SANTA CRUZ – Kaia was 11 months old when she began seizing. The episodes quickly became more frequent and severe, and doctor’s eventually diagnosed the infant with a rare genetic disorder called Dravet Syndrome.
But despite a cocktail of prescribed medications, her condition continued to worsen, according to her mother, Marina Bleich. Her daughter began seizing multiple times a day with each episode lasting almost a half hour.
“She became temporarily paralyzed,” Bleich said. “Her whole left side of her body would go limp. She couldn’t walk. She would be in a coma state for three days in a row.”
Dravet Syndrome, which affects fewer than 1 in 15,000 children, proves fatal for more than 20 percent of sufferers before age 20. There is no known cure. And those who survive the seizures are almost always left debilitated, with trouble walking, speaking and learning among other side effects.
Kaia was prescribed a number of medications, including clobazam, but none seemed to work – leaving her suffering not only from the seizures, but severe side effects, according to Bleich.
“Kaia was a vegetable when she was on all those medications,” she said. The infant went “code blue” four times, needing to be airlifted for resuscitation and treatment. Bleich and her husband were left in a state of despair, fearing the unthinkable had become the inevitable.
“After the fourth time you see your kid go code blue, you get desperate,” Bleich said. “You’re willing to try anything and everything. That’s when I put my foot down and said enough is enough.”
Then the Bleichs stumbled across a documentary on the Discovery Channel that showed father Jason Davis’s success treating his son’s seizures with a non-psychoactive compound found in cannabis called cannabidiol, or CBD.
To the Bleichs, it was the lifeline they were looking for.
They got in touch with Davis and found out about a cannabis co-op not far north of their Pacific Grove home oriented around patients with terminal and chronic conditions: the Santa Cruz-based Wo/men’s Alliance for Medical Marijuana.
Now 8 years old, Kaia is off all synthetic medications. Her seizures have fallen from multiple times daily to no more than once per week. Where they used to last longer than 20 minutes, they now last less than a minute.
“She is one of the few Dravet children who is thriving,” Bleich said.
She credits the success to the cannabis oil Kaia takes three times per day – a treatment that has proved so successful for the young girl, it’s been prescribed by Kaia’s UC San Francisco neurologist.
Insurance won’t cover the cannabis oil because of Kaia’s age and the fact that cannabis continues to be federally illegal, but that’s not uncommon for WAMM’s members and the co-op runs on a pay-what-you-can basis.
Or at least it did, until what is widely credited as being the oldest cannabis co-op in the nation shut its doors on Jan. 1.
WAMM gifted the Bleichs almost a year’s supply of the cannabis oil, which contains both CBD and the psychoactive compound THC. Bleich keeps the piles of syringes filled with golden-brown liquid in the refrigerator, but the pile is getting smaller and if she runs out of the oil with WAMM closed, she isn’t sure what she’s going to do.
Bleich estimates the oil costs up to $85 per day at commercial prices before including new state taxes, meaning the family would have to come up with at least $2,500 per month to buy the oil from a commercial dispensary. But even if she could afford it, she said she is skeptical about whether she’d be able to find a comparable replacement for the oil that is processed from organic cannabis grown in WAMM’s own gardens.
The organization is one of a number of “compassionate care” operations that have reportedly been forced to close their doors under California’s new recreational regulations that levy hefty state taxes and licensing fees.
The medical marijuana users who can’t afford to pay the hefty premium at the commercial dispensaries say they have been forced back into the black market where they’re unsure of the quality and efficacy of what they find.
“It’s intolerable,” said Dale Gieringer, who directs the California chapter of cannabis legalization advocacy group NORML. “The way the law was written, if you want to give marijuana away free to medical patients as has been for 20-plus years, you have to pay taxes on it as if you sold it.”
A bill, S.B. 829, is working its way through the Legislature that would could create a path for some of the compassionate care programs to reopen by exempting them from cultivation and use taxes and allowing them to partner with an existing retailer for distribution – but it’s far from the panacea that compassionate care advocates are calling for, Gieringer said.
FORCED TO CLOSE
Valerie Corral, WAMM’s co-founder and director, is used to adversity. She and her then-husband, Mike Corral, began growing and gifting cannabis from a garden in Bonny Doon in 1993, after Corral found it helped her own epilepsy.
The organization survived clashes with the local law enforcement and a 2002 raid by the federal Drug Enforcement Agency. In a 2004 decision ordering the federal government to leave the growers in peace, Judge Jeremy Fogel called WAMM “the gold standard of the medical marijuana movement.”
Corral also co-authored Prop. 64, which in 1996 became the first statewide law to legalize medical marijuana.
But in December, she told the Sentinel she was worried about how WAMM would continue to operate in the new recreational marketplace that carved out no exemptions for donation-based, not-for-profit organizations such as hers. She said WAMM would need to raise an estimated $100,000 to pay required renovations to its Westside Santa Cruz storefront, on top of state licenses that themselves cost tens of thousands of dollars.
It was going to be hard, Corral said, but she’d make it work as she always did – “one way or another.” Then a tough situation got worse.
The co-op’s longtime Westside Santa Cruz landlord refused to sign a letter required under the new state regulations, acknowledging that a cannabis business was operating on the premises. Some property owners see the acknowledgement as an exposure to legal liability.
On Jan. 1, WAMM closed its doors to more than 1,000 members, many with severe conditions that include cancer to lupus, epilepsy and multiple sclerosis, according to Corral and members reached by the Sentinel.
WAMM is pushing to reopen in Santa Cruz as soon as December, and Corral said the organization has a likely location identified in midtown Santa Cruz.
But it can’t continue operating as a member-owned co-op because that model is set to become illegal in January 2019 as older state regulations continue to be phased out.
Instead, for the first time WAMM is planning to split itself into a for-profit recreational retailer that supports its compassionate care arm – comparable to the Santa Cruz Veterans Alliance, which sells wholesale and retail cannabis to support its donations to veterans.
“I have resisted, resisted, resisted this but the writing is on the wall,” said Corral. “There won’t be a WAMM. There won’t be anyone to serve the poor.”
In the meantime, unable to operate as she has for 25 years, Corral still meets with a core group of about 50 every Tuesday evening.
Among them is Janet, 63, of Watsonville who asked not to be identified by her full name due to fear of losing her social security benefits. Janet, who has lupus, is one of WAMM’s longest-served members. She joined WAMM to try an alternative pain-management treatment to the opiates she was prescribed by her physician.
“They put me on a whole lot of medications,” Janet said. “I couldn’t get out of bed that year. I was on so much – I took them three times a day – I think the medication was almost as bad as the disease.”
That year, Janet recalled waking up and vomiting for hours. She said a neighbor would come by during the day to help her drink water while she lay trying not to move due to the intense joint pain associated with lupus.
Someone, she thinks it was a UC Santa Cruz student, told her about WAMM and Janet said tried smoking cannabis as an alternative pain treatment.
“It doesn’t knock you out, it doesn’t take the pain away, but it enabled me to have more of a life,” Janet said.
With WAMM closed, she said she’s been forced to rely on friends to find the right kinds of cannabis on the black market and give them to her. She said dispensaries are too expensive for her to afford on a fixed income, and her landlord doesn’t allow her to grow it herself,
“For me, it’s depressing and sad and I’m not sure what to do because the stores are very expensive to me,” Janet said.
Other WAMM members shared similar stories. Karina, of Oakland, who asked to be identified only by her first name, is in remission from stage-4 cervical cancer. A native of Hong Kong, Karina had never considered using cannabis – recreationally or medicinally – until undergoing chemotherapy and repeated surgeries, leaving her unable to walk, sleep or eat.
She credits the donated cannabis oil she received from WAMM with saving her life.
“I was willing to try anything to try to survive, and after I tried cannabis – it was amazing,” she said. “It helps you release the pain. It makes your spirit better.”