As the news of the positive outcomes for some children with uncontrollable epilepsy who have been given a marijuana strain rich in cannabidiol (CBD) – the major non-psychoactive ingredient in marijuana – has spread, desperate parents of children with epilepsy have been clamoring for more information and a chance for their children to try the treatment.
Despite the fear that CBD-rich marijuana extracts can increase the risk of serious psychiatric disorders and long-term cognitive problems, we believe that the serious long- term effects that accompany the use of anti-epileptic drugs and a lifetime of intractable seizures cannot be ignored. The positive results that some people with epilepsy have been seeing from CBD-rich marijuana extracts are giving so many parents what they have been lacking for so long – hope.
Many people with severe epilepsy have tried a myriad of mind-numbing medications, brain surgeries, invasively implanted electrical stimulation devices, diets and alternative therapies, with little to no relief of their symptoms. While there may be some harmful effects from these CBD-rich marijuana extracts, they must be weighed against the very real dangers and challenges a constantly seizing child faces every day – a child who has no other treatments left to try.
Scientists and physicians have been quick to warn of the dangers of the marijuana extract because CBD use in people with epilepsy has yet to be clinically evaluated, due in part to the tight restriction the FDA and DEA have placed on marijuana and its compounds. It is currently classified as a Schedule 1 drug – the strictest level of regulation for a controlled substance. (see sidebar)
At CURE, we believe that there must be more research done on marijuana rich in CBD. At the present time, regulatory hurdles make it difficult for researchers to gain access to marijuana rich in CBD, but it is not impossible. There is no debate that the hoops researchers must jump through to obtain access to marijuana, or any chemical found in it, are hindering scientific advancement, and CURE is committed to helping researchers overcome these obstacles to advance research in this important area.
CURE recognizes that CBD and/or medical marijuana are not an answer for all children with epilepsy. Much more needs to be done to find treatments and a cure for all forms of epilepsy, which affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these. But parents and researchers are cautiously optimistic that this may be a promising new treatment on the horizon for some people. In fact, in true scientific spirit, scientists would no doubt desire to test not only pure CBD, but also high CBD/low THC cannabis, pure THC and other types of medical marijuana in epilepsy in order to clearly define the efficacy of these and other combinations on seizure control and the genesis of epilepsy.
Unfortunately, time is not on the side of many of these children with unrelenting seizures. Of course parents are going to do anything they can to help their children, even face the unknown, because the effects of long term, uncontrolled seizures are known – continued regression, intellectual disability, and even death. Safety and efficacy studies will take years to complete, and rightly so, but until then, compassionate use should be made available to the families suffering from severe, intractable epilepsy.