SALT LAKE CITY — After years living outside the state, Moira Jackson-Drage moved back to Utah to be able to better spoil her three grandchildren and be closer to family.
But pain from fibromyalgia and other conditions is holding her back.
Medications that would help her myriad symptoms would cost hundreds of dollars each month, even with insurance and a lower dose than what she needs.
Without it, she says she does what she can to live a barely normal life.
"I deal with the pain. I deal with the neuropathy. I do what I can," Jackson-Drage, of Magna, told the Deseret News. She's tried more affordable substitutes and they haven't worked or bring on even worse side effects.
"I feel like I've become a drug cabinet," the 50-year-old said, adding that the runaround only adds to her anxiety and depression issues. The financial strain also doesn't help.
Federal documents show that pharmaceutical giant Pfizer increased the price of Lyrica — the drug Jackson-Drage needs to adequately control her pain — by 145 percent from 2009 to 2015, with an increase of 19.3 percent in 2017. She feels there's no reason for it.
"We went without a lot of things trying to afford the medications over the years," Jackson-Drage said, adding that she just wants it to be "more doable."
"What else can I do," she said. "I just wish they could make it affordable for everyone."
Rep. Norm Thurston, R-Provo, has been trying to plant the seed for Utah to become the first state in the nation to implement a wholesale drug importation program. He believes bringing large quantities of certain drugs across the border from Canada will drive prices down and forge better competition in the market here.
"Rising spending on prescription drugs is putting a strain on a lot of people," he told the Utah House Business and Labor Committee on Thursday. Thurston proposes HB267 , the Prescription Drug Affordability Act, that he says will help "reduce the burden of prescription drug costs on taxpayers and families."
He's asking his colleagues at the Capitol to ask the federal government for permission to get the ball rolling, since federal statute already allows for it.
"We don't live close to any borders," Thurston said, adding it would cost a lot for individuals to go to Canada or Mexico for the medications themselves, though the Public Employees Health Plan has already been sending people to Tijuana for certain really expensive drugs at a fraction of the cost that they're available to patients in the states.
"The United States buys 40 percent of drugs in production. We're their best customer," Thurston said. "Why isn't the best customer getting the best price?"
Global business and marketing strategies for pharmaceutical manufacturers are not disclosed, so it remains largely unknown why other countries, such as Canada, pay less for the same drugs.
"We think there is another, better way," said Dana Malick, senior director of health policy for the Pharmaceutical Research and Manufacturers of America, a trade association representing 38 biopharmaceutical research and biotechnology companies in the country. She said importing drugs could disrupt the United States' tightly regulated supply chain.
Malick said other methods, including rebates at the point-of-sale for many drugs sold in the U.S., "could lower patient cost without jeopardizing health and safety."
She said savings could come at a cost to patients if the deal goes through.
A drug regimen that extended her own father's life, she said, for three years after a stage 4 colon cancer diagnosis did not become available for use in Canada until well after he had died in America.
Malick also said medication approval processes and price controls are negotiated differently throughout the world, contributing to a wide range in drug prices.
Having something available that could help, but is out of reach, nearly paralyzes Jackson-Drage. She said it's unfortunate that she has to go without.
"There are thousands of us who face the same choices … to buy our prescriptions or live," she said.
Jackson-Drage and her husband, who were married later in life, have more income now than when they were each raising their families separately, and they still have to pass on the expensive drugs that would most likely make it so she could hold down a job and function more normally as a member of society.
The back pain is so bad some days that she can't sit or stand. Mostly, on those days, she just tries to sleep the pain away.
"I wouldn't wish it on my own worst enemy," she said of the condition she's had for more than 30 years. "I never know if it is going to be good day or a bad day, though, I don't have good days any more."
It took decades for doctors to nail down an official diagnosis, what with the migraines and arthritis-like illnesses that have popped up; and establishing with a provider and getting on a good treatment regimen, she said, takes years. She said it's "really crappy" that good health is so out of reach.
"There are days that I don't function, period," Jackson-Drage said. Her two cats have provided endless emotional support.
She moved from Chicago in November, as her husband's son just had another baby. She'd love to have the energy to have them over for dinner and establish relationships with the kids.
Jackson-Drage started speaking out because she couldn't do much else.
Thurston's bill would "help Utah patients avoid making the difficult decision to afford their life-saving drugs or skip doses," said Patients For Affordable Drugs Now, a national patient advocacy group based in Washington, D.C., which spoke out on Utah's efforts Thursday.
"Since Big Pharma insists on gouging Americans, we should all be able to import safe bargains from abroad," the organization's founder, David Mitchell, said.
New competition created by importing drugs, he said, would put pressure on U.S. drug manufacturers to lower their prices.
Committee members questioned liability and whether regulations are already in place at the federal level. But Thurston said the U.S. Food and Drug Administration would legally have to sign off on the import of any medications, making it, unquestionably, a safe and reliable option.
"The FDA is not going to approve a process that is not safe," he said.7 comments on this story
A "long list" of potential imports, Thurston said, contains mostly drugs used to treat symptoms of multiple sclerosis and arthritis. It would not include opioids or biologics.
Thurston estimates the state would save $100 million on prescriptions for public employees alone, depending on the types and quantities of drugs brought into the state.
"It saves everybody money, except the pharmaceutical companies, apparently," he said.
The bill remains in control of the committee, as time ran out on Thursday and the routine meeting was adjourned without a decision.