Friday , August 04, 2017 - 5:15 AM
Box Elder County Commissioner Stan Summers, right, stands next to his son Talan Summers, 26, and wife Jennifer Wednesday, Aug. 2, 2017, at their home in Tremonton. Talan can usually only sleep about four hours a night due to pain from IgG4, a rare systemic sclerosing disease.
BRIGHAM CITY — During a recent public hearing about Utah’s medical cannabis initiative, Box Elder County Commissioner Stan Summers stood and spoke in favor of the citizen-led legislation.
But Summers is no hippie stoner hoping to revive the decade of sex, drugs and rock ‘n roll.
“We’re not talking about Cheech and Chong here. We’re talking about right and wrong,” Summers said in a recent phone interview. “The ’60s are over, and we should be able to do these things right.”
Summers’ support of legalizing marijuana for medicinal use stems from the plight of his son Talan, who was diagnosed six years ago with IgG4, an extremely rare systemic sclerosing disease. In high school, Talan was a championship athlete, but now he battles constant pain and a win is when the food he just ate doesn’t come back up.
“In November, he was on hospice because of his lung function. But we got kicked off of hospice because he wasn’t dying quick enough,” Summers said of the harsh realities of trying to connect the dots in the current health care system.
For now, Talan is in palliative care at home. But comfort and rest remain sporadic and elusive.
“He throws up almost constantly. His guts are hardening from the inside out, sort of like Multiple Sclerosis, but he’s sclerosing in his muscles and guts. It got into his lungs and esophagus last year, and we’re not sure if it’s affecting his liver and heart,” Summers said, adding that his one-of-a-kind son is afflicted by a disease that affects one in 50 million — so rare that federal FDA-approved drugs are limited.
Sclerosing is defined as a thickening or hardening of a body part or system.
“We’ve run the gamut with pain pills and injections,” Summers said. “I support medical cannabis because I think God put everything on this earth for a purpose, and it’s up to us to figure out the good and bad in everything we have.”
According to Summers, Talan did give cannabis a try in paste form. He couldn’t smoke it because of diminished lung capacity. And Summers witnessed the young man who could barely sleep four hours a night due to pain snooze for eight straight. But that much-needed rest came with a downside.
“It gave him the munchies, and with his disease it made him throw up even worse,” Summers said, adding wryly that “if we do the medical cannabis, what’s the worst side effect — that we’ll run out of Doritos?”
The Utah Patients Coalition (UPC) is spearheading the drive to get medical cannabis legislation on the 2018 ballot. The group of patients, caregivers and advocates formed a political issues committee and began wending its way through Utah’s ballot initiative process. The Brigham City public hearing was one of eight held July 26-29 around the state — seven are required by law.
By phone Tuesday, UPC Director DJ Schanz said feedback from the hearings was overwhelmingly positive and in some ways surprising.
“In most of the cities, largely senior citizens showed up — and we were shocked by that,” Schanz said. “The public input was 95 percent in support of what we’re doing. Some input was why not allow smoking or homegrown.”
A survey of likely voters conducted in February by Fairbank, Maslin, Maullin, Metz & Associates (FM3) found that 73 percent of Utahns would back a ballot initiative that allows doctors to recommend medical marijuana to treat cancer, epilepsy, Alzheimer’s and other serious illnesses. And a more recent Dan Jones & Associates poll conducted in June indicated 78 percent support to legalize marijuana use for people with serious medical conditions.
Verne Larsen, a longtime educator and substance abuse prevention coordinator, spoke as the lone dissenter at the Brigham City hearing that drew about an audience of about 40 people. As he sees it, legalizing medical marijuana would put youth at risk for substance abuse problems.
“We’ve learned there are certain factors that put our kids more at risk, one being perception of harm. If the perception is that it’s not very harmful, the more apt they are to use it ... and we have seen that marijuana use increased among young people in some of the states that have implemented marijuana programs,” Larsen said. “And the other factor is availability. When a certain drug is more available, that increases the likelihood of increased use among youth.”
Larsen cited a study released in September 2016 by Rocky Mountain High Intensity Drug Trafficking Area showing increases in youth use and marijuana-related traffic deaths after recreational marijuana was legalized in Colorado. The Rocky Mountain HIDTA — part of the Office of National Drug Control Policy — works to coordinate federal, state and local drug enforcement efforts to combat drug trafficking.
Larsen said he was moved by patient testimonials, but would prefer to see the FDA process speed up to allow for the necessary trials and research that would validate medicinal uses of cannabis.
“We’re trying to make marijuana legal, but alcohol is legal and we have more problems with that than any other drug,” Larsen said. However, he made it clear he wasn’t wanting to return to the days of prohibition. “I have a lot of friends who are social drinkers. It’s the abuse of it that causes problems.”
On July 25, the Governor’s Office of Management and Budget released its one-page fiscal assessment for the proposed legislation, estimating one-time costs of $1.1 million and $1.8 million in ongoing costs — of which $1.4 million would be offset by fee collections.
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By mid-August, UPC expects to have petitions in hand, ready for voters to sign. According to state law, a 2018 statewide ballot initiative requires 113,143 valid signatures that meet specific thresholds for at least 26 of the state’s 29 senate districts.
“We’re planning to get all 29 just to cover our bases,” Schanz said. “Our deadline is April 15, 2018 but we look to be done by Jan 1, 2018 to preclude the Legislature.”
He also described their medical-use-only measure as conservative and regulatory, noting “we looked at everything we could do to craft a bill to prevent abuse.”
For some, a sense of urgency
To date, contributions to Utah Patients Coalition have totaled $46,617, of which $25,000 came from Lehi-based Libertas Institute in May. Connor Boyack, president of the libertarian think tank, explained his organization’s ongoing efforts.
“We’ve been working on the issue of medical cannabis for about four years and strongly believe that individuals suffering from various diseases and medical conditions should not be subjected to criminal penalties,” Boyack said. Our efforts in this area are part of a broader interest in criminal justice reform which has led to various legislative proposals on other issues.”
An active advocate on Utah’s Capitol Hill, Boyack believes Utah lawmakers have been unresponsive to the needs of patients to legally have access to medical cannabis.
In 2014, Utah lawmakers passed Charlee’s Law, making it legal for patients to possess and use low-THC cannabidiol with their doctors’ consent. But in 2015 and 2016, hard-fought attempts to pass a broader bill to allow doctor-recommended cannabis for nine medical conditions failed. And legislation approved in 2017 allows limited cannabis use related to specific research studies.
According to the National Conference of State Legislatures, 29 states have legalized medical cannabis so far, along with DC, Guam and Puerto Rico.
But Utah’s slow plod led Boyack to funnel advocacy dollars toward the Utah Patients Coalition to help with advertising as the initiative drive got under way.
“We’ve been very active on this issue, and I know all the people on the political issues committee, so we were a natural organization to first lend support,” Boyack said.
But over the past four years, not all patients have remained in the fight.
“I’ve become friends with many of these patients and unfortunately not all of them survive,” Boyack said. “So we have a sense of urgency on seeing the law change, and that’s why we prefer not to continue to beg the Legislature. Instead we’re focusing on shifting public opinion and bringing awareness to their stories.”