known as Carly’s Law, was born. The bill was co-sponsored by Democratic state Rep. Patricia Todd of Birmingham, while Senator Paul Sanford (R- Huntsville) sponsored the bill in the Senate. Dustin said at the time, “We’re really drafting legislation to address the issue of if we can help as many kids as we can, help now and get that passed, that’s the common sense of getting it done.”

Far from perfect

As it was originally written, Carly’s Law was far from perfect. There was a question of how to actually get the medicine to Alabama without breaking interstate drug trafficking laws. However it did offer protection from prosecution for those who might be in possession of the oil… which basically amounted to a medical marijuana necessity defense in court if arrested. It was a start.

On March 1, 2014, a number of medical marijuana activists attended the Carly’s Law Rally in Pelham to show their support for the bill. In attendance were parents pushing wheelchairs, special needs kids and caretakers, as well as the family members of those who had moved on to Colorado for medicine. The speeches were moving and enlightening.

Ten days later, on March 11, 2014, the Alabama Senate voted 34-0 in favor of Carly’s Law. Waiting on the House vote, support for the bill was visible and strong at the Statehouse. But after one week, they adjourned without the bill coming up for a vote. Tensions were high.

Politicians, as they tend to do, made a flawed bill even worse

Unknown to supporters and activists, House Speaker Mike Hubbard (R-Auburn) was working on changes to the bill. He other lawmakers worked to transform Carly’s Law into a research bill that would provide funding for the University of Alabama at Birmingham to study CBD oil.

The sponsors of Carly’s Law announced later in a press conference that they had partnered with researchers in the University of Alabama’s Department of Neurology to study CBD oil. The University would be responsible for dispensing medicine to individuals diagnosed with severe epilepsy and neurological disorders. The study was funded by a $1 million appropriation in the Education Trust Fund budget to UAB’s Department of Neurology.

On March 20, 2014 at 2 a.m. House Bill 104 unanimously passed the Alabama House of Representatives by a vote of 97-0. As promised, Gov. Robert Bentley signed the bill on April 1, 2014.

Not all it’s cracked up to be

Transforming Carly’s Law into a research bill had put the University of Alabama under Federal scrutiny, and many of the bill’s original supporters were unaware that there was going to be a long wait for federal approval. In order to move forward with trials, UAB would now have to receive approval from the Institutional Review Board, the Food and Drug Administration and the Drug Enforcement Administration before the first patient could even think about receiving treatment.

When parents and supporters learned of the delay they were disappointed yet remained hopeful. They waited by the phone for news, calling the University often and checking the Carly’s Law Facebook page for updates. Dustin Chandler told SouthCANN he hears from multiple people from all across the state on a weekly basis. “I wish I could answer all of their questions regarding the process but most of the time I can just offer support because I don’t have the answers.” he said. “I fully understand some of their frustration and wish it hasn’t taken so long. But the ones I have spoken to still keep the faith like we all have been doing since Carly’s Law inception.”

After several months the FDA and IRB both gave their approval for the program, but almost a year after the law was passed patients are waiting for the DEA to give the final green-light.

“I haven’t heard anything regarding the DEA,” Dustin said. “But I hope the DEA understands the entire state of Alabama has its eyes on them. I hope they don’t drop the ball like the FDA did. It is unfortunate the FDA delayed the study by a few months and it is equally as unfortunate the parents and people of Alabama had to get back into the fight just to get the FDA’s attention. We were hoping for and received FDA approval, but I feel it could have been done back in October. I hope the DEA expedites the process for the children and adults that are suffering in Alabama.”

“It’s unfortunate — to me, as a dad — that we’re being caught up in red tape,” Dustin said. “It’s my hope that one day, everyone, no matter their disorder will be able to access CBD Oil for treatment and as soon as possible. I think our federal government needs to listen to the people AND the medical community and reschedule marijuana to where it should be, Schedule II. As we all know, that would allow the research into using marijuana and some of its components to treat a wide array of disorders, cancers and diseases.”

He points out that neurologists Dr. David Standaert, who is directing the UAB Cannabidiol Program, and Dr. Orrin Devinsky at New York University have both expressed interest in studying the benefits of CBD oil. “If those neurologists want to research the benefits of the cannabis plant, why are we so hung up on not letting them do that and making them go through federal regulations? Why can’t we re-schedule it and get research going a lot faster? If we allow that to happen and it cures more disorders, that’s what we’re all for?”

Alabama Patients are Desperate for Medical Marijuana

Chris Butts, Executive Director of Alabama Medical Marijuana Coalition, has been pushing the issue of a medical marijuana program in Alabama for the past several years. “I’m excited that someone decided to take this up,” he said. “But I am disappointed that it was done with so many constraints on it. Of course we all want these kids to get treatment as soon as possible.”

Gena Dalton, of Madison, can see both sides of the issue, but is also eager to help her 2-year-old daughter Charlotte, who also has Dravet Syndrome, and many seizures a day. Dalton is a board member for the Epilepsy Foundation of Alabama and coordinator for North Alabama Epilepsy Awareness. Gena also helped found the Parents Coalition for Rescheduling Medical Cannabis, a grassroots organization who is planning a march on Washington in April 2015.

“I wear two hats on the issue,” Dalton said. “Number one, I am a mom to a child with catastrophic epilepsy. If it were up to me, she would have been cured years ago and watching a progressing decline is by far the hardest thing I have ever done in my life. From that perspective, I have been impatient. It was a kick in the gut when our Governor didn’t sign our bill the same day it was passed. Because of the delay in signing, and bill verbiage, there was a useless “waiting period” for no apparent reason. As the months passed, every day came more and more seizures. Now our families are in a position where we are having to wait on the DEA. How long is that going to take?”

“On the flip side, I work as a scientist. I know how long it can take for the process of “hey I have an idea” to finished product/study/research can take. I can completely understand why and how these types of things take time, but the Momma Bear in me wants to protect my daughter TODAY, not 12 months from now. People who do not live with the constant fear of death will tell me to be patient, I try, but what makes me a good mom is not being patient. So, while I understand, I will continue to be a squeaky wheel for the health and safety of my little girl.”

“Sharing what is working for some states and not others has been extremely helpful, ” Dalton says. “No state has a perfect law and even legal states like CO still have issues with pediatric access to safe and lab tested medications that are consistent and reliable. The successes of the more progressive states programs will set the stage for a successful program in Alabama. Alabama is known for it’s southern hospitality and compassionate culture, I have no doubt that once we can educate the masses about the true benefits of cannabis, the puzzle pieces will fall into place.”

When people tell her to just move, Dalton says it isn’t that simple. “Sadly, my husband and I got very comfortable with our two income security and it isn’t financially feasible for us to go to one income. In Alabama we have friends and family that are our support system. My mother keeps my daughter while I work and finding a daycare to tend to a child with special needs basically doesn’t exist. Moving means losing our support system with no care for my daughter since either my husband or myself would have to stay home and tend to her. We love Alabama, it is our home, and I love my little community who have been nothing but supportive of our family. We NEED that support just as much as we NEED to try better medication (Cannabis). All other prescription medications (except Valium) have failed my daughter.”

CBD-only laws have already failed

Across the South CBD bills are becoming very popular with lawmakers, but less so with activists and patients. Many critics say that CBD-only bills are actually hurting marijuana law reform by taking the movement backward. CBD bills limit the amounts of THC and CBD that a patient would legally be allowed to possess, which creates a problem since CBD works well for some and not for others.

It is the unreasonable fear of “getting high” that make these bills so popular and politically safe. Voting for a CBD-only bill can appear compassionate and proactive without showing any support for any other medical marijuana program that would include the whole plant. But the biggest problem with CBD-only legislation is that scientific research shows that CBD requires its counter-part – THC – in order to be effective. In other words, even though politicians tell you they have legalized medical marijuana, the truth is they have essentially decriminalized only one chemical from the marijuana plant (and only for a small number of patients), and its efficacy as a stand-alone treatment is questionable.

Eleven states now have CBD-only laws, and to date very few patients have been given access to the oil because it is still considered illegal federally. Sadly, children in several states have already died waiting for their government to give them access to medicine.

According to Chandler, Carly is doing well, but “still having hundreds of seizures per day. The big nasty tonic-clonics are usually at night. She’s been having a rough time lately with her sleeping and unfortunately, had to add another prescription to help with that, but everything is steady. She is a strong little girl.”

As far as the wait for his daughter’s medicine, Chandler says we are “way past due for a serious discussion and comprehensive look into the compassionate use for those who do not have time to wait on research. One life lost is too many. If a life can be saved or extended, shouldn’t that be what we ALL care about?”