Katelyn Baker
Well-Known Member
Mankato - After all her work pushing for legalized medical cannabis in Minnesota, MaryAnn Nelson doesn't even have her daughter enrolled in the program.
A year ago the Mankato mother and her daughter, Rachael, became something like the faces of the local push for medical cannabis. They and other families of children with Rett syndrome, a condition causing daily seizures, hoped legalization would lead to much needed relief.
The reason the Nelsons aren't signed up isn't because medical cannabis doesn't work. It's because they can't afford it. And they're not alone.
Several area families of children with Rett syndrome haven't been able to sign up due to exorbitant costs that insurance won't cover.
Nelson said her daughter's treatment would cost $500 a month. As a widow of five children, that price is too steep.
"My other children know that seizures are a part of life and I prefer that they didn't know they were part of life," she said. "There's a medicine out there and I just wish we could afford it."
Like others in the area, Nelson said she experienced sticker shock once the medical cannabis program started.
Jason Bennett, of Mankato, said his daughter, Ashlyn, tried the CBD, or cannabidoil meds, for a couple months last year. The cost doubled after one month once the dosage was increased, and the uncertainty of cost from month to month forced them to drop out.
"I can't even get to the point of seeing if it works because it's cost prohibitive," Bennett said.
On top of the cost, the accessibility was a major issue for the Bennetts. They had to drive to LeafLine Labs in Eagan to fill out their prescriptions.
Bennett said it's frustrating to be able to fill out a prescription down the street for a range of other medications, but then have to drive more than an hour for another legal medication. To him, it further feeds into the stigma still attached to marijuana as a medicine.
"It makes you feel like you're doing something wrong, and at the end of the day I'm trying to make my daughter better," he said.
Concerns like these aren't limited to the Mankato area. A recent survey from the Minnesota Department of Health found 73 percent of respondents reported the cost of medical cannabis to be unaffordable.
Meanwhile, 90 percent of those surveyed reported "mild to significant" benefits paired with few side effects.
Michelle Larson, director of the Minnesota Department of Health's office of medical cannabis, said she wasn't surprised by the effectiveness of treatment or the costs.
Medical cannabis, like many other prescription medications, is expensive when it has to be paid for out of pocket, she said.
"We know that costs are prohibitive and we are concerned about it," she said.
Nelson said her insurance doesn't cover medical cannabis because of its status as a Schedule I controlled substance under federal law. Despite medical cannabis being legal in half the states, federal law considers it to serve no medical purpose.
Minnesota, like most states with medical marijuana, does not regulate the prices set by the companies who manufacture, market and distribute the medicine - LeafLine Labs and Minnesota Medical Solutions are the two manufacturers approved in the state.
At least one state, New York, does regulate prices for its medical cannabis program. There, registered organizations submit costs to the state program.
The commissioner then determines whether the prices are reasonable once the cost of production and profit is taken into account. Prices reported in New York, however, weren't much cheaper than the prices cited by Nelson and Bennett.
Dan Brinkhaus, a New Prague parent who founded the Minnesota Rett Syndrome Research Association, said it's discouraging to hear about costs when the effects of medical cannabis are so encouraging.
"We've heard big success stories around medical marijuana," he said. "(The cost) really is frustrating."
Just like Bennett and Nelson, Brinkhaus isn't able to afford the treatment for his child. The parents still maintain hope that their loved ones will be able to experience the benefits, even if they know it might not be anytime soon.
Nelson's daughter did qualify for a trial in which she'd receive a year's worth of treatment. The timeline keeps getting pushed back though, Nelson said.
Bennett, meanwhile, said he's looking to the legislature to take the necessary steps to help make sure the program is affordable. He and other local families are regularly in touch with Rep. Clark Johnson regarding their concerns.
Although it's not clear what can be done at this point to address accessibility and cost, Johnson said it's certainly a big enough concern to explore further.
"It's something that's important to a number of my constituents, and it needs that kind of energy through the rest of the state to have a serious discussion," he said.
After saying the program has had an encouraging start, he wondered if the Legislature was perhaps overly cautious in crafting the bill.
Although it's tough seeing his daughter have multiple seizures per day knowing medical cannabis could help, Bennett said all he can do for now is practice patience.
"What's happened has been a good step forward but there's a long way to go," he said. "I would say what I'd really like to see is have it be treated like any kind of medication."
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: With Medical Cannabis, Only High For Hopefuls Is Cost
Author: Brian Arola
Contact: 507-625-4451
Photo Credit: Brendan Smialowski
Website: Mankato Free Press
A year ago the Mankato mother and her daughter, Rachael, became something like the faces of the local push for medical cannabis. They and other families of children with Rett syndrome, a condition causing daily seizures, hoped legalization would lead to much needed relief.
The reason the Nelsons aren't signed up isn't because medical cannabis doesn't work. It's because they can't afford it. And they're not alone.
Several area families of children with Rett syndrome haven't been able to sign up due to exorbitant costs that insurance won't cover.
Nelson said her daughter's treatment would cost $500 a month. As a widow of five children, that price is too steep.
"My other children know that seizures are a part of life and I prefer that they didn't know they were part of life," she said. "There's a medicine out there and I just wish we could afford it."
Like others in the area, Nelson said she experienced sticker shock once the medical cannabis program started.
Jason Bennett, of Mankato, said his daughter, Ashlyn, tried the CBD, or cannabidoil meds, for a couple months last year. The cost doubled after one month once the dosage was increased, and the uncertainty of cost from month to month forced them to drop out.
"I can't even get to the point of seeing if it works because it's cost prohibitive," Bennett said.
On top of the cost, the accessibility was a major issue for the Bennetts. They had to drive to LeafLine Labs in Eagan to fill out their prescriptions.
Bennett said it's frustrating to be able to fill out a prescription down the street for a range of other medications, but then have to drive more than an hour for another legal medication. To him, it further feeds into the stigma still attached to marijuana as a medicine.
"It makes you feel like you're doing something wrong, and at the end of the day I'm trying to make my daughter better," he said.
Concerns like these aren't limited to the Mankato area. A recent survey from the Minnesota Department of Health found 73 percent of respondents reported the cost of medical cannabis to be unaffordable.
Meanwhile, 90 percent of those surveyed reported "mild to significant" benefits paired with few side effects.
Michelle Larson, director of the Minnesota Department of Health's office of medical cannabis, said she wasn't surprised by the effectiveness of treatment or the costs.
Medical cannabis, like many other prescription medications, is expensive when it has to be paid for out of pocket, she said.
"We know that costs are prohibitive and we are concerned about it," she said.
Nelson said her insurance doesn't cover medical cannabis because of its status as a Schedule I controlled substance under federal law. Despite medical cannabis being legal in half the states, federal law considers it to serve no medical purpose.
Minnesota, like most states with medical marijuana, does not regulate the prices set by the companies who manufacture, market and distribute the medicine - LeafLine Labs and Minnesota Medical Solutions are the two manufacturers approved in the state.
At least one state, New York, does regulate prices for its medical cannabis program. There, registered organizations submit costs to the state program.
The commissioner then determines whether the prices are reasonable once the cost of production and profit is taken into account. Prices reported in New York, however, weren't much cheaper than the prices cited by Nelson and Bennett.
Dan Brinkhaus, a New Prague parent who founded the Minnesota Rett Syndrome Research Association, said it's discouraging to hear about costs when the effects of medical cannabis are so encouraging.
"We've heard big success stories around medical marijuana," he said. "(The cost) really is frustrating."
Just like Bennett and Nelson, Brinkhaus isn't able to afford the treatment for his child. The parents still maintain hope that their loved ones will be able to experience the benefits, even if they know it might not be anytime soon.
Nelson's daughter did qualify for a trial in which she'd receive a year's worth of treatment. The timeline keeps getting pushed back though, Nelson said.
Bennett, meanwhile, said he's looking to the legislature to take the necessary steps to help make sure the program is affordable. He and other local families are regularly in touch with Rep. Clark Johnson regarding their concerns.
Although it's not clear what can be done at this point to address accessibility and cost, Johnson said it's certainly a big enough concern to explore further.
"It's something that's important to a number of my constituents, and it needs that kind of energy through the rest of the state to have a serious discussion," he said.
After saying the program has had an encouraging start, he wondered if the Legislature was perhaps overly cautious in crafting the bill.
Although it's tough seeing his daughter have multiple seizures per day knowing medical cannabis could help, Bennett said all he can do for now is practice patience.
"What's happened has been a good step forward but there's a long way to go," he said. "I would say what I'd really like to see is have it be treated like any kind of medication."
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: With Medical Cannabis, Only High For Hopefuls Is Cost
Author: Brian Arola
Contact: 507-625-4451
Photo Credit: Brendan Smialowski
Website: Mankato Free Press
