Taming the ‘Wild West’ of CBD


Monica Weldon looks at the history of medicinal CBD, its current usages in the USA, and why robust scientific research on its efficacy need to be conducted in order to ensure the safety of rare disease patients – many of them children – who are using CBD products for their conditions. This piece was written with the input of Christian Rubio, Leslie Baldwin Ruthven, Candace Lerman Esq. and Tracy Salazar PhD.


The many issues related to the possible benefits of medicinal marijuana and CBD products are complex from both a medical and legal standpoint

For many years, debate has raged about the health benefits of marijuana, CBD products derived from marijuana, medical use, legalization, and safety. The many issues related to the possible benefits of medicinal marijuana and CBD products are complex from both a medical and legal standpoint. Today, we are faced with the question of…where do we start?


The History of Medicinal CBD

The first recorded use case of medicinal cannabis occurred around 2727 BC when Emperor Sheng Neng of China used a cannabis-based tea to help with a variety of health ailments that included poor memory, malaria, and even gout (1). As time passed and modern western medicine began to blossom with the discovery of antibiotics and the treatment of fatal disease with vaccines, CBD was, in the background, also making its way through. A team from Illinois University isolated CBD for the first time in the 1940s, uncovering that there were active compounds in the cannabis plant that did not contain the psychoactive qualities commonly associated with cannabis (2). It was then noticed then CBD also had medicinal benefits (3).

In the 1960s during the Vietnam War a counter-cultural movement arose which glamorized the use of recreational marijuana. This set into motion the government’s campaign for War on Drugs in the 1970s classifying marijuana as a scheduled 1 substance through the passage of the Controlled Substances Act. This law made it difficult for scientists, doctors, and any other persons to obtain cannabis for research or medical use within the United States.

The Act established various “schedules” that drugs and substances were placed in, varying according to potential benefits, the potential for abuse and more, with Schedule 1 as the most restrictive (4).


Time Stood Still

In the 1980s and ’90s CBD started to gain more traction for pain-relieving qualities that were independent of the psychoactive and negative effects associated and documented with THC usage. This paved the way for one pharmaceutical company, the UK-based GW Pharma, to begin testing the plant and its chemical properties. They uncovered, through their studies, various benefits such as lowered pain levels, fewer seizures in epileptic patients and lower levels of anxiety in those prone to it. This spawned families of chronically ill children to access these products to provide relief for their loved ones. These families began a movement that opened up clinical trials in the US for a CBD product, expanded the use of medicinal cannabis use in certain states, and ultimately led to the passing of the new Farm bill in December of 2018, which made CBD derived from industrial hemp legal on a federal level (5).


The Beginning of the CBD Wild West

As the landscape of CBD changes, so does the stigma and the popularity of using it. There are seemingly many benefits to its use, therefore the question becomes: “how do we move forward keeping the patients’ safety first, creating a path towards scientific discovery and aiding in creating guidelines?”


So Many Questions

Imagine being told there is no FDA-approved drug for your condition. Picture watching your child suffer from a rare genetic disorder that physicians barely understand, marked by seizures, severe mood disorders, chronic pain and an inability to communicate any of their discomforts verbally. Put yourself in the shoes of a patient, parent, or caregiver who is desperate for help alleviating their child’s challenges, or even just understanding what’s wrong. Now insert CBD – with all its confusing descriptions, products, dosages and marketing – and then create an environment of ambiguity around how something in this emerging “Wild West” industry can help. Generally, you will find people within these groups focusing on the same concerns surrounding safety, efficacy, drug interactions, product integrity, and protecting vulnerable populations who are interested in the potential benefits of CBD.


What makes a patient population “vulnerable?”

As a patient organization, like many pediatric rare disease advocacy organizations, we are particularly sensitive to new and emerging therapies that can help our children

Our population, SYNGAP1 patients, are especially vulnerable because they may not have the ability to effectively communicate due to intellectual disability or sensory processing challenges. Our patient population also tends to have an abnormally high pain threshold. These types of problems interfere with how they process their environment and how they may express what they are feeling inside of their bodies. These core symptoms alone make studying and understanding the effects of potential new treatments difficult to study and benchmark for efficacy and if we get to that point, dosages. Thus, how any new treatment could affect them on a physical and emotional level needs very careful consideration.

As a patient organization, like many pediatric rare disease advocacy organizations, we are particularly sensitive to new and emerging therapies that can help our children. Patients and their families look to us for support services and trusted educational materials on potential treatments, especially as we work closely with researchers to develop targeted therapies for SYNGAP1. Because we have no approved targeted therapy for our children, we are focused in the short term on repurposing drugs already on the market for other diagnosed conditions where symptoms overlap, while continuing to collect valuable feedback from parents looking at natural medicine to mitigate SYNGAP1 symptoms. CBD comes up in conversations all the time, and our greatest challenge as an organization is how to address it. Ultimately, we have identified a few key concerns that we would like to see tackled.


The Emotional and Mental Toll

When it comes to safety, efficacy, product integrity, and drug interactions, further CBD research will answer many of our questions. We need to better understand how CBD impacts the human body before we can start analyzing how it impacts SYNGAP patients. In addition, our patient community has expressed concerns about appropriate dosing, potential interactions with pharmaceuticals, and where to purchase products free of harsh chemicals and pesticides. In addition, we support regulations on standards for the labelling of CBD products so patients and caregivers can easily understand what they are consuming and compare labels for different products.

Our patient community has expressed concerns about appropriate dosing, potential interactions with pharmaceuticals, and where to purchase products free of harsh chemicals and pesticide

We want to protect patients and their caregivers, a very vulnerable population, who are desperate for treatments. They must be shielded from predators and opportunists in the consumer products space looking to capitalize on CBD’s popularity by peddling sub-standard or fake products. We need to know exactly what we are consuming, especially if we are feeding it to children. We need to feel confident that the products we use are held to the highest safety standards.


What about the Data?

There is very little published research data that reflects the potential long-term effects of CBD. Positive effects have been reported anecdotally and through individual case studies, however, there is very limited measurable data regarding the clinical effects of CBD, except for its use in specific types of pediatric epilepsy. It would be ideal to have studies that included a variety of specific patient populations.

One example of the further research data needed relates to the current collection of pediatric EEG’s and the use of CBD. While the use of FDA approved anti-seizure medications is well documented, what happens when you utilize a CBD product in combination with a standard anti-seizure medication? The question becomes, which chemical is working, how, why and if the EEG does show improvement, is it the combination of drugs? Also, if CBD is working, what is the proper dosage, standard of care, short and/or long-term benefits and possible side effects?


The Role of Advocacy Organizations

Advocacy organizations have no baseline measures to go by. Currently, our hands are tied both in the advocacy and the research worlds. Resources gathering critical data are limited due to funding restrictions, a paucity of research data and many unanswered, lingering questions about how the mechanisms in CBD chemicals and chemical combinations work. When a caregiver reaches out looking for answers to try and help their loved ones, we are unable to provide the information or assistance needed that will guide them to credible help. We are left with telling caregivers to follow their physician’s advice and hope for the best. Advocacy organizations, like Bridge the Gap – SYNGAP Education and Research Foundation, are safe havens for patients living with chronic and sometimes fatal diseases. We depend on guidance from both our scientific advisory board and government regulators in order to provide the best and most credible information to the patients and families we serve. It is our goal to provide compassionate guidance and current information about research, treatment and available services to help families and patients have an improved quality of life.

The scientific community, at this time, cannot give the definitive answers, so urgently needed by many, regarding the safety and efficacy of marijuana and CBD use for medical purposes. Physicians and researchers are restricted from giving sound advice because of the lack of research and they do not want to be held liable for the consequences of recommending the use of an unregulated substance.


Where do we go from here?

Advocacy organization leaders walk a delicate, emotionally charged line of doing whatever we can to reduce the emotional and physical toll of our children’s condition on them and their care providers. Due to the growing prevalence of CBD usage in the United States and the differences in how states govern their own regulatory measures, now is the right time to consider de-scheduling marijuana. This would allow funding, at a federal level, to be available for robust, scientific research studies. Studies are needed to ensure that we begin to have answers about the legitimate medical benefits of CBD. There are many patients that need viable treatments to improve medical conditions and their quality of life. These patients and their families deserve to understand the benefits and risks of all available treatments…including CBD. Unfortunately, many currently producing CBD are not in the game to make people healthy. The lure of money and the financial benefit is a strong motivator for some to get involved in the production of CBD products. While CBD products continue to be produced, without necessary safeguards in place, we continue putting our most vulnerable and loved population, our children, at risk.



1 – Cannabis in Chinese Medicine: Are Some Traditional Indications Referenced in Ancient Literature Related to Cannabinoids? E. Joseph Brand and Zhongzhen Zhao* https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5345167/

2 – Structure of Cannabidiol, a Product Isolated from the Marihuana of Minnesota Wild Hemp. IBY ROGERA DAMSM, ADISONH UNT, A ND J. H. CLARK^ http://chemistry.mdma.ch/hiveboard/rhodium/pdf/cannabidiol.structure.pdf

3 – http://antiquecannabisbook.com/

4 – Title 21 United States Code (USC) Controlled Substances Act https://www.deadiversion.usdoj.gov/21cfr/21usc/811.htm

5 – Agriculture Improvement Act of 2018 https://www.agriculture.senate.gov/download/farm-bill/agriculture-improvement-act-of-2018

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