Virginia Hospital Denies Dying 13-Year-Old Treatment Over CBD Use
By: Julia Granowicz
Twitter: All Things Cannabis (@allthingscanna) | Twitter or @allthingscanna
What would you do if you were faced with choosing between one life-saving treatment and another? That is the decision being forced Kathy Hartman, mother of Kaden Hartman, a 13-year-old boy with an extremely rare disease called Neimann-Pick disease type C (NPC). Also known as children’s Alzheimer’s disease, this condition causes physical and mental deterioration, with symptoms including seizures, loss of mobility and problems communicating, among other things.
Most children diagnosed with NPC don’t live past the age of 20, and Kaden was diagnosed at the age of 5. Since 2015, he has been receiving experimental treatment under a compassionate use law at the Children’s Hospital of Richmond at Virginia Commonwealth University (VCU). According to his mother the treatment, a twice-monthly spinal infusion of a drug called Cyclodextrin, has significantly improved his sons condition since.
“Kaden should not be here, for him to still be here, still be walking, still be talking, still be running around, playing video games, eating, swallowing, it just it doesn’t get any better than that,” Kathy told WAVY.com
While the Cyclodextrin treatment has improved most of his symptoms, Kaden was still suffering from up to 20 seizures daily. With the supervision of Hartman’s neurologist, Governor Ralph Northam, Kathy decided to treat her son with CBD oil. While Gov. Northam (who treated Hartman before entering politics) wrote him a recommendation for CBD in 2015 as soon as it became legal – but Mrs. Hartman has instead used a CBD hemp oil.
When he was using CBD oil, Kaden was no longer having seizures – helping to reduce the one last symptom that wasn’t being relieved through the Cyclodextrin treatments. However, he is once again suffering from seizures on a daily basis and has already had a skull fracture and a concussion as a result of seizures.
Unfortunately, VCU sent the Hartman’s a letter – and went on to call them – to inform them that Kaden was being dropped from the trial and would no longer receive treatment due to his use of CBD oil.
“Use of non-FDA approved medications, such as CBD, would result in termination of the study because the risks have not been evaluated,” the letter read.
However, according to Dr. Rebecca Caffrey, a friend of the Hartman family, CBD does not require FDA approval because the FDA categorizes Kaden’s treatment as an Individual New Drug Investigation. Since it is not a formal clinical trial, but rather a single patient under the compassionate use law’s in Virginia, there is no need for FDA approval to use CBD in conjunction with the current experimental treatment that is saving his life.
Without the Cyclodextrin treatments, there could be a rapid progression of symptoms that Kaden may not be able to come back from if he does not receive treatment in time. For a mother and child who were seeing such amazing results in such a tragic situation, this can only be described as a nightmare in full force.
“If he’s off of it, he will die, and as a mom I’m trying to do the best thing for my son.”
Right now, in hopes of getting Kaden back into the Cyclodextrin treatment, Kathy Hartman must watch her son suffer from seizures that were under once under control. Unless VCU changes their mind, the Hartman’s are being forced to choose one life-saving medication over another, if it’s not already too late for him to get back into treatment.