Medical cannabis paved the way for legalization in California. Now patients feel left behind

by CalMatters, CalMatters Network
August 1, 2023

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Turn off Highway 99 in rural Elverta, drive five miles down the road and you’ll find a dusty lot crammed with cars on this scorching Friday evening. Behind the wooden fence, for a $10 entry fee, awaits a gathering akin to a block party crossed with a high-potency farmers market.

Alongside shirtless young men displaying jars of weed and decorative bongs, there are tacos and smoothies for sale. A woman in cannabis leaf-patterned shorts peruses the merchandise, while another with a severe black bob offers dab hits near the front. The DJ occasionally interrupts his mix of throwback hip-hop tunes (do you enjoy Coolio’s “Fantastic Voyage”?) to sell tickets for a raffle raising money for one vendor’s comatose employee.

Next to his booth, a table gives out free cannabis for veterans, who don’t have to pay to get into the event. Neither do patients with a doctor’s recommendation, like Dannie, a barber who was shot three times in his left arm and smokes cannabis to manage pain often inflamed by cutting hair.

Dannie, who agreed to be identified only by his first name, said he carries a medical recommendation because it’s safer should he ever get stopped by the police. But he still prefers buying weed at these clandestine pop-ups, where the products are more potent than at a dispensary.

“I’d rather spend my $30 on something that lasts,” he said.

This is just one of four unlicensed cannabis “seshes” in the Sacramento area that Bette Braden will host this week, as she does every week. The events started eight years ago for medical marijuana patients in an era of looser regulations, before California legalized recreational sales.

Since 2016, when voters approved Proposition 64, the initiative that authorized a commercial cannabis market in the state, Braden has come to view her seshes as both a business opportunity and an act of protest. Like many longtime advocates, she believes all weed use has a medical purpose, and considers it immoral that high taxes and a lack of dispensaries have made it inaccessible to many patients.

“The laws are so hideous,” Braden said, as she supervised from a camp chair near the entrance. “I used to be an activist. Now I’ve gone over to the underground.”

‘No one really cares about the medical side’

Frustration runs deep among medical cannabis patients and advocates who — by persuading voters to pass Proposition 215 in 1996 — paved the way for legal weed in California, but now feel left behind in a post-Proposition 64 era. In a profit-centered system focused on recreational sales, they argue there is little consideration for patients and their unique needs.

Collectives that once provided cannabis and community largely dissolved nearly five years ago, as California transitioned to a new regulatory framework based around licensed growers and retailers. Dispensaries, which are still prohibited in many parts of the state by local rules, have not widely embraced a replacement program that allows them to donate medical marijuana to patients who cannot afford to buy it. Medical identification cards, which can cost several hundred dollars to renew annually, confer few tangible benefits.

“No one really cares about the medical side, and that’s a mistake, because that’s where the value is,” said Richard Miller, who has promoted patients’ rights at the state Capitol for nearly two decades as a member of the American Alliance for Medical Cannabis and Americans for Safe Access. “I’ve been feeling over the past year like my work is a failure.”

The shift to treating medical marijuana users more like customers is especially tough for older patients with limited incomes and those with chronic conditions who need a large amount of cannabis for treatment. While California physicians can recommend cannabis for conditions including arthritis, glaucoma, migraines and seizures, most health insurance plans do not cover medical marijuana because it remains illegal at the federal level.

So some cost-conscious patients seek other ways of getting their supply, such as the underground seshes sprouting up around the state. That further bolsters an illicit market that California has struggled to bring under control and alarms advocates who want patients to have high-quality, safe medicine.

“There are some things in this world that should not have a f—ing price tag. And feeling good when you’re sick is f—ing one of them,” said Bonnie Metcalf, who lives in Sacramento County and suffers from sarcoidosis, a disease of the immune system that fills her body with lumps of inflamed cells called granulomas.

With an $1,100 monthly disability payment her only income, Metcalf said she cannot afford dispensary prices and relies on friends and Braden’s pop-ups for cannabis.

“It ain’t funny no more. My life is being messed with,” she said. “I should not have to continue to do this, to have to, you know, search out ways of finding the only medicine that has ever helped me in a way that I can still have a value to my life.”

‘It’s nothing but pain’

Metcalf’s body is snap, crackle, popping as she rolls into the living room in her motorized wheelchair for breakfast. An excruciating tingle runs from her neck and shoulders down through her hips and legs, she said, like a limb that has fallen asleep. It’s a dull, aching, don’t-fricking-talk-to-me kind of feeling, the same agony she wakes up to every day “until I get some pot in me.”

“As soon as I hit this reality, it’s nothing but pain,” Metcalf said. “It’s the first thing I think about. Because how can it not be?”

Metcalf does not like the side effects she experienced with pharmaceuticals — she took a steroid for her lungs that she said gave her diabetes — so she primarily sticks to cannabis and meditation to treat her sarcoidosis.

“It’s very strange, because there’s a point you get to where you don’t give a f— that you have pain. You’re so euphoric,” she said. “People would say, ‘Oh, you’re just doing it to get high.’ Well, yeah, dude, I would rather be in a euphoric state of mind than, you know, I can’t get comfortable. You can’t eat. Your muscles are constantly spasming. I’m on hot water bottles. I mean, it’s ridiculous.”

Cannabis has been part of Metcalf’s life for decades: Now 61, she said she first smoked weed at the age of 8, when an older teen gave her a joint at the park, and became an activist for cannabis access as a teenager.

While living in San Francisco in the 1980s, she worked with cancer and HIV/AIDS patients, Metcalf said, advocating for them to be able to use cannabis in medical settings. She collected signatures for the initiative that legalized medical marijuana and, after it passed in 1996, moved home to Yuba County, where she opened her own cooperative. Metcalf said she would drive a bus of patients down to San Francisco twice a month so they could see a doctor and get their paperwork in order.

That ended after 11 years, when Metcalf became too disabled to run the collective any longer. Despite her activism, however, she now refuses to get a doctor’s recommendation or a medical card or shop at dispensaries. She’s furious at how Proposition 64 commercialized cannabis in California, prioritizing getting high over medication and pushing aside longtime activists, growers and mom-and-pop businesses with expensive licenses and regulations.

“The system that exists is bulls–t,” she said. “These rich people are paying more for packaging and branding than they are worried about medicine for people. They don’t care. It’s not a medicine to them. It’s just another money-making scheme like beer or cigarettes.”

After eating a sausage scramble with green onions, Metcalf follows a meditative routine to help her mind vibrate above the pain. For her daily sacraments, she burns a bay leaf, a bundle of sage and a stick of palo santo, waving them around her body and each door in the house. She takes off her shoes and sits in the backyard for a few minutes, sticking her bare feet into the dirt to ground.

Finally, it’s time to medicate. Metcalf said she can no longer smoke weed because of the granulomas in her lungs. Instead, she takes two daily doses of FECO, a highly-concentrated cannabis extract — one in the morning to relax her body and one in the evening to help her sleep.

Back in her room, Metcalf turns on a playlist of affirmations by the musician Toni Jones and says a silent prayer (“May all beings live in peace, harmony, love and bliss”). Then she dips a fork into her jar of FECO and puts a dab of the oil on her tongue. She spits a chunk back into the jar, then bites another piece off the fork, until she estimates that she has half a gram.

The sensation starts in her head. She can feel her blood pressure calm. Her eyes relax and she sees the world in a whole different way. Everything is sparkly.

“It’s like a rain. It just starts raining,” she said, as the relief slowly washed down her body, loosening her joints before arriving, finally, at her feet.

“As long as my mind is high, I can control the body,” she said. “I can choose to disconnect from the pain. I can choose to put it in the background.

‘Our whole system fell apart’

Though it was the first state in the country to legalize medical marijuana with Proposition 215, California has always had a fraught relationship with it.

The Compassionate Use Act allowed people with a valid doctor’s recommendation, as well as their caregivers, to cultivate cannabis for their personal medical use — opening the door for collectives where patients unable to grow their own medicine could pool their resources to pay “caregivers” to do it for them. Compassionate care programs offered weed to the sickest and poorest patients for minimal or no cost.

But federal pressure from the “War on Drugs” remained, and the state was reluctant to jump into regulating medical cannabis until 2015, largely leaving the task to local jurisdictions. Writing recommendations became a lucrative business for some unscrupulous physicians, while illicit operators took advantage of the enforcement gaps to open hundreds of what were functionally retail dispensaries, enhancing skepticism about the legitimacy of the medical marijuana system.

That changed in 2019, after the passage of Proposition 64, when California began requiring collectives to get licensed like a commercial dispensary. Unable to complete the expensive and complex process, many shut down. More than 60% of cities and counties in the state still ban cannabis retailers, even for medical use, though starting in January, they can no longer prohibit medical cannabis delivery.

“Overnight, our whole system fell apart,” said Valerie Corral, founder of the groundbreaking cooperative Wo/Men’s Alliance for Medical Marijuana in Santa Cruz. “They were so busy counting tax dollars that they put us all out of business.”

Corral received a license, but she sold it after it became clear opening and operating a dispensary would cost hundreds of thousands of dollars that her donation-based organization did not have. Now she grows cannabis and works with local dispensaries to donate it for free to patients — the result of a 2019 law that, after a multiyear effort, established a replacement to California’s traditional compassion programs.

Leona Powell, a former member of Corral’s collective who smokes weed daily to deal with lingering pain from a 1978 airplane crash, said she misses volunteering in the garden and connecting with other patients at weekly meetings, where they would share information and potluck dinners. Living primarily on Social Security payments, the 75-year-old Powell said she relies on donated cannabis from a local dispensary, because she otherwise cannot afford the price of a standard eighth of an ounce, which typically costs $40 or more plus tax.

“That’s only a couple of joints. That’s two days’ worth. Now what?” she said. “I don’t have that kind of money.”

Efforts to formalize the medical marijuana system in California also lagged. In 2003, the state established a medical identification card for patients, mainly as a way to defuse interactions with law enforcement, but made it voluntary. Few people applied for one, perhaps afraid to register themselves with the government — though some activists did as a political statement.

At its peak, in the 2009-10 fiscal year, counties issued 12,659 annual medical cards, according to data from the state Department of Public Health. Surveys at the time estimated hundreds of thousands, if not more than a million, medical cannabis patients in California. By last year, the number of medical cards dropped to just 3,218, among the lowest on record. 

Advocates say there is little reason to get a card, which carries an annual fee of as much as $100, on top of the cost of the doctor’s recommendation. With the card, patients are exempted from the state sales tax on their cannabis but not other state and local taxes, so they would need to spend hundreds of dollars per month at a dispensary to realize any savings. Californians can also get medical cards before they turn 21, when it is legal to buy weed for recreational use, and cardholders can purchase more cannabis per day.

“There’s a tendency to be dismissive of cannabis users” among the medical establishment, which is then reflected in policy, said William Dolphin, a University of Redlands lecturer who researches and writes about medical cannabis. “We’ve seen across the country a desire to wash their hands of it.”

The state Department of Cannabis Control points to extensive testing and labeling requirements in the licensed market as a major benefit for patients, ensuring that Californians with potentially compromised immune systems are not using products tainted with hair, rat feces, heavy metals, illegal pesticides or mold.

In May, the department awarded UCLA two grants to study medical cannabis use in California, including what conditions patients are treating, what products they prefer and how they are accessing them.

“If they’re turning to the unlicensed market, we want to understand why they’re doing that so we can craft policies to bring them into the licensed market,” said Devin Gray, a policy analyst with the department’s policy and research division.

‘We sell products to stay alive’

Even dispensaries and other organizations dedicated to the philanthropic tradition of compassionate care are struggling amid a broader industry downturn.

Kimberly Cargile owns A Therapeutic Alternative, which opened in a converted house near downtown Sacramento in 2009 to serve medical marijuana patients. These days, it also has a license for recreational sales — and one of the only compassion programs in town, allowing low-income patients to receive cannabis for free.

Cargile said many dispensaries are reluctant to establish these programs because of the expense. Hers, serving an estimated 200 people, runs between $1,000 and $2,000 per month for staff time to manage applications, intake stock and consult with patients.

That’s a bigger sacrifice than it used to be. After a statewide surge in cannabis sales during the early days of the coronavirus pandemic, Cargile said sales dropped by $3 million, or 20%, at her dispensary over the past two years. She’s been looking for savings everywhere she can to stay afloat, though the compassion program will remain a priority for as long as she can manage.

“We’re doing everything we can to stay true to our mission,” she said. She doesn’t want a cancer patient to feel forced to turn to “dirty” products on the illicit market.

“The whole entire reason I’ve dedicated my life to patients’ rights is because I want them to have access to high-quality, lab-tested products to treat their symptoms,” Cargile said.

Jude Thilman, who runs Dragonfly Wellness Center in Fort Bragg, said it is financially impossible for cannabis businesses to focus solely on medical use anymore. That has meant dispensaries providing less education for consumers, manufacturers of therapeutic products shutting down because they cannot adapt to new rules and a heritage slowly disappearing. Of the seven medicine makers that Thilman personally knew before Proposition 64, she said five have gone under and the other two are operating illegally. 

“We sell products to stay alive,” Thilman said, “and then we sell products to help people.”

Medical donations through compassion programs increased over the first three years of the 2019 law, according to data collected by the state Department of Cannabis Control, though the reach remains relatively small. Last year, 440 dispensaries reported donating cannabis products to patients, fewer than a quarter of California’s nearly 2,000 licensed retailers.

Retailers reported 13,278 donations in 2020, 41,775 donations in 2021 and 47,371 donations in 2022. Each donation is counted separately, so the number of patients served is likely much lower.

Advocates said they initially benefited from an oversaturated commercial market, with businesses donating more products that they could not sell. But in recent months, as a dramatic price drop caught up to growers and decimated cannabis communities, supply has been scarcer.

“What’s been heartbreaking is that extinction of all the small farmers who have been our most loyal donors,” said Ryan Miller, who founded Compassionate Veterans, until recently known as Operation EVAC, a program that combines peer support sessions with free cannabis to prevent suicides. “The corporations are not stepping up, to be honest.”

After his pioneering San Francisco collective had to stop handing out cannabis to patients in 2019, Joe Airone, known as Sweetleaf Joe, turned his attention to logistics for compassion programs, helping find and deliver donations. He said his efforts connected more than 3,000 patients with 1,600 pounds of free medical cannabis last year — but without more support, such as tax write-offs, for participating businesses, securing donations is getting more difficult.

“All of our partners are taking a financial hit to do this,” he said. “There’s no incentive to do this. Zero.”

‘How much are you really helping people?’

In spite of the triple-digit heat, Metcalf was among some 400 people who attended the underground marketplace in Elverta that Friday evening. After visiting with Braden, she stopped by a booth for The Sisters Edibles, where she sometimes buys gummies.

Metcalf eyed the table stacked with tubs of colorful CBD-infused bears and worms, packaged by the generous handful, available for $10 each or three for $25. It was a fraction of the cost of what she could get at a dispensary, where a tin with 10 doses would be $20 plus tax.

“If you limit it, how much are you really helping people?” said the owner, Jen, who said she started taking cannabis three years ago to treat her migraines and moved into manufacturing her own products to supplement her veteran disability payments. She declined to share her last name out of privacy concerns. “I have so many people who come up to me and say, ‘I can get out of bed now.’”

Metcalf continued on to find some weed for her caretaker. At another small booth, she held brown mason jars to her nose, inhaling the scents of dried cannabis flowers. Dank. Like a cheese.

“That has a nice little sweet kickback smell,” she said. “I’ll take a half.”

With only two $20 bills, Metcalf was $10 short of the price for half an ounce. The vendor, who asked to withhold his name so as not to jeopardize applications he has submitted for cannabis delivery and manufacturing licenses, waved it off.

Touched by his generosity, Metcalf asked for his number. She knew a lot of people who might want to order from him.

“Do you have a medical card?” he asked. He said he didn’t charge patients delivery fees.

Metcalf, a self-proclaimed outlaw, shrugged at the idea and threw up her middle fingers.

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