Roger Roehl four years ago found the "silver bullet" for leukemia — a medication called Gleevec.
Roehl, of Mandan, was 64 years old and had a state health insurance plan that covered the life-saving medication minus a $10 copay. But when he turned 65 and enrolled in Medicare, the price of the drug skyrocketed to $2,400 for a 30-day supply.
Roehl, a retiree living on a fixed income, couldn't afford the medication, so he stopped taking it. He was warned the leukemia — which was in remission — would come back.
Then, a brochure came in the mail from a Canadian pharmacy advertising the drug for a fraction of the price — $684 for 30 days. He purchased a three-month supply and got it in the mail days later.
"There are just so many inequities (in prescription drug prices)," he said. "To go from paying $10 to $2,400, that's a tough pill to swallow."
Roehl joins an unknown number of North Dakotans who seek out lower drug prices in other countries, particularly Canada. Buying his medicine from across the border saves Roehl roughly $20,000 a year.
The pharmaceutical industry has long maintained that high drug prices are necessary to fund expensive research and development of new drugs.
Federal and state legislation has been proposed in recent months to combat the rising cost of prescription drugs and to increase price transparency. In Congress, it remains to be seen what, if any, legislation could pass.
Members of North Dakota's all-Republican congressional delegation have signaled their support for various bipartisan measures making their way through Congress aimed at lowering prescription drug prices.
These include the Prescription Drug Pricing Reduction Act, introduced by Sen. Chuck Grassley, R-Iowa, and Sen. Ron Wyden, D-Ore., and the Lower Health Care Costs Act, introduced by Sen. Lamar Alexander, R-Tenn., and Sen. Patty Murray, D-Wash.
North Dakota Sen. John Hoeven said in a statement that two bills he co-sponsored to increase prescription drug price transparency and to "close existing loopholes hindering the development of generic drugs" were included in Alexander's legislation.
North Dakota Sen. Kevin Cramer said he also supports Alexander's and Grassley's bills, and Rep. Kelly Armstrong said he also has backed similar drug-pricing legislation in the House.
None of these bills have made it to a floor vote.
Buying from Canada
Roger and Vicki Roehl thought they prepared for retirement.
Both had successful careers: Roger Roehl headed the mapping section for the state Department of Transportation, and Vicki Roehl was a high school English teacher and a counselor. They had saved up for retirement and hoped to travel the world.
"Haven't done much of that," Roger Roehl said.
His leukemia diagnosis brought their travel plans to a halt. But the chemotherapy drug Gleevec has brought him and his wife newfound optimism.
Roger Roehl is in "hematological remission," meaning: "The blood is normal and will stay normal as long as I take this pill," he said.
"It's working. It's the silver bullet of leukemia," he said, adding he's been taking the pill for three years.
Roger and Vicki Roehl now have to budget for a three-month supply of the drug and tap into their savings to afford it, even with the north-of-the-border savings.
Purchasing prescriptions drugs from Canadian pharmacies is a phenomenon not commonly talked about in the United States. The U.S. Food and Drug Administration prohibits importing prescription drug medication, except for people who buy drugs in small amounts for personal use.
The cost of prescription drugs is lower in Canada and some other countries because their governments run their health care systems and are able to negotiate prices with drug manufacturers.
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In researching buying prescription medications from Canada, Roger Roehl found that other North Dakotans do it, as well. He said he's aware of a bus in Minot that takes groups of people across the border.
Some states have enacted laws that allow for prescription drug importation from other states, but no such law exists in North Dakota.
In July, the Trump administration announced plans to allow for pilot projects developed by states, pharmacies or drug manufacturers to import certain prescription medications from Canada. It's unclear when these programs could be implemented, as the administration has to go through a rulemaking process that could take months to years.
In North Dakota, lawmakers are looking to jump-start legislation related to prescription drug price transparency.
During an interim Health Care Committee meeting last week, the group's chairman, Rep. George Keiser, R-Bismarck, proposed a bill draft modeled after drug transparency legislation that passed in Texas this year.
The bill draft requires information be reported by drug manufacturers, pharmacy benefit managers and health insurance companies. Pharmacy benefit managers, or PBMs, are referred to as middlemen in the prescription drug supply chain who negotiate prices with drug manufacturers for health care companies.
The bill would require manufacturers to report every time the price of their drugs rises more than 10% in a year or 40% or more over five calendar years.
PBMs also would be required report data annually, including the amount of "rebates" they collect from manufacturers, and health insurance companies also would have to report data on prescription drug costs.
The information would be submitted to the state Board of Pharmacy and then published on a public website.
Committee members last week mostly expressed support for the proposed legislation, which still has a long way to go before it's introduced during the 2021 legislative session. Keiser told the Tribune the bill likely will go through a number of amendments.
"What this is attempting to do is begin to bring transparency to the marketplace and the justification for (increasing drug prices)," Keiser said. "The key to this legislation — the most important element for me — is, you want to increase (the cost of) a drug 10% within a year, that's fine, just tell us why."
The data will in turn help state health policymakers understand the problem and look for solutions, according to Keiser.
"The public doesn't know what's involved. But until we can provide information for policymakers and the public, we can't take the next step," he said.
Several states have enacted laws in recent years related to prescription drug prices, according to the National Conference of State Legislatures. Keiser said his bill draft is the first of its kind in North Dakota.
Lobbyists for the pharmaceutical industry contend that drug-pricing and transparency bills don't result in actual savings for consumers, and that others in the supply chain, such as PBMs, contribute to price increases.
'An important first step'
Josh Askvig, state director of AARP North Dakota, spoke in support of Keiser's bill draft at the committee meeting last week. Prescription drug prices are "a very high priority" for his group and a recurring issue he hears among its members.
Askvig cited data from his organization that shows the average annual cost of prescription drugs in North Dakota increased 58% from 2012 to 2017, while the average income for North Dakotans increased only 6.7%.
AARP recently launched a nationwide campaign aimed at lowering prescription drug prices. Askvig said his organization and its members have been advocating for a number of reforms at the state and national level.
"We know that states can't solve the problem alone, but knowing this committee's willingness to dig into this, we think, is an important first step," Askvig said.