[E]lia Spates Marquis has Type 1 diabetes. Every month, she pays $2,015 out of pocket and more than $1,200 in insurance premiums for the insulin she needs to survive.
But she has a husband and three children, and sometimes, that’s just more than she can afford. So to cut back on costs, she cuts back on insulin.
Then one night, she had a seizure in her sleep. Another night, when her husband tried to wake her up in the morning, she was unresponsive. Her endocrinologist finally told her that her blood sugar was “out of control,” so she started taking her full dose of insulin again, despite the financial burden on her family.
“The financial side of the insulin is as much or more of a burden than the actual disease itself,” Spates Marquis said. “I am far from the only diabetic who has cut insulin usage to cut the ridiculous cost being incurred. In fact, 45 percent of diabetics at one time or another will compromise their care to cut their cost.”
On Wednesday, Rep. Peter Welch, D-Vt., stood alongside Spates Marquis and other diabetes doctors and patients at Community Health Centers of Burlington to unveil new legislation to authorize the importation of insulin from countries like Canada, where the drug comes at a fraction of the price compared to the United States.
The legislation would allow patients, pharmacists and wholesalers to initially import approved insulin only from Canada. After two years, the bill stipulates that the FDA would expand importation to all countries deemed to have comparable safety standards to that of the U.S. All importers would be FDA inspected and certified, and patients would still be required to have a prescription, and still be eligible for insurance coverage.
“Our country is the only country that does not play a constructive role on the behalf of our citizens to push back on monopoly pricing, rip-off pricing by the pharmaceutical industry,” Welch said. “And it’s pretty awful.”
Welch said insulin is unique because it’s been around since 1922, without a lot of new innovation, so pharmaceutical companies can’t point toward research costs to justify the price hikes, like they tend to do with other drugs.
Between 2012 and 2016, the average cost of insulin for Type 1 diabetics doubled, Welch said.
“There’s no excuse for us to impose these high prices on individuals, our friends, our neighbors, who need this life-saving medication,” Welch said.
Dr. Joel Schnure, the director of endocrinology at UVM Medical Center, said the price problem stems from the fact that there are only three big pharmaceutical companies that make insulin in the U.S., so whenever one raises their price, the others follow.
The problem is compounded, he said, with the middlemen — the insurance companies and pharmacy benefits managers who get kickbacks and rebates to determine which kinds of insulin they will cover. And changes in coverage mean people with diabetes are frequently forced to change the kind of insulin, with very little notice.
Spates Marquis said her insulin is switched all the time, even as recently as yesterday when she went to the pharmacy to pick up her prescription. And to add insult to injury, her new brand costs $5 more than the last.
“It becomes a quagmire and the price continues to rise, and it’s basically outrageous,” Schnure said.
Welch said the issue should be nonpartisan — that his Republican colleagues know just as many diabetics struggling with the costs of insulin as his Democratic colleagues do. He met with President Donald Trump about the issue in 2016, and said Trump was very open to the idea. Last week, he returned to the White House to meet with acting Chief of Staff Mick Mulvaney, who reportedly also had good things to say about the bill.
Welch said he thinks having Rep. Nancy Pelosi, D-Calif., as speaker of the House will make a big difference in being able to get the legislation to the floor.
“We do not have to have a health care system that causes this kind of heartache. We don’t have to have it,” Welch said. “But it’s going to take public action to make it right.”
