Last week, the FDA did something it had never done before: For the first time, it approved a cannabis-derived drug. This drug, called Epidiolex, contains highly purified cannabidiol (CBD), a chemical found naturally in cannabis.

The FDA has approved Epidiolex as treatment for two rare – but extremely severe – forms of childhood epilepsy, Lennox-Gastaut and Dravet syndromes. Both syndromes cause daily mixed seizures that can trigger physical or intellectual problems, and can eventually be fatal. Until now, Dravet syndrome has had no treatment options at all; Epidiolex is the first hope that many parents are being given to help control their child’s disorder.

In general, CBD and other components of marijuana are Schedule 1 controlled substances, viewed as having no practical medical uses, as well as a high abuse potential attached to severe safety concerns. This medication, however, has undergone three randomized, placebo-controlled studies involving over 500 patients, which have found it to be extremely effective in controlling these seizure disorders. Furthermore, Epidiolex contains only trace amounts of THC, the psychoactive element in marijuana.

Although fewer than 45,000 people in the US are afflicted with these syndromes, many medical marijuana advocates hope that doctors will begin to prescribe Expidiolex to treat other types of epilepsy as well.

The news about the FDA approval is sadly personal to me. I am grateful for the FDA’s decision, but my appreciation is tinged with loss.

The Journey With No End

The darkest journey that I could ever imagine began the day that I was given a new life without one of my children. We lost our daughter, Erin, over 10 years ago.  Along with our own grief, we were faced with an added challenge – the need to help my son cope with the loss of his beloved sister. 

The reason for her death is unknown and, we suspect, will never be known.  She was beginning her freshman year at a small, liberal arts college in Indiana.  She went to bed on a Sunday night and never woke up.  An autopsy was performed by the State Pathologist, Dr. Corr.  Dr. Corr said he was unable to determine the cause of Erin’s death.  At that point he recommended sending her serology to the CDC in Atlanta with the hope that they would develop new markers over time.  After ten years they destroyed her serology. Ultimately, they were unable to bring us closure.  Their best guess is that she might have suffered from an undetected seizure disorder.

A Legacy of Hope

My wife and I have always wondered whether Cannabidiol may have potentially affected Erin and prevented the seizure that took her life.  In my work, I take great pride in selling PPE to make sure that cannabis workers stay safe on the job, as well as to make sure that doctors can treat patients of all kinds safely. Nothing will bring Erin back, I know that, but I feel like I do own my small part in supporting the medical cannabis industry and the medical industry as a whole.

I blogged earlier about a May 2017 study published in the New England Journal of Medicine, which showed the success that medical cannabis can have in treating seizures in patients with Dravet syndrome.  In this stage-3 double-blind clinical trial, researchers had found that treatment with Cannabidiol (CBD) oil decreased the number of seizures that patients experienced each month by 39%, compared to only 13% for placebo-treated patients.  The treatment was accompanied by only minor side effects, including diarrhea and drowsiness.  While these side effects caused some discomfort, they were much less disturbing than either seizures themselves or than the side effects of alternative seizure treatments. 

When I heard the news of that study, I was filled with hope. With the new FDA approval, that hope has grown. Hope that other parents will not have to suffer the loss that we did. Hope that other parents will be spared from outliving their children. Hope that with time, researchers will find a true cure that will transform the lives of those who lives with seizure disorders – and the lives of their families as well.