Time Is Still The Enemy, Says Mom Who Moved Mountains For Her Epileptic Daughter & Still Advocates For Millions Of CBD Users

If there's love that could move the Earth, it's that of a parent towards a child. And, as the Chinese proverb says, ‘To understand your parent's love, you must raise children yourself.' Today's story is about a mother who once moved mountains for her daughter and continues to do the same for other struggling parents with children who are ill.

Paige Figi is an executive director of Coalition for Access Now, a non-profit that educates the public and lawmakers about the health benefits of Cannabidiol, or CBD. Her journey into this world was born out of her journey of motherhood.

In 2020 her four-year-old daughter, Charlotte, born with a severe form of pediatric epilepsy called Dravet Syndrom, had failed all standard pharmaceutical options. She "was seizing 50 times a day, on life support, her prognosis looking worse by the day," Figi told Benzinga. "I turned to scientists studying Cannabidiol as a potential therapy for epilepsy. I searched for experts in Colorado to help create an extract under strict breeding, farming, extracting, and testing criteria…what we now call CBD."

It turned out that this non-intoxicating hemp extract, high in CBD and low in THC was extremely effective in treating Charlotte's epilepsy, allowing her to live a non-medical, pharmaceutical-free life.

Charlotte became famous worldwide after appearing in the 2013 CNN documentary hosted by Dr. Sanjay Gupta called "Weed."

This little girl inspired the creation of Epidiolex, the groundbreaking FDA-approved cannabinoid seizure medication. The first FDA-authorized CBD medicine Jazz Pharmaceuticals' JAZZ, Epidiolex was first approved for treating seizures connected to Lennox-Gastaut syndrome and Dravet syndrome. In 2022, Epidiolex was approved for treating seizures related to tuberous sclerosis complex.

Charlotte Figi was the catalyst, or as Gupta said she was "more than an individual, she was an entire movement."

Now, her story continues to help people around the world, thanks to her mother.

"Epilepsy parents in similar predicaments across the world heard our success story, wanted access and were faced with the predicament of lack of legal access," Figi said. And while CBD and hemp were federally illegal at the time, in Colorado they were legally available under state medical marijuana laws.

At the time, parents from outside the often made the difficult decision to relocate to Colorado and become residents.

"I started the Coalition for Access Now to fix antiquated state and federal laws to allow for CBD access and help get those families back home. The nonprofit was created out of the necessity to represent the American CBD consumer, educate the public, and work with lawmakers."

Courtesy photo

45 Million Users In A ‘Wild West’ CBD Market

When Donald Trump signed the Agriculture Improvement Act of 2018, which effectively legalized hemp and hemp-derived products on the federal level, things became easier for those in need of this God-given natural medicine. Unfortunately, though, not everything around hemp and CBD was regulated under the Farm Act 2018. Products derived from hemp were not regulated as food or supplements.

This has created "the ‘Wild West' of a blooming and unregulated CBD market," Figi explains. "Many products are untested, inaccurately labeled, contain heavy metals and other toxins due to irresponsible farming practices of a soil-cleansing plant, and it is the great unknown of what amount of milligrams CBD may be in a product."

She said that as many as 45 million Americans take CBD products daily, "and to represent them responsibly means we place consumer safety at the forefront. Childhood epilepsy is now the smallest percentage of CBD consumers and we speak for seniors, athletes, first responders, and our military veteran community. All of these groups and more see benefits from this alternative therapy and deserve to have products that are safe and accessible. "

Time Is The Enemy 

When she started the Coalition For Access Now, Figi recalls time as the enemy, "because of the nature and severity of untreatable, life-limiting, pediatric epilepsy." 

Fortunately, though, Congress got involved and crafted the first bills that carried Charlotte's name. While the first part of the effort – de-scheduling hemp and CBD was undertaken. The second part, which involves allowing the FDA to regulate it as a dietary supplement, is still in the works.

"The second part and last mile of a 14-year effort is what I am working on still to this day,” Figi says. “Congress must pass legislation giving the FDA authority to regulate CBD as a dietary supplement. Time is still the enemy." 

Simply Inaction 

In 2023, the Coalition for Access Now, U.S. Pain Foundation and Balanced Veterans Network highlighted CBD's wide-ranging benefits at a briefing hosted by a group of consumer advocates and policy experts in Washington, DC. 

"The responses to our briefings were exactly as predicted," Figi said. "These bills are logical, bipartisan, unopposed, and it is long past time Congress finish what was started. CBD needs federal dietary supplement regulation so that we have clarity in labeling through third-party testing. With 4,000 CBD brands at the height of the industry and none required to test and label, even the majority of the industry agrees that something must be done quickly. The problem is and has never been opposition, the problem is simply inaction."

Courtesy photo ( from left to right: Dr. Rayetta Henderson - senior managing scientist in the foods & consumer products practice at ToxStrategies; Kelly Fair - partner at Dentons' Cannabis and Health Care practices; Paige Figi; Jen Baxter  - ex executive director of Balanced Veteran Network; and Nicole Hemmenway - CEO of U.S. Pain Foundation).

Two Bills 

Coalition for Access Now is supporting two bills:

1) H.R. 1629 introduced in the House by Representative Morgan Griffith (R) and Representative Angie Craig (D), which would make hemp, cannabidiol derived from hemp, and any other ingredient derived from hemp lawful for use under the Federal Food, Drug, and Cosmetic Act as a dietary ingredient in a dietary supplement, and for other purposes.

2) S. 2451, or Hemp Access and Consumer Safety Act, sponsored by Senator Ron Wyden (D), which aims to allow for hemp-derived cannabidiol and hemp-derived cannabidiol-containing substances in dietary supplements and food. 

Anyone who wishes to join the organization and support its efforts can learn how by visiting the non-profit's official website. 

"While I tragically lost Charlotte in early 2020 to COVID, I celebrate her nine years living drug and hospital-free, getting to know her, out from under the fog of her seizures and medications. I still fight on for everyone in the U.S. to have her same safe access. This very worthwhile work is not finished and the responsible thing to do is to see it through to the end for the many millions of Americans that deserve better. In fact, if we don't act now to preserve access and push for federal regulation, this category is at risk, threatened from every angle," Figi concluded. 

Featured photo: Courtesy of Brennan Linsley / AP file via Wikimedia Commons and NBC News