Cannabis for Children with Intractable Epilepsy: Bypassing Big Pharma

10/30/2017 10:08 am ET Updated Oct 30, 2017

Doctors—and patients—have grown increasingly dependent on pharmaceutical manufacturers for guidance. In the case of cannabis this dependency has been oversold.

By EJ Sobo, PhD, and Allison Ray Benavides, LCSW

Children with intractable epilepsy have uncontrollable seizures that can be catastrophic, even deadly. Cannabis improves quality of life, often through the CBD or cannabidiol it contains. Yet, instead of educating themselves, and helping parents use this medicine in forms now available, physicians want parents to wait for a pharmaceutical version. Doctors stay dumb, and children continue to suffer.

This could soon change: a cannabis-based anti-seizure pharmaceutical nearly has Food and Drug Administration (FDA) approval. Cannabis-related education for providers will no doubt be part of the marketing plan. This is unexceptional: pharmaceutical salespeople have long provided US doctors ideas on what to prescribe.

Yet for some time now there hasn’t been a need to wait: while doctors’ ignorance about and resulting fear of cannabis discourages many parents, some pursue it anyhow. They read scientific literature, talk with other parents (e.g., via Facebook), and get help from pediatric cannabis pioneers—themselves mostly parents—who now make medicine for sale to those with state-qualified conditions. Products low in THC (the chemical behind ‘getting high’) are available to the public in all states.

Many self-educated parents view doctors’ insistence on waiting for the go-ahead from pharmaceutical corporations or ‘big pharma’ as cowardly, if not complicit. They urge doctors to communicate with those who have, all along, been willing to help and who have the experience-based knowledge to do so. This is not an us-versus-them position; it is simply a request that doctors take a more critical look at what should count as evidence, particularly when life is at stake and functional abilities at risk.

Pharmaceutical Preference

Recent research shows that most parents using or considering using cannabis for their children actually would prefer a pharmaceutical version. Americans like pharmaceuticals. Sales figures confirm this. Pharmaceutical drug quality is consistent, doses are precise, and products come backed by research and with doctors and pharmacists to advise.

Further, pharmaceuticals are convenient. This is crucial in regard to children with intractable epilepsy, who require a great deal of care and often have other disorders. Parents can feel exhausted and overwhelmed; and pursing cannabis can be marginalizing. Being able to get it at the drugstore in pharmaceutical form with other prescribed medications would, for many, make life easier and more ‘normal.’

The pharmaceutical model also is reinforced by our current tendency to view matters of everyday life through a risk calculus that highlights danger. Making cannabis oil at home and using artisanal products are seen as fraught with danger.

Counterpoints

In the research, some parents did worry that a corporate pharmacology cannabis formulation might not work for everyone. They also worried about unwanted additives and that pharmaceutical versions might contain only chemical isolates, forfeiting benefits that whole-plant medicines may have. Price was concerning too, although parents with pharmaceutical insurance could eventually benefit.

Parents who took a more critical stance did not want cannabis appropriated and citizens’ rights to grow cannabis or make their own medicines limited. They did not want artisanal medications marginalized, due in part to the enormous benefits they personally witnessed.

Benefits went beyond seizure control. Learning how to use cannabis pediatrically requires parents to reach into the community for education in a way that differs greatly from the individualizing mode of mainstream medicine. These parents celebrated the supportive social networks they had created around cannabis, which helped ease the heartache they endured.

These parents saw big pharma’s current efforts as too little too late. Physician ignorance saddened and enraged them. Rather than waiting on corporate pharmacology for marching orders, they argued, doctors should self-educate regarding—and research should not ignore—what parents and other grassroots citizen-scientists have already learned and created.

Changing the Cannabis Education Paradigm

We love prescriptions, but we also purchase lots of effective medicines without them, including surprisingly dangerous ones. We trust the general public’s ability to self-administer these wisely and safely. There is simply no evidence supporting the argument that cannabis cannot be similarly sold, particularly given the urgency of the situation.

Cannabis products can be difficult to navigate: consumers have a lot to learn about them and educated providers could help. Two areas ripe for provider education are dosing and drug-drug interactions. Certain drug levels can become elevated in the presence of CBD; parents in the study had learned to request extra lab tests to check this. Providers need to become aware of such things too so that they are better positioned to help educate newcomer parents as well as to authorize tests and stay alert themselves to potentially dangerous drug-drug interactions. But pharmaceutical representatives should not be their first or only teachers.

An over-the-counter cannabis market with numerous reliable options already exists; it will not disappear with the eventual arrival of a pharmaceutical version. Many lay-people have become experts in using the available medications. Beyond becoming willing to learn from individual parents’ experiences, doctors should look to reputable cannabis medicine-makers for information. Although different from what science terms evidence, such information brings valuable insights to the table—insights that, again in contrast to those coming down big pharma’s product pipeline, can be applied now.

As the stigma on cannabis recedes, parents of children with epilepsy, and other cannabis patients, will likely exercise increased self-determination as healthcare consumers. They will select medicines, pharmaceutical and artisanal, based on their own needs and values. Along with increased cannabis research and consumer protections, more broadly sourced provider education is essential to helping those affected make safe and healthy choices.

Allison Ray Benavides, LCSW, is a medical social worker in the field of death and dying. Her son achieved seizure control with cannabis in 2014. Ms Ray Benavides advocates for the safe, educated use of pediatric cannabis, and manages PediatricCannabisSupport.com.

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