It’s hard to imagine that Idaho officials could make a bad situation worse for children with intractable epilepsy, but that’s exactly what’s about to happen. Next legislative session, Idaho lawmakers will be asked to put general taxpayer money toward a program that allows 25 children to test an experimental pharmaceutical product.
This might seem like the ultimate Hobson’s choice: pay for a questionable program to keep treating children with an experimental drug, or stop the funding and force ailing kids to do without. In reality, that is a false dilemma: legislators can end the funding -- and simply keep the laws hands off parents who want to treat their children.
In 2015, lawmakers considered a bill that would allow children, who suffered from a rare form of epilepsy, to use a drug derived from a marijuana plant to treat their severe seizures. For reasons medical science can’t yet explain, the cannabidiol oil (CBD) in marijuana has already helped many control, or stop, their seizures.
Some lawmakers and the Otter administration protested the likelihood that a marijuana-derived product would be legalized in Idaho. But treatment supporters understood, though the oil comes from a controversial plant, you can’t get high from it. In fact, a person could consume gallons of cannabidiol oil and never feel any deleterious effects. THC in cannabis produces a high. CBD does not. CBD does, however, help stop epilepsy seizures.
The Legislature passed the bill, and Gov. Butch Otter vetoed it. He then signed an executive order that allowed the Idaho Department of Health and Welfare to support clinical trials of an FDA-approved pharmaceutical, which contained CBD, to help treat these same youngsters. Under the trials, just 25 kids out of the estimated 1,500 at risk of a fatal seizure would get in.
In January, the Department of Health and Welfare will ask lawmakers to increase its budget by $128,000 to pay for the trials. Right now, the project is being funded from existing department revenues. The agency contends that without additional money, the program will not continue and 25 kids will be vulnerable because of the demise of the state-funded clinical trial. You can just imagine the kinds of handwringing that will come next.
The answer here isn’t hard: Don’t fund the program. Shut down the drug trials. Never before can I recall state lawmakers being asked to fund clinical drug trials. We don’t do it for cancer. We don’t do it for HIV. We don’t do it for glaucoma or kidney disease or ingrown toenails. It’s not function of state government to do any of that. Taxpayers shouldn’t be compelled to pay for pharmaceutical companies’ tests. Moreover, the state certainly isn’t planning to fund projects to see whether non-pharmaceutical CBD alternatives like Charlotte’s Web have benefits similar to GW Pharamceuticals’ Epidiolex, which is the sole drug being studied in Idaho.
I’ve previously highlighted that, last winter, parents of children with intractable epilepsy merely asked the Idaho state government to be left alone. They wanted certainty that they wouldn’t be arrested for possessing non-euphoria-inducing CBD oil intended for treatment of a painful, potentially deadly ailment. The parents who approached state lawmakers and the governor to legalize CBD oil only wanted to be given a chance to help their kids without the watchful eye of government. Almost unimaginably, they find themselves today even more at the mercy of the government than they were before. The win-win solution is simple: cut trial program funding and legalize CBD oil for the treatment of intractable epilepsy.