Utah lawmakers look for drug cost solutions as one warns: 'People are going without their medicines and bad things are happening’

(Rachel Molenda | The Salt Lake Tribune) Moira Jackson-Drage in her home in Magna, Utah, on Friday, March 8, 2019. Jackson-Drage has fibromyalgia and neuropathy and struggles to afford her medicine. Her cats — B'Lana and Tiki — provide her with comfort, especially when she is having particularly bad days because of her chronic pain.

Utah lawmakers were considering taking the first steps toward importing prescription drugs from Canada, where prices for some medications are a fraction of what is charged in the United States.

But after pharmaceutical industry representatives warned of potential challenges under federal law, state senators decided it was not worth trying.

“It’s not gonna happen,” said Senate Majority Leader — and pharmacy owner — Evan Vickers, R-Cedar City, at a Friday committee hearing where HB267 failed 2-5. “I’m having a hard time even justifying trying to go through the effort to do an application” to federal officials.

It is generally illegal to import drugs into the United States, but a never-before-used law gives the U.S. Secretary of Health and Human Services authority to approve requests from states or other entities. Vermont began working on an application last year, and 14 states had been considering similar measures this year.

“We were ahead of everybody until Friday,” said Rep. Norm Thurston (R-Provo), who introduced the bill both this year and last. In 2018, it was shelved while the state health department studied ways to safely import drugs from Canada.

This year, the measure won broad support in the Utah House, where it passed 63-6, and from some Utah medical groups and the AARP.

“There are thousands of us across Utah that face the same choices: whether [to] buy prescriptions or ... have a roof over my head,” said Magna resident Moira Jackson-Drage, who spoke in support of the measure at a February committee hearing.

Jackson-Drage, 50, suffers from fibromyalgia and neuropathy, and Lyrica has been the most successful treatment. It cost about $150 per month when she first began taking it about a decade ago.

Now, the price is $550 per month, Jackson-Drage said. That’s for about a third of the dose that her doctors would like her to take — and after a $4,000 deductible, she said.

“If I was able to buy them from Canada, I would be able to take the prescriptions,” Jackson-Drage told the committee.

(Rachel Molenda | The Salt Lake Tribune) Moira Jackson-Drage's medicine sits on the kitchen counter of her Magna, Utah, home on Friday, March 8, 2019. Jackson-Drage has been diagnosed with fibromyalgia and neuropathy and struggles to afford her medication.

Instead, she said in an interview, she has gone through a frustrating series of experiments with other drugs that are cheaper but don’t work as well for her.

“My legs feel like sometimes the skin is on fire, and that’s worse at night. I sometimes just have to walk through it until I get tired enough that I go to sleep,” she said. “There are days I don’t function. My husband comes home and finds me in the same nightshirt I was in when he left.”

Most devastating, she said, is the ever-diminishing time with her grandchildren. When the pain and fatigue are too much, she said, she has to cancel plans with them.

“I just don’t tell them I’m going to do anything with them anymore because I’m going to break a promise.”

Canadian imports could save Utahns up to $100 million, Thurston said. The bill would have triggered an application from the state to HHS Secretary Alex M. Azar, who may approve the imports if U.S. regulators deem the drugs to be safe and if importing them would result in cost savings.

“I see no reason why we shouldn’t go down this road,” said Rep. Marc K. Roberts (R-Santaquin). “Costs are unbelievably high. Constituents all feel the same way.

“If not this, then what?” he asked the bill’s detractors.

Drug industry reps who have opposed the bill say it will be hard for Utah to get federal authorities to certify the Canadian drugs as safe. Federal law imposes “track and trace” requirements on prescription drugs in the United States, with numbered labels created by the manufacturer.

“The drugs that were meant for the United States are marked with our tracking and tracing technology,” said Dana Malick, spokeswoman for Pharmaceutical Research and Manufacturers of America (PHRMA), a trade group for the drug industry, during a February committee hearing. “It’s unclear how ... a U.S. licensed wholesaler would be able to distribute imported drugs, given they would not be compliant with the U.S. track-and-trace system.”

Malik also said it would be hard to find a distributor willing to work with Canadian imports, though Thurston said three different companies had expressed interest. Malik pointed to objections from the Healthcare Distribution Alliance, which has said that importing Canadian drugs would make the U.S. drug supply less safe.

“One of the main arguments I’ve heard against this bill is that it just is not safe to do this, and then objection after objection will be raised,” said Rep. Raymond Ward, R-Bountiful. “This isn’t a choice between something safe and not safe. What we are doing right now, today, is not safe. Right now, today, the prices of drugs and medications of not just a few but many medicines are so high that, not unexpectedly, people are going without their medicines and bad things are happening to them.”

Thurston said he intends to revive the measure in the future; for now, he said, he’s exploring options for other entities — such as a private investor or a health care system like Intermountain Healthcare or University Health — to apply for federal permission to import Canadian drugs.

“I’m having lots of discussions to see if we can figure out another way to do this,” he said.

Canadian imports are not the only cost-control the Legislature has been considering this session.

A separate measure, HB370, would impose restrictions on Pharmacy Benefit Managers (PBMs) — middlemen who negotiate between pharmaceutical companies and insurance companies to determine what drugs are covered by a plan and how much patients pay at the pharmacy.

With only three PBMs controlling 80 percent of the market, they are able to leverage rebates from the drug makers — but critics say drug makers raise prices to be able to offer more competitive rebates, which are pocketed not by patients, but by the PBMs and insurance companies.

“When it started off, it was a great idea — purchase power, we can purchase a bunch of prescriptions on behalf of the insurance companies and sell those back at a cheaper price to the consumer. And then I think they realized, if we keep this money and charge consumers the full price, we can make more money,” said Rep. Paul Ray, R-Clearfield, who introduced HB 370 to require PBMs to disclose publicly the rebates they obtain.

The rebates are kept secret from patients, so the public can’t know what drugs would cost if the prices didn’t include rebate payments to the middlemen. They have been blamed, in part, for out-of-pocket costs on drugs like insulin more than doubling for many patients in recent years.

“The people making the money is the PBM and the insurance company,” Ray said. “The consumer gets put on a plan where they’re paying the full price, plus the administrative cost. Then you’ve got the insurance company and the PBM splitting the ... profit off the drug.”

Ray in December announced a plan to forbid PBMs from collecting the rebates altogether, instead forcing them to pass the savings onto patients at the pharmacy on sales in Utah. But he said that bill needs more work and may be introduced at a later session. Azar has proposed a similar rule for drugs bought under Medicare and Medicaid.

“That’s not something I can do in a quick session,” Ray said at a February hearing, explaining why he was focusing on rebate disclosure requirements. The bill is set to move to the Senate after it passed out of a Senate committee on Friday.

Representatives for PBMs and insurance companies, who share the rebates paid by drug companies, spoke out against the bill.

“PBMs are that line of defense that insurance companies, but more importantly businesses, have to negotiate lower pharmaceutical costs,” said Frank Pignanelli, who represents the PBM giant Express Scripts and BlueCross BlueShield of Utah.

But at a committee hearing in February, Rep. Brad M. Daw, R-Orem, pointed out that manufacturers find ways to sell drugs for cheaper prices elsewhere. He questioned if they alone are to blame for higher prices in the U.S. or whether there may be additional factors influencing prices.

“I’m going to say this as bluntly as I can: When I see the exact same pill being sold in other countries for somewhere between one-fifth and one-tenth the price that it’s being sold in the United States, I cannot possibly for the life of me figure out how the pharmaceutical manufacturers are doing that, or why we should point the finger at them — or at least not exclusively,” he said.

“There’s some step in the process ... that we’re not hearing,” Daw said. “So this notion of transparency I think is absolutely crucial.”

During 2019, The Salt Lake Tribune is reporting on prescription drug prices in Utah with the support of the Association of Health Care Journalists’ Fellowship on Health Care Performance.