On November 7, 2015, the Epilepsy Association of Calgary was pleased to welcome Dr. Luis Bello-Espinosa, Pediatric Neurologist and Epileptologist to share his knowledge on the topic of epilepsy and medical marijuana.
Dr. Bello was able to shed a great amount of light on this much talked about subject, and the almost seventy people in attendance were able to ask questions and learn more about this treatment that some people are calling a “miracle”.
Dr. Bello reviewed a number of studies (some very recent, others dating back to the 1970’s) that show that while treatment of certain types of epilepsy with certain strains of medical marijuana has been promising, there is still very much that is unknown and leaves patients and families of those living with epilepsy with more questions than answers.
Currently there are studies being done in the United States and Europe by a pharmaceutical company, GW Pharma. They are testing their new medication “Epidiolex” which is a compounded and purified form of cannabidiol (CBD) in specific forms of childhood onset epilepsies including Dravet, Lennox-Gastaut, Doose and Ohtahara syndromes. The testing group is quite small, often under 30 subjects in previous studies but results have been fairly promising with regards to a decrease in seizure activity and very few negative side effects.
You can read more about GW Pharma's research here
Epidiolex has not yet been approved as a medication in the United States by the Food & Drug Administration (FDA) and has not been tested or approved for use in Canada by Health Canada. There are currently no studies being conducted in Canada mostly due to a lack of funding. GW Pharma has not found it financially feasible to initiate a study in Canada as they are able to get the information they are seeking in the US and Europe without having to invest a great deal of money in to getting study approvals through Health Canada.
The case of Charlotte Figi, a child in Colorado living with Dravet syndrome who had a miraculous turnaround from near death to living a full and healthy life with nearly minimal seizures has caught the attention of the world over. Many families are looking to see if the turnaround that happened with Charlotte can happen with their own loved ones and Dr. Bello explained why the oil-forms of medical marijuana cannot be prescribed yet to Canadian children and adults. It simply comes down to the fact that CBD oil has not been properly and fully studied in Canada, leaving many more questions than answers and that is why Alberta Health Services has mandated that it not be a prescribed treatment at this point in time.
Adults can still access medical marijuana in leaf-form by getting a prescription from their family doctor or neurologist, but are also unable to access CBD oil by prescription. If you are interested in accessing medical marijuana for yourself, you need to talk with your family doctor or your neurologist to get the process of obtaining a license started. There are separate forms that each you and your doctor will need to complete and send to Health Canada. Once you’ve been approved by Health Canada, you will then need to register to receive product through a “licensed producer” of your choice. After that, product will be shipped in dried form straight to your home. There are limits to the amount of medical marijuana you can possess at any time (a maximum of 150 grams) and if asked by law enforcement to show proof of a prescription, you will need to ensure you have the documents that accompany your shipment with your client information.
To read more on the process of getting access to medical marijuana thorugh Health Canada, click here
As mentioned previously, there have been some cases where medical marijuana (CBD oil in particular) has been a huge benefit. There have been cases where people take the oil as a supplement in addition to their regular anti-epileptic medication and others where they will smoke, vaporize or ingest the dried form of medical marijuana. Some people and families reported seeing their loved ones “come back to life” – seeing a reduction in frequency and severity, with a few cases out of the Epidiolex trials reporting seizure freedom, reduction in post-ictal recovery time, improvement in learning, memory and focus; but at the same time others have seen no noticeable changes or benefits.
Unfortunately, doctors and researchers are not at a point where they can say why medical marijuana and CBD oils may work for some but not others. There simply has not been enough testing with large groups to be able to explain or provide additional information such as potential negative side effects, interactions with other medications, anti-epileptic or otherwise, dosage amounts as well as long term outcomes or side effects to children and adults.
If you are a parent planning to give medical marijuana or CBD oils to your child, or an adult receiving a medical marijuana prescription, the plea from doctors and neurologists is this: Be honest, upfront and open if you are pursuing and utilizing this treatment. There is much unknown and with the lack of studies being done in Canada, there are many “informal” studies being done by the patients and their doctors themselves. It is better for everyone for neurologists and doctors to be aware of other substances and compounds being given to a patient with epilepsy in order to manage any possible side effects.
For those parents who are still fearful or concerned about telling their child’s neurologist about the use of CBD oil, please be assured that unless you are being irresponsible, negligent or careless when it comes to giving a child CBD oils; there is no legal obligation for your neurologist to report you to any government body. Many doctors and neurologists are just as curious about medical marijuana in the treatment of epilepsy and for some; their hands have simply been tied by government. The more information that patients are able to provide the doctors will only serve to progress this as a credible treatment of epilepsy.
If you have questions about this topic, please consult with your family doctor or neurologist. If you are seriously considering giving medical marijuana a try to treat your own epilepsy, working together to find the best options for you will only serve to be helpful. It is hard to try to navigate the world of medical marijuana on your own and there are other sources of information and knowledge that your doctor will be able to access on your behalf.
We want to thank Dr. Bello-Espinosa for joining us and sharing his insights and knowledge on this topic with so many who attended. We also want to thank those who did attend this session for their patience and understanding (as we had a much larger turnout than expected, and quickly ran out of room!). We hope it was an informative session for all and are looking forward to hosting another session on this topic in the future.
Please give our office a call if you have any questions related to this topic at (403) 230-2764.