SALT LAKE CITY — When Malinda Heiner was 16 months old, a 53-minute seizure changed the course of her life forever.
Malinda's brain suffered so much damage that she hasn't stopped seizing since.
Now 14 years old, Malinda has 30 to 40 seizures a day. She's confined to a wheelchair, not speaking, not communicating, but seizing all the time.
Medicine has only caused more issues, says her mother, Melanie Heiner. Instead of stopping Malinda's seizures, they've only disrupted her appetite and sleep.
On Wednesday morning, Heiner, her daughter and about 30 other people stood in the Capitol rotunda and called on lawmakers to take a second look at a bill to legalize medical marijuana.
"We are trying to give our children the best we can give them," Heiner said. "She's a person, just like me."
This will be Utah's second attempt to pass a law that would allow patients with qualifying illnesses to access and use cannabis. Last year, the bill sponsored by Sen. Mark Madsen, R-Saratoga Springs, failed to pass the Senate by one vote.
At the news conference, Libertas Institute president Connor Boyack and Salt Lake County District Attorney Sim Gill urged lawmakers to come up with a medical marijuana program.
Gill said medical marijuana legalization is part of a wider rethinking of a criminal justice system that has often punished people for mental illness or other health issues.
He pointed to Enedina Stanger, a Utah mom who was booked into jail for smoking marijuana to fight the nerve pain from advanced Ehlers-Danlos syndrome. She was later charged with third-degree endangerment of a child.
"These are not the people I want to be prosecuting," Gill said.
The problem, he added later, is “forcing them to enter the criminal justice system in the first place."
But opponents have raised concerns that scientific evidence is thin.
The Utah Medical Association opposes legalization until more research on the medical uses of cannabis has been collected.
"It would be unwise to begin using medical cannabis without real clinical and empirical evidence for beneficial use of a potentially harmful drug," former association president Dr. B. Dee Allred said in a statement last May.
Dr. Lynn Webster, a longtime former pain management clinician in Salt Lake, agreed more research is needed. But he said studies in other countries have shown that marijuana has big benefits and few comparative risks.
It's true, Webster said, that doctors don't know how much of a particular cannabinoid will produce a given effect, or for how long it needs to be given, or how frequently.
But "the truth is, we don't always know how most medicines are going to work with patients until we prescribe it to them," he said.
Compared with prescription painkillers, which are powerful and highly addictive, marijuana is a safer option, Webster said.
"I want the science to help me determine what's best for my patients, but sometimes you have to step back and take a look at (how) today we don't have good treatment options," he said. "We can't let these people suffer."
Others have raised concerns that legalizing medical marijuana will start Utah down a slippery slope toward recreational legalization.
Erin Worland, of West Jordan, testified at a Health and Human Services meeting in October about her concerns.
Her 13-year-old son was hit and killed in 2011 by a driver who was later found to have THC in his system.
"I relive it every day," Worland said. "He just had to cross one street to the school on the other side."
Worland said she's not necessarily against the legalization of medical marijuana if it's strictly regulated.
But "if you were to ask my opinion, I don't want to see any other kids get killed because of a legalization that causes more drivers to be high," she said.
Lawmakers will debate two bills regarding medical marijuana this legislative session. Madsen authored one of them. The other is being sponsored by Sen. Evan Vickers, R-Cedar City, and Rep. Brad Daw, R-Orem.
The second bill is more limited and would build on a 2014 law that allowed Utahns with epilepsy to get trial access to hemp oil.
Vickers and Daw are proposing to expand access to the oil, which contains a non-psychoactive extract of cannabis called cannabinoid, or CBD
Marijuana has several active chemicals, of which CBD is only one. It's another extract — tetrahydrocannabinol, or THC — that causes the psychoactive effects of marijuana — the so-called "high."
It is also THC, not CBD, that some people say helps with their medical conditions ranging from cancer to ALS to chronic pain.
Under the bill sponsored by Vickers and Daw, cannabis products with THC would still be illegal. Boyack and others at the conference said that's too limiting.
Candy Wagner, a South Jordan mom, was devastated when her 24-year-old son was diagnosed with a brain tumor five years ago. Wagner said she and her husband have tried everything for him, including hemp oil, under Charlee's Law.
But it had no effect. Doctors at the Mayo Clinic said her son's only other option was to get a risky and experimental surgery.
So Wagner packed up her son's medical records and drove eight hours to Colorado to get THC.
Now, five years later, her son's seizures have nearly disappeared.
Wagner, her voice breaking, called it "a miracle."
"God put this plant down here for a reason," she said. "We need to use it. We need to use it the right way."
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