Medical marijuana can be a wonder drug for kids with severe epilepsy. So why are Wisconsin legislators stonewalling debate on the drug’s health benefits?
Being the parent of an epileptic child is a torturous cycle of unpredictable imminence. You don’t know when a seizure is coming, but it is. You see every stumble, every gaze held a little too long, as the first symptom of a fit. You try not to make your kid neurotic, so you learn to scrutinize peripherally. But there’s no way around it; epilepsy comes with a bit of neurosis for everyone involved. And you’d do anything to take the burden from your child.
As the father of an epileptic boy, I was stunned when I came across a newspaper photo of the parents of a child with severe epilepsy posing with Gov. Scott Walker. The Schaeffer family, of Burlington, had successfully lobbied the state in the spring of 2014 to legalize a form of marijuana for the treatment of childhood seizures. Their 7-year-old daughter, Lydia, suffered from seizures and was failing to respond to traditional treatments. The Schaeffers fought to bring a new drug to their daughter and had won. Or so they thought.
The medication, cannabidiol (CBD), is a non-psychoactive marijuana derivative that’s been shown useful in treating several medical conditions, including childhood epilepsy. Absent the properties that get a person high, CBD is extracted from a strain of marijuana named “Charlotte’s Web” after Charlotte Figi, the first epileptic child treated with the drug. Figi, from Colorado, was having 300 seizures a week but now suffers only a couple a month thanks to CBD.
Understandably, the Schaeffers couldn’t wait to try it for their daughter. But sadly, Lydia died on Mother’s Day, less than a month after the CBD bill was signed into law. She never received the promised drug. Nor, to date, have any other epileptic children in Wisconsin.
To pass the bill, an amendment was added requiring U.S. Food and Drug Administration approval to prescribe cannabidiol. A physician would need to gain FDA permission to set up a clinical trial for CBD to treat patients. For all practical purposes, the law was of little use.
Estimates vary on medical marijuana use. But research shows the health risk is far lower than the use of tobacco or alcohol. Alcohol poisoning kills an average of six Americans every day, or 2,190 deaths annually, according to the U.S. Centers for Disease Control and Prevention, while it is debatable whether anyone has ever died from marijuana. “Peanuts kill more people,” says state Rep. Melissa Sargent (D-Madison), who says she will introduce legislation this year to legalize recreational and medical marijuana.
I have seen firsthand the therapeutic benefits of pot. I watched a college friend, dying from cancer and frail from his treatment, overcome crippling nausea and pain with a few tokes on a joint. I have a family member who, despite having severe knee pain, hikes daily after a morning dose of his “medication.”
The U.S. Drug Enforcement Administration lists marijuana as a Schedule I substance, lumping it with other drugs that have “no currently accepted medical use and a high potential for abuse.” But compared with common prescriptions like opioids (Vicodin, Percocet, OxyContin) and benzodiazepines (Valium, Xanax, Klonopin), marijuana’s abuse potential is minimal.
Early this year, the American Academy of Pediatrics recommended removing the Schedule I status to make prescribing and researching marijuana easier. The scientific consensus continues to grow.
“We have been terribly and systematically misled [on medical marijuana] for nearly 70 years … I apologize for my own role in that,” wrote Sanjay Gupta, a neurosurgeon and correspondent for CNN, whose documentary “Weed” won a prestigious journalism award in January.
To date, 23 states have legalized medical marijuana, while four have legalized it for recreational use. Yet, in Wisconsin, we seem unwilling to have an honest conversation about the issue.
A Gallup research poll conducted in 2014 showed that 51 percent of Americans favor outright legalization; in Wisconsin, a 2013 Marquette Law School survey shows support at 50 percent. Meanwhile, a recent Fox News poll showed 85 percent support for the legal use of medical marijuana.
Gary Storck, a Madison-based advocate, believes Wisconsin’s failure to pass legislation is due to savvy political maneuvering by a few legislative opponents. “They have been particularly vehement in their opposition,” he says. As a board member for the League of Marijuana Voters, Storck helped lead a grass-roots effort last year that singled out two Republican state senators, Mary Lazich (New Berlin) and Leah Vukmir (Wauwatosa) for blocking meaningful medical marijuana legislation.
Vukmir has been especially resistant. In 2009, a public hearing was held in the state Capitol on medical marijuana. In her opposition, Vukmir lashed out at its sponsors, accusing them of using patients of cancer “as a shield” and “a ruse” to push for full legalization of marijuana.
She was roundly booed for her comments.
More than five years later, Vukmir, as the powerful chair of the Senate’s Committee on Health and Human Services, continues to stonewall, despite a national sea change on the issue. “It’s prejudice, it’s fear, it’s misinformation that keeps us from being further along on this issue,” says state Rep. Sargent.
In light of Lydia Schaeffer’s death, and the suffering of all the others who could be relieved of their pain, I add my own voice to the chorus of disgust.