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This Missouri Mom Fought Hard For Medical Marijuana. Now She’s Fighting To Pay Its High Price.

Alex Smith
KCUR 89.3
Ashley Markum of Rogersville, Missouri, and her son Ayden, who has cerebral palsy.

It took years for advocates to get medical marijuana legalized in Missouri, but when it’s finally available in 2020, they may face an even tougher challenge: paying for it.

Ashley Markum of Rogersville, Missouri, the mother of a young son who takes CBD to control seizures, was heavily involved in the legalization push. This year, she helped start a charity called Ayden’s Alliance to help families like hers take on what’s likely to be the high costs of treatment. 

When her son Ayden was born 14 weeks early, he suffered a brain hemorrhage that left him with brain damage. Doctors discovered he had cerebral palsy.

Today, he’s 5 years old, mostly nonverbal and unable to move from his special chair.

Ayden has had low-level seizures since he was an infant, and they’ve been getting worse. Ashley and her husband Chris tried several anti-seizure drugs, but Chris said those made Ayden’s life miserable.

“Yes, it is incredibly important to control those seizures and stop that damaging brain activity, but at what expense?” Chris asked. “Some of the pharmaceuticals were just making him sedated, drool on himself, sleep all day long. You gotta look at quality of life.”

Credit Alex Smith / KCUR 89.3
KCUR 89.3
Ayden takes CBD oil to control his seizures.

Chris and Ashley found that CBD oil reduced Ayden’s seizures with minimal side effects, and the family recently discovered a THC inhaler that they say can stop a seizure while it’s happening.

When Missouri voters approved a medical legalization measure last year, it was pitched not only as a way to help patients, but also as a huge business opportunity. Experts think that it will live up to expectations — at least on the business side.

“In Missouri, it does seem like there’s going to be significant demand for medical marijuana,” said Eli McVey, research editor for Marijuana Business Daily, based in Denver.

McVey said that Missouri’s flexible rules for businesses and patients may eventually lead to relatively low prices, similar to those in Colorado, where an ounce of flower, which patients smoke, can cost as little as $75 to $100.

But in the first year or two, prices may start at three times that.

“In the early days of a market, growers might lose a crop to mold or mildew, or it might fail testing,” McVey said. “There’s kinks that have to be worked out in the supply chain when it’s first coming off the ground.”

Insurance doesn’t cover medical marijuana, and patients will need annual doctors’ exams to review their green cards. Plus there will be the $25 annual cost for the card itself.

And unlike prescription drugs, medical marijuana in Missouri will come with a 4 percent sales tax attached.

Adding up the costs

For patients like Ayden, who will probably use cannabis every day, that will add up to big out-of-pocket expenses.

“It is a huge burden on patients,” said Debbie Churgai, interim director of Americans for Safe Access, a medical marijuana patient advocacy group based in Washington, D.C.

A survey conducted by Americans for Safe Access found that nearly a third of patients across the country pay more than $500 a month for cannabis.

For many, the costs are simply too much. Churgai said that, after getting a green card, some patients end up buying marijuana on the black market, where it’s cheaper than in dispensaries. But it doesn’t undergo the careful testing that medical marijuana receives.

In some places that have legalized recreational marijuana, prices have dropped further and many of those states have gotten rid of the sales tax for medical marijuana.

But that hasn’t always benefited medical users.

Churgai is concerned that growers and sellers might abandon medical users to pursue the recreational market. They could, for example, stop producing the lower-THC levels of cannabis that are often preferred by medical users.

“When they have adult-use (recreational) programs come in, we don’t want that to end the medical cannabis program,” Churgui said. “We want to make patients the priority.”

She added that the only real way to make medical marijuana affordable is for insurance companies to start covering it.

Ayden’s Alliance recently raised about $6,000 to help 26 families pay for medical cannabis.

Ashley said the charity’s rules prevent her family from accepting donations, so she’s looking for other ways to pay an additional $500 per month – the cost she estimated they will incur for CBD and THC products, which she said has given her son a better quality of life.

“I don’t think we would have had the handful of words that he has said or the interaction or the purposeful things that he has done without cannabis,” Markum said.  

Alex Smith is a health reporter for KCUR. You can reach him by email at alexs@kcur.org

As a health care reporter, I aim to empower my audience to take steps to improve health care and make informed decisions as consumers and voters. I tell human stories augmented with research and data to explain how our health care system works and sometimes fails us. Email me at alexs@kcur.org.
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