Sunday , March 06, 2016 - 5:28 PM8 comments
SALT LAKE CITY — How Utah lawmakers vote on medical marijuana next week will in large part determine future plans for Lindsay Sledge and her husband.
Their youngest daughter, 2-year-old Paloma, suffers from Dravet Syndrome, which causes severe and frequent seizures. The family of five moved to Ogden about 18 months ago.
“With Charlee’s Law we were hopeful we’d be able to get cannabis. We thought OK this will be a great place, we bought a house, we plan to stay here and be part of the community. We have a lot riding on this,” Sledge said.
In 2014, the Utah Legislature passed HB105, known as Charlee’s Law, which allowed Utahns with epilepsy to possess and use hemp oil containing less than 3 percent Tetrahydrocannabinol (THC), the psychoactive component in cannabis.
Unfortunately, Sledge found that Paloma required a higher level of THC to maintain a reasonable quality of life.
“Without it, we’re constantly in the emergency room, and she has seizures that last three to four hours. They only stop with adult-sized doses of dangerous medicines that make her stop breathing,” Lindsay said. In Paloma’s case that meant valium in adult-sized doses.
“It has horrible side effects. She can’t walk for days after, she can’t talk, she screams. She’s 2 years old and she doesn’t understand why her legs suddenly don’t work,” Sledge said. “Cannabis has the power to stop her seizures without the side effects.”
Sledge acknowledged that she isn’t looking for a cure. But she knows her daughter’s seizures can be reduced in fury and frequency by cannabis, and life can then be manageable.
Two medical marijuana measures are pending in this year’s Legislative session.
SB89, a low-THC Cannabidiol oil bill sponsored by Sen. Evan Vickers, a pharmacist from Cedar City and Rep. Brad Daw, a software engineer from Orem. Both Daw and Vickers are Republicans and their measure has the support of the Church of Jesus Christ of Latter-day Saints.
SB73, a whole plant medical marijuana extract bill sponsored by Sen. Mark Madsen, R-Saratoga Springs and Rep. Gage Froerer, R-Huntsville. This bill has broad support among patients battling rare diseases, chronic pain and PTSD. But the LDS Church, Utah’s prominent faith, has come out against it.
On Friday, Sledge joined other patient advocates and interfaith leaders on Utah’s Capitol Hill to urge lawmakers to have compassion and approve SB73.
Rev. Monica Hall of Trinity Presbyterian Church in Ogden spoke on behalf of Sledge and others who battle debilitating diseases and chronic pain.
“Lawmakers and clergy alike have all taken vows to tend to the weak and the suffering and the vulnerable of our state,” Hall said, pointing to the tireless efforts of patient advocates to alert lawmakers to the heavy burdens they bear and the potential for relief through legalized medical cannabis. Sledge’s family is part of her congregation.
“I stand here today for Paloma and her family,” Hall said. “It’s both a physical tending as well as a spiritual one, because I believe at its best, it’s advocating for sensible and responsible help from our local government. We’re not asking for everyone in Utah to have access to cannabis. For lawmakers to frame it in such a way is deceitful and very disappointing.”
At odds, a tale of two bills
While SB89 approaches cannabis primarily from a medical and law enforcement perspective, SB73 is propelled by a broad group of patients and the growing desire for an alternative to opiates to deal with chronic pain.
A group of patient advocates called TRUCE have vowed to pursue a ballot initiative if lawmakers fail to pass SB73. And polls indicate widespread public support in Utah for legal medical marijuana.
On Friday, Kaysville resident Christine Stenquist, founder of TRUCE, again urged support of SB73. In 1996, she was diagnosed with a brain tumor and the night before surgery she remembers making a deal with God. “If you let me live and come back to my babies, I will be your mouthpiece however you need me,” she recounted. “And I truly believe that’s why I’m here today, 20 years later, advocating for medical cannabis.”
A portion of the tumor still remains, and for 16 years Stenquist took prescription opiates and other heavy medications that rendered her bedridden but still in pain. Through whole plant marijuana, Stenquist said she was finally able to get off those medications, find relief and reclaim her life.
By phone Friday, Daw briefly explained the history and current status of SB89, a bill favored by the Utah Medical Association and many in the law enforcement community who have concerns about drug abuse and addiction.
“We started working on it about a year ago,” Daw said, noting that Dr. Perry Fine and former U.S. Congressman Chris Cannon helped shape SB89 by showing him the scientific literature and potential of cannabidiol oil.
Fine, a professor of Anesthesiology (Pain Medicine & Palliative Care) at the University of Utah’s School of Medicine, has testified at legislative committee hearings on behalf of SB89 and is listed as a medical advisor for a Draper-based ISA Scientific, Inc., a company whose mission is defined as improving health and quality of life through oral, non-psychoactive cannabis products.
Daw said that he remains opposed to SB73’s whole plant concept “because it’s not medicine.”
“I don’t know what’s in the plant, it could have any formulation you want,” Daw said. “Medicine to me is that you have predictable and accurate dosing, you know what it is, you understand what you’re taking and its consistent every time.”
Daw said he’s heard from patients and their parents, some with rare conditions who need a little different formulation. SB89 has been tweaked to allow cannabidiol oil to contain up to 10 percent THC.
“The THC helps the cannabidiol be much more effective,” Daw said. Since SB89 and SB73 both cleared the Senate, Daw said that frank discussions have taken place to determine how wide to open the door to address needs of the broader patient population.
“We’re getting close to an answer on that,” Daw said.
Cannon, who represented Utah’s 3rd Congressional District from 1997 to 2009, said his interest in cannabidiol oil dates back to the loss of his daughter Rachel to cancer in late 2004.
“A molecular biologist suggested that it would ease the pain my daughter was suffering,” Cannon said. That individual was Mark Rosenfeld, who later founded ISA Scientific, Inc. Attempts to reach Rosenfeld were unsuccessful.
“I’m thinking its worth it to accumulate data on cannabidiol oil and how it affects the body. I’d like to see a system in Utah where we can test it,” Cannon said. But he urged caution when it comes to THC. “We need to be very thoughtful before we jump into using it.”
But Cannon said he’s become comfortable with SB89’s 10 percent cap on THC, “largely because the doctors in the Legislature have convinced me that its worth pursuing scientifically. I’ve talked to several people at the Legislature recently and have been surprised at their interest in THC.”
Dr. Michael Holmstrom, an orthopedic surgeon and president of the Utah State Orthopedic Society, fully supports SB73 and whole plant medical marijuana and has testified in committee hearings on behalf of Madsen’s bill.
Holmstrom said that Charlee’s Law helped a very narrow group of epilepsy patients.
“Just over 100 people actually applied for it, and only about 70 or 80 actually used it again,” Holmstrom said, adding that SB89 would also have limited use.
But cannabis has several dozen active components that work synergistically when taken together, Holmstrom said of the “entourage effect” afforded by the whole plant. He also touted SB73’s allowed cannabis use to treat chronic pain as an alternative to highly addictive opioids that have led to an overdose epidemic nationwide.
For Holmstrom and many others, that aspect of SB73 hits close to home.
“I have a brother-in-law who struggled with opiates for more than a decade. He survived overdoses, ended up losing his wife and as of last year, he’s no longer with us,” Holmstrom said. “And my story is not unique. There are tens of thousands of Utahns who struggle with chronic pain. There are 80,000 to 100,000 who use opiates every day on a chronic basis, and people are dying from it.”
Utah’s 45-day Legislative session ends by midnight March 10, with hundreds of bills still awaiting debate. The two medical marijuana bills are slated to be heard by the House Health & Human Services committee at 10 a.m. Monday, March 7 in room 210 of the Senate Building on Capitol Hill. If the measures clear committee, they then advance to debate by the full House.
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