LUBBOCK, Texas — Casey Lusk used to walk up to 8 miles a day at work. Now, he has trouble walking 100 feet without two leg braces and a cane.
Lusk was diagnosed with Charcot-Marie-Tooth disease, or CMT, a rare neurodegenerative disorder that causes severe nerve pain, muscle atrophy, and difficulty walking.
“I was in so much pain that that’s all there was, 24/7,” Lusk said. He worries the progressive disease will put him in a wheelchair in the next five years.
That pain led him to take 180 opioid pain pills a month in the first two years of his diagnosis, a habit he knew he did not want to fall into.
“It scares me,” he said. “My brother had the same [disease]… he died of organ failure because of all the prescription drugs they were giving him… I don’t want to end up like my brother.”
Lusk is one of the more than 7,400 Texans benefiting from the state’s Compassionate Use Program, a narrow legal window that allows certain Texans living with serious diseases to treat their symptoms with low-THC oil. He says the program changed his life – he now only takes around 60 opioid pills per month, cutting his intake by two-thirds.
“Talk to any patient in the Texas Compassionate Use Program, and they will tell you a miracle story about how this is working where nothing else will,” he said.
HB 1535 passed with overwhelming majorities in the 87th Texas Legislative Session, expanding the program to all Texans living with cancer and PTSD. The law also increases the THC limit from 0.5% to 1%.
Patients like Julia Patterson, a 19-year-old freshman at Texas A&M University, tell those miracle stories to which Mr. Lusk alludes. She was a kindergartener when she was diagnosed with intractable epilepsy, and enduring brain surgeries and heavy medication prescriptions for 10 years before finding help in the Compassionate Use Program.
“Nothing worked. My doctors tried every conventional method, but I had 200 seizures a day,” she said. “Under the Compassionate Use Program, I was first prescribed medical marijuana and within just two months I was completely seizure-free.”
From once never expecting to even obtain her driver’s license, Ms. Patterson instead proceeded to become the valedictorian of her high school class, an honors student in college and Texas’ youngest registered lobbyist – a credential she has used to advocate for patients like her.
“I am living proof this medicine works,” she said.
Advocates say the expansion is a modest step in the right direction, yet they hope to see more inclusion in the future.
“We would like to see more people be able to get safe and legal access,” said Morris Denton, the CEO of the only licensed medical cannabis provider in Texas, Texas Original Compassionate Cultivation. “We frankly don’t see any reason for people with political science degrees to be telling people with medical science degrees what to do when it comes to treating people.”
They plan to be back lobbying lawmakers in 2023, but until then will find comfort in a cure that not long ago was a crime.
“I have medicine that works,” Mr. Lusk said. “No side effects, no addiction, and I know it’s not going to kill me. No amount of money can replace that.”