One-quarter of patients with type 1 or type 2 diabetes have reported using less insulin than prescribed due to high costs, a new Yale University study finds.
For patients with diabetes, insulin is a life-saving medicine and an essential component of diabetes management, yet in the past decade alone, the out-of-pocket costs for insulin have doubled in the U.S.
The study also found that 39% of those patients experiencing cost-related underuse of their medication, said they never discussed this reality with their healthcare provider.
“It’s hard to say why they haven’t [discussed the cost]- it could be that they are generally uncomfortable talking about cost,” says Pavithra Vijayakumar, co-first author, and Yale medical student, “or they would rather deal with their insurance companies directly, or they feel embarrassed about telling their provider that they haven’t been taking their insulin as prescribed.”
Regardless of the reason, Vijayakumar feels that it would be easier for patients to talk about these concerns if providers are aware and specifically ask their patients if they have been able to afford their insulin.
“You might have heard stories of patients rationing their insulin,” says the senior author of the study, Dr. Kasia Lipskan.
“The stories are really powerful, but they don’t tell us how common this problem has become. Our findings show that these are not isolated incidents and that skimping on insulin is frighteningly common,” she says.
As clinicians, she emphasizes, “we have to advocate for change because the status quo is simply cruel and not acceptable.”
How was the Study Conducted?
Researchers surveyed a diverse sample of patients from across New Haven County, Connecticut, who use the Yale Diabetes Center for treatment.
They asked patients about many different types of cost-related insulin underuse: using less insulin than prescribed, trying to stretch out one’s prescribed insulin, taking smaller doses of insulin than prescribed, stopping the use of insulin, not filling an insulin prescription, and/or not starting insulin.
One in four respondents indicated they’d done at least one of those underuse behaviors in the past year due to insulin’s out-of-pocket cost.
“The data we collected speak loud and clear to the fact that cost is a huge barrier to insulin accessibility,” says Vijayakumar.
“I hope this spurs more action to help patients afford this life-sustaining medication,” she adds.
The findings of the Yale study are confirmed by T1International, a non-profit that supports insulin access for all.
They conducted a survey this year looking at out of pocket cost with over 500 respondents in the U.S.
They also found that at least 1 of 4 people in the U.S. have had to ration their insulin due to high cost.
The organization plans to publish their detailed findings in 2019.
Insulin Underuse and Glycemic Control
The Yale survey found that the quarter of patients who’d indicated they engaged in any type of insulin underuse were much more likely (43% versus 28%) to have poor glycemic control, an important indicator of the effectiveness of diabetes management.
Additionally, they found that lower-income patients were more likely to report cost-related underuse, and nearly two-thirds of those patients reported that they also experienced difficulty affording other diabetes management equipment.
“It was really eye-opening to hear patients’ stories as they turned in completed surveys,” said Darby Herkert, co-first author of the study and Yale undergraduate.
“I’ve worked in various global health settings, but this brought home to me how much patients struggle with costs right here in New Haven.”
List price VS. Net Pricing of Insulin
T1International believes that the attempt by the “big three” insulin manufacturers to push focus onto other players in the complex system is a tired trick to avoid addressing the fact that these companies set the list price of their insulin.
“Regardless of what happens in between,” says Elizabeth Pfiester-Rowley, founder and director of T1International, “these companies are making billions of dollars in profits, and they have the power to lower the price.”
She acknowledges, the system is complex, “but insulin manufacturers are at the top of the supply chain,” she says, “and they have the power to set a more affordable price.”
“Not to mention,” she says, “many people we work with do not have insurance or are on high-deductible plans, so they are subject to paying list price which is completely unaffordable.”
As for what should be done, Pfiester-Rowley says laws must change to ensure full transparency throughout the supply chain and, ultimately, lower prices.
“For this to happen, more patients must find their voice and speak out,” she says.
And, this is already happening all over the U.S.
#insulin4all advocates are organizing, demonstrating and meeting with legislators at the local, state, and federal levels to discuss price transparency, rebate systems, gag clauses, drug importation, and other cost-related topics.
They are going to town halls, community health fairs, and conferences.
Groups like KOI#insulin4all are engaging the public and gaining commitments from legislators and candidates to tackle this crisis.
These advocates, Pfiester-Rowley says continue to demand accountability through action and through their powerful stories.
As for solutions from the Yale researchers, they say just asking about insulin coverage and affordability is a good strategy for individual providers in a one on one setting to help address cost-related insulin underuse.
“Working with patients to try to find a regimen that is covered can also help, which may include connecting patients with supplemental social services,”Vijayakumar says, “however, providers may feel that they don’t have time in every encounter to address these issues – more structural solutions, like funding for social workers and care coordinators in clinics, and better and more stable coverage of insulin from insurance companies, would be ideal.”
The research Yale article was published in JAMA Internal Medicine.
- One in four patients says they’ve skimped on insulin because of the high cost. EurekAlert (2018, December 3). Retrieved from: https://www.eurekalert.org/pub_releases/2018-12/yu-oif120318.php