Ryan Day has never used cannabis in his life. But he grows it, and extracts its oil to produce a certain compound to try to save his son Haiden’s life.
It’s the last thing Day wants to do after work every day, but, like other parents who use it as part of their child’s medical needs, Day feels like he doesn’t have any other choice.
“It’s simple market economics,” he explained. “My son gets 150 milligrams of CBD per day. The market price of that — if I bought it from a licensed store in Washington —would be about $54,000 per year.”
When Washington’s Cannabis Patient Protection Act was enacted last summer, the name alone might have suggested that patients who use medical marijuana would find additional relief when cannabis was legalized for recreational use.
Instead, for medically fragile patients and parents of medically fragile children, nothing could be further from the truth.
The 2016 act merged medical and recreational marijuana dispensaries, and now patients must purchase their product in stores previously considered recreational. Sales tax can be reduced slightly if patients voluntarily enter a state medical database.
Prior to the act, there were more than 1,500 medical dispensaries, and now only 220 stores statewide have received medical endorsements, meaning they have at least one employee trained to advise medical patients in their cannabis selections.
Day’s 8-year-old son Haiden has a severe and rare form of pediatric epilepsy called Dravet syndrome that can produce up to 10 grand seizures per day, mentally incapacitating him and preventing him from meeting normal childhood developmental or behavioral milestones.
Dravet Syndrome, characterized by seizures in the first year of life, is heat induced and can be brought on by a fever, warm bath or even a warm day outside.
Individual seizures can last for hours; Ryan timed one of Haiden’s longest at 45 minutes.
Most parents of kids with Dravet Syndrome come to medical marijuana as a last resort, Day explained.
“At some point most Dravet families will have their doctor tell them that there are no other medications to try and they cannot increase the dosages of current medications. That is when we get truly desperate,” said Day.
Day’s family moved from the East Coast to Seattle in 2013 because the cooler weather was more compatible with Haiden’s illness, plus medical marijuana was legal here.
Haiden, 4 years old then, had been steadily declining for the previous two years and was in the process of losing all of his skills and functions.
By November 2013, he lost his ability to communicate. Most of his days were spent highly medicated and unable to walk. He ended up in the ER at least once a month, and he was given rescue medications two or three times a month for seizures lasting more than five minutes.
Amber D. Lewis, a contract lobbyist in Olympia for a variety of clients, including the licensed and regulated cannabis industry, has worked with Day and his family to look for ways to change state policies and update the Legislature on the positive effects of medical marijuana.
“I met Haiden and fell in love with him,” Lewis said.
She said parents want and need a clean product that they can afford to purchase.
“There is very limited access to qualified medical marijuana in our state. We have parents that want to be guaranteed that it’s free of pesticides and safe for their children. There are no guarantees,” Lewis said.
Unfortunately, even if parents find that cannabis works for their children, payment options can be stark. Insurance does not cover medical marijuana, and an 8.8 percent reduction of sales tax for someone with a medical marijuana card is hardly a savings when they still have to pay the 37 percent excise tax.
Lewis said inorganic compounds such as lithium, a common drug given to children with seizures, are reimbursed, but can have significant side effects.
But a naturally occurring organic herb that often produces a significant reduction of seizures without the psychoactive results is not covered.
Dr. Brian Lawenda, a radiation oncologist, integrative oncologist and medical cannabis expert at Northwest Cancer Clinic in Kennewick, said that as long as all cannabinoids are classified as Schedule 1 drugs, most clinical trials through federally-sponsored institutions are going to prove difficult. (Schedule 1 is the same illegal, addictive category as heroin and cocaine.)
More studies are required to make cannabis a FDA-approved, medically reimbursable drug.
“It will require more safety research that proves to politicians that marijuana and the extracts of cannabis are safe. There need to be ways to monitor the use of these substances,” Lawenda said.
He also cautioned parents and medical users about stating that CBD-only products are safe.
“There is medical research now that shows that when CBD is used orally it does get converted to TCH when it passes through the gastric acid,” Lawenda said.
To Ryan Day, the ability to offer CBD oil has produced significant improvements.
When they moved to Washington, Haiden was on five different medications at maximum doses. Today, four years later, Day has eliminated all but two, one of which is at a half dose.
Today, Haiden receives his medicine twice a day, mixed into spoonfuls of applesauce. He has gotten all of his language back and has been adding new words to his vocabulary weekly, including starting to form sentences for the first time.
Ryan Day said Haiden also has not been to an ER since moving to Washington four years ago.
“Think of what my use of CBD for my son has saved the medical community,” Day said. “From the lack of ER visits to the reduction in rescue medications and seizure medications, we have saved tens of thousands of dollars a year, maybe even hundreds of thousands a year, by our use of cannabis.”
But Day still reflects on the changes to state recreational laws and the inability for cannabis to be directly prescribed, instead of the current set-up of medical cards and medical databases.
“The fact that parents have to grow and make their own medicine is ridiculous. No parent should be doing chemistry in their garage for their medically fragile child,” Day said. “In my ideal world, I don’t ever have to grow a cannabis plant again. It should be produced at pharmaceutical grade, it should be available and it should be covered by insurance.”
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