Patients seek cure for medical pot dilemma

Critics of medical marijuana often note that most of the people using the system aren’t actually sick — they’re just using it as a way to get cheap, untaxed pot.

And the critics aren’t entirely wrong. Even those in the medical marijuana community admit that there are likely more people gaming the system than there are people using it as intended.

But that’s not the entire story.

For seriously ill patients, the drug and medical access to it can be a lifesaver, life-extender or at least make life bearable — but because others abuse the system and because of the drug’s federally illegal status, medical marijuana can also be a patient’s nightmare.

“The system just isn’t set up for people that really need it,” said Katie Zinno, a Vancouver medical marijuana patient suffering from rare illnesses. “I have so many different problems, (traditional) medicine isn’t set up to treat me.”

It’s been difficult to even get a doctor to discuss marijuana as a treatment option, much less support it, said Zinno, who suffers from a serious connective tissue disorder and seizures.

“It’s the one thing that actually works, out of years of trying other treatments,” Zinno said. “But to get access to it, I basically have to give up everything else (including pain medications and traditional treatments).”

Zinno’s primary doctor declined to talk to The Columbian about this story because of the controversy around the drug.

“She says she wants to but she can’t because of hospital policy,” Zinno said of her doctor.

Dr. Alan Melnick, director of Clark County Public Health, said medical marijuana is not something he generally deals with, but broadly, as a medical expert, he said the drug is too poorly studied for most doctors to feel comfortable prescribing it.

“It’s hard to do the studies because it’s still federally illegal,” Melnick said. “If you look at the research, it’s mixed. The other issue is (unlike other drugs) the feds don’t regulate it — dosage, what’s in it — and that’s a problem.”

It might be easier to study if it were federally reclassified from its Schedule I status as a drug with no medical benefits to a Schedule II drug, but that hasn’t yet happened, Melnick added.

“Marijuana’s been around for a long time,” Melnick said. “It does have addictive potential, and it’s a problem for kids. It’s not all roses.”

Washington’s largely unregulated medical marijuana system, which traditional doctors often don’t want to be involved with, is also rife with problems.

The lack of organization and structure can leave patients in a limbo where they have to find their own treatment methods and medications. And the federal ban and stigma means there’s not much in the way of financial help or pharmaceutical guidance for those who want to look into the treatment.

The state system also doesn’t require testing of medical marijuana products — it’s up to individual growers or dispensaries to decide whether to test or not, adding more concerns for patients who are already suffering.

On the recreational side, testing includes screening for mold, some chemicals, and the percentages of THC (the component of marijuana that gets people high) and CBD (a non-psychoactive component used to treat pain and seizures).

Many medical advocates think testing should be even more strict for their patients than it is for recreational users, and the problem is something that even growers and medical dispensaries say needs to be fixed.

“Everything needs to be more tested from now on,” said Tom Lauerman, a medical marijuana grower in Vancouver who works with between 20 and 25 patients. “They really need to set standards across the board. And illegal dispensaries, you need to get rid of them and only have legit ones. We need to weed out the blatant drug dealers.”

The state Legislature is debating whether to add structure to the system by rolling it into the recreational marijuana network. But if that happens, will recreational growers and stores want to make medical products like suppositories or concentrated oils designed for a very small number of patients?

Some say they are willing to do that, but patients remain justifiably concerned that their medications may no longer be available if the medical and recreational systems are merged.

“I don’t think it’s a good idea to mix the two,” said Lauerman, who is also a patient. “One is health related, the other is not. They need to be separated.”

One patient’s story

Katie Zinno’s medical nightmare began when she was 14 and a student at Oregon’s Hillsboro High School.

“I was hanging out with friends at Red Robin and I just passed out on the pavement outside,” Zinno said. “I had no idea what was going on, but I just started passing out randomly after that.”

Zinno, 24, used to love playing in the school’s wind ensemble, but the strange illness made her so short of breath she had to quit.

After going through several doctors, she learned she had Ehlers-Danlos syndrome, an incurable connective tissue disorder that affects her skin, joints, muscles and internal organs.

“I also make too much spinal fluid,” Zinno said of her secondary disease, intracranial hypertension. “That’s why they put a shunt in my head. But that makes me have seizures.”

At 18, she went on the road to see doctors in California and Maryland, hoping to find some relief. But everything she tried just seemed to make things worse.

“Two years ago, I was on 22 medications and I weighed 220 pounds from fluid retention,” Zinno said. “I came back to my family in Vancouver after I heard that pot had just been legalized. I was ready to try anything at that point.”

Zinno grew up a conservative Republican with a strong anti-marijuana stance, but after a host of traditional medical strategies failed to help her, she found herself willing to reconsider her ideas about the drug, she said.

When she returned to Vancouver, she was on a combination of methadone, fentanyl and morphine sulphate to treat her symptoms. She spoke to doctors at Oregon Health and Science University about medical marijuana as an option.

“They said I could do that, but I would have to stop taking all my pain medications,” Zinno said. “I wanted to go through the proper channels. I wanted to communicate with everybody.”

She also tried going through Providence Health & Services in Portland, but because cannabis is illegal, she was told that if she wanted to try it, she’d have to look elsewhere.

“A lot of doctors won’t even treat you when they find out you have a complex illness,” Zinno said. “At that point, I qualified for hospice care. They sent me home basically to just die.”

But she didn’t die.

Instead, she found J.B. Creel, who runs Cannalogics, a medical marijuana center in Portland. Creel looked over her records and said he thought medical marijuana could help.

“I did not know at the time that it would be this effective,” Creel said. “I don’t take patients on unless they’re really sick or dying. But she’s done remarkably well. This is the first treatment of anything that has actually worked for her.”

Despite all her problems navigating the system, Zinno said her pain tolerance is far greater with medical marijuana, her seizures are far less frequent, and she’s out of the hospice and living mostly on her own, albeit with a roommate, in Vancouver.

“Even my parents, who are also conservative Republicans, are on board with medical marijuana at this point,” Zinno said. “They’re just happy something is working.”

And that’s not to say she isn’t still sick. So far, she’s had five brain surgeries. Her shoulder, knee and other joints often dislocate randomly and have to be popped back in place. And she still has seizures, just fewer of them.

But the medical complications aren’t the only thing she has to deal with. Like many seriously ill patients with complex diseases, she also faces poverty.

Medical marijuana doesn’t fall under any health insurance plan. And Zinno’s treatment requires an oil made from about two pounds of marijuana a month. That costs about $65,000 a year to keep her going, much of which is donated, she said.

At the beginning of March, she had to choose between paying her rent or helping to pay for more medication, she said, adding that she chose to pay her rent.

“The people that really care about the medicine, they’re going broke,” Zinno said. “They’re spending so much every year on my medicine and they have to eat most of that cost.”

It’s a frustrating situation, and yet her quality of life on medical marijuana has improved so much that it’s worth it, she said.

“It’s not curing me, but it’s certainly making my life a lot better,” Zinno said. “I was told I’d be dead by 25, and I’m celebrating my 25th birthday next month. I couldn’t be happier to prove everyone wrong.”

Seeking a solution

It’s likely that the plight of medical marijuana patients won’t ease unless the federal government reclassifies the drug and makes it easier to study.

The legal recreational marijuana system in Washington hasn’t so far been a big help for patients, who have different needs and sometimes very specific medication requirements.

Merging the recreational and medical systems in Washington may eventually help patients. But in the short term, it’s likely to lead to even more uncertainty as patients wait to see what changes the Legislature makes and how it affects their access to the drug by the time the session finishes in late April.

“My hope is that people will see this is a really complex issue,” Zinno said. “It seems like medical patients will lose out, because the recreational side is run by people that want to make money.”

Money is also a factor at universities and medical facilities that might otherwise like to study cannabis. If those organizations work with marijuana on their own, they put their federal funding at risk. And not many groups, or doctors, are willing to do that.

“What we need to do is get doctors to lose their fear of losing their jobs if they talk about this,” Creel said.

Those problems aren’t likely to change soon, even as legalization of both recreational and medical marijuana continues to spread in states across the country. Ultimately, the ball remains in the fed’s court, Lauerman said.

“As long as this is a Schedule I narcotic, it’s going to have to be this grass-roots type of medicine,” Lauerman said. “There’s so much to it. Patients need a place where they can feel safe; they need better information. But I think they’re going to have a really hard time until the feds do something.”

Sue Vorenberg: 360-735-4457; http://www.twitter.com/col_suevo; [email protected]

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