SALT LAKE CITY — Kristen Larsen switched from opioids to medical cannabis to treat a bad back and other injuries she suffered in a car accident.
"The cannabis took the edge off of the pain but also allowed me to feel," she said in an interview with FOX 13 News. "And after being on opioids for a long time, you’re just kind of numb."
Larsen said cannabis is much preferred. But lately, she's had to cut back on her doses. The cost is getting too high. It can cost her as much as $600 a month.
"Just like people have a hard time getting insulin and all of these things, it’s expensive," she said."Cannabis is a medicine and it's expensive. So there are times when I can afford to go into the dispensary and get it. But there are times when I can’t. I just have to be in pain. I have an uncomfortable feeling going to the black market. I just don’t."
Larsen said she notices a difference in cost, quality and variety of products in cannabis outside Utah. She is not alone. Patient advocacy groups tell FOX 13 News they regularly hear from patients who are still venturing outside the state or returning to the black market to keep costs down or get products they prefer.
"They’re going to the black market, with the caveat they feel a little more emboldened because they’ve got a card," said Christine Stenquist, the founder of Together for Responsible Use and Cannabis Education. "So we’ve got some weird mixed messaging the legislators, the policy makers really need to address."
Desiree Hennessy, the executive director of the Utah Patients Coalition, said she has heard similar.
"We've created hurdles and they’re just finding ways around them," she said of the state's system and patients. "So finding ways to keep them in the program so we can make this program better for everybody is the long-term goal."
It carries its own risks. Following voter approval of Proposition 2, the legislature overwrote the citizen ballot initiative with a more strictly-controlled medical cannabis program. Now, card-holding patients must purchase among 15 licensed dispensaries (called "cannabis pharmacies" by lawmakers) or face the potential of prosecution for marijuana possession. The pharmacies are limited in what types of product they can make available under state law. For example, smoking is not allowed but vaping is. Edibles are also restricted in the shape they can come in.
The Utah Department of Health & Human Services, which manages one aspect of the state-run program, is aware that some patients are dropping off. In data provided to FOX 13 News, the agency reported a 60% retention rate for medical cannabis card-holders.
"We’re pleased with that renewal rate. We’ve compared it to other states and it’s actually better than some states that we’ve compared it to," said Richard Oborn, the director of the Center for Medical Cannabis within DHHS.
For the 40% left, however, Oborn said the agency had no quantitative data that explained why patients had chosen not to renew. Informal feedback included reasons like forgotten username or passwords on a website, to cost of medical visits, cost of product or some do prefer the black market or out-of-state product.
Oborn said Utah-produced cannabis products are safe, tested and have gone through more vetting than black-market. The pharmacies also must have a pharmacist on staff to help patients based on their illness and treatment options.
"That may lead to a bit of a higher cost for a visit or for a product, but that is a cost we believe is necessary to help that patient along as they try to truly treat their medical condition," Oborn told FOX 13 News.
Hennessy said she would like to see some expansion of licenses for rural areas of Utah. Her group does fundraise to help provide some grants to patients to help with cost as they grapple with other medical bills, too.
"It's a very limited amount of patients we can help and the need is so great," she said.
A legislative work group has been re-examining how the state manages the program, holding meetings and soliciting feedback from cannabis growers and pharmacy representatives, patient advocates, medical groups and others. Public comment is also under way on whether DHHS should expand the number of dispensary licenses.
Stenquist said she would like to see more licenses made available across the state.
"When we see a free market thrive, you see quality go up and prices go down," she said, adding: "It’s frustrating because as advocates we want the industry to be successful. We want good quality product, we want a good relationship there."
Senate Majority Leader Evan Vickers, R-Cedar City, who runs cannabis legislation for the Republican supermajority in the legislature, said cost is something he is aware of.
"It looks like we’re pretty comparable. But we’re also looking at ways, maybe from a legislative perspective, we could ease some of the burden and some of the cost," he said in a recent interview with FOX 13 News.
In response to patient advocacy groups' concerns, the legislature tweaked laws to allow patients to hold a card for six months (instead of three), expanded who can recommend cannabis earlier this year, and DHHS created a cost comparison tool online as patients find health care providers willing to recommend cannabis.
"That availability has increased," Oborn said.
Larsen told FOX 13 News she wants patients to get more vocal about the program and for their elected leaders to listen.
"I just want the legislature to see us, hear us," she said. "Beyond the bureaucracy, beyond the red tape, beyond the money."
Sen. Vickers said he expects there will me more tweaks to the cannabis program. Each year, a bill is run to address issues that pop up.
"My goal is to simply have the very best medical cannabis program we can so we can entice patients to use the system we have in place," he said.
