Kaden Hartman, the 13-year-old denied life-saving treatment because he used CBD oil, is a fighter. And so is his mother. Kaden Hartman of Virginia Beach is 13-years-old and lives with Niemann-Pick disease, a condition known colloquially as Child’s Alzheimer’s. There are approximately 500 to 100 cases of diagnosed NPD today, making it extremely rare. Children with Niemann-Pick disease experience rapid physical and mental deterioration. Eventually, they’re faced with seizures and problems with mobility, eating, and communication. According to the National Niemann-Pick Disease Foundation, most children suffering from Child’s Alzheimer’s don’t live to age 20.
A hospital in Virginia has stopped treatment of a boy suffering from Niemann-Pick disease after his mother used CBD oil to help with his seizures, even though it is legal in the state.
Kaden Hartman has been denied life-saving medical treatment after his mother used legal CBD oil to help with his seizures. Unfortunately, it’s not the first time a child has been denied medical treatment after using CBD oil to treat the symptoms of an illness or the side-effects of pharmaceuticals. But, once again, there is a debate among medical professionals and the caregivers of people suffering from its use. Hartman is one of fewer than a thousand cases diagnosed with a rare disease — Niemann-Pick disease type C, or NPC, also called children’s Alzheimer’s disease.
The disease sees those children with the condition deteriorate, both physically and mentally, at a rapid pace. Symptoms include seizures, loss of mobility and problems with communication. Most people diagnosed with Niemann-Pick disease won’t live past the age of 20.
Hartman was diagnosed with the disease at 5. Since 2015, Hartman has been receiving experimental treatment at the Children’s Hospital of Richmond at Virginia Commonwealth University. The treatment, according to his mother, has been slowing down the progression of some of his symptoms.
The treatment means that twice a month Hartman has a spinal infusion of Cyclodextrin, which, while not approved by the FDA to treat illnesses, has been used as an experimental treatment for a handful of NPC patients. And while Cyclodextrin has had a positive effect on some of his symptoms, his seizures have become more frequent.
CBD Oil Stopped Hartman’s Seizures
After seeing her son have up to 20 seizures a day, Hartman decided to treat the symptoms with CBD oil – all under the supervision of his neurologists. Gov. Ralph Northam, who treated Hartman before he entered politics, prescribed CBD oil for the boy in 2015, the year CBD became legal in Virginia.
Not only did it reduce the number of seizures, it also meant Hartman avoided the negative side-effects that come with anti-seizure medication.
That all came to end when the family received a letter from the hospital treating Hartman, stating that he was being taken off the study — and Cyclodextrin — if he continued to use CBD oil.
“Your son is on CBD oil. He is terminated from the clinical trial. Don’t bother ever showing up again.”
A young boy is being denied the treatment that could prolong his life, all because of the use of a legal, natural supplement that is improving his quality of life. “I didn’t think it would be this hard,” his mother said. “I just want what’s best for my child.”
Neurologists who work with Niemann-Pick disease patients recommend CBD Oil. In addition to Kaden’s personal experience with CBD’s benefits, two of his neurologists recommended it. His primary neurologist of 8 years suggested that Kaden take CBD to cope with his seizures.
Dr. Ralph Northam, Kaden’s former pediatrician who is now the governor of Virginia, wrote Kaden a prescription for cannabidiol. Though Mrs. Hartman didn’t fill out this prescription at the time, it allowed Kaden access to CBD much more potent than the health store variety he later took.mDr. Rebecca Caffrey, a friend of the Hartman family, explains, “CBD is the drug of choice for treating seizures in NPC kids.” She cites another case of two young girls who suffer from Niemann-Pick disease and began taking CBD oil to minimize their seizures.
Not only did CBD help these girls—the daughters of Kathy Hartman’s friend Chris Hempel—but they are allowed to continue their other treatment, which is of the same nature as Kaden’s.
CBD doesn’t require FDA approval
Not only do Kaden and others with NPD benefit from CBD, and experts recommend it across the board, but Kaden’s clinical trial never forbade CBD.
The FDA categorizes Kaden’s treatment as an IND: Individual New Drug Investigation.
“He’s not part of a formal clinical trial. He’s a single patient under the compassionate use law,” Mrs. Hartman explains.
This means that Kaden’s treatment is more informal, and they don’t have to get FDA approval for CBD use.
According to Dr. Caffrey, “[Kaden] has received many meds not on the protocol, like steroids for the swelling in his fractured skull and pain meds during his recovery from that injury.”
Not only did doctors give Kaden medication without going through the FDA, but other patients with the same compassionate care drug trials for Niemann-Pick disease routinely take CBD.
Mrs. Hartman believes, “All they have to do is write a two-paragraph letter to the FDA saying FYI we put him on this medicine.”
Kaden’s doctor never even attempted to do so.