Liz Donehue was a 22-year-old college senior when she was diagnosed with Type 1 diabetes.
Although she was covered by state-provided health insurance, Donehue said she still had to go through the hassle of getting prior authorization from her endocrinologist and her insurance company every three months when she needed a refill on her insulin supply. The process took so long that she repeatedly risked running out of insulin, causing her a lot of anxiety.
Overwhelmed by trying to navigate the health care system and by the high costs of the insulin she needs to survive, Donehue eventually moved to the Czech Republic to ensure she had dependable and affordable access to insulin.
Because Donehue now lives overseas, her mother, Marcee Stone-Vekich, has been traveling to Olympia to tell her daughter’s story and urge state lawmakers to pass legislation that would cap the cost of insulin for diabetic patients.
“She is now a health care refugee,” said Stone-Vekich. “By living in a former communist bloc nation she has access to health care and supplies at virtually no cost to herself, except the cost that she is thousands of miles from her home.”
The legislation Stone-Vekich supports, Senate Bill 6087, had a public hearing last month before the Senate Health & Long Term Care Committee. The measure, sponsored by state Sen. Karen Keiser, D-Des Moines, limits a patient’s out-of-pocket expenses to $100 for a 30-day supply of insulin.
Public testimony was also open for a slate of other proposals Keiser sponsored that would attempt to make prescription drugs more affordable.
One bill would create a pathway for other Washingtonians to do what Stone-Vekich’s daughter ultimately had to do: obtain prescription drugs at a lower cost from another country.
The legislation would simply provide a “mechanism” and a “framework” to import prescription drugs, Keiser said. That way, if the federal government decides to allow a prescription drug trade between Canada and the U.S., for example, the state already has a system in place. The Washington Health Care Authority, the state Pharmacy Quality Assurance Commission and relevant federal agencies would be responsible for designing a wholesale prescription drug importation program that complies with all federal requirements.
Keiser said other states, including Florida and Maine, have passed similar legislation.
A 2017 report released by the National Academies of Sciences, Engineering, and Medicine noted that rising prescription drug costs in the U.S. are making it increasingly difficult for people to afford their medications. The report said a lack of transparency in the prescription drug supply chain makes it difficult to predict the effects of any policy change.
Marcia Stedman, who represents Healthcare for All Washington, called Keiser’s bill to help facilitate importing drugs from Canada “a step in trying to get a handle on our prescription drug prices.” Stedman, who testified in favor of the bill, said the measure highlights the desperation of people who go to Canada to fill their prescriptions.
“It’s shocking to our sensibilities,” she said. “In America we are accustomed to thinking of ourselves as the best at everything…. This necessity to go to another country and rely on them for our basic needs should be repugnant to all of us.”
Critics of the legislation argued that there aren’t enough drugs available in Canada for the amount of medication Americans need. “Our nation of 38 million people does not have the pharmaceutical supply for your 329 million people,… The numbers don’t work.” said John Adams of the Best Medicines Coalition, a Canadian nonprofit.
Adams noted that he and other Canadians appreciate Americans “bold sense of confidence and pride in self-reliance.”
“That’s why it’s disorienting to witness politicians from both parties looking to our country to help make your medicines more affordable,” he said.
And, as mentioned by other lobbyists during the public hearing, the legislation wouldn’t cover insulin.
The state Department of Health said the high cost of treatment can often be prohibitive for diabetics. Over 6,000 Washingtonians died in 2017 from diabetes or diabetes-related complications. It was the seventh leading cause of death in the state.
Another mother who testified in support for Keiser’s bill capping insulin prices to $100 said her son’s supply of insulin costs more than $900 a month, not including the supplies needed to administer the hormone. She said the high costs are what leads some diabetics to ration their insulin supply for the month.
However, insurance lobbyists claim Keiser’s proposal to cap insulin prices would only encourage manufacturers to increase the price they charge insurance companies while charging people without insurance the list price. Lobbyists from Kaiser Permanente, America’s Health Insurance Plans and Association of Washington Healthcare Plans testified in opposition to the bill, citing a concern that it would force them to increase insurance premiums for consumers.
Keiser disagreed, estimating that the cost increase would amount to only about 50 cents per member per year.
Republican Sen. Randi Becker from Olympia voted against Keiser’s insulin cap bill in committee but is co-sponsoring Keiser’s legislation to import prescription drugs from Canada. She declined an interview with Crosscut about her position on the bills.
Historically, the creators of insulin sold the patent for the life-saving hormone for only $1 in order to keep the cost affordable for diabetic patients. Eli Lilly, Novo Nordisk and Sanofi are the three manufacturers who hold patents on the drug.
Donehue, who now lives in Brno, Czech Republic, said in an email that the insulin she gets in the Czech Republic is the same formula and brand produced by Eli Lilly in the United States, except that it has a Czech label.
Donehue said importing drugs from another country “speaks volumes about how backwards and profit-driven our health care system is.” She explained that a vial of insulin costs $6 to produce, yet she was paying $336 out-of-pocket per month while she was living in Washington.
That same vial is free to her in Brno.
“People are literally dying because they cannot afford the medication manufactured within the United States,” Donehue said. “It’s really a shame, a complete embarrassment on the stage of the developed world,” she added.
Stone-Vekich said that she hopes bills like Keiser’s will eventually allow her daughter and other “health care refugees” to return home.
“She would like to be home and I would like to have her home,” said Stone-Vekich, who has been able to see her daughter only three times since she left the United States. “Her courage just blows me away.”
By Shauna Sowersby