Dodgy science, poor access and high prices: The parallel medical world of medicinal marijuana in America

The lack of knowledge has an impact on patients. According to the CDC, a fatal overdose from marijuana is highly unlikely — though people have died from doing something dangerous while under the influence of cannabis. But patients have had negative reactions after trying cannabis to treat symptoms of a disease they anecdotally heard it may help.

Anne Hassel was initially a believer in the healing properties of marijuana. She pushed for legalization in her home state of Massachusetts, and even did jail time on marijuana-related charges. After weed was legalized for medical use in 2014, Hassel — now 55 — quit her job as a physical therapist and went to work in a dispensary.

She used marijuana because she “thought it helped … physically and mentally,” but stopped after being diagnosed with heavy metal poisoning and developing suicidal ideation. She blames both on poorly tested, high-potency concentrates that became more available after legalization.

“That’s what burns me up; that the most susceptible people, who might have lung issues and other problems, are using this substance,” Hassel said.

Arnsten says she screens for family or personal histories of mental health problems or heart disease before recommending cannabis — and recommends patients don’t choose smoking or vaping as their method of consumption. However, other doctors simply hand out a recommendation without a long discussion — and many patients try medical marijuana without ever consulting a doctor like Arnsten.

Some states, cities and even hospitals have come up with creative ways to fill in the gaps left by the lack of regulation or a formal connection to the medical system. A bill in New York would require that state insurance agencies cover medical cannabis expenses for patients. Patients and a medical marijuana company in New Mexico, meanwhile, have filed a class-action lawsuit against some of the state’s largest health insurers with the intention of forcing them to cover medical marijuana.

Universities have popped up with training programs for the medical cannabis industry, like the graduate program in Medical Cannabis Science and Therapeutics now available from the University of Maryland’s pharmacy school. The program intends to make sure people working in the cannabis industry, including dispensary workers giving recommendations from behind the counter, know how to read and contextualize scientific research and how to guide new consumers in a healthy way. Other states, like Utah and Pennsylvania, require a pharmacist to be on hand in a dispensary. But most states still do not require any type of credentials or training for medical dispensary workers.

“The states are like a patchwork of regulation, and they’re doing a really crappy job, honestly,” Hassel said. “You’re having cracks and people are taking advantage and [others are] being harmed.”

Patients who get their medical marijuana card through Montefiore Health System in the Bronx, meanwhile, don’t pay for the visit — which saves them about $200.

“The way that we’re doing it is safer. We have access to the person’s entire medical record, we get results, we talk to a psychiatrist or other treating providers,” Arnsten said.

Even this solution, however, is only triage. Of the thousands of people that Montefiore has certified for medical cannabis use, only one-quarter purchase medical cannabis more than once.

“Most people said, ‘I couldn’t afford it,’” Arnsten said. “We’ve removed that [cost] barrier, but we haven’t been able to change that barrier of how much the products cost at dispensaries.”

Most Mondays, Amie Carter frequents a little bar in Flint with a giant red chili pepper mounted over the door. She meets friends to sip beers and play pool.

“My therapy [is] shooting pool and shooting darts,” Amie explained, describing her escape from the daily stress of being a full-time caregiver. “I get to listen to loud music. I don’t need to think about anything going on. And all I need to focus on is making that shot.”

Between shots, she chats with friends — a pool stick in one hand and a Budweiser in another. Chilly’s bar is another extension of the medical marijuana world that Amie has built up around herself and other patients in Michigan. The bartender, none other than fellow medical marijuana caregiver mom Ashley Morolla, walks over to see whether anyone needs another round.

Each parent or grandparent Amie knows has a different expertise — cannabis for pain management, or reducing seizures, or treating autism. If you are part of this community, you’re likely to find someone who has done hundreds of hours of research on the uses of cannabis for a specific ailment, and has extensive advice on how to trial different strains, doses and products until you find the right product.

Amie has pamphlets she leaves at the doctors’ office, offering consulting services to help patients get the right marijuana products. She’s taught other parents how to make cannabis oil capsules at home, and how to administer cannabis in liquid form for kids who can’t swallow pills.

Amie and her community have created their own solution to the country’s Swiss cheese medical marijuana laws, and worry that a major federal revamping of the state medical programs could put that in jeopardy.

“Leave the patient caregiver system alone. We can get our clubs, and we can really help the people that really need it,” she argued.

The network Amie has created, though, has one big catch: it is completely separate from the traditional medical system, which the majority of Americans still engage with — and no number of pamphlets, Facebook groups, or local events will find every potential patient or parent and ensure they all get accurate medical information and guidance.

“I don’t blame anybody for not wanting to get into this arena who’s in traditional medicine, because there’s so much that feels uncertain,” Arnsten said. “On the other hand, I do feel that our patients — particularly chronic pain patients — are using these products, or they want to consider using these products. … And we need to be able to answer those questions for them.”

Erin Smith contributed to this report.