Patients, families, friends encouraged by early results from medical marijuana

Jess Blake of Duluth is pictured with her toy poodle Meg in January 2016. Blake has experienced a noticeable improvement in the symptoms of a brain tumor and chemotherapy treatments since starting to use medical marijuana in late July. Bob King / rking@duluthnews.com

'It's great to have her back'

Patients, families, friends encouraged by early results from medical marijuana

By John Lundy

DULUTH, Minn. -- Whether it's friends or family, people describe the changes they've seen in Jess Blake in almost the same words: They've got her back.

"Having her back after seeing her completely disappear is a great thing," Blake's friend Lisa McKhann said last week.

"It's great to have her back," agreed Blake's father, Rick Blake of Grand Rapids, in a separate interview.

Jess Blake, now 40, was diagnosed with a brain tumor in September 2014 after she collapsed at Esko High School, where she taught geography and history to seventh- and eighth-graders.

By last spring, Blake -- described by McKhann as energetic and independent -- had lost her ability to make appointments, to drive, to buy groceries, to tell or understand jokes, to read, to write, or to follow the plots of movies, McKhann said.

"She found herself unable to get out a simple sentence," McKhann recalled. "It was quite awful. She was 39 and suddenly having to be tended to just to make sure she was safe."

Jess Blake confirmed that in an interview earlier this month at her home in Duluth's Central Hillside, describing it as a time when she "couldn't quite process things."

"I made no sense most of the time, I think, to most people," she said.

Her parents, her friends and Blake herself agree that a dramatic improvement occurred in late July -- two weeks after she started taking the medical marijuana that became legal for certain conditions on July 1, when Minnesota became the 22nd state to have some form of legalized marijuana.

They see a connection.

"By two weeks it was dramatic, because she was less tired," Rick Blake said. "If it wasn't due to the cannabis then it was a coincidence that the effects of the conventional therapies just happened to happen at that time."

Like the Blakes, Josh and Angie Weaver of Hibbing say they've seen dramatic improvement in their 9-year-old daughter Amelia since they started giving her medical cannabis in July to treat Dravet syndrome, a particularly menacing form of epilepsy.

Dubious doctors

Not surprisingly, executives of the two companies allowed to sell medical marijuana in the state are bullish on the drug's use as a treatment, even while they say they aren't making any money yet. The state's top official for medical cannabis says it's early to draw conclusions about medical effectiveness, but that the program is running well.

But by and large, the state's medical community remains less enthused.

As the state was on the threshold of legalization in June, the Minnesota Medical Association took a survey of its members in which 68 percent of responding physicians said they wouldn't participate in the program, and only 9 percent said they would.

The MMA hasn't yet conducted a follow-up survey, said its president, Dr. Dave Thorson, but he doesn't think there has been much change.

"I have not seen a big swing in either doing it or not doing it," said Thorson, who is part of a group practice of 70 family physicians in the Twin Cities.

Some MMA members who registered as certifying physicians for the program's first year have told him they won't renew, said Thorson, who himself is registered. The process is too cumbersome, they've told him, and the number of patients seeking certification too few.

"A number of people in my own group who said they would certify ... have not certified in the past eight months," Thorson said.

As of Friday, 890 patients were approved in Minnesota for medical cannabis, and 492 doctors, physician assistants and nurse practitioners were registered to certify patients for the treatment, according to the Minnesota Department of Health's Office of Medical Cannabis.

That can't be compared to expectations, said Michelle Larson, the office's director, because there were no expectations.

"We didn't know how the program would go," she said. "It's successful from the aspect that people in it are getting help from it."

Not convinced

But doctors aren't warming to the idea, at least according to an informal survey conducted recently by Dr. Charles Reznikoff, an addictions doctor at Hennepin County Medical Center in Minneapolis. Of the 262 doctors from "multiple" health care systems who responded, more than 70 percent said they lacked the information they needed to advise patients about medical marijuana, and more than 75 percent said they lacked the time or facilities to certify patients.

"That is a perception, that is not a reality," added Reznikoff, who wrote HCMC's medical marijuana policy but counts himself as somewhat skeptical about the drug's medical uses. "The reality is that it's not actually that time-consuming, it's not a hassle. ... It probably does take two or three hours of good education."

Larson said she realizes medical marijuana hasn't gone through the rigorous studies doctors are accustomed to with other drugs.

"There is limited scientific knowledge," she said. "Many health care providers do like having another option. 

Others want to see how the program works. Some aren't convinced."

Nonetheless, the number of doctors already registered to certify patients is high compared to other states, said Manny Munson-Regala, CEO of LeafLine Labs, one of the two companies approved to sell medical cannabis in Minnesota. Connecticut had more than 200 physicians registered after two years of its program, and Massachusetts more than 300 after three years -- both behind Minnesota's pace, he said.

Nonetheless, some Minnesota patients still are having a hard time finding a doctor who will certify them, Munson-Regala acknowledged. He said that's because so many of the state's physicians work out of group practices, and if one or two groups in a community are "cannabis-unfriendly," few doctors might be able to certify patients.

‘Ton of cannabis’

Both the Weavers and Jess Blake were slightly delayed in obtaining medical marijuana initially. The Blake family turned to a practitioner in Grand Rapids, said Kathleen Blake, Jess' mother, even though her oncologist is with Essentia Health. Although Jess' case was set to be reviewed by Essentia's medical cannabis committee two weeks later, it was already July and the family wasn't willing to wait longer.

"We had been without Jessica for long enough," Kathleen Blake said, as she sat in her daughter's living room with Jess' toy poodle Meg on her lap. "We wanted to have Jessica back."

Amelia Weaver was certified and ready to go on July 1, but the Weavers were among those notified by LeafLine Labs that the needed formula for her condition wasn't ready.

Outside of that instance, though, LeafLine Labs has had no shortages, no quality issues and no security issues, Munson-Regala said.

Dr. Kyle Kingsley, CEO of rival Minnesota Medical Solutions, said his company has had ample supplies of all of its 20-plus medical marijuana products from Day One.

"We did our first harvest way back in March," Kingsley said. "We had over a ton of cannabis harvested by May."

Larson said that other than a couple of product shortages, her department isn't aware of any problems coming up in the program's first six months.

"Law enforcement has to report to us within 24 hours (if there is misuse)," she said. "There have been no reports from law enforcement. No reported diversions. Nothing that we're aware of."

Minnesota Medical Solutions has supplied between 500 and 600 patients, Kingsley said, on pace with the slowest of three projections the company had made for the first year. "It's something we're OK with," he said. "It will get traction, and things will grow."

Munson-Regala was equally sanguine about what he called "slow and steady growth." He said the record in other states shows a "hockey stick" phenomenon, with sudden growth between 18 and 24 months after medical marijuana is introduced.

‘Too expensive’

Both Kingsley and Munson-Regala said their companies are losing money so far, and both said they had expected not to make a profit in the early going.

Munson-Regala said most patients are paying about $250 per month for their medical marijuana, and Kingsley put Minnesota Medical Solutions' average price at between $200 and $400 per month.

"We did a survey, and 70 percent of our patients thought (the price) was where they expected or less than expected," Kingsley said.

But the Blakes say Jess typically pays about $600 a month. There's no insurance coverage -- private or government -- for medical marijuana.

"That's a significant chunk of money," Kathleen Blake said.

It's too much for some people.

"Some patients choose not to go through the state because of the expense," Thorson said.

Thorson himself is one of eight or nine family physicians in his group practice registered to certify patients for medical cannabis, he said. Any of them can certify patients of any of the 70 physicians in the practice. But so far, he has had only three requests from patients, and one of those didn't qualify, he said.

Of the other two, "one went on as far as I know to go through the state, but I haven't had any communication," Thorson said. "The other said: It's too expensive; I'm going to continue to buy it on the street."

The health department has "frequently heard" from patients that affordability is a problem, Larson said.

It's one possible reason why a number of patients who started purchasing medical cannabis legally have dropped out, she said. Her office has sent out letters and emails to 164 patients who purchased the drug but haven't returned in 60 days or longer to try to determine why.

Both Kingsley and Munson-Regala acknowledged their prices can't compete with the black market.

"But then the black market doesn't have to get their product lab-tested or labeled appropriately," Munson-Regala said. "Our patients tell us: Yeah, I pay a premium, but I don't have to worry about being ripped off."

Larson agreed. "What sets us apart from the black market and what sets us apart from other states is we really treat this as medicine," she said.

The price of medical marijuana compares favorably with prescription pain pills, Munson-Regala  said. The difference is that the prescription drugs generally are covered by insurers and government programs. He'd like to convince third-party payers to consider covering medical cannabis, Munson-Regala said, but it's a challenging case to make as long as the federal government still bans marijuana for all purposes.

Adding pain

Kingsley said he believes the price will come down somewhat when the number of patients increases. And that will happen, he said, after Aug. 1, when Minnesota patients will be able to obtain medical cannabis because of "intractable pain" for the first time.

 

Noting that nationally, 90 percent of patients who use medical cannabis use it for pain, Kingsley predicted the number of his company's patients will grow by from two to four times after that condition is added. Munson-Regala was more cautious, predicting the number of patients would at least double but that most of the new growth might not occur for another 18 to 24 months.

But again, physicians may not be on board. In Reznikoff's survey, more than 60 percent of responders were opposed to intractable pain as a qualifying condition, he said.

"Docs were generally against, against, against," he said. "Their general attitude is: We didn't love this to begin with."

Munson-Regala said he understands why doctors are concerned. The illicit use of opioids prescribed for pain has become a national crisis, and doctors are wary of precipitating more misuse. That may be especially true in the Northland, he added.

"Providers in Duluth and the Northeast (Minnesota) area have been burned," Munson-Regala said. "You guys up there have some real challenges with opiates."

But states that legalized medical cannabis for intractable pain have reported a drop in their rates of prescription overdose, Munson-Regala said. Medical cannabis, he said, offers a middle ground between over-the-counter medications and prescription opiates.

And it's much safer than opiates, Kingsley said.

"Prescription opiates are killing 16,000 people or more in the United States," he said. "You can't overdose on cannabis. There's no way for it to be lethal."

But Reznikoff counts himself among the wary.

"If you're really talking about medical cannabis rather than opioids, then OK, I'll hear that as an improvement," Reznikoff said. "But if what you're talking about is medical cannabis and opioids -- that's what I fear will happen. ... If you just throw another chemical in the mix, I don't think that's a good idea."

Thorson said he thinks intractable pain will be a "deal changer," and he's concerned about how the rules are put in place.

"There are some places, such as California, where it's very easy to get medical marijuana," he said. "I hope we're not going down that road."

‘Seizure-free’

But medical marijuana already has been a deal changer in Amelia Weaver's battle with Dravet syndrome, her parents say.

"In the last six months we've seen Amelia have the most quality of life she's had since her first seizure (at 18 months)," Angie Weaver wrote in an email. "She went from nearly 100 seizures a day to five a week, with stretches of up to 20 days seizure-free. She was able to have all her seizures treated with just medical cannabis."

Their daughter, whose development had been reversed because of the effects of her many seizures, began to use sign language, was sleeping better, smiling and walking without her parents having to fear sudden "drop" seizures, Angie Weaver wrote.

Amelia suffered a setback, though, in December when she developed strep throat. Because of Dravet syndrome, Amelia always has suffered extreme reactions to illness, Angie Weaver wrote, and on Dec. 11 she was flown to the Mayo Clinic in Rochester for treatment that has lasted more than a month.

By the past week, she had improved enough to be moved to the pediatrics floor, the Weavers posted on the "Fighting for Amelia" Facebook page, and they were set to bring her home to Hibbing on Friday.

Toward normal

Jess Blake said she believes medical marijuana has been a deal changer for her as well. The vaporizer she uses that has THC -- the ingredient that gives marijuana its psychoactive effects -- has reduced the nausea she experiences as a side effect of chemotherapy, she said.

"Prior to this, I had visits to the emergency room for nonstop vomiting," Blake said. "And I haven't had that in quite some time."

But Blake, who gets her medication from the Minnesota Medical Solutions distribution site in Minneapolis, said it has never made her high. "I think I felt more altered by the painkillers I was having to take for so long," she said.

Twice a day, she takes capsules with CBD -- the non-psychoactive portion of marijuana that's credited, at least in animal studies, with various positive medical effects.

Although her balance has improved, Blake said she hasn't been able to return to dancing. But in many ways her life has started to return to normal. She doesn't have to have someone staying with her all the time. She can haul wood from her shed to her back porch and shovels when it snows. She has returned to the gym for classes and strength-training. She takes her dog for walks.

She hopes to resume teaching, at least part time, in the fall.

Roles have changed.

"With my friends, before they used to come to take care of me," she said. "And now when they come I can cook for them."

‘Dramatic difference’

All of that would have been unthinkable during the first half of last year.

Clinically, it's not clear if the tumor has been reduced at all, Rick Blake said. But necrosis -- the dying-off of cells -- has been reduced. Some of the medication she is using via chemotherapy is known to reduce necrosis, although doctors don't understand how it works, he said.

"That's why it's difficult to say exactly what caused that (reduction)," he said. "I sure wish I knew. It's puzzling to me that the doctor can say we're not sure of the mechanism but it does work ... but they won't say that about medical cannabis."

Whatever the explanation, Rick and Kathleen Blake say they can see the huge change in their daughter.

"All I know is it was such a dramatic difference after two weeks," Kathleen Blake said. "So dramatic that I don't know what else to attribute it to."

McKhann, a cancer survivor and originator of the nonprofit Project Lulu, said she's amazed by the positive change in her friend of 15 years.

"It's just quite a gift to have her back," McKhann said. "It's been a huge gift to have all of her back, including her sense of humor, her Jess-ness."