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Spenser Heaps, Deseret News
Tom Paskett, policy director for Together for Responsible Use and Cannabis Education, a medical cannabis advocacy group, and Christine Stenquist, executive director of TRUCE, walk to meet with lawmakers at the Capitol in Salt Lake City on Tuesday, Feb. 6, 2018.

SALT LAKE CITY — As Rep. Brad Daw pushes for legislation addressing the cultivation and study of the plant in Utah, opposing sides of the medical cannabis debate still don't agree about whether his year-old research bill has delivered on its promises — or why it was passed in the first place.

Daw's 2017 measure, HB130, made it possible for a person to possess and distribute cannabis "to a patient pursuant to an institutional review board-approved study," according to summary text from the bill.

Daw lauds the measure — which passed the House of Representatives and Senate last year by overwhelming margins — as a critical way for patients to gain access in a way that ensures they are receiving safe treatment thanks to government regulations overseeing how clinical studies are performed.

"That's why we're encouraging people to start up these studies," Daw said. "We want people to get help but we want to do it in a way that ensures patients (are safe). My personal goal is anybody who has a legitimate need and would be legitimately benefitted — let's find a way to get them access."

But one year later, with just one organization actively running any such study, and with that research being limited to CBD oil, Daw's staunchest critic is wondering whether that was the plan all along.

"Daw's efforts were a vendor bill to help former Congressman Chris Cannon," Christine Stenquist, a prominent advocate for the broad legalization of medical cannabis, told the Deseret News in an email. "Advocates across the country are being alerted to this effort that started here in Utah. … I can't sit in silence while others (choose) to manipulate people for personal gain, again."

Cannon, a Republican representative who served as a member of Utah's congressional delegation for six terms, is chairman of Endo-C, the organization providing patients with CBD oil in longitudinal research as allowed for under Daw's bill from last year.

In an interview with the Deseret News, Cannon flatly denied Daw pursued the legislation in order to benefit either of the two men or Endo-C.

"This is an outrage that people would suggest Brad Daw has some kind of economic interest," Cannon said. "He does not. He's a friend; he's a man of vision. I think our visions are paralleled. But he has been scrupulous about not taking any kind of benefit out of that legislation (or) our relationship."

Stenquist, president of the advocacy group Together for Responsible Use and Cannabis Education, or TRUCE, said some of those who hope to benefit view the work being done by Endo-C as a business venture much more than an academic pursuit.

"We were promised by the sponsor of the bill … that there was real research going (to happen), and we actually don't see that currently," Stenquist said.

Part of what is frustrating about Endo-C's research, she said, is that it does not consist of a double-blind study, which "legislators … keep telling us they want" as a prerequisite for taking bolder steps to legalize medical cannabis.

Daw said accusations that his bill was designed to benefit any one person or organization are "patently ridiculous."

"I would encourage people to read from (the bill)," he said. "There's no mention of any (person); there's no mention of any direct benefit to any company. Any entity can create their own research project."

Daw also told the Deseret News that if his critics "don't like the research project, they are perfectly free to start their own," particularly cannabis legalization advocates who have "a huge network of patients by their own claim who could benefit from cannabis."

"All they have to do is track it and do it in the context of a research project," he said. "Why aren't they taking advantage of that mechanism that is in place right now?"

Cannon said Daw's legislation is a revolutionary way of promoting research of cannabis while simultaneously providing access.

"Utah is at the very front. There's no other place to even do these kind of studies," he said.

But what Cannon calls revolutionary, Stenquist sees as opportunistic. She said the work being done at Endo-C amounts to "more of a subscription to CBD oil" than an actual study.

"A lot of the complaints we're getting from patients is that they feel like this isn't really a research program, but more of a subscription to CBD oil and a limited CBD oil profile at that," Stenquist said.

Qualifying for CBD oil through Endo-C requires paying $280 per month, the organization says on its website.

Cannon said the payment requirement is an "atypical" way to fund clinical research, but necessary given federal regulations around marijuana, and in some ways even a trailblazing strategy that will be used by others down the road to make research sustainable.

"What we expect to happen here is that this becomes a model," Cannon said. "That model is that we are not being paid by insurance because it's a Schedule I drug. … The quality of our product and the consistency of our product and the doctor supervision are what cost money."

Cannon said he hopes insurance carriers eventually will be allowed to pick up the tab on behalf of qualifying subjects. He noted that there are price breaks available for students, members of the armed forces and law enforcement officers.

Endo-C's research is longitudinal, Cannon said, meaning it could track patients' results for several years. Those participating must also complete a questionnaire each month in order to continue receiving CBD oil, he said. There are certain age- and pregnancy-related restrictions as to who can take the substance, and anyone who qualifies must have the clearance of a doctor, Cannon added.

Endo-C is primarily interested in researching CBD oil's effects on pain, anxiety and sleep, and to zero in on which dosages work best on patients, he said. Currently, most subjects use 25-milligram CBD oil pills twice per day, with some taking as many as six of those per day, Cannon said.

Daw said other companies besides Endo-C have shown they are interested in carrying out cannabis studies. He also noted that those studies do not have to limit their research to CBD oil, as Endo-C has chosen to do.

"There's been at least one group out of Colorado that's expressed interest, and I've worked with them a little bit," Daw said. "There's been other … individuals who have also expressed interest, and I have told them flat out, 'Listen, I will help you find an (institutional review board). There are other national IRBs that are focused on cannabis studies, I will work with you to make those connections.'

"I'm willing to do whatever I can to help these studies take place. For me, it's always been about (getting) as much research going in the state as possible."

Others who are interested in studies specifically to do with CBD oil have opted to ask Endo-C to conduct those for them, saying it is more cost-effective that way, according to Cannon. The organization has "three or four studies we've lined up," he said, each with a slightly different setup.

Independent board?

Stenquist said she's concerned the institutional review board tasked with overseeing the ethics of Endo-C's research does not have the independence it needs to do its job. Institutional review boards are typically used to review the safety and ethics of studies with human subjects.

"It is a little problematic. It doesn't pass the gut check. The IRB is run by the same place that is producing the study and the product, so it's a little weird that there isn't an outside individual checking with this company to make sure that they're following protocol," Stenquist said. "So it is a concern for us."

Under the law passed last year, a study must have the approval of an institutional review board to go forward with any study, and such a board must be properly registered with the U.S. Department of Health and Human Services.

Cannon told the Deseret News that Endo-C assisted in forming the board, but he insisted it operates independently.

"The law federally and nationally is complicated, so getting an institutional review board to approve that was like the tough nut, so we (at Endo-C) actually helped a group of people come together to form a board," he said.

"They are independent. … They're available to review other (cannabis research groups)," he said, if such a group were to form and reach out to them.

Stenquist also referred to others who had posted concerns online about the the institutional review board having the same listed address as Endo-C researchers.

Asked about that, Cannon responded, "They did need an address, and they used our address for a while. So we helped them get in business."

Motivations

Daw believes HB130's critics aren't viewing the issue on its own merits, but rather through the lense of their disagreements with him on cannabis issues more broadly.

"I suspect people are suspicious naturally and possibly want to divert attention from the fact that there's patients in Utah getting high-quality (CBD oil) and seeing results. There's things that are happening right now," he said. "They may want to portray an attitude (that) the state's doing nothing (and so) we need this ballot initiative."

Besides Cannon, another ardent defender of Daw's intent with cannabis legislation is a vocal member of the state GOP, former Utah County Republican Party Secretary Jeremy Roberts.

"Brad Daw is such a good man; he is the salt of the Earth. … It's an absolutely desperate, horrible thing when we start questioning motives," Roberts told the Deseret News.

Roberts is the founder of Medical Cannabis Payment Solutions, a business describing itself online as a "proprietary merchant processing system designed to serve the monetary demands of the state-legalized cannabis market," and has himself been talking with legislators this year about his ideas for broadening medical cannabis legalization in Utah.

Roberts suggested that those who strongly support the medical cannabis ballot initiative may have a hard time viewing him fairly because he "wants to move slower" on the issue than they are willing to accept.

"Why does that make him the enemy?" Roberts asked.

Daw's own role as a drug abuse prevention activist is perhaps most illustrative of his and Stenquist's divergent views on the representative's credentials as an appropriate champion of medical cannabis legislation.

Stenquist casts a skeptical eye on Daw's position as "policy task force chair" for a Utah County organization called SMART — for Substance Misuse and Abuse Reduction Team — which states on its website that its mission "is to prevent and reduce alcohol, marijuana and prescription drug misuse/abuse among youth."

Referring to Daw's leadership position with that group, Stenquist said in an interview that having him oversee state cannabis policy is like "the fox guarding the henhouse" and that "Rep. Daw … is a very known and proud prohibitionist; he doesn't like cannabis."

"I will reiterate this again: Rep. Brad Daw is not a supporter for us on this issue," Stenquist said in an email.

But Daw views things much differently. He sees his standing with drug abuse prevention advocates as a credit to his name. Those groups can feel confident, he said, that he is approaching the issue of medical cannabis with prudence in mind.

"I've had a very long history of working with prevention communities trying to stop drug abuse, and so I'm someone I believe they trust not to let things get out of hand," he said. "So I'm trying to wear both hats here. And it seems to me like if there's something that brings relief to people, if there's a way to help, then we as lawmakers are obligated to do what we can to make that happen.

"Now, am I doing it as fast as the initiative folks want? No. Am I doing it faster than some folks in law enforcement want? Yeah, I am. And so we have to find that happy middle ground that says let's move this forward in a way that brings us all along."

Existing research

Calls for more research are the main refrain from those who oppose the Utah Patients Coalition ballot initiative, which states it would give those suffering from certain conditions wide access to the cannabis plant if passed by the state's voters in November.

Those calling for more studies include the Utah Medical Association, Gov. Gary Herbert, Daw, and conservative think tank Sutherland Institute, among others.

The state Legislature last year also set aside $500,000 for a double-blind, placebo-controlled study into cannabis' effects on pain, to be conducted by the Utah Science and Technology Research initiative with the help of University of Utah researchers. Those overseeing that study have said its preliminary results could be ready for presentation by as soon as the end of the general legislative session.

But the Utah Patients Coalition campaign, as well as TRUCE, have expressed deep unease as to whether further cannabis research in Utah is being used as a shield against legalizing a substance that they say has been shown to be demonstrably safe via rigorous research around the world.

DJ Schanz, the director of the ballot initiative campaign, has questioned whether the state-funded clinical study was itself more of a "delay tactic" against medical cannabis legalization than a good faith effort at contributing to the body of research into the plant.

In a statement on its website, the Department of Public Safety has said it "acknowledges that there is information supporting the clinical use of marijuana, (but the department) has some preliminary concerns regarding a more broadly defined medical use of marijuana in our state and the negative impact it could have on public safety."

The agency cited federal data showing a large increase in traffic fatalities where one of the involved drivers tested positive for marijuana was up significantly in Colorado in 2016 compared with 2012, the year that legalization of medical cannabis was passed there.

The Church of Jesus Christ of Latter-day Saints also shared concerns shortly after the ballot initiative paperwork was filed last year that "legitimate questions regarding the benefits and risks of legalizing a drug that has not gone through the well-established and rigorous process to prove its effectiveness and safety."

The LDS Church statement also said at the time that "the difficulties of attempting to legalize a drug at the state level that is illegal under federal law cannot be overstated.""

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"Accordingly, we believe that society is best served by requiring marijuana to go through further research and the FDA approval process that all other drugs must go through before they are prescribed to patients," that statement said.

Despite those organizations' misgivings, however, a Utah Policy poll conducted in November shows 73 percent of Utahns answered yes when asked whether they support "doctor-prescribed use of nonsmoking medical marijuana for certain diseases and pain relief."

Those polled who answered yes to that question included 97 percent of Democrats, 80 percent of independents, and 61 percent each of Republicans and Mormons who self-identified as "very active."