By the time Pete Frates tried medical marijuana, he and his family felt as if they had run out of options for treating his anxiety.
The Boston College graduate, diagnosed with ALS years earlier, was already seeing top psychiatrists and therapists at Massachusetts General Hospital. He had tried every anxiety drug made available to him. All his family wanted was something — anything — that would ease the anxiety Frates felt as his diagnosis left him trapped inside his own body.
“Pete was always super on edge before we started to use marijuana, like anything could be a trigger for him,” said his wife, Julie Frates. “You know, if his hands weren’t moved correctly, or something wasn’t done the right way, and he’s not able to communicate with us exactly what it is he needs. All of those things were just constantly a battle for us.”
Then they tried medical marijuana, and “honestly, it was night and day,” she said. “If Pete can take the edge off with marijuana, that was like a win for the day.”
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects a person’s motor function and muscle movement. But for many patients, their cognitive brain function is left intact, making them completely aware of their regression but increasingly unable to communicate about it.
That was the case for Frates, who drew national attention when he helped popularize the Ice Bucket Challenge to raise ALS awareness and money for research.
“At one point, Pete told his dad it was like being buried alive — having ALS — because your brain’s intact but you lose all your functions,” said Pete’s mother, Nancy. “It’s a pretty scary place to be.”
Now, nearly nine months after his death, Frates’s family is speaking out about the relief he felt using medical marijuana, in the hope that other people battling ALS can benefit.
When Frates died in December at just 34, he had been relying on medical marijuana for several years, using it to help with muscle stiffness, cramping, and, above all else, anxiety.
He tweeted about it more than a dozen times, writing in September 2016 that he had tried every painkiller “in the book. weed is the best one.” In 2018, he tweeted out Youtube videos for people trying to make their own cannabis products.
But his path to finding the right configuration of medical marijuana products for his illness was anything but easy.
When they first started experimenting with marijuana, shortly after Frates was put on a ventilator in 2015, his care team would buy cannabis plants and create their own tincture, an alcohol-based cannabis extract they delivered through his feeding tube. In later years, they experimented with making a salve, too, to rub on his legs to help with muscle tightness.
The difficult part was figuring out what ratio of THC and CBD to use. THC, tetrahydrocannabinol, is a psychoactive compound of marijuana, the one traditionally known for giving people a high, while CBD, cannabidiol, can have some of the same benefits for the body, but doesn’t generally have the same impairing effects.
“It was hard to navigate if you didn’t have a lot of resources and people looking out for you,” Julie Frates said.
When two fellow Boston College alumni working in cannabis heard about Frates’s journey to finding marijuana, they decided to help. Joe Lusardi, CEO of the cannabis company Curaleaf, and Patrik Jonsson, the company’s Massachusetts president, worked to manufacture a product similar to the one Frates’s care team was making.
The goal: Find something that works and spread the news to other ALS patients and their families.
They started by taking the product he was already using to a third-party lab to figure out the ratio of THC to CBD that worked for him. They hoped to develop three different tinctures for Frates with varying levels of the two cannabis compounds.
Curaleaf had just given Frates its first batch when his health took a turn for the worse in late 2019, Jonsson said.
“We know it works, and that was one of the attractive things with this relationship is Pete knows it works, too,” Jonsson said. “And he’s allowed to say it.”
For Jonsson, that’s the frustrating part about the federal status of cannabis: While patients like Frates can tout the benefits of medical marijuana, cannabis companies are limited in what they’re allowed to say. Marijuana remains federally illegal, and cannabis has been approved by the Food and Drug Administration only for use in a drug that treats rare, severe forms of epilepsy.
Hemp — a cannabis plant similar to marijuana, but with lower levels of THC — is federally legal, but cannabis companies have been warned by the FDA not to make unapproved medical claims about the benefits of any cannabis plant. As recently as last summer, Curaleaf was asked to remove social media posts and articles in which it claimed its CBD products could treat cancer, Alzheimer’s disease, chronic pain, and anxiety.
But Frates didn’t have the same limitations. He could share his story widely, and he wanted other ALS patients to give cannabis a try.
“It helped us so much that it almost seemed like we had this magic potion that other people couldn’t get to,” Julie Frates said.
Marijuana’s federal illegality makes research funding opportunities incredibly limited, said Dr. Gregory T. Carter, a clinical professor at Washington State University’s Elson S. Floyd College of Medicine. Most studies on the use of cannabis for ALS have been done only in mice, Carter said, and most cannabis studies in humans are “small, imperfectly controlled” and use smoke-able cannabis, which is not recommended for ALS patients.
Carter was among several authors of a 2010 paper that pushed for clinical trials on cannabis for ALS, hypothesizing that cannabis may significantly slow the progression of the disease, “potentially extending life expectancy and substantially reducing the overall burden of the disease.”
Dr. Merit Cudkowicz, director of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, emphasized that doing research on ways to help patients deal with the disease — in addition to working toward finding a cure — is vitally important.
“There’s things you can do that can help people’s lives right now while you’re trying to find the cure that stops the disease progression,” Cudkowicz said.
In the months since Frates’s death, his family and the Curaleaf team have continued to push his legacy forward, bringing awareness to the ALS community about what cannabis can do. In early August, more than 200 Curaleaf employees from seven locations participated in the Ice Bucket Challenge.
It’s a legacy Nancy Frates hopes to carry on as she continues supporting other families battling ALS.
“Here’s a good Catholic girl, BC-educated, mom of three kids, who hoped they’d never smoke weed in their whole lives, and I’m here to tell you that people need to educate themselves to the benefits of this,” she said. “Make a decision, but at least be open to the opportunity and the option of this.”