Jennifer Collins, Patient Advocate of the Year
Jennifer Collins of Virginia may be the youngest recipient of ASA’s annual Patient Advocate of the Year Award, but at 18 she has already been an effective advocate for years.
Jennifer Collins of Virginia may be the youngest recipient of ASA’s annual Patient Advocate of the Year Award, but at 18 she has already been an effective advocate for years. The culmination of that advocacy came in February with the unanimous passage by both houses of the Virginia legislature of a broad expansion of the commonwealth’s medical cannabis program from only intractable epilepsy to any condition for which a physician recommends it.
The journey that brought Jennifer to that moment in the state capitol this February has been long and frightening and even involved leaving home and splitting up her family.
Diagnosed with epilepsy at age eight after an EEG revealed that the daily episodes of eye-fluttering and loss of hearing were “absence” or petit mal seizures, Jennifer did not initially need medication of any kind. Her doctor did not see signs of any brain damage from the seizures, and her parents were loath to risk the side effects, in any case.
But within three years, the first grand mal seizure occurred, and Jennifer started taking Depakote, a first-line seizure medication. That medication controlled the seizures, but at a very high price. Within six months of starting it, Jennifer had become violently aggressive, attacking her mother and other family members. All the doorknobs had to be removed from the house to keep her safe. Worse, Jennifer finally confided that she was suicidal and planning her death. She was 11 years old.
As soon as the Depakote was withdrawn, the serious seizures returned, so they tried combining it with antidepressants, then a cocktail of medications. In addition to the emotional problems the pharmaceutical medications caused, Jennifer was also experiencing cognitive decline. Once a top student, she was now in a self-contained classroom with an Individualized Educational Plan.
Jennifer’s mother, Beth, began desperately researching alternatives and soon learned about cannabis and CBD extracts. At first, Jennifer’s parents were skeptical, but her neurologist was blunt. He had nothing more to offer, and if it was his daughter, he’d try it.
It was 2013, two years before their home state of Virginia would allow any cannabis product for any condition, so the Collins family was faced with a wrenching decision: break the law to access products of unknown consistency and quality on the underground market where they lived or move somewhere that Jennifer could legally obtain the medicine that might help her. With an established, comfortable life in Virginia and no certainty about whether it would help, the Collins family decided to split up. Jennifer and her mother would move to Colorado Springs, while her father and sister remained.
At 13, Jennifer started a new school and a CBD extract. To the horror of everyone, the CBD made her seizures worse. After purging it from her system and getting a new baseline EEG, Jennifer started an extract of THCA, the non-psychoactive precursor of delta9-THC. The THCA worked wonders, immediately reducing her seizures by 90 percent. She has not had a grand mal episode since.
Jennifer and her mother had found a community of medical cannabis refugees in Colorado, but the separation from family and friends weighed heavily. As she started high school in Colorado Springs the next year, Jennifer penned a letter to Virginia lawmakers, pleading that she be allowed to come home with the only medicine that was proving safe and effective.
Later that year, they returned to Virginia, and Jennifer began testifying at state hearings on the first medical cannabis legislation, which was passed in 2015. Many lawmakers said afterward that it was her testimony that had overcome their opposition.
That was also the year that Jennifer and her family attended ASA’s national unity conference and met John Hudak of the Brookings Institution, who interviewed them for his 2016 essay, “The Medical Marijuana Mess.” That led to a visit from director George Burroughs and a film crew for a short video to accompany the essay. A year later, Brookings approached the family about doing a short documentary on Jennifer, The Life She Deserves, that premiered April 18 in Los Angeles with Jennifer and her mother in attendance (pictured at left).
Now a senior in high school in Virginia, Jennifer is slowly embracing her role as a very public advocate. “I just thought about all the people I know with epilepsy or any other disease that they can use cannabis oil for,” Jennifer says, when asked why she agreed to be the subject of a documentary. “I think of all the people I’ve met and all the people who I’ve grown to be a family with.”
“It’s not really a decision,” she says.
Jennifer will receive ASA’s Patient Advocate of the Year Award at a reception and dinner at the Omni Shoreham Hotel, May 24, during the National Unity Conference
This profile was originally published in the May 2018 ASA Activist Newsletter
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