Siblings Taylor and Caden Ryszka have lived with seizure disorders since infancy. As a child, Taylor, who does not walk or talk, experienced 5-6 tonic-clonic seizures a day. These events typically involved screaming and then several minutes of convulsions. Her brother, Caden, was chronically in a state of seizure. “His brain is active all the time,” doctors told the Ryszkas, which explained why his eyes always appeared to shimmer.
Taylor and Caden’s parents tried different therapies: ketogenic diets, an implantable device called a Vagus nerve stimulator, and anti-convulsant drugs, but none of these reduced the severity or frequency of the seizures. Caden was taking three times the adult dose of the anti-convulsant Depakote, and this made him “catatonic,” according to his father, Daniel. He began to develop regular lung infections, which worsened over time. The doctors were running out options and had to result with an experimental treatment. One was a drug used to treat lung infections for those with Cystic Fibrosis. This bought a little time, but he eventually had to enter hospice. “He was gonna die,” his father recalls.
The turning point for Caden and his older sister came when their father, a pharmacist in New York, finally succeeded in obtaining a recommendation for both children to receive medical marijuana. (Doctors do not issue prescriptions, since marijuana is still a Schedule 1 drug under federal law.) Within days, both children were more alert, their seizures reduced by 80%, and the events were milder. In Caden’s case, the therapy also improved his pulmonary health. He soon went off every respiratory medication that he had been using (inhalers, nebulizers, and a chest vest). His parents no longer had to spend eight hours a day on his respiratory therapy.
Ryszka began to share his experiences and then went on to co-found Medical Cannabis Connection, Inc., which provides information for patients, providers, and policymakers about medical marijuana in New York. He is also a certified practitioner for medical marijuana in the state, which means that he can work with doctors to recommend the therapy. He explains how medical marijuana allows individuals living with chronic conditions to shift attention from the future to the present. “It’s about better quality of life now, not waiting ten years for something to happen.”
In a phone conversation, Ryszka spoke about the varied political, ethical, and economic concerns that surround medical marijuana in his state and around the country. He also offered his opinion about where the industry is headed.
According to Ryszka, medical marijuana advocates have largely succeeded in persuading the public about the need for this therapy; it is doctors and policymakers who prevent the industry from fully developing. Both of the latter are beholden to the pharmaceutical industry, which is working frantically to stall activity until it can gain more control of the market. (The alcohol and tobacco industries also play a role, though neither is as powerful as “Big Pharma.”) Opposition to medical marijuana “is about money, not drugs,” Ryszka says. And this is a real shame, as access to quality healthcare and treatments is already difficult for those living with chronic conditions. “These individuals don’t need any more barriers to cross to get help.”
Some doctors are sympathetic to the cause but refuse to recommend the drug because of existing federal laws, which identify marijuana as a dangerous substance with a high potential for abuse. Many physicians have told Ryszka behind closed doors, “Look, I support what you’re doing here, but we need to wait for federal government.” The trouble is, the federal government is moving in the opposite direction. As 29 states slowly expand medical marijuana programs, Attorney General Jeff Sessions hesitates to admit that marijuana has any medical benefits whatsoever.
What exactly does Ryszka propose to make medical marijuana more affordable and accessible? First, he wants states to allow existing companies and distributors to grow so that patients have more options and better access. In New York, there are only five (soon to be ten) distributors, which sell only three strands of marijuana. Some patients do not benefit from one of those three strands. For instance, none of the three strands have a high cannabidiol (CBD) content, which some patients need. These patients could potentially benefit from other strands if the state relaxed restrictions.
The limited physical distribution means that patients who do not live close to a dispensary may be out of luck. In some cases, Ryszka says, patients drive 8+ hours to get a 30-month supply. Obviously, this prohibits a lot of people from gaining access. “What if someone doesn’t have a car and there are no bus routes? What if they can’t make this trip once a month?” Making matters worse, some dispensaries have very limited hours of operation. In some parts of the state, delivery is available, but this is far from the norm.
There are other structural barriers. For instance, patients normally need to take initiative, as providers are inclined to promote pharmaceutical treatments. Not all providers are willing to recommend medical marijuana, even if there is demonstrated need and clear evidence that other options have failed. This means a patient may have to visit multiple providers to find one who is willing. Of course, not all patients have the time or resources to devote to this task.
But suppose that a patient does find a willing provider. She then has to complete a lot of paperwork to be issued a card from the state. Once she has the card, she must visit a building where she is “processed like a prison inmate.” She meets a security officer, who surveys the entire process from the moment she walks in the door. Because medical marijuana is not covered by insurance, she has high out-of-pocket costs. Depending on the kind of product and the frequency of dose, the therapy could cost as much as $1000 per month after the state imposes its 55% tax.
“These are patients who have have ALS, Parkinson’s, Huntington’s disease. And they’re putting us through the wringer to get access to a product that saves our lives.”
It is difficult for Ryszka not to become frustrated about these barriers. “These are patients who have have ALS, Parkinson’s, Huntington’s disease. And they’re putting us through the wringer to get access to a product that saves our lives.” He makes a point that many other advocates routinely stress: “It’s a lot easier and cheaper to obtain narcotics.”
Speaking of narcotics, some studies suggest that expanding access to medicinal and/or recreational marijuana would reduce the risk of opioid abuse. When asked about this, Ryszka said, “It’s possible” and referred me to a University of Buffalo study supporting the idea. But he also admitted the need for more extensive research.
The curious part about the medical marijuana industry is the relative lack of oversight of patients who do manage to obtain the drug. Many providers have little to no training about the clinical effects of medical marijuana, and some are willing to let informed patients make recommendations about doses and combinations. Furthermore, as with other medications, patients are left to their own devices once the product is in their hands. Doctors cannot effectively ensure that they adhere to dosing regimens. Ryszka acknowledges that this kind of independence is unusual, and he anticipates that doctors and other authorities will eventually figure out ways to regulate patients with medical marijuana.
At the same time, Ryszka predicts that the legal, economic, and structural barriers may decrease as more and more states pass laws authorizing the recreational use of marijuana. In states like Colorado, individuals can experiment with different strands to find one that is therapeutic. Recreational marijuana has not put medical dispensaries out of business, as patients still desire product that have been tested for fungus, pathogens, and other impurities. They also want product that is guaranteed to have a certain consistency.
When will recreational use expand across the United States? “Ten years,” Ryszka forecasts. But this doesn’t necessarily mean that the federal government will downgrade its classification of the drug. Washington likely won’t budge on this matter until federal agencies and organizations conduct extensive research to support such a move—and that research is not likely to be undertaken until the pharmaceutical industry has found its foothold in the industry. So, even while access to marijuana increases across the nation, the disparities between state and federal policies may continue to widen.