Minnesota pain patients plead case for expansion of cannabis program

On the last day of Thomas Shedd's life, there was no pain.

A few drops of cannabis extract a day had eased the pain of the cancer that had gnawed through his lungs to his liver and brain. Unlike the narcotics that left him feeling disconnected and drowsy, he said the marijuana tincture eased the pain quickly and still left him alert and aware.

He spent his final day looking into the eyes of the woman he loved. On Tuesday, she stepped up to a microphone at a forum called to answer the question of whether Minnesota should allow pain patients into the state's medical marijuana program.

"What we all fear at the end of life is pain. He died peacefully, with no pain," Vicki Buth said, wiping away tears as she shared her story with the state health commissioner and a room crowded with other people eager to weigh in on the issue.

Thomas Shedd was one of more than 600 Minnesotans who enrolled in Minnesota's medical cannabis program in its first months. The question now is whether the state will expand the fledgling program to potentially thousands more patients suffering the sort of intractable pain that does not respond to standard treatments.

The decision will be up to Health Commissioner Ed Ehlinger. An eight-member panel of health experts recommended against the idea, by a 5-3 margin, worried that opening the program would open up more opportunities for abuse and misuse of a drug that is still illegal at the federal level.

At Tuesday's hearing in West St. Paul, Ehlinger invited people with firsthand experience with pain to share their experiences. Some have used the drug legally, or illicitly. Some watched loved ones suffer. Some are suffering still. During the three-hour forum, nobody spoke in opposition to adding pain patients to the program.

"I hope you'll have mercy," said Martha Morse, describing the endless rounds of pain clinics, pills and experimental therapies that pain patients like her husband and 18-year-old daughter endure.

"There's not a day goes by that my daughter is not in pain," said Morse, whose daughter has been a pain patient since she was 15. "I get scared when she tells me, 'Mom, I don't know if I can take it anymore.' "

For three hours, the commissioner heard from people who say they wake up in pain, spend their days in pain and then lie awake at night because the pain won't let them sleep.

Gabriella McCann showed the commissioner graphic photos of her toddler, Elisa, who suffers from a rare and horrifying genetic condition that causes her skin to blister and bleed at the slightest friction. The strongest narcotics barely take the edge off her pain.

"I don't know how long she's going to live," McCann said. "I do know she will live in pain every day. … What I need? I need options for her. I need her to be free of pain and I want her to be happy."

Eight months ago, Sarah got a headache. The headache never went away. The young woman, who asked to be identified only by her first name, said she's had to stop working, stop seeing her friends and none of the treatments or appointments with physical therapists or neurologists has helped.

"The thought that there is something out there that could help me, that could give me some quality of life, could make me feel like my life is worth living — but I don't have access to that thing — is unbearable," she said, her voice shaking.

"It's not a panacea, we know that. We're looking for something that could make our lives a little bit easier."

Among the dozens who testified was state Sen. Chris Eaton of Brooklyn Center, the only Democrat in the Senate to vote against medical marijuana legalization.

She since has changed her mind. Cannabis, she hopes, can give patients a safer option than opioid painkillers and perhaps reduce the epidemic of narcotic overdoses.

"I would much rather see people using medical cannabis than opioids," said Eaton, whose daughter's 2007 death from a heroin overdose fueled her concerns about legalizing a federally controlled drug like marijuana.

"If we're going to allow medical marijuana for movement disorders, seizures and people with end-of-life situations, we certainly should allow it for pain."

Through it all, Ehlinger sat at a table in the front of a library meeting room, listening closely, occasionally asking questions.

He thanked those who testified for the courage they'd shown — in the face of injury and illness and the nerve-racking job of testifying in public.

He promised to weigh their testimony both as a doctor, sworn to keep the patient's best interests in mind, and as a public health official, sworn to do the same for the entire state.

"All of this has been very helpful. It's not going to be an easy task weighing the data, weighing the input, weighing the pros and cons, weighing the risks and benefits," he said. "But that's the job I signed up for. I take it very seriously, both as a physician, as health commissioner and as a person who lives in this state."

Ehlinger will have until the end of December to make his decision.

Whatever choice he makes will become state policy unless the Legislature acts to change it.

If he opts to add intractable pain, the first patients could join the program in the summer of 2016.

Jennifer Brooks • 612-673-4008