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Kylie Popalo

This photo of Kylie Popalo of Lemoyne was taken two years ago. Now at age 11, Kylie suffers from intractable epilepsy and family members believe legal medical marijuana could positively affect her treatment.

submitted photo

Tracy Popalo of Lemoyne never thought she’d be an advocate for medicinal marijuana — but, then again, she also never thought she’d have to watch her 11-year-old daughter suffer from otherwise untreatable epilepsy.

Kylie Popalo endures 80 seizures per day despite medicines that are causing her liver and kidneys to fail, her mother said. Without the medicine, her seizures would increase and eventually build to status epilepticus, a potentially fatal state of persistent seizure, she said doctors have told her.

“She’s been on nine different medicines, and none of them have worked,” Tracy Popalo said. “I watch her suffer every day. Every single day, she kinds of introverts herself more and more to where she barely gets out of bed anymore.”

Popalo heard about Charlotte’s Web, a strand of marijuana said to reduce otherwise untreatable epilepsy. That bit of information, however, came from an unlikely source — Popalo’s mother.

“She’s the most straight-laced Republican ever,” Popalo said.

Her mother researched possible treatments and found the story of Charlotte Figi in Colorado, whose life-threatening seizures were 99 percent cured by the cannabis strand, and urged Popalo to look into it.

“I was like, ‘Are you kidding me? What are you talking about? I’m not giving my kid marijuana.’ That’s what my mindset was,” Popalo said.

In Charlotte Figi’s case, the cannabis is administered via oil, not smoked, and contains a low about of THC, the primary psychoactive ingredient in marijuana. Besides, Kylie’s other options were grim, including risky brain surgery to remove part of her left frontal lobe, Popalo said.

“To me, that’s not an option when there’s something out there that is so much better than taking a portion of my daughter’s brain out,” she said. “I’m tired of watching my daughter die. I want her to have a normal life, like every 11‑year‑old child has.”

Legalization

Medical marijuana is illegal in Pennsylvania, so Popalo and her mother joined an advocacy group of about 250 people related to children suffering with epilepsy that is pushing for the oil’s legalization. She also began petitioning Gov. Tom Corbett for an audience.

Corbett has pledged to veto any medical marijuana bill, although an administration spokesman said on Wednesday that he would be open to the use of medical marijuana if approved by the U.S. Food and Drug Administration.

That’s not enough for Sen. Daylin Leach, D‑17, the state senate’s most ardent proponent of medical marijuana, especially since the U.S. Department of Justice has said it won’t enforce laws that would forbid its use.

“We’re not going to get a letter from the FDA saying the states can do this,” he said. “What we have is a letter from the attorney general saying the states can do this.”

But some local officials agreed with Corbett that Pennsylvania should be wary of embracing a drug that is not approved by the FDA.

“I don’ think that we as a community should be put in the position of choosing which illegal drugs (are acceptable),” said state Sen. Pat Vance, R‑31.

Vance said she empathizes with people whose children suffer from epilepsy, and is pushing for local medical organizations that treat childhood epilepsy to become involved in FDA medical marijuana trials, she said. But right now, she said, there is no scientific evidence that cannabis oil is effective or even safe.

“There is absolutely no assurance it’s going to work,” she said. “I would be concerned that it might do some harm along the way, too.”

Jack Carroll, executive director of the Cumberland‑Perry Drug and Alcohol Commission, has similar concerns with medical marijuana in general.

“Most medications have to be approved by the Food and Drug Administration,” Carroll said. “Why should we set up a different system for marijuana? It seems to me that it should be held up to the same standards as other medicine.”

The commission issued a statement opposing medical marijuana in 2010 that Carroll said is still an accurate representation of the commission’s views on the issue.

“There are over 10,000 scientific studies that have concluded that marijuana is a harmful and addictive drug,” the commission wrote in a statement. “There are no recognized studies that demonstrate marijuana has any medical value. We believe the negative public health consequences far outweigh any possible benefits.”

Even if proponents of medical marijuana don’t intend to increase recreational use, more cannabis available will mean more cannabis smoked, Carroll added.

“If you legalize it for medicinal or recreational purposes, it makes it more OK,” he said. “The reality is more people in general, including young people, will smoke marijuana, and from a public health standpoint, that’s a step backwards, not a step forward.”

The arguments in favor of medicinal marijuana — including those for the Charlotte’s Web oil — are based on emotional appeals, not science, he said.

“Our primary concern is that there is not good scientific evidence that smoking marijuana is a good medical practice,” he said. “I think that our public policy should be driven more by research.”

Proponents

However, Leach said he thinks children can’t wait that long, especially since current medications are potentially addictive and harmful and aren’t ultimately successful in treating certain forms of epilepsy.

“There are clinical trials ... but in the meantime, these kids are going to die,” he said.

The lack of scientific research currently existing is part of a catch-22, he said: research isn’t conducted because marijuana is federally listed as a Schedule I substance with no accepted medical use, and marijuana has no accepted medical use because research into its usage hasn’t been conducted.

Popalo’s mother isn’t the only Republican passionately calling for medical marijuana legalization. State Sen. Mike Folmer, R‑48, whose district includes portions of York, Dauphin and Lebanon counties, joined Leach in November in introducing a bill that would legalize the Charlotte’s Web oil.

“I know I shocked a lot of people,” Folmer said, but he isn’t backing down. “I’ve never felt more right on a bill than I’ve felt on this bill.”

As a conservative, Folmer doesn’t think recreational use of marijuana is a good idea, but he said he thinks medical marijuana should be legalized for the same reason that other potentially addictive and harmful drugs such as oxycodone are legalized — under a doctor’s supervision, they can also help.

“I’m talking about giving a sick person one more weapon in their medical arsenal as approved by a doctor,” he said. “If we’re going to be fearful of (eliminating) the ban of marijuana, than let’s ban all the other stuff.”

Fulmer and Leach are focusing on the low‑THC cannabis oil for now, but both have said they’d like to ultimately expand medical marijuana to include other forms that could treat a variety of diseases, like cancer, diabetes and post-traumatic stress disorder.

That possibility concerns state Rep. Stephen Bloom, R‑199, who fears the potential for cannabis abuse.

“I’ve been concerned about it because, even in states where they have legalized marijuana for medicinal purposes, there have been problems with organized crime and other drug usage and so forth coming from it,” Bloom said.

Bloom said he could not support medical marijuana “unless it was medically and pharmaceutically standardized, and could be prescribed through the existing medical framework.”

Otherwise, he said, the pattern of gateway drug abuse can come into play.

“If you open up the market place, it brings about a path of negative consequences that I think (put our citizens at risk),” Bloom said. “Not all of the medical marijuana ends up in the right hands.”

Despite current opposition from some lawmakers, however, Leach said he believes the cannabis oil bill’s outlook would change if Corbett chose to support it. He called for Corbett to answer requests to meet with people like Popalo regarding the issue.

For her part, Popalo’s mission is to educate everyone from the governor on down about the possible benefits of medical marijuana.

“I would like people to make up their own mind, but after they educate themselves,” she said. “Everybody is entitled to their own opinion, but I think everybody needs to be fully educated on what the topic is about, and not just the word.”

Email Daniel Walmer at dwalmer@cumberlink.com

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