After the raid: For patients, worries that medical marijuana dispensaries will shut down

Oakland resident Sableu Cabildo was diagnosed at the end of 2011 with a kind of brain cancer known as an astrocytoma. It originated on the right side of her thalamus, the lobed mass under the cerebral cortex that acts like the brain’s switchboard, regulating sensory perception and motor functions. Because of the cancer, Cabildo has been steadily losing her short-term memory and her balance. She stutters sometimes, and to be on the safe side, doesn’t drive at night anymore.

To alleviate some of the symptoms of her cancer and the harsher side affects of her medications, Cabildo, 34, has a medical marijuana prescription. It’s helped to calm her mood swings and improve her diminished appetite. It also dulls the pain from the migraine headaches caused by her disease. It lets her sleep at night.

She has conscious seizures about once a month, each lasting around five minutes. The seizures make her feel like she’s floating above the world as it carries on around her in slow motion. She can control herself and it isn’t necessarily apparent to others when she’s seizing. But each episode feels like being hit in the head with a bat. “Not a painful feeling, but kind of a lost feeling, like I was in the wrong body,” she said. “I felt like my ears would close and my brain would shut off.”

The results of an MRI earlier this month weren’t promising. Her tumor is starting to grow, albeit slowly, on the left side of her brain. Her doctors have noticed that she isn’t as strong as she used to be. They estimate that she has between two and four years left to live.

Cabildo reduced her work schedule this month, from 40 hours a week Monday through Friday to eight hours a day each Tuesday and Thursday, and five hours a day Monday and Wednesday. She has Fridays off. Working leaves her exhausted and it’s getting harder to remember her daily tasks. Sometimes she’ll be working on a spreadsheet and forget what she’s doing. “The tumor is taking over,” she said.

Her friends and family, her “angels” as she calls them, have stood by her since the beginning. They drive her to the grocery store, to doctor’s appointments, and to Oakland’s Harborside Health Center, the country’s largest medical marijuana dispensary. Cabildo is one of nearly 100,000 patients there, who under state and city law can buy medical marijuana if they have a doctor’s recommendation and patient identification card.

Although any use of marijuana is still banned under federal law, medical marijuana has been legal in California since passage of the Compassionate Use Act in 1996. In addition to cancer, California doctors can prescribe it to alleviate symptoms for a variety of conditions, from multiple sclerosis and epilepsy to impotence, migraines and depression. The medical marijuana industry has been largely supported in Oakland, which allows up to eight licensed dispensaries—including Harborside—to operate within the city. Oakland was one of the first cities in the country to tax its cannabis business activity.

Cabildo’s treatment includes clinical interventions in addition to her marijuana use.  She gets infusions of Avastin every three weeks to starve her tumor, and regular MRIs and doctor’s visits every three months. She also takes Levetracetam—an anticonvulsant—one and a half pills, twice a day.

Cabildo was on radiation for six weeks following her diagnosis and started using medical marijuana about two months into treatment. A self-described “granola baby,” she tries to stick to a natural regimen as much as possible. “I didn’t grow up taking cough medicine, I didn’t take antibiotics until I was 13 or 14,” she said. “When I was little and I was sick, my mom would give me cloves of garlic to eat.”

Becoming a medical marijuana patient didn’t even cross her mind until her friends broached the subject after her diagnosis, and then when the pain from her radiation treatments became too severe. It wasn’t difficult to obtain a card; with doctor authorization, she went to the Patient ID Center in Oakland, which issues patient identification cards for medical marijuana users.

She uses four times a week on average, although she doesn’t prefer smoking marijuana. When Cabildo gets headaches, she takes “Dixie drops,” made of pure CBD, one of the three cannabinoids, or chemical components found within the marijuana plant—the others being THC and CBN. Unlike THC, the chemical that creates the feeling of being high, CBD is non-psychoactive. The drops make it easier to medicate in public, like when she’s at work. Unlike smoked marijuana, there’s no odor, and because the drops aren’t made with THC, there are no psychedelic side effects. “Maybe eventually down the road I’ll try THC,” she said. “I just need to save my life.”

The drops also help her appetite, which has been weakened by her other medications and migraines. Food just doesn’t taste the same anymore. It’s overwhelming sometimes, having to eat around her friends and family. She often feels full after just one or two bites. When she was first diagnosed with brain cancer, she weighed 188 pounds. She’s since dropped to 133 pounds and is steadily losing more. She drinks protein drinks but they don’t seem to be helping. It drains her bank account, she said, buying enough food to keep from dropping additional weight.

“I don’t want to smoke to get high; I want relief and the feeling of hunger and wanting to eat,” she said. “Yesterday I had a really bad headache, so I took the drops and twenty minutes later, the headache was gone. About two hours after that, I was so hungry, I felt like I couldn’t eat fast enough.”

Cabildo’s mother isn’t a huge proponent of her marijuana use. But Cabildo assures her that it helps her maintain as routine a life as she can manage, despite the effects of her cancer. “It actually helps me deal with it. It makes me a calmer person,” she said. “It makes me feel like everything is going to be OK.”

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For the first time in more than four decades of polling, most Americans favor legalizing marijuana, according to a March, 2013 survey by the Pew Research Center of more than 1,500 adults. Compared to 1969, when just 12 percent of the country favored legalization, support is steadily growing; this year 52 percent of those polled said they favored marijuana legalization. More than 60 percent of those surveyed also said that the federal government should not enforce federal laws against marijuana in states where it’s legal for medicinal or recreational use. Almost 80 percent of respondents said they believe that marijuana has valuable medicinal uses as well.

Eighteen states across the country now permit the use of medical marijuana. In January, Massachusetts became the most recent state to legalize, joining neighboring states Connecticut, Maine, Rhode Island and Vermont. This year Washington and Colorado also became the first states to decriminalize and regulate possession of an ounce or less of marijuana for medicinal and recreational use.  California also tried to legalize recreational marijuana with Proposition 19, the Regulate, Control and Tax Cannabis Act. While the initiative was largely supported by Oakland’s City Attorney Barbara Parker and her predecessor John Russo, it failed in 2010.

Possession and distribution of medical marijuana is still a federal offense, regardless of whether state laws allow the use or sale of marijuana for recreational or medicinal purposes. Because marijuana is federally classified as a Schedule I drug, dispensaries throughout the country are vulnerable to raids and government action. In Oakland, federal agents raided Oaksterdam University in April, 2012, and since July of that year, Harborside Health Center, which operates sites in Oakland and San Jose, has been embroiled in a legal battle to keep the federal government from shutting it down.

Yet many patient supporters maintain that marijuana is a valuable treatment option, and organizations like the Women’s Cancer Resource Center (WCRC) in Oakland offer periodic talks on medical marijuana to answer patient questions about obtaining prescriptions, how use a dispensary, and the legalities of medical marijuana in Oakland. “We offer it because many of the women we serve are either using medical marijuana or don’t know how to advocate for themselves or their physician,” said executive director Peggy McGuire.

Turnout at the sessions is strong, about 20 to 30 women per meeting. “We heard women in our support groups and workshops referring to their use or overheard women who were not using and didn’t know how to access,” McGuire said. “It’s a difficult time—there is conflict between the federal and local positions—but as it stands now, people are entitled to access to medically-prescribed cannabis.”

Amanda Reiman, California policy manager for the Drug Policy Alliance (DPA), which advocates for nationwide drug policy reform, leads the sessions at the WCRC. Reiman also served as director of research and patient services for the Berkeley Patients Group, a Berkeley-based dispensary, and as the first chairwoman of the Medical Cannabis Commission for the City of Berkeley. In addition to her current work with the DPA, she also lectures at the School of Social Welfare at UC Berkeley, where she teaches about drug and alcohol policy, substance abuse treatment, and sexuality and social work.

Reiman started studying medical cannabis patients and dispensaries in 2005, including patient services, issues with access, and medical cannabis rights. Many patients’ greatest concerns, she said, are familiarity and security with their dispensary; they want a relationship with their providers, and to feel welcomed and comfortable. “Let’s face it,” she said, “if you’ve been diagnosed with cancer, you have a lot on your plate. One of the number one things you’re worried about is ‘How I’m going to access my medicine?’”

From the start of her sessions at WCRC, Reiman said, many women were interested in learning more about becoming patients and questioned her about their options for ingestion, the usefulness of different products like edibles and salves, and the differences between strains. “For some of the patients, maybe they’ve used when they’re younger and they’ve stopped,” she said. “Maybe now they’re in their 50s and 60s and they get cancer, but they’re so overwhelmed by the industry that’s grown up around this plant, which wasn’t there in the 1960s and 1970s.”

“It used to be that if you wanted to obtain cannabis, you found someone who had cannabis,” she continued. “Maybe they just handed you a little brown bag or you had a two choices and you could sniff them to pick which one you wanted. Now, there’s a menu.”

Newcomers can be confused by the dozens of flowering strains available to patients, in varying types and doses, as well as the array of edible products, balms, lotions, salves and tinctures. “It’s kind of like you’ve been buying alcohol on the illicit market and all of the sudden, you went to Costco,” Reiman said. “You wouldn’t know where to start—it’s that kind of variety.”

Patient questions typically fall into two categories, Reiman said; questions about how and where to get a prescription and which products to use, and those from people she describes as experiencing “lingering effects of reefer madness,” who worry about using marijuana and the social stigmas against it. The process can feel intimidating, and the Internet can be a conflicting source of information. “Will it give me cancer? Will it make me addicted? There are still some of those old myths, especially among older patients who maybe grew up hearing that marijuana was a negative drug rather than it being a beneficial medicine,” Reiman said. “It’s been a medicine for 5,000 years. Its history as a medicine way outnumbers its history as an illicit drug.”

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Despite the legal uncertainties arising from the clash between state and federal law, many patients have come to depend on medical marijuana as a vital part of their treatment, and for them, access to state-sanctioned dispensaries is critical. “You have to fight for the right for people to have health and quality in their final days,” said Dale Sky Jones, head of Oaksterdam University, which was once affiliated with the dispensary Coffeeshop Blue Sky. “If you have chronic pain, do you want to live in pain every day for 50 years, or do you want to smoke a joint?”

Yet owners in Oakland’s dispensary system are all too familiar with federal threats to close them down. Federal agents raided Oaksterdam University’s 30,000 square foot campus last April. Today, although no charges have been filed in the wake of the raid, Oaksterdam operates only as a school—training those interested in entering cannabis-related businesses, or growing or cooking with cannabis, or learning their legal rights as patients and dispensary owners. It’s no longer connected to a dispensary.

The July following Oaksterdam’s federal raid, Melinda Haag, U.S. Attorney for the Northern District of California, sent paperwork to Harborside Health Center stating that the federal government planned to seize its two locations in San Jose and at 1840 Embarcadero in Oakland. The city of Oakland has joined the battle, responding to the forfeiture attempt by filing a complaint in United States District Court last October, which seeks to stop the federal government from seizing Harborside’s Oakland location, and to defend local ordinances allowing dispensaries to operate within the city. The dispensary remains open as the legal battle continues.

Nearby in Berkeley, the Berkeley Patients Group—the city’s largest dispensary—had been in business for over a decade before Haag warned the dispensary’s landlord in 2012 that the property would be seized if it remained in operation, owing to its alleged violation of federal law and its proximity to two schools. (Under a Berkeley ordinance, dispensaries cannot operate closer than 600 feet to any school.) The dispensary’s original location at 2747 San Pablo Avenue closed in May, following the raid on Oaksterdam. It reopened down the street on 2366 San Pablo Avenue that December.

Raids are also continuing statewide. Last week, Drug Enforcement Agency agents raided One on One Patient Association, a downtown San Diego dispensary. The dispensary is owned by Ken Cole, president of the United Patients’ Alliance, a trade association of medical marijuana distributers in the San Diego area. In conjunction with the raid, the Narcotics Task Force ran a parallel raid to seize plants in homes and businesses throughout San Diego’s North County. According to local news outlets, the assistant special agent in charge of the DEA task force said the additional raids targeted indoor growing operations linked to One on One Patient Association.

As long as federal and state laws conflict, there’s no guarantee how long a dispensary will remain in operation. When dispensaries close, because of federal pressure or otherwise, it can be disruptive to patients, Reiman said.  “These are people who are already dealing with chronic illnesses, they’re searching for community. It’s like going to pick up a prescription from the same Walgreens for 20 years and then all of the sudden it’s gone.”

As for Cabildo, she plans to continue using medical marijuana as part of her cancer treatment, and she remains optimistic about her diagnosis. She said it makes her work harder, to be an example to her friends and family to not ever give up the fight. Negativity, she said, is wasted energy. “Being angry is not going to make the cancer go away. If it did, of course I would be angry,” she said. “But in the end, I’m still going to have cancer. I’m still here and able to enjoy life.”

But the threat of Harborside closing weighs heavily on her mind—few other dispensaries in Oakland regularly stock her preferred form of CBD marijuana, she said. “To me, Harborside is a real medical clinic,” she said. “When I go to Harborside, they recognize me; the bud tenders care about you. With all I’m going through right now, that means a lot. This is not a street deal, this is for people who need it.”

Image: Oakland resident Sableu Cabildo (middle) threw a hair shaving party when she started losing her hair to radiation treatment for brain cancer. She is also a medical marijuana patient.
Photo courtesy of Sableu Cabildo.