On Sunday morning, a group of West Virginians will depart from Morgantown en route to Niagara Falls, Canada, but they aren’t going to see the sights. Instead, they are going in search of affordable insulin.
Roughly 15 percent of West Virginians suffer from diabetes and depend on insulin to keep them alive, according to the state Department of Health and Human Resources. In the last decade, insulin prices nationally have been rising, making it more difficult for some to access the medication, no matter their health insurance status.
According to the Health Care Cost Institute, an individual with Type 1 diabetes paid an average of about $6,000 in 2016 for insulin. Since then, prices have only gone up. Numerous stories of individuals across the nation rationing their insulin due to the high costs have made headlines in the last year. Some have died.
“Insulin isn’t something you can go without, or skip when you can’t afford it,” said Tammy Owen, a volunteer with the West Virginia Juvenile Diabetes Research Foundation and whose son lives with Type 1 diabetes. “For someone with diabetes, it’s like air. Like water. It’s a basic need, and there are barriers in place that make it inaccessible for many.”
The insulin caravan was organized by state health care activists with support from delegates Barbara Fleischauer, D-Monongalia, and Jordan Hill, R-Nicholas. It’s supported by the West Virginia arm of the national Insulin For All organization, which aims to make the lifesaving medication available to all who need it, no matter their financial circumstances.
The group embarking on the trip, which is expected to take less than five hours each way, hopes to make the point that people living with diabetes should not have to travel to another country to affordably access their medication.
“It is really shocking how much some people, especially Type 1 diabetics, are having to pay for life-saving medicine. I do not use the word shocking often, but hearing these personal stories has really affected me,” Fleischauer said in an email.
In the past two months, Fleischauer has been attending news conferences about the caravan throughout the state. She has heard story after story about how people’s copays for their prescriptions continue to rise — up to $700 sometimes for each purchase of the medication.
In Canada, no prescription is necessary to purchase the drug at a pharmacy, and insulin prices there are reported to be one-tenth of what they are in United States. Individuals in other states have also organized insulin caravans to Canada to demonstrate the possible savings, as well as the issues apparent with the health care system in the U.S.
For this trip, though, some legal questions remain — namely how the individuals are allowed to take the insulin back into the United States. Past caravans in Minnesota have performed the trip without problems, and per federal code, customs agents cannot enforce an importation ban if the medication coming in is for one individual who has a valid prescription.
Owen, a Charleston-based attorney, said she’s been looking into the law and believes, since it’s written so vaguely, that it will come down to the discretion of the customs agent who greets the caravan on its way back across the border. Fleischauer urged all attending to bring copies of their prescriptions.
Tickets for the caravan cost $100, however through donations and scholarships, no one living with diabetes had to pay. Fleischauer said there would be West Virginians from across the state on the trip, as well as some people from Virginia.
“It is horrible what [people with diabetes] have to go through, not just the financial part, but the worry of how your kids will be able to manage when you are gone,” Fleischauer said.
This was a point especially poignant for Owen. Her son, 26, lives on his own with a full-time job and health insurance in Florida, but he still sometimes struggles to make the payments for his medication.
“Health insurance, it doesn’t matter at a certain point. He’s looking at $1,000 a month at times, just for something to keep him alive. Not many people his age have that disposable income,” Owen said. “We’re lucky that I can help him, but not everyone has that. A lot of people don’t, especially here in West Virginia, where there are many unmet needs.”
According to the DHHR, West Virginia’s southern counties carry the highest rates of diabetes diagnoses in the state. Those are also the counties that have, on average, some of the lowest income rates.
Fleischauer said she hopes she can work with health care advocates to introduce a bill during the 2020 legislative session that would cap the copay on prescriptions for insulin, making it more accessible for those who need it. Similar legislation has been passed in Colorado.