In fall 2013, when other parents were trading stories about the difficulties of balancing homework with little league practice and swimming lessons, I was in my garage, painstakingly measuring amounts of a Schedule 1 narcotic to extract medication for my son. Tinkering with lab equipment and solvents usually only found in chemistry labs, I was trying to purify compounds from cannabis — not to get high, but to save my son’s life.
My son Ben has suffered thousands of seizures in his short, six-year life. Treatment-resistant epilepsy in children is a cruel disease that can lead to significant cognitive, motor, and behavioral delays and, not surprisingly, death. More than one third of all childhood deaths are due to epilepsy. After exhausting FDA-approved treatment options, including a dozen different anti-seizure drugs, surgical implantation of a nerve stimulator, injections of high doses of steroids and even brain surgery removing half of his parietal lobe, he is finally experiencing some relief thanks to a drug regimen that includes a component in cannabis, cannabidiol (CBD).
My son has suffered severe brain damage as a result of years of seizures. It is excruciating to ask what Ben would be like today had he experienced relief earlier in life. We will never know the answer, and not because science has failed him; policies dictated by an inexplicable social phobia of cannabis have.
Last week, the National Institutes of Health (NIH) convened a research summit on the effects of cannabinoids on the brain. This meeting was the first open acknowledgement by a federal agency that there may be medical value to marijuana. Unfortunately, this “historic” meeting was a huge disappointment to those of us interested in improving the quality of life of patients suffering now. Instead of discussing how to advance our clinical understanding of the therapeutic value of cannabis in specific diseases, much of the conference focused on animal models, which are far too removed from human disease to inform clinical treatment. Much time was also given to the potential public health harm that cannabis poses. Where is the methodologically sound clinical data we need to treat people living with diseases right now? Doctors and policymakers alike have been calling for more research on cannabis for decades — why do we still not have it?
The snail’s pace at which clinical research on cannabis is proceeding is not meaningful for patients in distress right now. There is an overwhelming amount of evidence that components found in marijuana can provide significant relief from disease-related symptoms, such as nausea caused by chemotherapy, in addition to changing the course of life-threatening diseases, such as some specific cancers like glioblastoma.
As a mother, I am furious that the federal government has discouraged research into these potentially life-saving therapies for years by restricting clinical research. As a scientist, I decry the federal government for interfering with scientific freedom.
CBD is only one of many cannabinoids that we are just beginning to understand. Cannabis contains more than 80 cannabinoids and more than 400 other compounds. It’s highly likely the therapeutic potential of medical cannabis is greater than one single cannabinoid. But in order to find out, we need the ability to conduct research. Research must be permitted to progress unfettered, not just on a single cannabinoid, but on all the components of the entire plant.
While research gets off the ground, patients like Ben also need to have the ability to access regulated, standardized cannabis-derived preparations that meet the same manufacturing safety guidelines required of any other medication. I am not comfortable ordering an unregulated preparation of CBD from the internet to treat my child’s severe brain disease, but that’s the situation parents like me find ourselves in today.
To be absolutely clear, the debate can no longer be about whether to provide access. The majority of Americans already live in states where medical cannabis is legal. We must now focus on enacting thoughtful policies that will ensure access to safe preparations, allow for research and collect information to inform treatment. The U.S. government must do more than acknowledge the medical legitimacy of CBD and other cannabis compounds. It must make room for full scientific inquiry into standardization of the life-saving treatments many Americans already know exist and remove itself from the doctor-patient relationships it so often obstructs.
Now is the time for momentous changes in federal cannabis policy. Discussions of cannabis legalization inevitably involve political, social, and public health concerns, but clinical research should not be mired in political agendas; it should be a matter of scientific investigation. Patients, like my son Ben, don’t have time to wait.
Dr. Catherine Jacobson is a neuroscientist and the clinical research director of Tilray, a medical cannabis company licensed by the federal government of Canada. Tilray and Leafly are both subsidiaries of Privateer Holdings.