Putting a local face with the medical marijuana debate: Baytown family sees the drug as its ‘last hope’

By Jonathan Young

Emily Kargel, 9, of Baytown Township, has suffered from frequent seizures since birth.
(Photos courtesy of Kristy Kargel)

Kristy Kargel’s daughter Emily had her first suspected seizure 16 hours after her birth in March 2005.
Diagnosed a few days later with the potentially life-threatening bacterial meningitis and underdeveloped joints, she didn’t go home until Easter Sunday, at 25 days old. Less than 48 hours later, her seizures were getting worse, and she was admitted to Gillette Children’s Hospital.
Doctors thought her seizures would abate after they treated her infection and the swelling in her brain decreased. But the seizures didn’t stop.
Nine years later, Emily still has seizures.

She has generic diagnoses of intractable epilepsy and cerebral palsy, but doctors can’t pinpoint exactly how to help her. Although she’s tried 21 medications and had a vagus nerve stimulator device implanted, she continues to suffer from frequent seizures.

Kristy Kargel of Baytown Township sees medical marijuana as the “last hope” for her 9-year-old daughter, Emily. (Photos courtesy of Kristy Kargel)

Emily’s parents, who live in Baytown Township, feel they’ve exhausted their options. Except one — they want to try medical marijuana.
“I feel like it’s our last hope,” Kristy Kargel said.
According to Kargel, families in other states, such as Colorado, have reported significant improvement after using marijuana to treat conditions similar to Emily’s. Kargel says Emily’s neurologist would recommend the drug for her if it were legal.
“She’s on board with trying it as soon as it’s approved,” Kargel said.

But a bill that would legalize medical marijuana seems to be stalled in the Minnesota House after law enforcement groups opposed the bill. The proposed bill would allow doctors to recommend marijuana for a variety of medical conditions such as glaucoma, seizures and nausea in cancer patients.
Law enforcement groups that have opposed the measure include the County Attorney’s Association, the Chiefs of Police Association and the Sheriff’s Association. Many law enforcement officials fear it would result in more impaired drivers and teens gaining easier access to the drug.

Washington County Attorney Pete Orput said that when the County Attorney’s Association took its initial stance, which was adamantly opposed to any form of medical marijuana, he had qualms about the position.
“It didn’t take into account the number of letters from citizens talking about their children who needed to be treated,” he said. “I was one who urged some sort of compromise.”
He said the association softened its position and would be open to a compromise that would remove the smoking and home-growing provisions of the bill. He thinks that’s reasonable.

“I never want to get between a patient and a doctor treating the patient,” he said. “I feel really strongly about that.”
Washington County Sheriff Bill Hutton did not respond to requests for comment on the issue.
This isn’t the first time the Minnesota Legislature has debated legalizing medical marijuana. A bill that would have allowed doctors to prescribe marijuana to dying patients in hospice care passed in 2009 but was vetoed by then-Gov. Tim Pawlenty.
Gov. Mark Dayton said he will not support the law unless a compromise can be reached with law enforcement.

Rep. Kathy Lohmer, R-Stillwater, who sits on the Health and Human Services Policy Committee, agrees with Dayton on this issue. The committee approved the bill and referred it to the House Government Operations Committee earlier this month. But Lohmer said she can’t support the legislation as it is written.
In Lohmer’s view, the fact that the bill would allow patients to grow and smoke marijuana is problematic. She said an amendment that would have eliminated those provisions failed in the Health and Human Services Policy Committee.

In any case, law enforcement support appears to be non-negotiable for Dayton’s approval and Lohmer’s.
“I wouldn’t support it without law enforcement support,” Lohmer said.
In addition, she felt that the question of whether to legalize marijuana would best be left to the federal government rather than states. She said the Food and Drug Administration plays an important role in the nation by regulating drugs, because it would be costly and cause enforcement problems if states had to do so.
Lohmer added that she was moved by the stories and testimony of those who support legalization and isn’t being “hard nosed.”

“I have a heart for people in suffering,” she said. “I have a son who’s had over 70 surgeries. I know what it’s like to watch my child suffer. I empathize with them. … I hope we can work it out.”
But she expects it will take time.
At this point a compromise seems unlikely this session. The bill’s author, Rep. Carly Melin, DFL-Hibbing, asked to postpone a March 11 hearing in the House Government Operations Committee, after she said law enforcement groups remained opposed to the proposal, even with changes that would narrow the permitted uses for marijuana and prohibit smoking it or growing it at home.

On March 13 the Minnesota Medical Association also announced that a statewide survey of doctors and physicians-in-training indicated that nearly 46 percent of more than 850 respondents wanted the association to oppose the legislation. Only 34 percent supported the legislation, while 9 percent favored no position and 10 percent said they didn’t know. The group does support further research into potential benefits of medical uses for the drug, however.

For Kristy Kargel, the delay is frustrating.
“It makes me feel desperate,” she said. “It’s here in our country, but we don’t have access to it.”
That’s difficult for her to swallow, especially considering that in the past, Kargel and her family were desperate enough to purchase medications available in Canada and France before they were approved by the FDA. And she doesn’t understand why there is so much fuss over medical-grade marijuana that would be prescribed by a doctor and dispensed at a controlled site — she’s not looking to grow marijuana at home or smoke it.

“The reason why we really want to try cannabis is because it’s pure — it’s a plant,” she said. “It’s not street pot.”
She and her husband hope it would be effective in controlling seizures, and they also hope it wouldn’t have the awful side effects many of Emily’s medications have.
Although 20 other states have legalized the drug, Kargel says it wouldn’t be practical for her family to move out of Minnesota.

In the meantime, as lawmakers continue to debate, Emily’s condition is getting worse. It’s been especially bad since last fall. When she had a brain scan in December, the results were so bad the doctor couldn’t tell where one seizure stopped and the next began — she appeared to be constantly moving from one seizure to the next.
“It is literally becoming a life and death situation for us,” Kargel said. “At some point her brain and her body aren’t going to be able to take it.”

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