Hibbing family has seen positive results from medical cannabis for daughter with severe epilepsy
HIBBING, Minn. -- As with any 10-year-old, Amelia Weaver began to get restless as the adults' conversation wore on.
But when her dad, Josh Weaver, spoke, Amelia's dark brown eyes followed him.
That alone bespoke a victory for the Hibbing girl, who suffers from a rare and particularly heinous form of epilepsy and who became something of the poster child for the cause of medical cannabis in Minnesota.
"Having her smile at us and give us eye contact and want to be a part of what we're doing and not having seizures all day has really been life-changing for Amelia," said her mom, Angie Weaver, as she and Josh sat with their daughter on the living room floor in their Hibbing home.
Amelia is among more than 1,400 Minnesotans being treated with medical cannabis since the drug became legal in the state last July 1. She is one of about 300 being treated for epileptic seizures. And she is among more than 150 children in Minnesota certified to receive medical cannabis.
As of last week, 565 health-care practitioners -- mostly doctors, but also nurse practitioners and physician assistants -- had been approved to certify patients as being eligible for treatment with medical cannabis.
People in the industry, state officials and medical professionals agree an increase in participation will eventually come after Aug. 1 of this year, when intractable pain is added to the conditions for which patients can be given medical marijuana. All are hesitant to say what the impact will be.
"We think the numbers will go up," said Michelle Larson, director of the Office of Medical Cannabis within the Minnesota Department of Health. "But I don't think it's going to take off out of the gate."
That's similar to the description insiders provide for the program during its first year: It didn't take off, but it posted slow, steady gains and achieved modest results.
In a survey of medical cannabis patients and providers released last week, about 90 percent of patients reported mild to significant benefits, according to the health department. About 20 percent reported side effects.
But such early results must be read cautiously, said Dr. Charles Reznikoff, an addiction medicine expert at Hennepin County Medical Center in Minneapolis.
"When you start something new there's always this sort of honeymoon period where it seems like it's all positive and there's no negative," Reznikoff said. "There's no such thing as a drug that has no negatives."
The law that went into effect last year allowed patients with nine specific conditions -- ranging from muscle spasms from multiple sclerosis to glaucoma -- to be certified for treatment with medical cannabis, although the federal government still considers any form of marijuana an illegal substance.
"Positive experiences" have been reported at HCMC for patients being treated for cancer and patients who are HIV-positive, Reznikoff said. But "a lot of those things are symptom control and are inherently subjective."
On the other hand, results from treatment for children treated with CBD oil derived from marijuana plants are quantifiable, he said.
"About half of the kids, CBD doesn't seem to help, but about half of them have a lowering of their seizures, and they seem to be more awake," Reznikoff said.
One of 150
The Weavers say they know not all children have responded to the treatment, and they're grateful their daughter is among those who have.
Amelia was diagnosed with Dravet syndrome, an especially debilitating form of epilepsy, when she was 4. But even among those who have Dravet syndrome, Amelia has a rare form, known as SCN2a. It refers to the gene mutation that causes epilepsy in those who have it. She is one of 150 children in the world known to have Dravet syndrome SCN2a, Angie Weaver said.
The effects were devastating.
Amelia, who had her first seizure at 18 months and her second a year later, was having 20 to 30 seizures a day. It changed her from a healthy, intelligent child who could say her ABCs and count to 20 at age 2½ to being unable to communicate verbally and unable to hold a fork or spoon. Learning that some children with Dravet syndrome had responded well to medical cannabis in states where it was legal, the Weavers got on board with the campaign in 2014 to legalize the substance for specific medical purposes in Minnesota.
Angie Weaver appeared at countless news conferences and events, and the family -- including little sister Penelope, now 5 -- agreed to numerous TV interviews. Amelia, with her short, brown hair and soulful eyes, became one of the faces of the legalization effort. Her articulate, impassioned mother's voice was heard frequently.
Although the campaign was ultimately successful, it was in many ways a disheartening experience, Angie said.
"I definitely found out that while I always want to continue fighting for my daughter that politics is very difficult, and I don't really have a rose-colored view of politics anymore," she said.
'An absolute hero’
Andrew Bachman, an emergency room doctor in the Twin Cities who would co-found LeafLine Labs as a grower and distributor of medical marijuana, remembers reading an article in which Angie was quoted.
He was struck that the family chose to stay home in Minnesota and fight rather than move to Colorado, where medical cannabis already was legal, Bachman said.
"I remember being so moved and impacted by someone who simply believed in this being right and instead of taking the easy road, certainly took the road less traveled by," he said. "Rather than becoming a medical refugee and treating her daughter by moving to Colorado, she stayed and fought. ... She is an absolute hero to me."
Now that the Weavers have been customers of LeafLine Labs for nearly a year, the admiration is mutual.
"Dr. Andy Bachman inspires me with his passion for helping patients," Angie said. "We have a lot of confidence in the pharmacists that help us there."
The Weavers found an ally nearby in state Rep. Carly Melin, DFL-Hibbing, who championed the legislation. Melin became not just their representative but a family friend; the moms and their children gather for play dates, Angie said.
Melin, who is not running for re-election this year, confirmed that.
"My toddler Leonard loves Amelia," Melin said. "He loves to run up and hug her."
Although law enforcement groups and the Minnesota Medical Association opposed the legislation and Gov. Mark Dayton expressed reluctance, the bill eventually passed with broad bipartisan support and the governor signed it.
It took compromise to reach that result, Melin said.
"That's how laws are made in Minnesota," she said. "The good news is that it's helping a lot of people."
But the Weavers and others seeking the treatment for themselves or loved ones had to wait for a year while the two providers were selected, facilities were built and the plants were grown. Even after legalization took effect on July 1 of last year, the Weavers had to wait another three weeks because the formula for Amelia's condition wasn't ready.
'Best six months’
Once Amelia was started on her three daily doses of the oil LeafLine Labs calls Cobalt, the results were impressive, her parents said.
"It was the best six months of her life since she started having seizures," Angie said. "She was walking on her own in the house for the first time in years. ... She went 20 days without seizures. ... I think it's the longest stretch she's had since she was 4 years old."
Added Josh: "She actually was drinking out of a straw. (She developed) skills that she has not had since she was just a toddler."
Amelia slept peacefully at night for the first time since she started having seizures, Angie said. She also started to use sign language and was interacting with family members.
"She was looking at you and trying to make sounds," Angie added. "Like I'd say, 'Mmmm Mom,' and she'd go, 'Mmmmm.' "
Amelia started to smile again. Penelope would dance with her big sister, and the two would laugh and giggle.
'Life or death’
But the Weavers knew medical cannabis would not be a miracle cure. Amelia still had a serious medical condition which, among other things, compromised her immune system. A sticker on the door to their home reads: "STOP. I AM A MEDICALLY FRAGILE CHILD. Help keep me safe by staying away from me if you are sick. Wash your hands before touching me."
After Penelope returns from preschool, she washes up and changes clothes, her mom said.
In spite of their best efforts, Amelia contracted strep throat in December. Her seizures returned, and she was flown by Life Link III from Hibbing to the Mayo Clinic on Dec. 10. The Mayo's doctors could only bring Amelia's seizures under control with large doses of traditional seizure medication, Angie said. She was so heavily sedated that she needed a breathing tube.
"We thought we were going to lose her," Angie said. "It was life or death."
The family returned home on Dec. 21, but Amelia had been weaned off her medications too quickly, her mother said. They drove back to Mayo on Christmas Day -- leaving Hibbing at 4 a.m. -- and this time stayed until Jan. 15 to make sure Amelia's condition had stabilized.
The episode took its toll, her parents said.
Seizures continued. Amelia lost her ability to walk. The cognitive and social gains they'd seen in the previous six months disappeared.
After two months of physical therapy, Amelia could walk again, although she still lacks stamina and endurance, Angie said. Of late, the seizures have been occurring only at night. She seemed calmer when she started using Cobalt, and that has continued. There's more eye contact, and she clearly knows the difference between family and strangers, the Weavers said.
Her smile has returned.
Will she get back to the gains she experienced last year?
"You know, we have endless hope," Angie said. "Always. I don't think anyone can predict exactly what Amelia's future will bring. We have endless hope for her quality of life and what gains she can make."
Despite the setback, Amelia remains a 4-foot, 2-inch, 52-pound inspiration for proponents of medical cannabis.
A photo of Angie and Amelia is featured on LeafLine Labs' website, with a link to their story and more pictures.
"Their family are all heroes to me, and I can't tell you the emotion and the connection I felt with Amelia across miles even before I met her," Bachman said.
A particular strain of his company's cannabis has proven to be successful for a number of patients with epileptic seizures, enabling some to go a month without a seizure, he said. The company has named the plant from which that strain is derived after Amelia.
The Weavers recently added a second medication to their fight with Amelia's condition. The medicine, developed in France, is called Stiripentol and is formulated specifically for patients with the SCN2a form of Dravet syndrome. The issue is affordability: It costs $3,000 a month.
Although Stiripentol is not FDA-approved, the Mayo Clinic connected the Weavers with a lawyer from the Minnesota Disability Law Center who convinced their insurance company to pay for a six-month trial of the drug, Josh said.
"We were never ones that said it has to just be medical cannabis," Angie added. "We'll do what we need to, and we're really confident in our neurologist at the Mayo and the care we receive there."
They know they are in it for the long haul.
"Amelia is going to be with us," Josh said. "She's going to retire with us. She's going to be with us for a very long time. If she's getting medicines that are not effective when she's 10 years old, what is the future going to bring? So it's nice to have other options."
They're also part of the FamilieSCN2a Foundation, which among other things is funding research into gene therapy as a possible cure for the SCN2a mutation.
The Weavers pay about $300 a month for LeafLine Labs' Cobalt, which they say they can afford. But many Minnesotans consider the price of medical marijuana a barrier. In the health department's survey, 73 percent of respondents said they consider medical cannabis in Minnesota to be unaffordable.
Melin said that concerns her.
"A lot of people, even those in the middle class, are finding barriers with the cost, and that's something that needs to change," she said. "Nobody should be barred from receiving the health care that they need."
Prices for patients who get medical cannabis at LeafLine Labs range from just under $100 to about $500 a month, Bachman said. That's "very inexpensive" compared to many medications put out by big pharmaceutical companies, he said. But unlike their products, medical cannabis isn't even partially covered by insurance.
Dr. Dave Thorson, a family practice physician with a large group in the Twin Cities who also is president of the Minnesota Medical Association, said two patients he certified for medical cannabis later told him they went back to getting marijuana on the street because it was cheaper there.
Another issue, Thorson said, arises when patients can't find a doctor to certify their condition for medical marijuana in their town and turn to him and other physicians who are known to have met the qualifications to certify. The problem, he said, is that the law requires that the physician be managing the care of the patient he or she certifies, and that can't be done in a one-shot visit.
Thorson has had two people from Duluth see him about being certified, he said.
One decided it would be too expensive. With the other, "I said I would have to see him for at least two months, and I never heard from him again."
That is not an issue for the Weavers, with Amelia's care being managed out of the Mayo Clinic. And buying marijuana on the street was never an option.
One of the persistent myths they encounter is that Amelia smokes marijuana, they said.
"We give it to her in a dropper with a syringe just like we give her her other medicines," Angie said.
In fact, nobody can legally smoke marijuana in Minnesota under the current medical cannabis program, Larson said, although Minnesotans can petition that the health department consider allowing smoking in the future.
Another myth, Josh said, is that Amelia gets high from her marijuana medication. He hears that less now than he did at first, he added.
"Amelia certainly does not get high," Josh said. "But ... I can see when she gets her medicine that she gets a little bit calmer and she looks more focused -- more with it, if you will."
Just as the Weavers realize they can't know what the future holds for Amelia, no one can predict the future of medical cannabis in Minnesota, Bachman said.
"Anybody who throws out a number or complete knowledge or understanding of where this industry is going to be in two months, much less 20 months, really is manufacturing data," he said. "It is a truly novel health-care sector for Minnesota."
The Weavers say they're just grateful for what has come so far.
"I think this has been a life-changer for us," Angie said. "Seeing her smiling means the world to us because we've had years of her not making any facial expressions."