Impatient for Minnesota medical marijuana
Esko, Minn., teacher Jess Blake is confident medical marijuana will lessen the nausea that comes with treatment for the brain tumor she was diagnosed with in September.
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Blake, 39, and her parents, Rick and Kathleen Blake of Grand Rapids, even have hopes that cannabis might make the tumor go away.
"The CBD (in marijuana) has been shown to shrink some tumors in mice," Kathleen said during a recent interview in her daughter's Central Hillside home. "I realize that's animals, but it's still ..."
She paused, the tears forming.
"It's still some hope ... and we'd like some hope," Kathleen finished.
On July 1, Jess Blake -- Jessica to her parents -- can legally receive medical marijuana in Minnesota for the first time. Although the Minnesota law passed in 2014 says nothing about curing cancer, it does allow its use for cancer patients to combat some of the symptoms of cancer, or side effects of treatment.
But there's a catch. Under the law, her condition has to be certified by a doctor, physician's assistant or advanced-practice registered nurse before Blake can legally get the drug.
So far, she has found no health professional willing to provide that certification.
PROVIDERS 'NOT ON BOARD'
It started -- or failed to start -- with Blake's physician at Essentia Health.
"Essentia is not on board with this right now," Rick Blake said, as he sat at a table with his wife and daughter in the two-story home that Jess owns.
So he turned to the Mayo Clinic and the University of Minnesota Medical Center, because Jess Blake had been treated at both.
The University of Minnesota Medical Center said no, Rick Blake said.
"And then the next morning Jessica got a call, and she gave the phone to me," he continued. "It was from Mayo, and they said it has to come from your primary care doctor. So I explained that her oncologist at Essentia wasn't willing to do that because Essentia didn't have a policy yet.
And she said: 'Neither do we.' "
It's a question Essentia Health has been wrestling with, said Dr. Brian Konowalchuk. He's chief of neuroscience and chairman of the health system's cannabis committee.
So far, Essentia has left the certification decision up to individual doctors, he said, but he's not aware of any physician with the system who has certified a patient.
"We want to make sure it's a really robust process ... a detailed and thoughtful process," Konowalchuk said. "I think our stance is that it's really imperative we do the right things for our patients."
In a statement, the Mayo Clinic said participation in the program is voluntary for its health care providers.
The University of Minnesota Medical Center's policy "is still in development," spokesman David Martinson wrote in an email Wednesday. "Much like the rest of the medical community, we're assessing all of the variables that come along with this new process."
Some physician groups also have taken that stance, said Manny Munson-Regala.
At the time of a phone interview, Munson-Regala was assistant commissioner at the Minnesota Department of Health with responsibility for medical cannabis. Last week it was announced that he will leave that position later this month and become CEO of LeafLine Labs, one of the two approved Minnesota manufacturers of medical marijuana, on July 6.
"What we've been hearing is that most practice groups are in the thinking-this-through process," Munson-Regala said.
To certify patients, health professionals must be registered with the state's Office of Medical Cannabis. In the first week after registration began on June 1, the health department announced that 104 medical professionals had begun the process of registering and 54 actually had been registered. The next update will be released on Monday.
St. Luke's hospital in Duluth hasn't told its physicians what to do, said Dr. Gary Peterson, the hospital's chief medical officer. As far as he knows, Peterson said, none has certified a patient for marijuana treatment to date.
Last week, the Blakes turned to MarijuanaDoctors.com, a New York company building a network of doctors to certify patients in Minnesota.
They made an appointment for June 17, Rick Blake said, and were willing to pay the company's $250 fee. But then the state of Minnesota suspended MarijuanaDoctors, closing that opening, he said.
Dr. Andrew Bachman, chief medical officer of LeafLine Labs, said he believes the state's health professionals will get on board before long.
"I'm very confident ... that the vast and innovative medical community ... when educated appropriately will make good decisions for these patients," he said.
RIPE FOR ABUSE, BUT ALSO THERAPEUTIC
In Peterson's view, a bigger issue is what hospitals will do when they have inpatients who have legally obtained medical marijuana in Minnesota.
The federal government classified marijuana as a Schedule I drug in 1970, meaning it's considered a dangerous substance with no valid medical purpose and a high potential for abuse.
"Federal law prohibits us from prescribing or handling a Schedule I drug," Peterson explained.
"Even though we don't have a formal policy, I think we're leaning toward not allowing it."
Dr. Scott Wolff works in the St. Luke's emergency department, meaning he won't be in a position to certify patients for medical marijuana. But he's interested in the subject. He sees marijuana as a "yin-yang" plant, he said -- obviously a drug of abuse, but also with "interesting therapeutic indications."
That came home for him, Wolff said, when a close friend diagnosed with cancer was suffering the nauseating effects of treatment. "All of our fancy anti-nausea drugs were to no avail," he recalled.
Then the woman's brother obtained medical marijuana, Wolff said, and the results were dramatic.
"It was very profound how it resolved her nausea," Wolff said. "None of us are supposed to learn by anecdote, but to be honest many of us do."
But Peterson remains in the unconvinced camp.
"Most physicians look to good, solid medical evidence," he said. "It just isn't out there with medical marijuana. ... I know there's anecdotal evidence of people getting relief. God bless them if they get relief. What we don't know is how many people does it not help and what the side effects are."
'THEY HAVE NOTHING ELSE'
The Blakes say they're frustrated by those sorts of arguments. They want the federal government to move marijuana off the Schedule I list so it can be studied without laws being violated. But they also want doctors to act on what they believe is ample evidence already available.
"Some of the clinicians are afraid of getting involved with medical marijuana because they don't know what the long-term impact is," Kathleen acknowledged. "And we understand that. However, in situations like Jessica's, they have nothing else to offer us."
Angie and Josh Weaver of Hibbing have been convinced for a long time that marijuana offers the best hope for their daughter Amelia, now 9, who is afflicted with a form of epilepsy known as Dravet syndrome.
The Weavers were among the families who lobbied legislators and a reluctant Gov. Mark Dayton to bring Minnesota into the medical marijuana fold in 2014.
As they've waited for the law to take effect, Amelia's condition has only worsened. From experiencing 20 to 30 seizures a day in January 2014, the dark-haired little girl with soulful eyes now has 30 to 80 seizures daily, her mom said in an email.
Their hope is based on reports of other children with Dravet syndrome who experienced turnarounds when administered medical marijuana, mostly in Colorado.
The Weavers have had a better experience so far than the Blakes. Amelia's doctor at the Mayo Clinic agreed to certify her condition, and as of Tuesday, she was officially registered.
"We anticipate Amelia getting her first dose July 1," Angie Weaver wrote.
'NOT CURABLE,' BUT TREATABLE
The Blakes' search began on Sept. 10, when Jess collapsed at school in Esko, where she teaches geography and history to seventh- and eighth-graders. In retrospect, she said, she realizes there had been earlier signs. A dancer, she suddenly couldn't remember her steps. She also worked as a caterer for the New Scenic Cafe and found she couldn't remember details of orders.
After collapsing, Jess was driven to Essentia Health-St. Mary's Medical Center. Then she was transferred by ambulance to the University of Minnesota Medical Center, where she was diagnosed with glioblastoma multiforme. Glioblastomas are the most common and aggressive primary brain tumors, according to the Mayo Clinic website.
The prognosis wasn't good.
"They said it's treatable but not curable," Kathleen said.
Added Rick: "If Jessica had not had the treatment that she had at the university, she would have died by now."
The tumor has shrunk somewhat, Jess reported. The Blakes have been told that may continue for one-and-a-half to three years, but then the tumor will grow back. For now, she said, she feels "pretty good" in spite of the nausea. The worst problem is short-term memory loss. Her long-term memory actually has improved, Jess said, but in mid-sentence she can forget what she was talking about.
Because of the memory issues, she's no longer allowed to drive. She can't read, and she tires easily. An independent woman who had done a lot of work inside and outside of her house in addition to teaching, dancing and catering, Jess now needs her parents' help.
Rick Blake, a member of the Grand Rapids city counc, had retired shortly before Jess was diagnosed, and Kathleen Blake has retired since.
Jess gets help, too, from high school classmates who learned about her diagnosis and who come to stay with her. Jess' students at Esko insisted on a school fundraiser for her.
COST IS UNKNOWN
The Blakes know insurance won't cover medical marijuana and said they don't know what it will cost.
The two manufacturers approved in Minnesota have estimated the cost to patients of up to $500 a month, Munson-Regala said. Both are committed to offering discounts to low-income patients, he said, meaning other patients will, in effect, be subsidizing them. The number of patients needing discounts would have an effect on the price other patients pay.
Rick Blake dismissed the cost as a worry.
"If the tumor went away, that's not an issue. Right?" he asked.
The Blakes say the medical profession in Minnesota has had plenty of time to evaluate medical marijuana and make decisions about it.
But it doesn't surprise Munson-Regala that decisions still are being made.
"The reality is providers are pretty, pretty busy people," he said.
Patients also need to realize that health providers don't have to certify anyone, and it may be necessary to seek referrals to someone who will, he said.
Konowalchuk said Essentia will have a policy in place by July 1.
THE PROCESS
But the Blakes are in a hurry, because they know there are several steps to the process. Once the patient has met with a medical professional who can certify her condition, she has to wait for an email from the Office of Medical Cannabis. That contains a link for online registration. The online registration includes a $200 annual fee -- or $50 for people in public programs such as Medicaid.
The patient then will wait for another email notifying her that her account has been approved. Then she needs to fill out a "self-reporting form" before actually visiting what the state calls a "cannabis patient center" where a pharmacist will meet with the patient and recommend a specific dosage and type of marijuana.
Eventually, there will be centers in Hibbing, St. Cloud, Moorhead and Rochester as well as four in the Twin Cities. But on July 1, only centers in Minneapolis and Eagan are expected to be open.
Jess Blake and her parents say they want to be at one of those centers on July 1, and they're baffled that the medical profession is standing in their way.
Kathleen Blake told of attending a patient support meeting at Essentia in which medical professionals suggested that offering medical marijuana violates the principle of "First, do no harm."
"I said: 'You know, this is our daughter,' " Kathleen Blake said. "Do you really think that we want to do her harm?"
MEDICAL MARIJUANA FACT SHEET
Forum News Service
Minnesota is among 24 states and the District of Columbia with some form of marijuana legalization.
Conditions that may qualify for medical medical marijuana in Minnesota:
-- Cancer (if the condition or treatment causes severe or chronic pain, nausea or severe vomiting or severe wasting
-- Glaucoma
-- HIV or AIDS
-- Tourette's syndrome
-- ALS
-- Seizures, including those caused by epilepsy
-- Severe and persistent muscle spasms, including those caused by multiple sclerosis
-- Crohn's disease
-- Terminal illness with a life expectancy of less than one year, if the illness or its treatment produces severe or chronic pain, nausea or severe vomiting or severe wasting
Physician participation is voluntary
Whole-plant marijuana will not be used
What may be used:
-- Pharmaceutical-grade pills
-- Capsules
-- Liquids and oils
Whom to contact:
-- Minnesota Office of Medical Cannabis: health.state.mn.us/topics/cannabis
-- Leafline Labs: LeafLineLabs.com
-- Minnesota Medical Solutions: minnesotamedicalsolutions.com
Sources: Minnesota Office of Medical Cannabis, Minnesota Medical Association
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